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Hormone Treatment Decision

This feels like quite a poignant blog to write. Twelve months ago on the 8th August 2021, I wrote my first blog about my diagnosis. Tomorrow, I will take my blue matt and wear my green anti-slip socks for the last time. Radiotherapy finishes 9:30am tomorrow morning and next Wednesday will be my last oxygen therapy session – the culmination of a year’s worth of treatments and the roller coaster ride of emotions I experienced each step of the way. I will no longer have to rush from one treatment to the other taking up half a day each time! It almost feels like all the roads have come to meet in the middle now, or more specifically the end! I will write this blog and then take a break until the end of the year when I will have my various scans and meetings with the radiotherapy team, the oncology team and the surgeon to discuss how I’m healing, whether the cancer has all gone and what happens next.

I realise, if I was being more careful in sharing my story, I should have written in each blog some sort of disclaimer. For those who have followed me from the very beginning, I want to thank you for continuing to read, for supporting me along my journey and for metaphorically holding my hand throughout the process. It has been a great comfort knowing my story might be helping some people in whatever manner along the way. But, it is just what it is, a story, a series of entries from my Cancer Diary or C’s Diary of the things I have experienced along the way since I was diagnosed with Stage 3, Grade 2, Ductal In Carcinoma, ER+ PR+ HER2- Breast Cancer back in July 2021. In no way do I claim to know more than the doctors or the specialists in this very complicated and scary field of Cancer. I don’t want to ever mislead or misguide anyone through this minefield of information. This has been a very personal journey and every patient is different with a different outlook, different diagnosis, different immune system, different hospital, country/continent and different support structure.

What I have tried to do in writing my blog is to share the challenges one can face, as a cancer patient, and hope that it may help give confidence back to the patient and their families when making some of their decisions about treatment and the sorts of questions you can ask along the journey. You do not have to accept everything you are told but if you choose to challenge it is important to hire the right specialist team around you to support you in the upcoming important treatment decisions you’ll need to make.

I do understand, however, that for some – like me – knowledge can be key but, for others, it can be super overwhelming and some patients may just like the comfort of someone else making the decisions about their medical treatment for them. One dear friend only asked me the other day “wouldn’t it be easier and less stressful for you to just go along with what the doctors advise rather than researching and fighting each step of the way?” Either way is ok of course but, my point, there are choices I just didn’t realise I had until I started this journey. Recognising that I had choices gave ME the power to get some control back and to fight this horrible and all-consuming disease at every stage and gain, for me, a better insight into the type of treatment that would best suit me and my specific type of cancer.

It’s important for those starting out on their Cancer journey to realise, unfortunately, whilst chemo and radiotherapy may only be for a short time, 5 months and a few weeks respectively, as in my case, treatment beyond that can go on for years after and that has its own challenges when it comes to deciding which one and for how long you are prepared to do it for. Again, I have not ever made any of these decisions alone. I have my amazing Functional Nutritionist Silvia Grisendi. I also have the wonderful Patricia Peat at Cancer Options and I read a lot and have gleaned vast amounts of crucial information from my various facebook groups around the world.

This extra team of mine has been crucial in helping me make the very important decisions around treatment as well as therapies, diet and supplements in how to help support me manage and prevent any side effects etc. This team has been working with me in conjunction with my wonderful NHS Oncology Team at the PRUH and Surgical Team and Radio Team at Guys & St Thomas’ Hospitals. Yes, I had to change a few of my team around to get the right ones in place for me but now that I have, I really do feel I have the ‘dream team’ to help me work through every stage. You’ll know when you have the right person working with you for that is what they do, work with you, listen to you and never force you into doing anything you don’t want to do. There is trust and mutual respect, I think from them too, that here is this patient who has no medical training but she is willing to learn, ask questions and literally fight for what’s right for her life and her future. All I did was ask for a different oncologist, to have my radiotherapy managed by a different hospital and I asked for a specific surgeon that had come highly recommended (who was already working at the hospital) by another cancer patient friend. If you don’t ask, you don’t get so where’s the harm in asking?

And so to my last major decision…. What hormone treatment did I opt for? This question has been plaguing me for weeks now. Do I go for the post menopausal hormone treatment Letrozole, that requires me to also have a monthly insertion of Zoladex to push me through menopause and keep me there and then go back into the chemo suite every 6 months to have an infusion of zoledronic acid which are biophosphonates to help improve bone density given I’ll be suddenly pushed through menopause and may experience all the symptoms of menopause all at once in one fell swoop? Can I avoid doing this at all? Are there any alternatives?

Well, yes there are, for someone like me who was pre-menopausal before I began chemo treatment last August. How you find out if you are pre or post menopausal is through a blood test but your GP or doctor has to approve it because they look for something very specific in the blood. My first blood test showed I was pre-menopausal but then after chemo, understandably, my blood showed I’m post menopausal. But we can’t be sure if it’s because I’m now in a ‘chemo-induced menopause’ of if I’ve actually been pushed through it altogether. And, I won’t know this for 9-12 months post chemo – when, in theory, all the chemo and radio will have left my body to give an accurate reading. Unfortunately, by then, I will have missed my window of opportunity to take hormone treatment therapy which has been explained would improve my chances from 70% of survival to 80% with the hormone treatment added in.

So, here’s an example of how my wonderful oncologist, Dr Mark Nathan handled my questioning and disappointment when I heard the news he shared with me last time…. He listened to me, was patient as I proceeded to ask question after question about the Letrozole option! (I wouldn’t be surprised if he tells his admin team to allocate me extra time when he sees that I’m coming in given how long I’m in his office questioning the treatment and options available to me – every time I go in!) But, he never makes me feel like I’m taking up too much of his time – ever!

It’s difficult to explain but it felt all wrong, for me, that I should agree to take Letrozole for another 4 years plus these monthly insertions and 6 monthly infusions! I felt totally overwhelmed imagining what the next four years of my life would look like – especially as Dr Nathan felt this was the better option available to me because it had an 88% chance of success compared to the Tamoxifen at 85%. Whilst they are the figures and that is the maths, it felt too much for me. Whereas Tamoxifen is one daily pill and would still help me block some of the oestrogen being produced by my body. He gave me the option to go away and think about it and come back to him in a week’s time….

I hurriedly emailed Silvia and Patricia and got emergency meetings this week in with both of them explaining my dilemma and requesting a frank discussion about my options. I was particularly keen to understand the way my hormones metabolise and my genetic make up which might help clarify which of the two hormone treatments were the better option for me.

So, given my breast cancer is hormonal, I learned from one of my incredible Facebook groups – BRiC Private Group (Building Resilience in Cancer) from a lady called Sonia that “you can get DNA testing to see your CYP2D6 status. If you are a slow metabolizer, Tamoxifen doesn’t work that well for you and you should take something else. And if you are a fast metabolizer the medication will work great but you’ll have lots of side effects.” She went on to explain that there is a “similar situation with Ki67 scoring and anastrazole (which Letrozole is from the same family). Most of us aren’t getting access to these tests and then get put on meds that can cause severe side effects.” Luckily I had a DNA test earlier on in my treatment and I had just received the results of my hormone DUTCH Test back. So, I wasted no time in screen shotting this information to Silvia and Patricia to ask them to look into my DNA and DUTCH test results to see how I may fare taking these hormone pills.

Good news, according to Silvia, my CY2PD6 gene is normal so that means I will convert Tamoxifen well and it should work well for me. The only thing is that whilst Tamoxifen blocks the oestrogen produced by my ovaries, it won’t block oestrogen being produced by the other parts of my body. Because of this there is a very small chance that because it’s only blocking my ovary oestrogen production that my body may start over producing oestrogen elsewhere and end up with a very small chance of getting cancer elsewhere in the body. I need to add here, that Silvia emphasised in all her years of practicing and the thousands of ladies she has helped support, not one of these ladies has had a secondary cancer as a result of taking Tamoxifen but it’s a risk and we, the patient, have to be aware of this risk. I am not much of a risk taker but I felt comfortable enough given what Silvia and Patricia have said about how well I methylate hormones that I should be safe enough – phew!

The thing is in Letrozole, you don’t have this. There is no ‘other cancer’ potential scare. Also, Letrozole is metabolised through something known as CiP3A4. From my DUTCH and DNA test it shows that it is likely that I wouldn’t have any problems metabolising Letrozole either.

Silvia explained to me that the most important thing is to find out how my body metabolises oestrogen from my DUTCH test. Whilst I showed “extremely low levels of oestrogen”, which would be expected in any patient having undergone chemo and radio in the last 6 months, I was wrong to assume that it meant I would continue to show “extremely low levels”. These results, however, will change as I finish treatment, so I will need to test again later down the line. But what the DUTCH test did show (and wouldn’t be affected by what treatment I’m on) is how exactly my body metabolises oestrogen so those results create a base line to measure from. And as long as that’s not bad (which it isn’t), then we can assume I should be fine. Any future testing may show improvement on how I metabolise oestrogen but won’t go below the baseline results that I have.

A couple of extra snippets of information that Silvia imparted were around support for hot flashes (which I am experiencing more and more of, not just at night time) and fasting. She suggested taking GLA once a day. According to the Natural Dispensary website “GLA 240mg softgels supply gamma-linolenic acid from the oil of borage seeds. GLA is essential for smooth and healthy skin and female hormonal balance. GLA should be considered for skin health (along with fish oils).”

I asked her, moving forward, “is 13 hours of fasting still the ideal for women like me?” Her answer was a definitive “yes”. She explained that women who wish to lose weight may opt for a 16 hour to 20 hour fasting period but the results from fasting for that period of time for men and women differ. She mentioned that fasting for this long might even have some detrimental effects in terms of liver function and elimination of hormones whereas fasting for 13 hours you get no detrimental effects and great results.

She did suggest that fasting for 24 hours one to two times a month – water only – is also beneficial because it brings down a lot of the markers in inflammation and sugar pathways that may contribute to cancer. Or, she indicated doing a 5 day “fast mimicking” diet where you just consume nutritionally dense food at 600 calories a day, there is scientific proof to say that after 3 days of the 5 day diet, there is evidence to show that a person gets a whole new immune system! Which I think is fascinating! And a simple, cost effective way of reducing the chances of getting any more cancer or other diseases – especially given Silvia believes that pretty much all diseases start in the gut!

So after my call with Silvia I started to lean towards choosing Tamoxifen. Then after my call with Patricia I made the decision to go with Tamoxifen – despite the number of women who have written about the side effects they were getting – because it’s one pill a day and my body is likely to be able to metabolise it well. So minimal side effects. Also, Patricia felt that my decision is a good one given how active I am. Letrozole has a propensity to give women bone and muscle pain – some women wake up after taking Letrozole and feel like they’ve aged to 90 over night! No thank you!

I have also made the decision to only do it for a year. My reasoning is that in 12 months I’ll be 52.5 years old – which I think will be safe to assume I’ll be through menopause then. And, by doing it for just 1 year I will have received most of the advantages of taking a hormone inhibitor by taking it in the window shortly after radiotherapy so receiving the extra 10% benefit. But, by only doing it for 12 months I won’t have the build up of toxicity that being on it for 4+ years would give me. According to Patricia, most of the side effects are long term side effects. Given I function already on very low oestrogen (apart from my annoying many memory lapses!!), I shouldn’t experience too many other detrimental effects. But what it’s taught me is my memory lapses and hot flashes are all to do with my very low oestrogen levels.

Another piece of good news, is by continuing on with Low Dose Naltrexone (my anti opioid repurposed drug) that this should also help me with the side effects of Tamoxifen, particularly with my chemo brain! And, then by continuing Metformin (anti diabetic repurposed drug) taking it once a day before my biggest meal and Berberine twice a day before the other main meals will help block more than just the glucose pathways but it also blocks many other cancer pathways. I need to avoid iron because cancer cells love iron and Patricia is advising I do Metformin for another year alongside the Tamoxifen and Melatonin too for at least a year as it is a very good cancer blocker and has a great effect on how it methylates (i.e. eliminates) hormones.

With my last radiotherapy tomorrow and not needing to start Tamoxifen until I return from holiday, I feel as calm as I can be about the next few months ahead. And with Patricia’s parting words at our last zoom meeting that “with everything else that you are doing, the chances of recurrence are negligible. I am not worried about you at all”. I think I have earned my rest.

Next blog will be sometime November/December 2022.

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My Statistics

I think anyone with children still in school must find the last few weeks of the Summer term particularly stressful. You have all the end of year preparations in terms of organising gifts for teachers, end of year tests/exams, sports days, end of term performances, assemblies, knackered children etc. But parents of Year 6 kids have a few more things more going on…

Firstly, dealing with all the upcoming emotions of the kids leaving their friends to move to new Secondary Schools. The added challenge of supporting your babies to leave somewhere familiar at the top of the school only to join somewhere completely strange and new at the bottom of the school.

Freddy’s End of Year 6 Celebrations were multiple and varied. Needless to say, he had a blast! He won a medal at his last Primary School sports day too (his first ever!!) which I missed because I had arranged to collect my mother and brother from the airport – having organised a short trip back to the Uk so that James could attend his friend Matthew’s wedding in Tuscany. Then there was the leavers’ picnic, the signing of tee shirts, the end of year Lion King performance put on by all the kids, the end of Year 6 disco – where Freddy got himself his first girlfriend! All of which was preceded by a very fun mini party for Freddy and his friends back at ours, before the disco, where they had ice cream milkshakes, pizza and too many M&M biscuits and sweets. We had tried to hire a stretch limo but the cost was astronomical so we settled for our own, recently cleaned (inside and out!), 7 seater Skoda with helium balloons tied to the wing mirrors. We crawled the streets of Hayes (only managing a max of 20 mph) as the balloons bellowed and tossed against the windscreen with windows all the way down and “Sweet Caroline” blaring out of the car’s speakers (their choice, I assure you!), screaming (not singing) at the tops of their voices as we proceeded to let the whole of Hayes know the boys were on their way to their End of Year 6 Disco! Job done! Very happy boys! Relieved Mum! And breathe…

All of this was going on whilst I started my first week of radiotherapy during a week with the hottest temperatures on record! Sleep was difficult, sweating was profuse, and energy seriously lacking! I think we all felt a bit like what has happened to our dried out lawns and plants! And, on day 3 of my radiotherapy I received a call to say “the whole of Guy’s & St Thomas’ IT system is down and the radiotherapy machine isn’t working so please don’t come in!” They called again that afternoon saying the system couldn’t be re-booted because of the soaring temperatures and so they couldn’t fit me in the following day either. Freaking out a little bit, I called first thing on Thursday morning to see if there was any news and to inform them that I could come straight from oxygen therapy in Swanley if they’d managed to get things moving in the afternoon. Fortunately, I got the call to come in later that day and I only missed one day of radiotherapy. I have to have radiotherapy every day for 15 days, minus weekends so one day wasn’t a big deal – in the end. Phew! But as of today, 7 days later, their IT system is still up the spout but fortunately radiotherapy could come off the main server and work on it’s own server but it’s caused absolute chaos across the Trust of hospitals and has been extremely problematic for chemo patients and those needing surgery. I can’t imagine what those poor patients must be going through!

I have found radiotherapy much easier than chemotherapy – thus far. I was always told to expect this by other patients but you never know until you try it, do you? I always have the fear of the unknown and I was scared of the soreness, the itchiness, the blisters and fatigue that I had been warned I could experience (most likely by end of week 2 or week 3). So far, I have nothing other than a bit of tiredness.

The planning meeting had me positioned in various poses with arms raised above my head, lying down, so they could log the measurements for the lasers to do their job. You get given a mat to carry with you to each of your appointments which you lie down on and they pull the mat, with you lying on it, into position. The strangest experience is that you have to take a deep breath and, for several times, hold it for up to 30 seconds without moving. I can hold my breath, just about for 30 secs but trying not to move a millimetre in your shoulders or anywhere else is a little more tricky. If you don’t lie still they have to redo it and it extends the time on the bed so I have tried to learn to relax and keep as still as possible.

I have had my wonderful mother-in-law with me at every appointment. Bringing along her beautiful crocheting to knit whilst I go in for radio. You may recall I find it hard asking for help? I don’t know why but Fran has sensed my need for company and insisted she come each time. Fran and Barry are only here for another week and they have been nothing short of fantastic. Supporting me, the family, cooking, cleaning, gardening – all to help me out whilst I’m going through this next round of treatment. I certainly lucked out when I married Hamish. I’m going to miss them and many of our friends will too. They have been a great hit with our mates, as usual and I’m sure there are a few who’d like to adopt them! I have cheekily suggested they move in on a more permanent basis but they have commitments back in New Zealand and their son, Paulie, who will be missing them like mad – I’m sure.

So, what next….? I have two more weeks of radiotherapy and I have my meeting with Dr Mark Nathan tomorrow to discuss the potential hormone therapy he wishes me to go on. I had my meeting with Silvia (Functional Nutritionist) last week and whilst she isn’t keen to offer advice when it comes to medical treatment (not wanting to interfere with the doctors) she was able to talk me through the results of the DUTCH test (a hormone test) and my blood test results (which we did to assess where I am after chemo etc).

You may remember me saying that my DUTCH test results show I have ‘extremely low levels of oestrogen’ – which is great for someone like me whose breast cancer is hormonal. But it is only part of the picture. In order to have the whole picture, all us cancer patients should be asking for our statistics before we begin any treatment at all. I had no idea that something like this even existed. But, of course, where does all the info on your kind of cancer, what grade etc come from? As Silvia says, “you are a mathematical equation”. We ALL are when we first get our diagnosis.

The results of our biopsies get put into a computer and out comes a set of statistics that provide a list of percentages in terms of one’s survival rate should one proceed to take up any of the following treatment. It may be a different set of statistics depending on what kind of cancer you have but if it’s breast cancer, you can expect it to look something like this:

  • % of survival if you have chemo
  • % of survival if you have surgery
  • % of survival if you have lymph node removal
  • % of survival if you have radiotherapy
  • % of survival if you have hormone therapy
  • % of survival if you have biophosphonates (for improving bone density and reduction of BC coming back)

And it is the results of these specific statistics that define what kind of treatment the doctors advise you to have going forward.

I remember Patricia saying that I had to find out what mine were if I was to be in a position to decide whether or not to have hormone treatment – which you may recall them telling me involves another FOUR more years of monthly injections, 6 monthly infusions and a daily hormone tablet all of which have multiple side effects!

According to Silvia, what we should be doing is sorting out the route problem of how the cancer has come to be (through various genetic testing), try and correct that through supplements and diet and then have a good anti-cancer protocol to attack it from the other side. We should not be attacking it from just one side and medical treatment is just one side. We need to not just kill it but also be starving the cancer by blocking its ability to grow and reproduce. We can do this through Hyperbaric Oxygen Therapy, High Dose Vitamin C Infusions, Repurposed Drugs etc. Understanding how you can change your diet to help the type of cancer you have from growing. Blocking their fuel source so that cancer cells become vulnerable and die. There is so much one can do. There is always hope.

Silvia explained to me, that “breast cancer doesn’t have a reliable tumour marker unlike other cancers” and it would be very helpful to understand what the tumour markers are so it can be measured and evaluated through your treatment and beyond. Apparently one of the most useful ways of testing breast cancer tumours is via a “circulation cancer cell test” but this is not used in the NHS because it’s costly and timely and involves the need to monitor it for change.

Interestingly my blood test results, on the whole, were good but I’m still low on Vitamin B12 so I need to think about upping my consumption of eggs, fish and red meat. Silvia said it is possible this is because my body is using up more B12 in my body than normal to make more blood vessels during my treatments. I have noticed, myself, that I’m eating less eggs and fish. I’m still low on Vitamin D – which my kids are super surprised about – given my sun worshipping skills! So have upped my dose there too. My folates are also below what they should be so I need to go back to eating more greens. I think I’ve had so much salad during this hot weather and avoided cooked green veggies so I need to get back on to that. But, what’s a little worrying is that my cholesterol needs to be a bit lower and my HBA1C needs to be closer to 30 and is currently 35. I have been a bit more lax with my diet since Fran and Barry’s arrival – not their fault – mine of course! But I admitted I’ve been eating more sugar, drinking alcohol but Silvia thinks it might have more to do with that I have been having my veggie juice (pure juice no fibre) on an empty stomach which I shouldn’t! I should always have it before a meal or with a meal to avoid spikes in insulin. She thinks it’s this which has contributed to my higher levels and so she’s advised I stop juicing for the time being and concentrate on dark berry and veggie smoothies with the fibre left in. Good news that liver and inflammation is at a very good level – especially considering all the treatment I’ve had. She’s going to test me again in a few months and see how my results are then.

So, to my statistics…. Something so easy as trying to get the data from my stats became a real battle in the week leading up to radio. Trying to get it was like pulling teeth. I was met with “why do you want them now?”, “for what purpose are you going to use them?”, “we are short staffed”, “how is this going to improve things for you?” What the flip were they trying to hide from me? After much persuasion and explaining the wish to save everybody’s time, including the busy Dr Nathan, they sent them through to me and I was flabbergasted.

1. Having chemo         Reduced chances of dying over next ten years by 9%

2. Having surgery            Would almost certainly die of breast cancer without

3. Having radiotherapy        Reduces risk of local recurrence by around half

4. Having hormone inhibitors  Reduces chances of dying over next ten years by 10%

5. Lymph node removal       Would almost certainly die of breast cancer without

(I haven’t had the biophosphonates stats back yet)

Patricia relayed to me that one of her clients, who received her statistics right at the beginning before her treatment, showed that her chance of survival with chemo was only 6% but she decided to have chemo anyway and I was shocked. Then to see that my chance of survival would have only been improved by 9% having chemo, and I that I had never been told about this at the beginning, made me cross. Why hadn’t anyone spoken to me about this?

But the conversation I had with Hamish, subsequently, reminded me that I would have had to have a full mastectomy if I hadn’t had chemo. And, positively, as a result of having had chemo I have completely changed my diet, added supplements, purchased a new water filter, juicing machine etc which has resulted in a much healthier lifestyle for me and my family – which probably wouldn’t have happened quite to this extent without the need to combat the side effects of chemo. The Berkey Water Filter, which was recommended to us by Silvia also removes or reduces viruses, pathogenic cysts, parasites, pharmaceuticals – including hormones and drugs, harmful chemicals such as herbicides and pesticides, VOCs, detergents, organic solvents, cloudiness, trihalomethanes, silt, sediment and heavy metals etc.

So, in retrospect, I think I still would have gone ahead with chemo. But, it’s an easy thing for me to say now that I’m 6 months post chemo and that I tolerated it quite well. There are many, many women who don’t tolerate chemo so well and, who knows, they may have had similar stats as me and could have made the choice not to have chemo. But I don’t think any of us begin knowing that we can ask for our own stats? So ask for your stats!!!

Silvia has warned me that she has never seen an oncologist that has taken the patient’s DUTCH test results into account when advising on cancer treatment. So we will have to see what he says tomorrow. Silvia is also advising, once I finish radiotherapy and return from holidays, that I start having coffee enemas once a week. According to the Healthline website, “remove or reduce viruses, pathogenic cysts, parasites, pharmaceuticals, harmful chemicals such as herbicides and pesticides, VOCs, detergents, organic solvents, cloudiness, trihalomethanes, silt, sediment, heavy metals”. Apparently having coffee enemas supposedly:

  • boosts immunity
  • increase energy
  • stops yeast overgrowth
  • treats autoimmune diseases
  • removes parasites from the digestive tract
  • removes heavy metals from the body
  • treats depression
  • treats cancer

Never done one but there are plenty of things I’ve done for the first time over the last 13 months so why stop now!

Well, I’m back from my meeting with my oncologist and I don’t know why I’m so surprised. These meetings seem to always throw me left curve balls that I am not expecting. Seriously, it’s taken me a couple of hours to stop crying and feeling so floored. Essentially he’s saying that the decision is mine but that I’ve misunderstood the statistics that were given to me (although he explained it wasn’t my fault).

He brought up the data on his computer and talked us through how the system works and was almost apologetic for it, describing it as a “crude tool”. He went on to spell out that the stats are calculated on 100 people with the same breast cancer as me and that the stats are worked out cumulatively. I found it difficult to follow but Hamish talked me through it by relaying what Dr Nathan had said: that over the course of the next 10 years, for every 100 women 4 would die of something else other than breast cancer. Something like 57 would live by just having surgery and radiotherapy. Then if those 57 women also had chemo, another 12 would survive and then adding hormone treatment a further 9 would survive. Hamish asked the provenance of this data and had it confirmed that it was compiled by the University of Cambridge, for which he impressed upon me the significance and importance of this useful data. To quote Hamish “It’s not me, but if it were me, I would want to be in that 80% group of surviving as opposed to that 70%”. So doesn’t that mean my having to agree to some sort of hormone treatment?

He explained, just like the stats, the medical treatment is also only cumulatively effective. So, if I choose to wait to have hormone therapy later on down the line, I will have missed my window for its effectiveness when combined with radio, surgery and chemo.

But I really can’t bear the idea of having injections, infusions and a daily pill for the next 5-10 years with all their side effects. So I asked again about having my ovaries removed and he said that he didn’t know how long I could be waiting for the surgery because they wouldn’t look at it as part of cancer treatment so I could be waiting months and months and missing out on vital hormone treatment. Then it dawned on me, because I’d been so against Tamoxifen I had almost closed him down the first time we spoke about hormone therapy because of all the side effects, would taking Tamoxifen mean only taking a daily pill (without all the infusions and biophosphonates needed to be taken with Letrozole to push me through menopause and improve my bone density)? His answer was “yes”. So, I’m now considering Tamoxifen so that I don’t have to do all those other things I need to do when taking Letrozole.

To say I’m gutted, is an understatement. I have a week to decide as he wants to start me on something asap. He explained the side effects take 2-3 weeks to kick in. Perfect! Just when I’m on our Summer holiday!!!! But it gets progressively worse over the first 2-3 months but that I have to “push through it” and review in 6 months when I can decide to change or come off them. At least that’s something! So I have sent off my emergency email to Silvia and Patricia and am asking them for advice. I don’t know why I bothered having my DUTCH test if it was always, like my blood tests, going to be skewed because my body hasn’t fully recovered from chemo and other treatments yet? Or am I missing something?

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Oestrogen

It’s been an enlightening couple of weeks for me. It always surprises me, just when I think I’m done with the next bit, something else arises and I find myself investigating and researching around the subject so that I can be more informed. If there’s one thing this journey has taught me, you can never be complacent. You must never sit back and just wait to hear what the doctors have in store for you. Ultimately, when we enter the system as a patient, one has to remember, we are just a number – another patient walking in on the conveyor belt of sickness and disease. Yet every one of us is distinctly unique and different so why is our treatment not created according to our own set of individual genetics and hormone levels? Not a hard question to answer, really is it? It comes down to money and time. Money that the NHS doesn’t have and time where there aren’t the resources or the staff to analyse individual data to create a bespoke treatment specific to you.

I honestly think the NHS are doing the best they can with the resources available to them. They take the time to understand the individual’s needs and challenges. My oncologist has been very understanding and heard what I’ve been saying at every stage but I know that’s not been the same for everyone. That said, there is still a ‘one shoe fits all’ approach that doesn’t sit comfortably with me. I know I’m different, I know I’ve fought every step of the way to get a set of treatments that is key to my situation and set of results. But I haven’t been afraid to ask for more or for different treatment, whereas I know other patients have literally just said ‘yes’ to anything their doctors or oncologists have told them or recommended with no questioning and no challenging. It scares the bejesus out of me! If I had gone along with everything I had been told, I may well be sitting in a very different place and with a different outcome.

I have been mulling over the decision about having these monthly injections or what are probably more appropriately described as insertions of the little Zoladex capsule into my stomach. (I’ve been told to try and have this sitting up rather than lying down as it’s quite painful). These are to push me through menopause and then they also want me to have the 6 monthly infusions of zoledronic acid to increase my bone density on top of the daily hormone inhibitor, Letrozole. Apparently the Zoladex injections are quite painful and I’m expected to continue these monthly for the next 4 years all because 55 seems to be the age the medical community feel is when women are most definitely through menopause.

Because there is no way of knowing, for sure, whether you are through menopause or not (because a clear test is only possible after 9-12 months free of chemo when the poison has left our bodies). Given they want to start the endocrine therapy (hormone therapy) soon after surgery, we will never know if my blood results are accurate or that I’m actually in a chemo-induced menopause – hence the recommendation to take the Zoladex to ensure I am pushed through so that I don’t have any adverse reactions to the Letrozole as a result of me being pre-menopausal!! Oh the joys!

But, what if there was another way? I know many many women are on hormone inhibitors and have suffered and managed through with Zoladex but I have to say, I really really don’t want four more years of stuff like this going into my body. It’s already taken such a battering. Surely there has to be another way?

So, my friend Phillipa mentioned a friend of hers who has ended up deciding to have her ovaries removed. The initial idea of going back on to the operating table filled me with dread but then, as Phillipa said “short term pain for long term gain”. So, if I had my ovaries removed, would that mean I could get away with not having to have some of the endocrine therapy? Apparently not. It seems that our ovaries produce most of the oestrogen in our bodies but it’s not the only source so they would expect me still to have Letrozole as a precautionary measure. My oncologist is encouraging me to start the treatment and look at discussing this other option later, should it not agree with me. I think the main reason why they aren’t considering this as a primary option is because I’ve had two general anaesthetics in the space of 3 months and if I had a 3rd that would mean 3 in less than 6 months – which I don’t think is particularly good for our bodies. I really don’t know what to do?

So, I took myself off to Ibiza with one of my closest friends, Carol, to celebrate her belated 60th and my belated 50th birthdays which we had missed over the last couple of years due to Covid. I haven’t been back since I was in my mid twenties. This time we stayed in Santa Eularia rather than San Antonio and visited elegant but super expensive beach clubs and restaurants recommended by various well-informed friends. No partying or raving this time round but it is still one of the best places for people watching. What is quite common to find on La Isla Blanca are groups of Stags and Hens all topping up their tans and whiling their days away basking on the glorious beaches in teeny tiny bikinis and, in some cases, even smaller budgey smugglers.

I had arranged to have a zoom call with Patricia Peat from Cancer Options to understand what sort of therapies I should consider or continue along with during my radiotherapy. And, I wanted to ask her directly about her thoughts around having the type of hormone treatment that the NHS have recommended me. Interestingly, she said that this is one of the biggest questions she’s been taking from patients recently. And she confirmed that, unfortunately, the general treatment for a ER+ PR+ post menopausal woman with breast cancer is indeed the treatment I have been offered. It is essentially a ‘blanket treatment’ for all those with hormone-led breast cancer because I have an imbalance in my body when producing hormones so this is the way to rectify it, or curtail it.

I could tell that Patricia had more to say on the subject so I pressed her to tell me what she’d do if she was sitting in my shoes? She answered that really every patient should be treated individually with a set of bespoke treatments because we all produce hormones and metabolise and eliminate stuff from our body differently. Apparently one of the best ways to know for sure how the hormones in my body work is by doing a DUTCH test. “I’ve done one!! I’ve done one!!” I exclaimed over the zoom waves to her. “When?” she asked. So I told her that I had done one a couple of weeks ago and that the results would be making their way to Silvia any day now.

Patricia talked me through how the DUTCH test helps you specifically identify, according to your individual biochemistry:

  1. how my adrenals are functioning
  2. where the imbalances are
  3. how I am producing hormones
  4. My methylation (elimination) channels

Oestrogen is metabolised by the gut and then methylated by the liver. There is toxic oestrogen and non toxic oestrogen but the doctors don’t differentiate between the two when they first diagnose you. So all they knew at the beginning is that I produced quite a lot of oestrogen (hence by ER7+ initial diagnosis). It is possible that the results of my recent DUTCH test will show I may not need to have quite as much hormone treatment and not for as long as the doctors have recommended. But these tests aren’t cheap and it involves a professional to analyse the results for you – so more time and money. I’m just lucky I’ve been able to do this. The NHS certainly can’t afford to do this test for every patient but I don’t get why every patient isn’t given the information about this test by the hospitals or their GPs so they can at least investigate the option for themselves?

Patricia says that 90% of people will just agree to do whatever they are told to do rather than investigate an alternative option for themselves.

According to Patricia, (but I have read and heard about this before from multiple sources) “we live in a very oestrogen-heavy world. We get it from our water supply, general toxicity, through plastics etc” and she is convinced that our bodies haven’t evolved quickly enough to cope with the changes in our modern world. Hence why girls are starting their periods as young as 8, why there is such an upturn in hormone based breast cancers and even why boys and men are developing m’oobs more prevalently than ever before!

We have bought a ‘Berkey’ water filter to process all our water consumption and reduce toxins going into our body. We have reduced plastics in our house so that we no longer ever reheat any food in a plastic container. The kids only have stainless steel water bottles to drink out of as much as possible – although the odd plastic bottle isn’t completely easy to eliminate. We also only wash plastics up by hand and they no longer get washed in an over heated dishwasher. Our tupperware is mostly glass now. We also remove the dry-cleaning plastic from all our clothes we cry clean and leave the plastic covering at the dry cleaners because of the toxicity we’d be bringing back into our house. We no longer cook at high temperatures so as to reduce the carcinogenic element of cooking. We have changed all our soap powders and sprays to Eco ones (although I can’t quite get rid of bleach down the loos!!). It’s been a gradual journey and we have just had to do what we can when we can. It’s so hard when you’ve been used to living life a completely different way for so long.

Patricia went on to explain what Hamish had already cited to me all the way back at the beginning – a year ago this month!! – that I’m just a number. I’m a “mathematical equation”. So this is how they choose my treatment. My biopsy stats get put into a computer and they are worked through an algorithm that then produces a series of mathematical statistics that say chemotherapy will improve my chances of becoming cancer free by a%, surgery by b%, radiotherapy by c%, hormone treatment by d% etc. So first things first, I need to know the danger level of recurrence – stats I can apparently get from the hospital. It’s been three days and I still haven’t received them and have been asked a whole host of questions as to why I want them!! So frustrating!

But, good news! DUTCH test results are in…. Although I haven’t had the full analysis of the DUTCH test or its meaning explained to me yet by Silvia – apparently I produce very low levels of oestrogen. I’m desperate to know what this means for me and what my alternative options are….

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After surgery, then what?

It’s been a strange one. I know it takes time to heal from surgery but I’ve had to have surgery twice in 3 months and I don’t know if I’m allowed to say it, but I’m bored of all the healing, I’m bored of having to take it easy, I’m bored of not being able to have full movement yet. Impatient I may be but, I can’t believe some of you are still reading my blog! Surely, you must be bored yourself now? You must be thinking, like me, when is this all going to be over?

It’s been nearly a year since I found my lump and 11 months since my diagnosis. Every single day for the last 11 months I’ve had to consider this wretched disease. I’ve had to deliberate what I should put in my body and what I shouldn’t. I have had to count and time all the supplements I’m taking, making sure I don’t run out. I’ve had to research every phase of my treatment plan so that I am knowledgeable and cognisant of what I have agreed to have done to my body by my doctors and surgical teams. I have to be ahead of my doctors in terms of understanding my treatment to avoid delay and to make sure I have agreed to the best course of action for my type of cancer. I can’t leave it to fate nor can I leave it to the doctors alone. There’s so much one can do and more I need to do or find out to help me be clear as to what my next course of action may look like. It’s exhausting frankly.

Of course, I have had a few lovely things to distract me over the last few weeks. My wonderful parents-in-law, Fran and Barry, are over from New Zealand and they have been absolutely amazing in trying to make my life as easy as possible. We had a lovely afternoon tea with my tennis friends to thank them for all their support. Freddy had his residential trip to Norfolk, which was a great success, even if it meant that he came home a little bit taller and a whole load more grown up and independent. Is it bad I want to keep him as my baby for just a bit longer?

We had a fantastic time at the Capital Summertime ball, a proper family day and night out. Ate rubbish and drank unnecessarily expensive Pimms but saw some amazing acts. Freddy thought it was too loud and took a while to get into, but that might have had something to do with the fact he’d only just got home from being away for 5 days and he may have just needed some sleep – too bad, we were there to party!! And, Hamish and I got to go away for the weekend to Brighton as an early celebration for our 11th wedding anniversary. So can’t really complain.

Last week, was my first appointment with my oncologist since surgery and since February time, if I remember correctly. I took Fran with me. I know I need someone with me in all these meetings. I can’t always retain all the information and sometimes you need someone else to ask a question you don’t think of.

The meeting was to discuss what endocrine therapy I’d be having. Hormone therapy, sometimes called endocrine therapy, is a treatment that stops the effect of oestrogen on breast cancer cells. My breast cancer is oestrogen and progesterone positive which basically means it feeds off the hormones I produce so I need to have further therapy to block the hormones if I am to reduce the chances of recurrence.

The problem is there are so many side effects associated with these hormone treatments and I need to figure out which one is best for me. What I hadn’t appreciated is that your endocrine therapy will be chosen predominately based on whether you are pre or post menopausal. How you find this out is through a blood test. I had one before I began chemo because I thought it would be useful to know where I am on the spectrum. I was always told that my treatment would put me through a chemo induced menopause but my original blood test showed that I was pre-menopausal.

My friend, Gemma, in Oz said that she was fast tracked through menopause in just 3 months and one of the positives of that is that she avoided all the prolonged horrible side effects that so many women experience when they go through this difficult and inevitable stage of their life. But, I’m still experiencing symptoms. I have several hot flashes daily, where I have to strip off my layers down to my tee-shirt; the occasional night sweats – even before the summer heat has started to kick in. I have regular memory lapses and can’t remember the last thing that was in my head but nothing much worse than that for now.

But, what does that mean for me now? Well, basically, if I’m pre-menopausal the usual plan is to give the drug Tamoxifen – which, if you read my last blog, you’ll have learned that that is not an option for me. There are so many well known horrendous side effects from this drug that I’m going to stay well clear of it. So, then, ideally I would be post menopausal so I would be offered a different hormone inhibitor but there’s an added problem, apparently. I may actually not be post menopausal yet and if that is the case and they give me a ‘post menopausal’ drug then this might stimulate my oestrogen levels and produce more which would be very dangerous for me.

I asked if it would be worth taking another blood test to check where I am on the scale but the oncologist just said that whilst we could do that (which I did in the end), it could still give me a false positive and say I’m through menopause when, in fact, in 3-6 months I may revert back to being pre-menopausal. The only solution is to give me monthly injections of something called Goserelin or Zoladex until I reach 55 years of age! This will push me through the menopause and all that it may bring so that I can have a daily hormone inhibitor tablet called Letrozole, also for the next 5-10 years, which should help to keep my breast cancer starved of oestrogen. But, of course, it’s not that simple, because Letrozole has it’s own side effects including losing bone mass and possible osteoporosis, they want to give me 6 monthly infusions of a drug called Zolandronic Acid for the next 3 years which is supposed to help with bone density and help reduce the chance of breast cancer coming back.

I really had hoped that I would not end up back in the chemo suite again after my last lot of EC chemo. Having to do further drug infusions concerns me. More stuff going into my body that I don’t know how it is going to affect me. If I’m honest, if fills me with dread and I’m desperate to find out if there are any other alternatives for me? Gemma suggested asking the Docs for Aromasin which is another aromatase inhibitor like Letrozole. She had to try 6 different medications before she found Aromasin which she’s been on for the last six years with no side effects. Apparently, Letrozole, according to my oncologist, is from the same family.

The fear that seems to pervade all patients and their doctors is the fear that the breast cancer may come back or worse, spread elsewhere. What to do for the best? I really don’t like the idea of putting more poison or ‘stuff’ into my body without knowing how it’s going to affect me.

So, I’ve booked an appointment with Patricia at Cancer Options to discuss alternatives before my next appointment with my oncologist so that I can consider all options. I have also booked an appointment with Silvia, but I can’t speak to her until 19th July and not sure how supplements and diet alone can affect hormone inbalances? What I have done is paid for The Dutch Test, form Nordic Labs, where you have to pee on a different filter paper two hours apart starting at 5pm on a day you do no exercise and not drink water for 2 hours before you test. It’s a bit complicated because you have to time your wees before bed and log any wee stops over night and then repeat first thing in the morning and two hours after you wake. The Dutch test can help identify the root causes of hormone imbalances in both men and women. The test includes markers providing information about adrenal (stress) hormones as well as reproductive hormones (oestrogen, progesterone and testosterone). I won’t get the results for a couple of weeks and I need Silvia to help me decipher them but I wonder if these results might help me understand my options and make a decision ahead of my next oncologist meeting?

During the meeting with Dr Mark Nathan, my oncologist, Fran intelligently asked if my daughter, Ava, would be prone to breast cancer growing up and would she need to be tested. Surprisingly, his answer was “no, she doesn’t”. Usually, two people in the family have to have had breast cancer for it to be considered genetic. So, in Ava’s case, it isn’t genetic – as far as we know.

Fran also cleverly suggested that if I have to take Zoledronic Acid to improve bone density, would it not be a good idea to measure my bone density before we begin to assess the changes to my bones as I go through treatment. Apparently, this is quite usual and they would do a DEXA scan on me (dual, energy, xray, absorptiometry).

I have to say I left the meeting feeling quite deflated. I can’t believe I’ve got all this extra stuff I have to have put into my body for another 4 years every month! I basically asked “when is it going to be over?” Bottom line, is once you have cancer, that’s it, you are more prone to getting it again – even though it is more common for it to return within 3 years of your first diagnosis. Oh great, I’ve got 3 years to wait on tenterhooks to find out if it’s going to rear its ugly head again! What a pile of pants!

I decided to take the blood test to assess my menopausal status anyway – mainly because I’m curious at what stage I am. But, what happens next may remain the same if I want to go on a post menopausal drug as opposed to a pre-menopausal one so, whichever way, I may need the extra drug to help push me through menopause now!

So, Fran went back to wait in the waiting area and I peeled off to the curtained area where they take blood. There I met the lovely nurse, Dawn, who didn’t know my history or my diagnosis. All she knew was that I was having a blood test to check my menopausal status. She asked my date of birth twice because she couldn’t believe I was 51. Apparently, she thought I looked very good for my age. When I told her about my breast cancer and chemo, her jaw nearly dropped. Well, I guess even though I had been crying moments before in my oncology meeting, I don’t look too bad for an old bird! Ironically, it was Dawn who also took my bloods the following day at a different hospital, for the blood markers Silvia wants me to be checked against! Very small world!

Yesterday morning, I spoke to my very good friend Phillipa or “Philly” as I affectionately call her and she suggested something that I have never even considered – “why not have your ovaries removed?” she asked. I have to be honest, my first response was one of horror and immediate fear of having to go back under the knife and heal all over again. Then, the vanity kicked in – “will it age me considerably – not having any more ovaries?” But then, I thought, if I’m being pushed to menopause anyway, does it really matter if I have my ovaries removed? It might actually be easier to go through having my ovaries removed rather than having monthly and 6 monthly injections? Unless, of course, one’s ovaries aren’t the only source of oestrogen production, in which case I’ll still need the injections anyway. So I’ve sent my email off and am awaiting a response from the oncology team. May as well consider all my options.

Today, I’m writing this from the waiting room of Kings College Hospital in London, waiting for my appointment with the radiologist to find out when and how long I’m going to have radiotherapy for. My trip up this morning wasn’t without its dramas! Firstly, I hadn’t taken a look at the timing on the letter they sent me until 11:35 this morning. Silly I know but they had already called to verbalise the meeting at 2:30pm but the letter said 12:30. Thank goodness I had the foresight to search up how long it was going to take me to drive (45 mins) and noticed the different time! Frantically I tried calling Fran and Barry who had taken a stroll down to the village to pick up a few bits and pieces but I couldn’t get hold of Fran and Hamish was working and I almost resigned myself to the fact that I would have to go on my own. At the 11th hour on the way down the road, I found Fran and Barry walking up and managed to whisk Fran off to my appointment with me in London.

Good job really because they’ve closed the car park, because they are building another wing of the hospital, and it was a bit of a job trying to find somewhere to park and still get to the appointment on time. But my trusty wing-woman – Frances Garnett my MIL – navigated our way to a car park near the hospital. We made it with 2 minutes to spare!

It was a good meeting. We met with a Dr Lim. She was very patient, knowledgeable and extremely helpful. Basically I have my planning meeting for my targeted radiotherapy on 4th July up at Guys in London Bridge. Then I should start daily radiotherapy from 18th July for three weeks, as long as the calculations are correct and nothing is thrown out of whack. I will have radiotherapy in 3 places – my neck, my right breast and the internal mammary chain. She’s advised I start lathering on E45 cream on my right breast and up to my neck to prepare my skin for the onslaught of radiation. She seems to think this will be a walk in the park compared to chemo. I know starting back on 2DG a week before radiotherapy can really help, and that taking melatonin can alleviate side effects – so I need to get organised.

Dr Lim was going to recommend having radiation under my arm pit as well but I told her about my lymph bypass surgery that I’d had done when I had my lymph node clearance last month – which she had no knowledge about! Thank goodness I told her. Can’t believe it wasn’t in my notes!! I took no chances and told her everything.

I explained my fear of the radiation frying my new lymph drainage system, having been hooked up to two veins and would have made the surgery redundant. So, she’s taken radiation of the arm pit off the menu. She told us that it’s not a big deal because most radiologists wouldn’t consider doing under the arm given I’ve had full node clearance but was going to suggest it as an extra precautionary measure – to mop up any remaining cancerous cells. I’ve got time to think about it but am thinking I’m going to pass on this area.

But, just before I went to go in and see Dr Lim, they took my weight and height measurements. I have to say I wasn’t very confident about the day nurse’s skills and when she measured me a few centimetres shorter than I usually am, I was quite concerned. Surely, me being pushed through the menopause can’t have meant I’ve lost 3 cms already!!!!????? She measured me as 169.1 cms but I came home and remeasured myself – three times- and I am very much 172cms. I was 173cms once but a loss of 1cm versus 3cms is a big deal, especially as Dr Lim is going to have to calculate exactly where on my body I’ll be having radiotherapy and she could end up targeting the top of my stomach rather than my breast if she is to follow the nurse’s measurements!!! So, I’ve written another email to the hospital to pass this new information to Dr Lim at Kings. I really can’t afford to leave anything to chance, not just because it means they’d be radiating the wrong area but also because it could delay things and I can’t afford that! We have planned to go to Croatia, as a family, on 14th August and I should finish up radiation the week before – but only if I don’t have any delays!

I don’t know how I’m going to fit everything in. Radiotherapy will only be 15 mins a day but if I can’t do it at Sidcup (1/2 hour away), I’m going to have to go to Guys (a train ride and further away). We also don’t know what time of day yet this will happen. I have Freddy’s birthday party booked, more people coming to stay at the beginning of August and a son to get ready for secondary school! Crazy times and I hope I can fit it all in!

I still need to make decision about my ovaries, knowing that I’ll probably still need to have 6 monthly injections to raise my bone density and my daily hormone inhibitor pill. So the only thing that I won’t need to have is the monthly injections of Goserelin to push me through menopause – because having my ovaries removed will do that anyway. Is having my ovaries out worth doing versus going for the monthly injections for the next 4 years? I really don’t know! I’m going to ask my facebook breast cancer community and hope I’ll find my answer there! I just know I don’t have long to make a decision.

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D Day….

I think I should start with an upfront apology for this week’s blog. I’m afraid it’s not going to be an easy one to read. These last two weeks I have had an onslaught of negative emotions and worries and have led me to feeling quite down in the dumps. So feel free to skip but I’m just being honest and want to be fair to those who may be going through something similar, that it’s ok to have ‘down days’.

This time round, I have found the lead up to surgery particularly hard to deal with mentally. Why? I guess the best way to answer that is when I look back on this whole nightmare, since my diagnosis in July last year, these last 10 months have been consumed by worry, fear, research, change and a whole heap of fighting to get what I wanted to help me deal with each step along the way.

The last time I had surgery was on 18th March. That had its own challenges but I healed well and I healed relatively quickly – much to my own and my surgeon’s surprise and pleasure. I was back on court within 2-3 weeks and felt good. Having gone through the trauma of a lumpectomy and a sentinel node biopsy – where I had 2 lymph nodes removed as well as the remaining cancerous tumour pulled out I, finally, had started to feel normal again. And, then, I was informed that I had to go back in for more surgery – the big one – full node clearance and lymph bypass surgery, almost 2 whole months later to the day due to one of the lymph nodes having macro metasticised.

I have been told so many times, admittedly often encouraged by myself, that I am a Viking! Proud of my heritage. Yes I am strong, yes I have seemingly been able to manage anything and everything that has come my way thus far but right now, right this moment in time, as I head towards my next surgery, I feel anything but strong. I am broken, I am so tired, I am so scared and all I want to do is curl up into a ball and cry my eyes out. The obvious question screams out in my head, “why does this have to happen to me?”, “when will it finally be over?”, “why?”, “why?”….

Because I haven’t done much complaining and tried to carry on as normally as possible, some people forget that I can feel very vulnerable too. Those of us with cancer – actually not just those of us with cancer – those of us having to deal with any health or emotional challenges beyond the normal every day to day, fight a sort of battle almost every day. A battle that may be raging inside us, a mental battle of wills to survive, wills to just get through the day and hope the next day is a little bit better than the last, to find the strength to carry on for your family, for your friends, to just take the next step so as that you don’t crumble and give up. It takes a huge amount of willpower, some days, to do this. I know I am not alone fighting a battle, there are many of my friends and family who have their own battles that they face each day but when we have those moments of weakness, vulnerability and the engine of positivity has just run out of fuel, we need to feel safe and be allowed to live in that moment of vulnerability and be held, loved and just allowed to be broken, for a little while. That’s the way I have felt anyway. And, unfortunately, not everyone has recognised that need in me, which has only compounded my feelings of sadness. All I want right now is my mother, I have suddenly regressed to my 5 year old self, I have run out of steam and I just want it all to be over.

I knew the surgery this time was going to be bigger, of course. But, as you know, I am more comfortable facing whatever is coming my way, if I know what I have to deal with – warts and all. If I am forewarned, I am forearmed, but I only found out two days before surgery that I would be having a drain fitted during the procedure. For those of you who have had big surgery, this may not be any surprise but, for me, it was. No one had mentioned this at all along the way.

This week’s photo is of ‘Derek – the drain’ (affectionately named by my friend, Jo Shaw, who got to hang out with him during her surgery earlier this year). I have to say meeting ‘Derek – the drain’ scared the living daylights out of me. The idea of having a tube inserted into my wound to drain out all the excess fluid from my surgery and having it attached to me for several days post surgery filled me with dread. Dressing, washing, walking, sitting, sleeping with it. I know it’s supposed to help you heal better but I was due to go to my best friend’s 50th birthday party on the Saturday, 2 days after surgery – ambitious one might think but I really thought I’d be able to do it. But when the email came back from Mr Kasem’s team saying, “yes, you will need a drain”, I knew then and there I would not be able to go. But why had nobody told me this would happen before? It was only during one of my persistent email communications to the breast care nurses at the PRUH, to find out what I was to expect from surgery, that I learned that I was, indeed, going to have a drain fitted. I feel I am constantly chasing and constantly seeking answers. No one seems to be managing my expectations. Is that too much to ask? Clearly it is.

Then the doors of anxiety, despair and fear opened with all the questions that I will not get the answers to – until after surgery has finished. I won’t know, for sure, even if the bypass operation will happen. They warned me they may not find a suitable lymph vessel to hook up to a vein and, even if they do, I also won’t know if this will actually prevent the lymphoedema that I have been frightened about getting. I don’t know if there is still cancer in the remaining lymph nodes? I don’t know if I will have more surgery down the line? I don’t know how my healing is going to go? I’ve now been told healing could take as long as 2-3 months! And then there is still radiotherapy to go and hormone blockers for the rest of my life. Right now it feels never ending and I’m all scrambled up inside.

So, when I went to play my last game of tennis with my lovely Stacy, Jodie and Kasia on Wednesday, I had already spent most of Tuesday crying and it didn’t take me long to fully burst into tears as the gorgeous Kasia greeted me with a card and a beautiful flowering plant. I’m so lucky to have met these ladies. They have become such an important part of my life. As I was enveloped in Kasia’s arms, I suddenly felt safe and very loved. When all four of us met on court that morning, I couldn’t help sporadically bursting into tears. Such kindness and such caring from ladies who I haven’t known for very long, really. And then the humour! We always laugh out loud, proper howling with laughter that starts from the pit of your belly and reverberates throughout every cell in your body until you don’t feel quite so sad anymore. These ladies are my tonic, my medicine and I flipping love them for it!

Last Thursday, having packed my bag the night before, I caught the 6am train from Hayes up to Waterloo East to get to St Thomas’s by 7am. It’s actually quite nice getting a train at that time in the morning, not so many people and it’s still quiet. That morning I felt more confident, more resolved to handle what was ahead of me. I arrived on time to a long queue of patients waiting to be let in to the surgical admissions lounge. Many of them had brought family members or came with someone, which contributed to the congestion in the corridor. But, when we were finally admitted, no one other than the patients were allowed past the threshold, so I was glad Hamish stayed home to see the children off to school. We had agreed that he’d follow up later on, when we knew what time he would be allowed to visit. Visiting hours are 2-7pm only. So, I knew that I would flying solo for the first part of this journey. And, I was ok with it.

I had been told I was first up on the list. So I was looking at going into surgery for 8:45/9am. The previous weekend, I had bumped into an old body-combat gym buddy – Val – at another 50th birthday party Hamish and I went to (there certainly has been an abundance of them lately). It was a fantastic party spending time with Michelle, her husband Fred, who had come over from Sweden to throw a joint 50th birthday bash and many of our mutual friends. Catching up with people, some of whom we hadn’t seen in ages, dancing on the dance floor but reconnecting with Val was very special – particularly because Val happens to be quite senior at St Thomas’s – sort of like a matron, head of all the nurses and she told me that she was going to make it her mission to look after me.

That Thursday morning, the waiting room slowly filled up. People not knowing if we should still leave one chair in between each patient – given the chairs still had those stickers on that informed you to leave 1m distance between each person. Suddenly the room started to feel a lot more crowded. But I was called up quickly, taken into a room and stripped into paper panties, compression socks and two surgical gowns – which of course I put on the wrong way round! The surgeons came to visit me, check my breast and arm pit area and proceeded to draw arrows with a big, blue marker as to where they were going to make their incisions. I felt like how I imagine one of those still-life models feel when you are there with them, present and accounted for, but the people in the room with you are talking about you as though you can’t hear them and that you aren’t invited into their conversation. “We could cut along here, or this way? What do you think?”, “no not that way, it’s better we go in this way”, “that’s not going to work…how about this way?”

I had no idea where they were going to open me up and what my new scar would look like – bigger obviously. But, I was frightened about being cut into my arm pit, as Mr Kasem had said he would most likely have to do. Somehow, I remained calm throughout all this chatter, a sort of out of body experience. I was here now, and my fate was in their hands.

Val came bounding into the room and gave me a massive hug. I knew then I was going to be looked after. I felt like VIP, she gave off this aura around her that she was in charge but very relaxed and clearly had everyone’s respect. She informed them that she’d be accompanying me and would stay with me until I was under and had been wheeled into surgery. I don’t think I let go of her hand the whole time until I was no longer conscious that I was holding her hand.

Before going in, I was asked three times what I was having done – I guess as a way to be sure that the patient is clear about their upcoming procedure. They then gave me the low down of what to expect during surgery and was reminded that the blue dye they’d be injecting into my lymph nodes to guide the surgeons may stain my arm and breast area for quite some time to come – least of my concerns I felt, really. And, feeling a little more humerous, partially due to having Val beside me, when they warned me that because of the dye I was most likely going to be peeing blue wee for a day or two, I responded, “don’t worry, I have had red wee with EC chemo, green wee from asparagus and yellow wee too, so having blue wee will just add to my repertoire!” – which lightened the mood and got a laugh out of them before we headed to the anaesthesia room.

I was on the operating table for just over 4 hours. An hour longer than they had expected. The assistant surgeon, Ahmed, came to see me as I was came round about 2:30pm and explained that the operation had gone well and that they had managed to do the bypass surgery as well as full node clearance but they had instead hooked up two lymph nodes to two veins rather than just the one! I wasn’t compos mentis enough to ask “why? Is that a good thing?” but I’m assuming it is because if one fails then there is a back up. But I won’t get the debrief for a couple of weeks yet – when they get the results back from the lab to test the lymph nodes they removed for any remaining cancer.

Val was round to see me in no time and they had called Hamish to let him know the surgery had gone well and that I was out so he could make his way up to London. We had to wait an hour or so for my room to be ready. I think Val got me in to a private room with a view looking over the river Thames and the Houses of Parliament to boot. How lucky am I?!!!! They had made the decision to keep me in over night which, in retrospect, I was very glad for. The views were spectacular. The sun shone brightly into the room, turning it into a greenhouse! Hamish arrived with a healthy lunch and stayed for an hour an half before he had to return to look after the kids. Those amazing views changed spectacularly throughout the differing stages of the day into the evening spoiling me with a magnificent sunset. The ward nurse looking after me was a man called Marvelous! What a name and what a gent – I had to just share that with you! And, when Val popped in to spend a bit of time with me, at the end of the day, before saying her goodbyes – heading to Budapest for the weekend – I went to sleep with the blinds open, calmed by the lights and the silence of the busy London scene below.

Though of course, when everyone had finally left and the night time staff took over, I found I couldn’t sleep. So I was left alone with my inner thoughts and the sounds on the ward behind my closed door. It was all quite straight forward and relaxed. I didn’t need a lot of pain killers, although they were encouraging me to take the oral morphine if I felt discomfort, so I did and was fine.

There was a loo right out side my room – room 12, which was handy given the room didn’t have an ensuite. Going to the loo was a very strange sensation, dragging ‘Derek, the drain’ along with me as it continued to pump bodily fluids into a transparent bottle the size of a coke bottle. Yuk. Not very pleasant and quite cumbersome. I could feel a tugging sensation but apparently it’s been stitched in to my dressing to avoid falling out – but I have been warned that it can be pulled out despite it having been inserted a good 10cms into my body. Then I came face to face with the blue wee in the bowl, remembering what they had told me. Very strange.

There was a bit of excitement on the ward to entertain me as I lay in my room. The man next door, in room 11, had fallen out of his bed. Hamish had already had made his acquaintance earlier on when he was saying his goodbyes. The old chap had had a bout of diarrhoea and had been left outside his room on his bed with his bare bum on show. Hame had to sneak past him, quietly, as he left my room, so as not to disturb or embarrass the poor guy. But his situation meant that I wasn’t allowed to use the loo outside my room now, as it was for the sole occupancy of room 11. So I had to trundle down the corridor to a different toilet. And, for me, that was several times over the course of the evening given how much water I had needed, directly after surgery, to alleviate the dryness in my throat and mouth from having had a tube inserted for well over 4 hours.

There was a TV but it was pay per view and I couldn’t be bothered so, behind closed doors, the sounds outside your room become very noticeable. “Paul???” the new ward nurse asked, “what are you doing on the floor?” The poor guy must have lost so much fluid he had tried to get up out of bed and collapsed. But, apparently, Paul attempted to get out of bed several times during the night and there was lots of reprimanding by the nurses on the ward, warning him that if he tried to get out of bed again they wouldn’t come back to lift him back into bed or threatened him with having a nurse sit in his room with him the whole night. It was a bit uncomfortable to listen to, I have to admit. I chose to stay firmly behind closed doors and slip to the loo, undetected, when I saw the coast was clear – like a ninja in the night – well not quite!

The next day didn’t go quite so smoothly. It took forever to discharge me. They couldn’t find any suitable replacement drain bottles to send me home with and they had got my discharge letter mixed up, thinking I needed to go home with medicine – which I didn’t. All whilst trying to co-ordinate with Hamish a time to drive up and collect me from the lower ground car park – with the added difficulty that there aren’t ever any parking spaces available and one isn’t allowed to wait for too long to collect patients. At 1:38pm I found Hamish, by sheer luck, at the entrance to the underground car park and we were on the road and away from the hospital.

Once home I was ok, pleased to be back in familiar surroundings and seeing the kids but after a couple of hours then the pain kicked in, shooting pains up and down my right arm and shoulder. My arm felt like it had received 100 Mike Tyson punches. Standing, sitting, lying down – nothing changed the pain. I dosed up on codeine that they had given me from the last time I had surgery and paracetamol but, still, nothing. Slept badly. Hamish and I swapped sides of the bed so that I could have Derek down on the floor to the right of me rather than having the tube crossed over my body. Doing my best to not turn in the night and lay in one position was a little tricky to say the least.

The nurses arrived the next day, checked the dressing and changed the drain bottle. It needs to be clamped shut at certain points to avoid an explosion of sorts – given the bottle is a kind of vacuum, sucking out the excess fluids from my body – hmmm nice! Glad I didn’t have to do it! They identified that the tube had been sort of flapping about a bit as I moved around, which may well have contributed to the pain and the traumatised nerve endings, shooting sporadic pains up and down my right side. Unfortunately, the pain didn’t really go away. Good news though, the incision they made, albeit approximately 3-4 inches long, is under my breast and not up in my arm pit, which I’m so relieved about. It will make it easier to heal and I can avoid unnecessary friction in that area.

Again, Sunday night, I had another night of more shooting pains and quite a lot of discomfort and then, this morning, when I attempted to walk Freddy to school, I got half way down the drive and had to turn back because every step shot a pain, too challenging, to make the 20 minute walk there, let alone back.

I got the pre-planned telephone call this morning from the nurses at the PRUH who informed me that Mr Kasem had declared that the drain would need to stay in until Wednesday. I was devastated, I have to say. I wasn’t sure I’d manage another day let alone another two days, especially given that this morning I caught the tube on a chair as I was moving between rooms and nearly fainted in the process from the agony.

The hard thing was that the nurses had indicated to me, Saturday, that it might come out today, Monday, as long as the fluid pumped from the previous day amounted to less than 30ml. I put the phone down to the nurse and felt crestfallen. Hamish was like, no, call them back and demand to have it taken out! I couldn’t do that. My confidence has taken a dip but surely I could negotiate to have it taken out tomorrow, rather than Wednesday, couldn’t I?

So, I made the call, they put me on hold, and liaised with Mr Kasem who gave them the nod to come today, after all, and remove the darned contraption from my chest cavity. It was the strangest feeling as they pulled the 10cm tubing from my right side under my arm pit. It was the exact feeling I had experienced several times over the course of the last few days, a painful shooting pain, a sort of internal friction going on inside my body that was very alien and not pleasant at all. Now I have been liberated of the wretched thing and I feel like a new woman! I’m not joking, I have no pain, my movement is no longer restricted and I don’t have to lug the plastic bottle and tubing around with me, worried about it catching on something. Derek has officially left the building!! I am free!!!! Hooray!!

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Green Light!

It’s been a couple of weeks since my last blog, it seems more appropriate to write when I have information to share rather than just writing for the sake of it. Don’t want to bore you after all with the monotony of my every day life!

So what’s been occurring? Well, mainly waiting around for the nod as to whether or not this lymph bypass/lymphatic venous anastomosis surgery is going to go ahead or not, alongside my full node clearance.

Both Mr Kasem’s team and little ol’ me persevered to get hold of Mr Roblin’s team the next day, to try and obtain some sort of an update, whilst the plastic surgeon was on holiday. Mr Kasem seemed confident that this surgery would happen and seemed even excited to be involved in such pioneering work. “I want to be there! I don’t want to do it, but I want to see it being done!” he exclaimed.

Well, that’s got to be a good thing. If this turns out to be a mutually beneficial arrangement then all parties will want to show up.

The following day I received a call from Kerri, the breast cancer surgical nurse in Mr Roblin’s team. She explained that surgery wouldn’t be this coming Thursday due to clashes with Mr Kasem’s diary so they have booked me in for 19th May. So, there we have it. A date, now booked. I will have a pre-op meeting with Mr Roblin and his team on 16th May and a meeting to discuss everything else on 4th May with Mr Kasem at the Princess Royal Hospital.

So, with the date in the diary, the nerves have started to flutter a bit. Or course I am pleased with the outcome, that Mr Roblin has agreed to squeeze me in – I’m not sure he ever received the approval of the Board at St Thomas’s – but he’s doing it nevertheless. I am not going to lie, I don’t like the idea of having more surgery and having to heal all over again, banned from driving for 2 weeks and having to take it easy. But I know it’s all for the best. So now I wait.

Last Saturday some friends of mine booked ten of us a bottomless prosecco lunch table at an Abba Revival event. We all got dressed up in our 70s gear! I donned the lilac wig that Carol bought for me, back when I was nearly bald! It had to get it’s outing eventually and I couldn’t think of a better opportunity for it than to whip it out for our Abba afternoon. It was so much fun, too much prosecco, shocking food but amazing company and lots of dancing on chairs and tables! I think there were even a couple of ‘flying games’ that went on on the dance floor! Just like old times. No cartwheels, but I can’t seem to help the acrobatics when I let my hair loose, the music is pumping and the booze is flowing!

With our voices cracked and our throats sore from screaming the words badly to every song we knew, we had the time of our lives, even if the following morning we all cursed that last glass of wine or that last pornstar martini! It was well worth it.

I have days when I have almost forgotten that I need more surgery and I find myself getting stuck into normal, ordinary, busy day life. I am back on the tennis courts playing as much as I can and I have offered to be Freddy’s Parent Captain for his Kent Summer Tennis tournament – which this week I seriously started to regret. The organisation that goes in to making these matches happen, coordinating parent and club diaries, booking courts and managing my boy’s emotions on court when he starts to lose – I’m telling you, it’s a lot.

Freddy absolutely lost it in the last match. He played some awesome tennis but, as always, losing brings out the worst in him. Fortunately the opposition parents were lovely and very understanding. It seems Freddy’s behaviour isn’t unique to a competitive ten year old but it is very hard to watch, as a parent. I’ve bought a book “The Self Regulation Workbook for Kids” for us to work through. I am desperate to try and find anything that will help him learn coping strategies for handling his overwhelming emotions, particularly when he is on court but it seeps into every day life scenarios too – so anything that can practically help him through this bouts of frustration and extreme upset are very welcome.

I spoke to his counsellor at school to discuss how she might also help support him with this and to share coping strategies with him. She asked me what I had been doing with him and essentially confirmed that everything I was doing with him would be what she would also be doing with him in her sessions. Sometimes, I feel, a kid may just respond better to someone else who isn’t their parent so I’ve asked her to go through these with him in her sessions. Even if it’s repetitive, I’m hoping it will reinforce the learning and the messages of how he might be able to deflect his negative thoughts and stress when he goes through these difficult moments.

It’s got me thinking about my coaching business and the need to launch my website properly and go out and get new business but, the sensible part of me is telling me to hold off until I have finished surgery and radiotherapy so I can give my all to my clients and any upcoming projects. I’m just itching to get back into it though. Patience Cecilia.

Then, two days ago, whilst I have been slowly getting back to a more normal, my new normal, existence I notice that the area where I have had my lumpectomy has become hard and lumpy. It doesn’t hurt but there is still bruising from where I had my last surgery in March. I went to check it out in the mirror and noticed my right breast has become deformed. It has been pulled in a way that my nipple has become more inverted and there is tightening around the scar.

I was very worried and called the hospital to try and speak to someone but they are all so busy and it took an age to get through to someone on the breast care team. Finally, when I did get through, I was told to wait for a call back. Hours had passed and all I wanted to know was whether it was something I should be worried about so, I decided to call my lymphatic drainage physiotherapist, Kat. She had kindly given me her mobile in case of emergencies and I felt this was one of those times so I called her. Luckily, for me, she picked up almost immediately and I relayed to her what was going on with my boob.

Long and short of it is, she thinks it might be a seroma. I was warned about this pre-surgery but you don’t think it’s going to happen to you even though it seems 49% of breast cancer patients get one after surgery.

In an article on 12 Jan 2022, Medical News Today describes a seroma as “a buildup of fluids in a place on the body where tissue has been removed. Seromas often occur as a complication of surgery but can also develop after an injury.” Essentially, “the formation of seromas is the body’s response to dead space within the tissue that was attached to something before surgery.” Apparently, this excess fluid will eventually be reabsorbed into the body as it heals but if it gets too uncomfortable, it can be drained using a hyper-allergenic needle. Kat, however, has advised to avoid this where possible as this can create more trauma in the area where you have had surgery by sticking a needle in the healing tissue. So, for now, my mind has settled and I’ll get this checked out by the nurse when we go in and see the team this coming Wednesday.

So, I went to see Mr Kasem and he confirmed it is a seroma in my breast but agreed it wouldn’t be worth draining at this stage. He is confident I shouldn’t have too many problems post surgery given my build, my fitness and my attitude.

I do need to order some more ‘surgery supplements’ that Cancer Options advised so I have them before I go in. Patricia has advised having zinc – which I have to have on an empty stomach. Zinc is best taken prior to surgery. Apparently, zinc reduces wound healing time, rapidly reduces wound size and bolsters immune function to help ward off infection.

I also need to be taking 500mg of Bromelain 3 times a day. Bromelain is an enzyme found in the stems of pineapples; bromelain is useful for reducing post-op swelling. It acts as an anti-inflammatory and boosts the immune system to reduce pain, bruising, tenderness, frostbite, and burns. It is a natural supplement that works the same way as Ibuprofen, the only difference: bromelain will not harm your liver.

The last, but one of the most important supplements for me to take is Modified Citrus Pectin. When I was going through chemotherapy I had this in powder form. It is quite expensive but for surgery I’m having the capsules, one six times a day. I believe it is advised to start taking this in the lead up to surgery. MCP acts as a mop up to any released cancer cells during surgery and minimises potential for spread – which we all dread after we’ve had surgery and gone through gruelling chemo and radiotherapy treatment.

Of course, I’ll need to fast again before, during and after surgery and eat as cleanly in the lead up to surgery that I possibly can. I haven’t been as strict with my diet as I have previously so need to get back on it!

The next time I write will be after surgery so see you on the other side…..

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Meeting the plastic surgeon…

So being home with the kids over the Easter holidays has certainly kept me busy since my last appointment with Mr Kasem – when he informed me that of the two lymph nodes he pulled out, one had macro metasticised. Since then, Hamish left for New Zealand on April 1st and I’ve been keeping the children entertained with tennis camp, sleep overs and play dates, to name just a few things.

Over the last month I have continued to heal and recover well from my lumpectomy and my sentinel node biopsy – where they removed 2 of my lymph nodes. I have found it quite straightforward and have had little discomfort. The scar has healed well and even though sleeping on my right side can still be a little uncomfortable, I feel I have regained pretty much most of my movement in my right arm, to such an extent that I have got back on court and played a couple of games of tennis!

On Friday, 8th I received a call from St Thomas’s hospital inviting me to come up to meet the plastic surgeon Mr Paul Roblin. They had pre-warned me that he only does clinic for breast cancer patients on Mondays, which I knew was already going to be a problem given I had promised to look after my friend’s girls on Monday 11th, to help their lovely mum whilst she visited her husband in hospital. The following Monday was Easter Monday and he wasn’t going to run a clinic on that day and then he is off on holiday for two weeks. I had arranged to look after 5 children on the 11th and take them trampolining, all booked and paid for, and was told in no uncertain terms that Monday 11th at 1:30pm would be the only time he would see me. Well, I can tell you, I wasn’t best pleased. I don’t like letting people down and I seriously thought about missing it and waiting for a later appointment but my wonderful friend, Marie, came to the rescue and took the kids back home to hers after trampolining so I could run like a mad woman to catch the 12:30 train from Hayes up to Waterloo! It was a glorious sunny day and I have never sweated so much in all my life! Nice!

My friend Carol, who has been a life saver on many many occasions, gently insisted that she accompany me to my meeting with the plastic surgeon, so she met me there and we waited, together, nervously in the large waiting area of St Thomas’s Hospital until my name was called.

15 minutes later, Carol and I walked in to a small room where there already sat an Indian lady, Tasmine, who explained she was Mr Roblin’s surgical helper. There was also a nurse, who looked rather new and sat far back against the wall of the room, out of my eye sight. Tasmine was there to answer as many of my questions about the lymph bypass surgery that I had. Obviously, I had done some more research and typed up 20 odd questions in preparation for my meeting with Mr Roblin. Half way through, a breast cancer nurse by the name of Kerri entered and remained standing, leaning against the side wall. The room was starting to feel particularly cramped at this point. Tasmine explained that Mr Robin would be in shortly to talk to me but I got the impression he was super busy and didn’t have a lot of time to see me, hence why I was meeting the rest of the team first.

At one point, Tasmine left the room to seek out Mr Roblin and Kerri, who up until then hadn’t said much, stepped in to answer some of the remaining questions that hadn’t yet been answered. She was wonderful. Carol and I got such a great vibe from her. She was very knowledgeable, very efficient, and every likeable. If she was going to be on my team and my direct contact then I would be very happy indeed.

Mr Roblin eventually walked through the door, dressed in his surgical uniform and masked up. He sat down in front of me at the desk, where Tasmine had sat previously. He looked at me and then said outright, with no hint of humour or sarcasm, “I’ve heard a lot about you”. Now, when I heard that, my first reaction was, “goodness, what does that mean?” It’s not outside the realms of possibility that such a statement could be taken in a negative way but then I quickly shushed my thoughts deducing that, if it had been negative then surely he wouldn’t be willing to see me and fit me into his busy schedule?

Bottom line, I liked this man. He had no ego, was efficient, to the point and seemingly very competent. I didn’t do my research on him beforehand, mainly because he was recommended to me by Mr Kasem, who I know has had several conversations with Mr Roblin about me and my concerns for having full node clearance and getting lymphoedema. I know Mr Kasem refers to Mr Roblin as “his plastic surgeon guy”. So my thinking, professionals stick together like birds of a feather so there is mutual respect and admiration between the two surgeons and, therefore, trust.

What I learned was that St Thomas’s has only being doing this kind of lymph bypass surgery for the last 1.5 years. They have had approximately 40 patients but it is still too early to know for sure how effective the surgery has been in terms of reducing lymphoedema for them because it can take several years before lymphoedema appears, however, it is most common in the first three years after surgery – and it hasn’t even been three years since their first patient!

I also learned that, this type of surgery is microsurgery and can only be done by a plastic surgeon but it is an operation that has historically been conducted upon patients once they have already developed lymphoedema. Whereas I am asking for this surgery as a preventative measure rather than a curative one. I don’t want to wait until I get lymphoedema to have to go back under the knife to fix it.

Essentially it seems that there is no detrimental reason why I shouldn’t agree to this specialist kind of surgery alongside my having my nodes out. If I was to decline the bypass surgery there is a 25% chance of developing lymphoedema as a result of them removing all my lymph nodes. Which is quite a high figure, I feel. Having the bypass surgery in addition to the ALND doesn’t increase the recovery time or healing period, supposedly. All it does is add an extra 45 minutes on the operating table. He also explained that there is also the possibility that he may not find a good enough lymph vessel to attach the vein to, in which case I won’t be able to have the bypass surgery and will have to wait to have it, if and when I ever develop lymphoedema, and then they’ll need to try and attach a lymph vessel further down my forearm. It is also possible that even with the bypass surgery, I may still get lymphoedema, but I think the positives outweigh the risks.

Whilst they can’t guarantee that I won’t get lymphoedema, there is some evidence to believe that this bypass surgery can reduce the chances of it developing by up to 50%. He didn’t clarify why they were considering someone like me but I deduced, having read a bit around the subject, that if you are active and of slim build, there is some belief that this increases your chances of remaining lymphoedema free. Ultimately, I may have this surgery and never know if it was the surgery that prevented me from getting lymphoedema or if it is just that I am one of the lucky ones? I will just have to wait and see. I also have the added challenge that given I need radiotherapy after this to complete my breast cancer treatment, there is a danger that the radiation could undo the bypass surgery by radiating the good lymph vessel that has been linked up to the vein as part of redirecting the lymph drainage system. Again, it is something I have to wait and have a conversation about with the radiologist when I get to that part of my treatment.

I asked Mr Robin why this type of surgery wasn’t offered as a standard to patients who need full node clearance (ALND)? The answer was simple: “there isn’t enough evidence, yet, to show which people are more likely to get lymphoedema and those that won’t”. So, given there isn’t enough data of it’s success and that it adds an extra 45 minutes on the operating theatre involving two surgeons, one breast and one plastic surgeon, that doing this for every patient would indeed be very costly and time consuming. So, as such, it is not currently being offered as a preventative measure.

So, I questioned him, “why have you agreed to do it for me?” To which he responded, “well I have yet to convince the board of the hospital to let me do it”. Talk about a jaw dropping response! I was struck dumb. All of a sudden, I knew what I wanted. I was desperate to have this surgery but I don’t even know if he’s going to be able to convince the board. When I finally found the words to speak, I asked him, “why do you have to convince them?” – already pretty confident it would be something to do with money… And he answered, “because I have to fit you in amongst all my fee paying patients and the board aren’t happy about me doing it”.

So tomorrow, after I pick Hamish up from the airport, we have an appointment with Mr Kasem and my oncologist and I suspect, they’ll tell us then, whether or not Mr Roblin has managed to persuade the board to let him do it for me or not….

Today is Wednesday, 20th April. It’s been a big day. I played a couple of games of tennis then headed to the airport to pick up Hamish, who has been away for 2 weeks and 5 days! Too long. It was wonderful to see him and wonderful to be enveloped in his arms when he finally came through arrivals. He brought home a whole heap of Kiwi chocolate for us all – so bad! Hamish’s parents, Fran and Barry and spoiled the kids by choosing some very thoughtful presents for them and the most beautiful mohair blanket, that I have now put pride of place on the bottom of our new super king bed! It looks gorgeous!

Hamish got to spend some much needed time with his parents, his sister and her family and a bit of time with his intellectually handicapped brother, Paul, who has been having a whole load of medical problems lately. The trip allowed him to also catch up with a number for his old friends, who I know are very dear to him, but as Hamish said, “there wasn’t enough time…it felt too rushed”.

And there I was rushing him out the door, just an hour after we returned home to get to my 4pm appointment at the hospital. But, the trip to the hospital was a complete anti-climax. We arrived only to find that my appointment had been cancelled but no one had told me! I was so upset. I’ve been waiting to find out since my appointment 9 days ago with Mr Roblin whether or not he’s managed to convince the hospital to put me on his list and when surgery will begin.

I decided to head to the chemotherapy suite to see if I could find any of my breast care nurses and came across Brooke and Joy – my favs! They welcomed me like a long lost friend and we all hugged and they ooo’ed and ahhh’d about my new hair style – I keep forgetting how it’s changed. I then explained why I was there and the frustration I felt at not being told that my appointment had been cancelled. Immediately, they rallied around and went to sort out the problem. Soon after Brooke returned with another nurse telling me that Mr Kasem would squeeze me in. Hamish and I went through about 45 mins later – just enough time for poor Hame to catch up on a few z’s. Poor thing had only just walked through the door after a long flight back from Auckland.

Basically, there is no news. He’s heard nothing from Mr Roblin, which must mean he’s now on holiday. Mr Kasem has booked me in for another meeting in 2 weeks time but hopes to have heard more from Mr Roblin’s team before then. He suggested there may be the option to have radiotherapy first before the ALND because there is the danger of the good lymph vessel being damaged due to radiation, thereby making the bypass surgery redundant. But, we’ll see. It means more waiting. Something I’m having to get used to.

So we returned home, none the wiser but, upon our return, Hamish chose to cheer me up by presenting me with the most gorgeous gift from a group of his close friends in New Zealand. It is a very special jade necklace made by an artist of Maori descent and is referred to as Paunamu. It is a half moon breast plate which stands for protection, integrity, authority, strength and represents the sacred feminine. There are hand stitches of thread sewn through the stone which represent the stitches of time and are the stories of life. These lovely friends have very considerately chosen this necklace and have followed tradition by having it blessed so that I may be protected, as I wear it, with all their healing thoughts and prayers.

Once again, I am humbled every time someone takes the time out to think of me or reach out to me but I have been particularly moved that a group of friends, on the other side of the world, whom I have only met through Hamish but, all of whom I call ‘my friends’, have taken the time out to write such heartfelt words in a card and gone to so much effort to find something so meaningful and precious to let me know they are thinking of me. I am truly humbled. Thank you all. You know who you are. I will wear it and trust that it helps keep me safe and well on the next part of my journey.

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2 1/2 weeks since surgery…

I feel these last two and a half weeks have really crawled by slowly whilst I recover from surgery and wait to hear the results from the surgeon…

I have really struggled with the decision as to whether or not I should post a blog this week. Namely because so many of my close friends are struggling with their own personal battles. Some of these struggles are massive, life-altering challenges that will have a ripple effect on themselves, their families and their children for many years to come. It is not my place to share their stories for it is their communication to give, not mine, but I see and hear their pain and I can feel it in the pit of my stomach. Life can be so cruel.

Hamish, has had to fly home back to New Zealand for a few weeks to be with family and friends who need him right now, more than I need him. We haven’t been apart since all this began so it feels a little strange. I know he needs to do this but poor Hamish’s journey to get to New Zealand has been fraught with challenges from waiting to book a plane ticket until I could drive again (2 whole weeks!!), Covid testing and retesting, to delayed and missed connecting flights as well as lost luggage!

When I spoke to a couple of good friends, having explained my dilemma, should I skip writing a blog this week? Their response was that “with darkness their is light” and given the way I began this blog, right back at the beginning in July last year, I made the point of being honest about my feelings, sharing the ups and the downs I have experienced on my journey, so why stop now? The problem I have is that it just feels there are so many people I care about hurting right now and writing about me and my results feels a little self-indulgent.

I imagine most of us, during times of distress, experience the pull of despair versus the expectation by others for us to carry on. At the darkest periods in my life I have hoped and prayed to see another day, to find the strength to get up in the morning and carry on – if not for me then for my kids, for my husband, for the people around me who care. Sometimes I felt I didn’t have the strength in me, so as a good friend recently articulately explained, “that is when you have to allow people in, to let them pick you up and help move you along just so you can take that next step which will help you get just a little bit further along in your journey”.

It feels to me, right now, that so many people I care about are finding themselves in a situation where they are having to spin multiple plates just to keep afloat, through no fault of their own. It’s easier for me to be positive now because I’ve almost made it through to the other side and with a good outcome. But, I remember the days I felt very alone and very scared and worried that I may not live to see my children grow up. I don’t think many people go through life completely unscathed. We all end up experiencing something life altering along the way, whether it has happened to us personally or happened to someone close to us. There is something about life being cyclical. None of us can avoid it. We will experience horrendous times but if we can just hold on, just a little bit longer, the tide will turn. But it’s the waiting, the watching the clock, time can go so slowly. We know time is a healer but sometimes it can’t go quick enough to get us to the stage where we aren’t hurting quite so much.

Only the other day I was talking to another breast cancer friend who bravely shared with me that she was feeling a bit ‘angry’ about everything at the time. It is another emotion I am familiar with, but admittedly more at the beginning of my diagnosis than now. Today, I feel bizarrely very grateful, almost appreciative of the illness I have had and the journey it has taken me on. I get compliments regularly on my new cropped hair – a style I never ever would have been brave enough to choose, if the choice had actually been mine in the first place. I have learnt so much about diet and food that I managed to lose 3 stone, put half a stone back on and maintain it. I would have been happy with losing one stone but pre-diagnosis I found losing even 3 pounds impossible! I can educate my children and my family about what to eat to keep healthy and protect themselves in the future. I have been touched by people reaching out to me, offering me their time and help, some asking me for my help when they or their loved ones have been diagnosed with cancer. Of course, I will never claim to know everything, I’m not a doctor, nor am I at all in any way qualified to advise on other cancers but, these people have allowed me to share my breast cancer story with them and somehow it seems to have helped a few along the way.

I have had to remind myself one of the reasons I began this blog was as a means to share my experiences to help those who find themselves in similar situations to me in the future. I was never going to be anything other than honest and real. So as I embark on the next part of the journey post surgery this is where I find myself…

The two weeks since surgery have passed by without incident. I have practiced my arm movements religiously, 4 times a day, and followed the lymph drainage massage exercises to move the lymph from the right side of my body down and over to the left side – just in case the lymph nodes aren’t working at their optimum on my right side given I’m now missing a couple!

My recovery has been quite easy. At first, as you’d expect, I was a little tender and uncomfortable with the padding around my arm pit and breast area. I had to use the frontal fasting bras to keep everything in place day and night and wear compression stockings that did get quite uncomfortably hot at night – still going through hot flashes and night sweats – so that didn’t help things. But you do what you have to.

On the Monday after surgery the nurses rocked up and took off the dressing, which made it less bulky and I managed to sneak a peak at the scar – a sort of morbid curiosity. It’s a very neat clean cut about 3 inches long curved around the side of my breast up towards my arm pit. On day 7 I was allowed to wash it properly and I was advised to gently take off the steri-strips. They were really tricky to get off. The nurses had certainly sellotaped me up good and proper and so I was a little nervous pulling them off in case I re-opened the wound. But it didn’t happen so all good there.

It was very weird trying to shave my armpits, now that i have hair there! My right arm pit is numb so I can’t feel the shaver. I have been told I may never regain feeling under my arm. I have lost weight so I now have a hollow in my arm pit that makes it difficult to get the shaver in to. I have also noticed a hard lump inside my right breast, slightly different location to the original lump but a lump nevertheless. I need to ask about it when I see the surgeon on Wednesday. I’m hoping it is just scar tissue from the excision during surgery.

I pre-booked 3 hyperbaric oxygen therapy sessions for both the first and second weeks after surgery, knowing the importance of getting as many in as I could.

According to one website: hyperbaricsorlando.com, they write:

“What are the benefits of hyperbaric oxygen therapy for surgery recovery?

The desire to safely and quickly heal after surgery is where patients often first discover hyperbaric oxygen therapy as a post-op healing treatment. 

By exposing the body to an atmosphere of 100% oxygen that’s at least 10-15 times the normal supply, hyperbaric oxygen therapy works to safely speed up the body’s recovery time by up to 75% after surgery by:

  • Limiting swelling, bruising and inflammation
  • Reducing pain without the need for post-op pain medications
  • Elevating the body’s natural immune defences to fight infection and bacteria.

The oxygen-rich environment of HBOT accelerates healing by allowing more oxygen to reach the areas of your body most affected by surgery, such as your incision, so that your body is aided in its fight to heal and reduce your post surgery symptoms.”

But, because I wasn’t allowed to drive for 2 weeks post surgery, I had to rely on the kindness of some of my lovely friends to take a few hours out of their busy day to drive me down and wait for me whilst I embraced the oxygen chamber! Now that the Easter holidays are upon us and Hamish is away, it’s not so easy to do this so I managed one session this week and I’ll now have to wait until the kids go back to school to resume any future ones.

The big event this week and why I’ve waited 2.5 weeks to write this blog is because I’m booked in to see Mr Kasem on Wednesday to discuss the results of surgery. I’m feeling positive about it all but mostly because they operated on me for less than an hour, which has to be a good thing, especially when they told me it was going to be a 2 hour op. They only had to make one excision and only took 2 lymph nodes out. My thinking is if they had found anything untoward under the microscope post surgery they would have called me back in to discuss it sooner than 2.5 weeks post surgery. But, one has to be prepared for all eventualities, so if it turns out they have found more cancer, my thinking is that aren’t concerned about it because what the surgeon didn’t take out during surgery will be eradicated during radiotherapy – hopefully…

So, I’ve been to see the surgeon… I went with one of my best friends, Nompi, who generously took a half day off work to come with me, given Hamish is in New Zealand – just in case I should hear results I wasn’t expecting. Continuously throughout this week, it is with Nompi that I have have been discussing my concerns around what I should write in my blog. She has made some poignant insights that have really helped me understand where I was, the journey I have made and where I am now. I am so grateful she came with me because I did not get the good news I was hoping for. Basically I need more surgery…

Mr Kasem explained that they found 23mm of cancer in the tissue they excised from my breast during surgery. Fortunately, they have taken that out and there is no further cancer in the breast. So, the scans were wrong. The cancer hadn’t been completely eradicated. I had been warned about this from other patients.

The bigger issue is that of the 2 lymph nodes that were removed one of them was free of cancer but the second was cancerous. He explained they have 4 gradings when they grade the cancer in the lymph nodes. I have the highest grade of cancer in this one lymph node and so they are advising me to have full lymph node clearance. He went on to share that these two lymph nodes were chosen completely randomly and he wasn’t even sure if what he was taking out were in fact lymph nodes but they were. So, the chances are that more lymph nodes have been affected and there is no way to distinguish between them so it is better to take them all out. We won’t know until they are all out and examined under a microscope whether or not more have definitely been affected by cancer.

Mr Kasem is offering to honour my original request to have lymphatic bypass surgery whilst they remove all my lymph nodes in the hope of minimising the risk of lymphoedema. The bypass surgery is where the surgeon re-routes lymphatic fluid by joining lymphatic vessels onto small veins just under the surface of the skin. It is in essence microsurgery and needs an expert surgeon to perform it.

Mr Kasem is offering me a meeting with his recommended plastic surgeon at St Thomas’s next week. But, he mentioned that this hasn’t been done by the PRUH before but they are prepared to make an exception for me, given the research I’ve done. What I do not know yet is if I’ll be their first patient undergoing this operation ever or if I’m just the first breast cancer patient with the need to have full node clearance being offered this type of surgery? I think, it is more usual to perform this kind of lymphatic bypass surgery on someone who already has lymphoedema rather than as a means to prevent it, as in my case. It also concerns me that in a 2009 paper entitled ‘Controversial microsurgery may ease lymphedema, but long term results aren’t certain‘ states that “A very small study shows that lymphaticovenular bypass surgery can ease lymphedema, but the procedure requires special training and is controversial because it may make lymphedema worse if done by an inexperienced surgeon, and it’s unclear if the benefits last over time.” I need to know what the results have been since that 2009 study.

So not only do I have a bit more research to do, I have to get my head around having to go under the knife again, to have to build up my arm muscle and learn to move it again and start the recovery process again with the knowledge that I still have to have radiotherapy treatment.

I feel completely floored. I’ve cried and cried since I got home. Once again I find myself at the bottom of another big mountain, having only just climbed the peak of the first one. I thought I had reached the finish line. I haven’t. I’ve got another peak to climb. I was so positive. It’s so much easier to look for the positives when you are in a positive frame of mind. I really thought I had beaten it. I feel so overwhelmed, so disappointed, so deflated. But, like every challenge I have to approach it one step at a time.

As Nompi suggested this afternoon, perhaps the last 9 months has been “tutelage”? – the learning of how to cope with life and death situations, picking myself up even when the odds were against me, finding a way to get back on top and fight my way through the darkness, belief in myself that everything will ultimately turn out ok. So now, today, I am sent the real test where I need to “apply” what I have learned since my diagnosis to prove that I can indeed navigate the upcoming terrain of whatever life throws my way.

As I tucked our boy into bed this evening, holding him tight as he sobbed in my arms, I did my best to allay the fears he has for me and the upcoming surgery. I know I have no other choice than to find the strength from within, to dig deep and weather the storm. I now have to put what I have learned into practice. I’ve done it once before, I can do it again…

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The Operation…

This photo is one taken by my daughter, Ava, on the eve of my 51st birthday! And I felt happy, healthy and content. Today, is the day of my surgery. The day that has always been, in my mind, a day that I would reach one day in the future. And, all of a sudden, that day has suddenly arrived. Like most people going into surgery, I know my feelings are not unique but I have to say, I’m not often frightened, nor anxious, but today I am.

I know, in my mind, that I have done everything I can possibly do to maximise my chances of a successful outcome. I have literally chucked everything at it, bar the kitchen sink! But, those nagging questions still keep going round my mind: What if there is more cancer? What if when they open me up they see something that the scans didn’t pick up? What if my right boob looks deformed after surgery? What if I get an infection? What if there are complications? Oh gosh! Stop it Cecilia! Sometimes you have to have a word with yourself! I do anyway, on many an occasion.

I’m not the first nor will I be the last to go through breast cancer surgery. My school friend Siobhan Watling and another friend Joanna Shaw have recently been through it and they had surgery first! No time to get their head around it all, I’m sure, and they both had single mastectomies. How can I complain? I’m having a lumpectomy or ‘breast conserving surgery’ – a procedure that I have been told is less invasive. But, of course, there’s always a chance that they could find cancer at a cellular level and will need to go back in for more.

Well, these last two weeks have been quite quiet in the sense that there hasn’t been much going on treatment or hospital appointment-wise. I’ve had some wonderful catch ups with my sister and her family when my lovely Mummy was over from Spain visiting. Well, yes visiting, but she had to come over to open up a UK bank account in person – because you can’t do that over the phone! Rather expensive way of doing it but, on the flip side, we got to spend some quality time with her!

I met up with friends for lunch, dinner and even had an outing up to London with Hamish, my sister and my brother in law to go to the Comedy Store preceded by a ‘cook your own steak’ experience in Piccadilly! It was a Christmas present we had given them! We laughed and laughed and laughed! Glad my pelvic floors are a little stronger now a-days! Too much information???? Sorry!

I had the pleasure of having lunch with one of my besties, Nompi, and her gorgeous sister Sandi last week. Sandi lives in South Africa and had flown over to specifically visit her other sister who lives in Finland and who was due to give birth to her second child any moment! I think it’s really fascinating meeting your friends’ family members. You get a greater insight into them as a person and a little more historical context. I loved meeting Sandi. She is a beautiful, bright, strong confident lady and although we didn’t have more than a couple of hours in each other’s company – we had a connection – and I now have a new friend. Look at me – living the life fandango!

I have, of course, tried to play as much tennis as I can – almost 3 times a week! I’m going to really miss playing for a while – especially now that the sun is coming out a bit more consistently. Patience has never been my strong point!

I have attended as many hyperbaric oxygen therapy sessions as I could. Sometimes that was three times a week – my optimum – but no less than 2 times a week. I’m still going for the highest depth at 33ft but I opted for the 24ft last week as they couldn’t squeeze me in on the 33ft session so thought better to have something rather than nothing. I can’t tell the difference really but I’m told that breast cancer patients need the greater depth session. The oxygen therapy will have helped me prepare my body for the trauma of surgery and then I’ve booked myself in for the following two weeks. I have even organised a rota for drivers who have very unselfishly given up their time to take me to my therapy in Swanley and bring me home again – given I’m not allowed to drive for 2 weeks post surgery. We are lucky to have these angels in our world but, right now, they are my angels. You know who you are, thank you from the bottom of my heart.

This week has mostly been about celebrating my birthday as best I could, given the need to self-isolate before surgery! Even though I had Covid as recently as 1st Feb. But, apparently, you can still catch Covid within 90 days of last having had it! So I had a low key day at home and a lovely home cooked dinner with the family! People dropped by or posted presents, cards and so many flowers! My kitchen looks like a florist! Not complaining! I love, love, love flowers! I have flowers in practically every room of the house now! Yay!

At the beginning of the week I had my pre-assessment phone call with one of the breast cancer nurses. Basically a run through of what to expect and make me aware of the things that can go wrong. At that time, the surgery day seemed far enough away for me to not feel any real worry or fear and so, when I took the call I was multi-tasking and replying to emails whilst I was listening. Not very sensible, I know. You can’t retain important information like that when you aren’t giving it your full attention! I ended up having to phone the hospital yesterday to confirm what I understood was needed of me – because I am not allowed to eat anything after 7am today – the day of surgery – and not allowed to drink anything, not even water, after 11am today. Surgery will be sometime this afternoon.

In the lead up to today, you’ll remember one of my greatest fears was that I could get lymphodema (a swelling of the arm, pain and restriction of arm movement) as a result of lymph node removal and future radiation. One of my friends is a physiotherapist. She told me about one of her colleagues who is a breast cancer lymphatic drainage specialist. I had been deliberating whether or not to pay to see someone before surgery, so that I would know exactly what exercises to do. The hospital had informed me that I would be taking a leaflet home with me that explained the kinds of exercises I should undertake upon returning from the hospital. But, I’m someone who likes to be shown how to do the exercises so I know that I’m doing them correctly. So Kat kindly agreed to facetime me this week and talked me through everything. I’m so glad I did!!!!!

I learned heaps! Firstly, apparently it can take up to 18 months to fully heal. Kat asked me to tell my story and, whilst I didn’t want to spend my whole session with her doing all the talking, I do have the story of how I was diagnosed and the events of the following months down to a tee! So, I began my detailed summary… Thank goodness I opted for the details (Fi Brook – you’ll be very pleased I remembered all the details!) rather than top line summarised the circumstances of my treatment. Even choosing to leave in the detail about being stung by the ‘fateful’, Spanish, jelly-fish back in August! So glad I included it because, when Kat was taking me through all the exercises that I need to do from tomorrow onwards, she identified the need to teach me how to move my lymph from my right shoulder, down and across to the top of my left hip – so across my body rather than straight down. “Why?” I asked with curiosity. Well, apparently, I’m in the re-modelling phase of healing from my jelly fish sting 7 months ago. It means that my lymph nodes at the top of my right leg aren’t back to 100% working capability – the area, you may recall, where the doctors incorrectly identified a suspicious mass by my right groin area. Healing goes on for up to 18 months after trauma and the jelly fish sting is considered trauma. Crazy hey!

Kat then asked me if I happened to be descended from Celtic, Scottish or Viking heritage? What a strange question I thought to myself. Well, actually not so much thought, I actually asked her out right – “what kind of a question is that?”. When I admitted that I was half-Viking, she worryingly went on to explain that, as a Viking, we have something in our genetic makeup that makes us more prone to cording. Cording is where, post breast surgery, particularly with lymph node removal, you develop hard, cord like thickening under the surface of the skin which can be painful and restrict movement. It is thought to be caused by inflammation and scarring of the tissues that surround the lymph vessels, blood vessels and nerves. Blooming typical. First time, I have to say, that being part-Viking hasn’t worked in my favour!

The other reason I am grateful for having spoken to Kat is that she told me something contrary to what the nurses told me when I had my pre-assessment chat. Apparently, I may also develop a seroma – a build up of fluid in the body as a result of having my lymph nodes partially removed. It’s not dangerous but can be painful and uncomfortable. The nurse told me, that if I got one, then I should call the hospital and come in and get it drained. Kat, conversely, suggested that unless it was painful that I shouldn’t get it drained because when you drain it, it creates a well and the lymph just pools back into the well and may well develop another seroma. This is a problem because when you drain the seroma, it is done with a needle which, in essence, creates more trauma each time the seroma is drained. There is a risk of infection, inflammation and a build up of scar tissue. The things we learn!

So at 9:30am, I went in to the nuclear medicine section of the hospital for this morning’s pre-surgery injection where they insert a radioactive dye into my breast so that it can be taken up by the lymph system. The dye flags up which one of my nodes is the sentinel node (the main node) so the surgeon knows which one to test this afternoon. When you see word ‘nuclear’ over the door, it can throw you a bit off scent. The nurse explained she was going to inject into my right breast, where the centre of the lymph system is and the area being tested. She went on to tell me that the reason why they do it earlier on in the day is because the lymphatic system is quite slow to react and so we have to give it enough time for it kick in and light up which of my nodes is the sentinel node. She warned me that I might feel a burning sensation as she injected me. It was short and swift so all good.

I’ve got to wear these really sexy post-surgery, frontal fastening bras all day and night for the next 2 weeks as well as DVT stockings! I’m only allowed 1/2 hour respite when I wash. I think I could get used to the frontal fastening bra though! Way easier than trying to dislocate your shoulder doing up bras from the back!!!

Back home now and have 9 minutes until I’m not allowed to drink any more water and then head into hospital in a 1.5 hours. Not that I’m counting down or anything! See you on the other side……

So…. things are never quite straight forward are they? Hamish dropped me in for 12 noon as he had a call to get back for for 12:30. I thought I’d use the time to soak up some glorious sunshine, just outside the hospital entrance. Stalling the inevitable. Thought I’d try facetiming Mummy. At 12:15 I went in. I had to fill out some forms before the nurse came to collect me and take me to one of the beds set up in a dormitory style way, separated by blue curtains on rails. I noticed there were ladies who had brought slippers and dressing gowns in – despite them only being there for day surgery. At that moment, I wish I had brought my slippers with me but at least it was one less thing to have to carry out when I was done.

Being on the ward, ones senses are all of a sudden heightened, listening to everything and watching what is going on. Wondering what each patient was in for? I became acute to every sound and sniffle. Every cough, every conversation. I had a lady next door to me who was constantly sniffing and clearing her throat – was a bit annoying but you can’t say anything though. Some were in for mole removals, some for spinal work but I know there was at least one other lady, older than me, who was also in for breast surgery. She was taken in before me. After all my prepping, changing into hospital gowns and a very fetching pair of netted underpants, I was told that all I had to do now was sit and wait. 2 hours approximately. Thank goodness I had my book and magazine.

During the prepping Mr Kasem came to see me and go through the procedure. I was given consent forms to sign etc. They gave me a list of instructions of what not to do after surgery including no drinking of alcohol for a few days, no heavy exercising or lifting, the pain relief I should take and how often etc. I then asked about drinking water, as I was thirsty, and Mr Kasem answered, “yes, that’s fine as long as it’s clear water”. I do remember the pre-assessment nurse informing me that I shouldn’t drink anything after 11am but given it was the surgeon telling me, I took that to mean, that I was good to sip away at my water bottle as long as it wasn’t flavoured water – but I was wrong.

At 15:20 the anaesthetist nurse came to finalise my prepping before going into surgery. One of the questions being: “when was the last time you had a drink?” To which I answered, “I had a sip of water just now”. Suddenly my bed was swarmed by 6 busy nurses all giving each other the evil eye and blaming each other and asking which nurse was supposed to be keeping an eye on me. The nurse who prepped me started trying to defend herself by relaying what Mr Kasem had mentioned to me about alcohol etc and I had to pipe up and quote what he had said to me about allowing me to have water “as long as it was clear”. Whatever the case, I wasn’t supposed to have any liquids 2 hours before surgery because, apparently, it will affect the anaesthetic. The nurses then stated that the operation “can’t go ahead now”. There was a lot of hustle and bustling about about what to do next. The head anaesthetist showed up next and wanted to know how much water I had drunk etc – lifting up my metal water bottle shaking it from left to right in the process. He then went off to have a word with the surgeon and returned asking if I had had the nuclear dye earlier that morning. Which I confirmed. Off he went again and then returned telling the nurses that we’d wait an extra hour and I would be expected to go in at 16:30 with the likelihood that I’ll need a special tube inserted into my stomach to drain off the excess water that I had drunk. I was instructed to let no water pass my lips until after surgery – well that goes without saying! Wasn’t going to make that mistake again!

Drama over, I was going in. Slowly the ward was emptying out. Discussions amongst the nurses continued about when people were going home that day and others consoling those who had to stay behind to look after their wayward patient – me! I already felt guilty enough as it was. Guilt combined with nerves – I felt on the precipice of tears much of the time. Finally I was taken in to surgery. They put a cannula in my left arm and explained what was going to happen. They then brought in a machine to check the effectiveness of the radioactive substance I had been injected with that morning but it was no longer working so was told I would have to have the blue dye administered. This blue dye is responsible for identifying the main lymph node and makes it easier for the doctor to find the node during surgery.

When I came round, I was super whoozie. Struggling to keep my eyes open but keen to retain what information they were giving me. I managed to take a look at the clock on the wall and read, without my glasses, that it was 17:30 – only one hour on the operating table! That’s got to be good. Doesn’t it? Just hope they weren’t trying to speed up my surgery because of the water incident that had delayed the start of surgery! I’m sure that wasn’t the case, one of the reasons I was drawn to Mr Kasem is that he is known as one of the most careful and meticulous breast surgeons there is! Mr Kasem bent over my bed as they got me ready to be moved back into the ward and told me that they only had to make one excision – so they only needed to go in once which can only mean they didn’t find any more cancer and they took out only 2 lymph nodes! I find out in 2 weeks time the full results but for now all is good – over and out! x

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Lucky me!

Sorry for the radio silence but we finally made it on holiday and only returned from Mexico Saturday gone! 10 full glorious days of sunshine and much needed “r & r” and several pina coladas later. It took a metaphorical mountain or two to climb to get there and the challenge of Covid and two children left behind – one of which was very anxious about our going, but we did it.

I don’t think Hamish and I believed the holiday would actually happen. Even just before boarding, we were pinching ourselves to check if it wasn’t all a dream. I’m pleased to say, it was definitely real and even more pleased about the call I received from my surgeon, Mr Kasem, whilst we were strapped into our seats on the plane, minutes before take off. This was the meeting we were scheduled to have in person later that day but given we’d be in the air by then, I had desperately tried to bring it forward. But Monday morning I still hadn’t heard back from the hospital if he’d have time to squeeze in a call before take off at 10:50am. At 10:43 he called and I managed to hear his accented voice over the hustle and bustle of passengers placing luggage in overhead compartments and instructions being broadcast over the aeroplane tannoy.

Mr Kasem was ringing to tell me the results of my most recent PET scan which confirmed, miraculously, that I have had “a complete metabolic response with significant reduction at all sites of the disease” including the lymph nodes. Basically, what that means is they can’t find any obvious signs of cancer remaining. I will still need “breast conserving surgery” or a lumpectomy in order to remove the metal marker I first had inserted back in July to measure the progress of the cancer. They will then look at the surrounding tissue and examine the cells under a microscope to check for any remaining cancerous cells. If they find some, they’ll need to go back in and remove more.

They have also agreed, after much deliberation and convincing from me, to only do a sentinel node biopsy rather than a full node clearance. He has to tell me that this isn’t protocol and that I may be prone to breast cancer recurrence by not having an axillary node dissection. I am, however, confident with my continued focus on a clean and heavily cruciferous diet (supported by supplements), ongoing oxygen therapy, continuation with repurposed drugs (Metformin and LDN), alongside daily veggie juicing and exercise, that I will not have a recurrence. Thanks also to my gene test, I have a better understanding about what led my body to start mutating cells that developed into breast cancer so as to avoid any future relapses.

I could have punched the air with happiness, as I finally ended the call and put my mobile on flight mode. It was the perfect beginning to our much needed holiday. One of the air stewardesses must have overheard my conversation and later snuck a little bottle of bubbles to me – usually only reserved for those in Business or First Class. I was very touched.

I won’t turn this blog into a diary about our holiday but suffice to say, we had a fabulous time. We had sunshine every day apart from our second day where it was very overcast and rainy but turned out to be a blessing as we took the time to take a trip to Cancun – a half hour taxi ride away – to buy some warmer clothes. We were informed, whilst booking our restaurants for each night, that at The Barcelo Maya gentlemen may not dine at the finer restaurants without long trousers and closed shoes. It was a bit of a problem given Hamish had only brought with him one pair of cargo trousers which he wore on the plane and some smart shorts. The flight over was also so cold that we both realised we’d need a jumper or additional sweatshirt each to wear on the plane back home. So, we took the opportunity to go shopping in Cancun and ended up buying a few items each in Zara – can you believe????

The Mexican sun warmed my skin and topped up my Vitamin D levels. My hair has started to grow back on my head and that also includes an almost complete set of eyebrows and eagerly expanding lashes. That said, whilst sunbathing, I would catch glimpses in the sunlight of little hairs growing back on my legs and tummy and stray wispy hairs starting to appear under my arm pit – winking at me! So bizarre seeing hair coming through on my skin where for months it has remained smooth. I hadn’t needed a wax before I came on holiday but I could see it wasn’t going to be long before I would need to book back in with my lovely wax lady, Harri!

We managed to play tennis most mornings and booked in for hydrotherapy every day – where you move between extreme hot and cold environments to boost your metabolism – made up of a steam room, infrared sauna, hot bath, ice fountain and an iced bath. Hamish got very in to it, managing to stay in the ice cold pool for up to a minute at a time. I think the most I managed was 15 secs but it wasn’t a competition! I was so happy to see they had an infrared sauna as part of the hydrotherapy experience, given how important it is for my healing and detoxification.

We also had a Swedish Couple’s Massage on our second day and booked fabulous excursions that included a trip on a catamaran to La Isla Mujeres and visiting the Mayan City of Tulum, snorkelling in cenotes and, best of all, swimming with turtles – something that has been on my bucket list for years!

We had been so worried about our Freddy, given he’d just started counselling and the kids having to move from pillar to post to stay with friends whilst we were away. We facetimed them most days but we both missed the kids massively, despite our knowledge that they were safe and our need for the two of us, Hamish and me, to reconnect and have time just for us.

Then, a few days in to the holiday, we were alerted by UK BBC News reports that Storm Eunice was on its way. We had left a large garden umbrella outside, plus garden chairs and tables and our 14 ft trampoline! They were claiming that winds would reach 70-90 mph. We were 5 hours behind in Mexico and the storms were due the following morning but we knew we had to try and get our garden furniture put away into a safe place! Luckily we have some great mates back home who whisked round to our house at 10pm and stowed the furniture in our garage safe from the storm. So glad we did given the next day, our tenants (who are also our friends!) sent through images of the large tree on the pavement outside their house having crashed down in the storms, narrowly missing the house but still breaking glass and creating damage to one of the bedroom windows, roof tiles and guttering. The tree had landed across their front door so they were unable to move in and out of the house until the council had come round to chop it up and move some of it out of the way. People were apparently stopping outside the house, as they passed, taking photos of the massive tree blocking the driveway and having landed on top of the neighbour’s car – now crushed – parked in next door’s driveway! Thank goodness no one was hurt. But it means more insurance claim forms to fill in!

So, now we are back, we wait for confirmation of the surgery date. We think it is going to be 18th March so next I need to get my supplements organised because I need to come off my daily ones for 7 days before surgery to avoid any problems with blood clotting. I have been advised to take 3 different supplements in the week after surgery and then return to my usual daily supplements thereafter. I know I’m going to need to up my oxygen therapy treatment both before and after surgery – given that oxygen therapy helps healing three times faster than anything else! I’ve managed to sneak in 2 sessions this week. Only problem is that I am not allowed to drive for 2 weeks afterwards and it’s a big chunk out of someone’s day (approx 3 hours) to ask someone to drive me and wait for me, but I know I’ve got some amazing friends who will find a way and, of course, Hamish will too.

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Fingers Crossed…

I’ve been on tenterhooks for the last 7 days, with a knot at the pit of my stomach, desperately trying to find a way to get away in the short period I have left before surgery. Having lost out to one, very expensive, dream holiday due to covid, I wasn’t prepared to lose another. Fortunately, I have the most amazing personal travel agent – Ellen Budgen who I have been speaking to almost every day since middle of January to try and sort out a special trip. Without her, it would have been even more horrendous than it has been but more on that later….

This week I have been gathering more information around the lymph node bypass surgery and came across the following article which was published in the Daily Mail online which talks about it’s known success – despite it being still relatively unknown to Breast Cancer sufferers https://www.dailymail.co.uk/health/article-10486487/New-bypass-prevent-distressing-effect-breast-cancer-operation-trial-shows.html?ito=native_share_article-masthead

The weekend just gone was a little bit exciting as my friends’ race horse came in 4th at Sandown Park Racecourse and I won £110. First time I’ve ever won any money on a horse race! Unfortunately I wasn’t able to attend in person, due to still being in isolation and I still had to get my friend, John, to put the online bet on for me as I seem to mess up every time their horse runs and wins!

On Sunday, I met up with some girlfriends for Marie’s birthday! (see photo). It was the first time going out after Covid isolation and it felt good. I was a little nervous as it was the first time I’d put on a dress – with headscarf in toe – and wasn’t sure if I could pull it off, but I was quite pleased with the result. I’ve never been very good at makeup and it’s difficult when you have no eyelashes or eyebrows – despite my attempt to draw them on! It was a lovely afternoon spent with lovely ladies, laughing and catching up. Certainly fuel for the soul.

I managed to delay my telephone appointment with the surgeon on Monday so that I could have my PET scan on Wednesday and speak once the results are in. The PET scan wasn’t until 15:30 and you are required to fast for up to 6 hours before. The reason being so that one can avoid any interaction with food or such which could cause unnecessary inflammation. Fasting allows the radioactive material they inject you with for the scan to work at it’s most efficient – lighting up the hotspot areas that may or may not still contain traces of cancer. But blooming ‘eck, it means fasting all day really. So the last meal I had was Tuesday night and then Wednesday morning first thing I had one of my veggie juices, all within the 6 hour window. But, when I arrived at Queen Mary’s, they told me the scanner had broken and that there were no more slots available until the following week! No!!!!!!! They had it in their notes that my scan was an urgent one so they were looking up slots in Maidstone and even at Kings for the following day or Friday! At 18:00 I was told they had managed to fix the scanner and I was injected with the radioactive material and off I went! But that was nearly 22 hours of no food!

Fortunately, I had had a decent meal the night before and I had kept myself super busy throughout the day trying to speak to specialist medical travel insurance companies who, one after the other, refused to insure me. It has so disheartening, despite Ellen managing to finally find a holiday that would work for Hamish and me within the time frame we had left.

To say it’s been a nightmare, has been an understatement. Ellen has been on the phone to Emirates for hours almost daily to try and get our refund. Time I haven’t had and time Ellen was willing to put in to help us sort the paperwork out. She has spent hours and hours researching destinations that Hamish and I could visit, that are hot in February, where we may be able to use our “Covid Recovery Certificate” rather than relying on a negative PCR test. I never knew that well after recovering from Covid, you may continue to test positive on a PCR test! And I know, because once out of isolation and feeling normal and healthy and testing negative every day on lateral flows, I chose to do a walk-in PCR located in our local high street car park only to have the result returned ‘positive’ to me the following day!

I wasn’t going to fork out another £180 to take a fit to fly PCR test only to be rejected again and lose another holiday due to the results coming back positive! But, unfortunately, that’s how most countries – like the Maldives – filter who comes in and who stays out of their territories.

It turns out the only country at the moment, with a bit of sun, that doesn’t require PCR tests is Mexico. Ellen sent through a few ideas for us, knowing our requirements and the knowledge we had just missed out on our dream holiday. It is a very good Plan B but then came the challenge to find insurance for us. We were declined because of my breast cancer diagnosis and because we were travelling to Mexico. Not sure exactly why or understand it but after 7 rejections, I was almost ready to give up until the next one I spoke to (some calls lasting 35 mins each, just to go through all the medical questions) finally would accept me but for the princely sum of £450!!! OMG, is that really what it costs for us patients who have medical conditions like cancer to go on holiday? I had to politely decline and find an alternative, all the while worried that the holiday we had found in Mexico may have gone or changed their price over night given we would be due to travel in the next 5 days!

In the end I struck gold with the Post Office! Still cost us £170 but spoke to a lovely lady there who could verify my online form and confirm that I had filled it out correctly – so we fly Monday 14th Feb!

Now to start rewriting my spreadsheet for all the lovely people who have generously agreed to take care of our special little people whilst we are away – made that little bit harder, of course, because it’s half term! Big thank yous to my sister Alex for having the kids during the holidays – 5 kids in the house, you are amazing! Also thank you to my dear friend Christina – who is also going to be looking after 5 kids under the same roof. Big thanks also to our lovely friends Linda England, Helen Gentles and Karen Leech who are also going to take care of the kids when they are back at school. Hamish and I couldn’t have done this without you. Thank you also to the lovely friends who kindly offered and would have had the kids if the Maldives trip hadn’t been cancelled – Jo Selby, Nompi Adeymo and Carol Fox!

I still have the meeting with the surgeon to rebook next week to discuss the PET scan results and upcoming surgery. And, of course, we hope to head off on our much needed holiday on Monday without any hiccoughs! Please God! So, I’ll be taking a bit of time out and will return with a new blog post after our trip….

For those of you who need a “travel angel” who goes above and beyond and still finds holidays that are totally affordable and not always easily accessible to the layman, here are Ellen Budgen’s details: 0800 031 5241; ellen.budgen@ite.travel

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Looking for the positives…

These last 7 days have been particularly hard to live through. Our children caught covid, had to self isolate in their rooms and were back on the homeschooling. Hamish and I were desperate to try and keep a safe distance from the kids but it is, of course, difficult living all under the same germ-infected roof after all.

Last Sunday at 5pm we went for our PCR Fit to Fly Test in Croydon. Whilst both Hamish and I had been feeling a bit under the weather, we were both testing negative every day in our lateral flow tests even by Sunday lunchtime! When we woke on Monday morning, I was delighted to see that my PCR test had produced a negative result – “let’s get packing”, I thought to myself, as I skipped out of bed! I didn’t quite believe Hamish when he, with a rather more sullen demeanour, stated that he, unfortunately, received a positive result! Nooooooooooooooooooooooooooo!!! I screamed silently inside.

And, for those of you may be reading my blog for the first time, this meant that the special holiday that we had been so desperate for – to celebrate my 50th and our 10 year wedding anniversary that we never got to celebrate last year because of covid and my Stage 3 Breast Cancer diagnosis – had to be cancelled. No possibility of changing the dates. We had to apply for a full refund. But, as you all know, there’s no such thing as a full refund! £190 on PCR tests, £140 on travel insurance and then there is the excess of course! I felt crushed. Absolutely broken-hearted.

But, there are positives in the true sense of the word as opposed to the negative ‘positive’ that you get from a PCR covid test! I ended up testing positive later that Monday and we know, that if we had made it on to the flight to The Maldives and transited through Dubai, as we had to, and we had been temperature checked or randomly checked, we would have been whisked into quarantine and self-isolation “as quick as look at ya” (as my dear Kiwi Mother-in-law would say!). That would have been awful to have got that far only to be locked in a hotel room for the duration of our holiday, never making it to the Maldives and having left the children behind. Would have been horrendous. So, thank goodness for small mercies.

As my lovely friend Anna, also gently pointed out “if the universe was programmed to give you just one special gift at this time, I’m glad that it was the result you got post chemo”. Is it greedy to wish for both a “complete response” to chemo and a dream holiday? Possibly…. But, now that the dust has settled a bit, the kids are back at school, I’m testing negative and I’ve spoken to the surgeon who tells me that I have a couple of weeks before I must have surgery done by i.e. 6-8 weeks after my last chemo (which was the 6th Jan) – I am going for one last ditched attempt to book a holiday and get to the sunshine!

Apart from getting over the overwhelming disappointment of having to cancel the Maldives holiday, I spent my time researching my surgery options. I knew I was due to have a call with the surgeon on Monday so I needed to have my questions ready and understand my options before making a decision, which I know he’s going to press me for. In my search for answers or guidance I came across a fascinating and very interesting interview with Dr Nasha Winters featured in Top Santé Magazine which everyone should read in full if they can!

https://www.topsante.co.uk/womens-health/i-reversed-my-stage-4-cancer-dr-nasha-winters-talks-holistic-healthcare-on-world-cancer-day/.

Much of what she writes about I have already done or am continuing to do as a way to prevent recurrence.

Facebook has also been very helpful in terms of finding forums to speak to other survivors like me. Not sure I like the term ‘survivor’. It doesn’t feel right somehow but that’s what a lot of people call those of us who have ‘survived’ or are ‘surviving’ living with a cancer diagnosis. There have been a few very useful facebook groups that have been a great source of information for those of us with breast cancer:

  1. Breast Cancer Integrative Healing (Integrative Tribe)
  2. BRiC private group (Building Resilience in Breast Cancer)
  3. And in the beginning but not so much now: “Jane McLelland Off Label Drugs for Cancer”
  4. A new one given what’s coming up is: Breast Cancer Lymphoedema Group

Knowing the first two especially would be suitable forums to share my dilemma and help me make a decision. This is the question I posed in each group:

After my initial diagnosis last July of Stage 3, Grade 2 invasive ductal cancer ER+PR+ and HER2- with lymph node involvement on my right side (I am right arm dominant) I had 5 months of chemo (now awaiting a lumpectomy and radiotherapy and hormone treatment).

I was told by my NHS oncologist because of the type of breast cancer I have the chemo “would NEVER get rid of all of the cancer”. I hired a functional nutritionist, overhauled my diet, hired Cancer Options where i was prescribed repurposed drugs and a whole host of complimentary therapies including oxygen therapy, high dose vit C supplements, infrared heat therapy, detox baths, exercise and a big dose of positivity and a mega fighting spirit – I was told last week that the chemo produced “a complete response”. So Ultrasound and MRI can’t find any cancer!! I was told that my results are “rare”.

The question I have is: I have been told even with this good news i still need breast conserving surgery and full node dissection – because it’s standard protocol. I told the surgeon yesterday that I don’t want a full node clearance (esp given lymphoedema) and that I don’t consider myself ‘standard or normal” and rather I should be treated with the rarity my results have shown!

I told him about the operation I could have – “a lymph node transfer” that reduces the chance of lymphoedema. They knew about it but it’s done by a plastic surgeon. But he said he’d ask as it’s not standard protocol on the NHS. He has asked his plastic surgeon colleague and they’ve agreed if I have full node clearance they’ll do this “lymph bypass surgery” for me.

My dilemma is if the MRI shows no cancer, and they aren’t going to take out the lymph nodes by my collar bone and neck and only take out the ones under my arm, do I:

1. Have full node clearance with lymph bypass surgery

2. Have sentinel node biopsy and just take 4 lymph nodes? No bypass but still chance of lymphoedema

3. Leave nodes in tact as I’ll be having radiotherapy anyway? I understand radiotherapy may also cause lymphoedema?

Do I also ask for a PET scan to assess the lymph nodes up by my collar bone and neck as only my breast and arm pit have been scanned?

Basically the sum of it is, no two patients are ever the same! Some have got lymphoedema, others haven’t. It is difficult to predict if I will or won’t get it really. Many women on the groups strongly advised that I do NOT get a full node dissection (all lymph nodes out on my right side) and I think I’m very much leaning towards that. Many in the UK didn’t know that the Lymph bypass surgery even existed.

The problem for all cancer patients is that even after gruelling treatment, because cancer cells are microscopic they don’t know until they properly open me up, take out some nodes and examine them under a microscope will they be sure if there is still cancer there or not. If there is, the nodes will need to come out. A number of the ladies shared how their scans produced good results of the cancer being reduced but when they went into surgery more was found. The patient won’t know until they wake up from surgery what the true extent of their situation is and how much more is taken out of their body on the operating table and just how much more cancer there is. It’s so scary.

I’ve also subsequently learned that radiotherapy also has a tendency to produce lymphoedema, with hardening of the lymph nodes damaged through radiation. I’ve got lymph nodes supposedly affected by cancer up by my neck and collar bone in addition to under my right arm and breast area but I’ve not had a scan to assess how those have fared during chemo – so I have organised a PET scan on 9th Feb to understand exactly what’s going on inside me now. Even though I know these scans won’t pick up every trace of cancer, it will give me a good indication of what the chemo has managed to do thus far.

Then there is two last questions I must pose to Mr Kasem and they are:

1. “is there a way for radiotherapy to be so targeted that it won’t kill off the remaining good lymph nodes? If not, why would I have surgery to remove lymph nodes that are supposedly cancer free only to have radiotherapy later on that supposedly will do the same thing i.e. kill all lymph nodes indiscriminately? Which may also cause me to have lymphoedema!”

2. “Why let me consider lymph bypass surgery (where you have to use a good lymph node) only to have radiotherapy afterwards that may kill off the remaining good lymph nodes and therefore damage the good one used for the bypass surgery? Surely, there would be no point in the bypass surgery if the remaining good lymph node is compromised?”

So, I now need to prepare for my meeting on Monday with Mr Kasem, have the PET scan on Wednesday and try to find a way to get away to the sun…..

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Miracles happen but not without a few twists and turns….

This is me laid bare. I really debated about whether or not to share this photo of me with you all but if I want this blog to help people, I need to be honest not just about the way I feel but the way I look right now. This is me today with what I have left. I have enhanced my look with my newly drawn on eyebrows – courtesy of a recommendation by https://www.facebook.com/smoothsuz/ and a light tanning mist that another lovely friend, Marie Murray, gave to me.

So, it’s been 3 weeks since my last chemo and one of the many things that has been on my mind has been the gradual but continuing and steady loss of my hair on my head – as you can see. There’s no getting away from it now. I’m going to have to resign myself to the fact that my head can no longer be left uncovered – unless I want to draw unwanted stares in my direction! And, of course, now I don’t have much covering on my scalp, it’s also rather cold!!! So, I ordered some scarves and hair wraps from my daughter’s favourite online shop, Shein, and waited eagerly for their arrival.

Last Friday, I plucked up the courage to make a booking to cut my wig to my old style with my hairdresser at Mastercutters in Hayes – who I haven’t seen since July last year! The lovely hairdressers didn’t charge me a penny! It was quite a palaver – neither of us having a clue how to put the darn thing on and fix it to my head whilst it was being cut but we did it! I was going to take it for its first outing this evening to my friend’s birthday dinner but blooming Covid has struck again!

It’s a strange thing when I feel I have been battling to keep what’s left of my hair all this time, to suddenly realise, if the hair is dead, it’s going to come out eventually so may as well start the regrowth now. That realisation has almost given me a sense of freedom to just embrace the ‘baldness’ but it didn’t stop me plastering on the castor oil over the weekend, as per Silvia’s instructions – left for two hours under a shower cap and washed off in the shower – to encourage new follicles to grow! The sticky, syrupy mixture is a tough one to shampoo out and more clumps of hair came out but I am a bit more accepting of it now.

Whilst I continued to lose my hair since my last chemo session, I gained instead an unsightly rash on my chest up by my collar bone. I must have had it for 5 weeks and despite my phoning in with my concern to the hospital and the treatment suite – I felt I was being fobbed off. I think once you’ve left their care you are no longer their concern. The rash was very itchy, red and spreading. Who knows if it was chemo related or not but finally I received, through the post this weekend, a dermatological appointment booked in for the 5th March only for my rash to start to get better. It would have been over 10 weeks before I would have been seen!

These last two weeks not much seems to have happened but I’ve still been super busy with all the preparations for the upcoming holiday to the Maldives. It certainly has been a logistical challenge sorting out all the kids’ childcare whilst we are away. I don’t think we’ll be doing it again in a hurry. But, it’s also been a couple of weeks of trying to get ready for what happens next.

Following the rather positive ultrasound results I had the week before, I had been keen to get the MRI scan completed. It seemed a shame to have to wait a whole extra week sitting on those initially good results to wait to hear the complete picture another week later, but c’est la vie! It seems MRI results always follow a week later.

Having done a couple of MRI scans now, I wasn’t phased by having to strip off from the waist upwards and climbing on to the very hard, cold plastic bed in the MRI room, face down, carefully positioning my increasingly shrinking boobies into the slots on the bed for them to be scanned! The kindly nurse went through all the stages to prepare me for the scan with contrast. She had already tried three times to put the cannula into the vein in my right arm, so I was a little sore but really it’s not a big deal in the grand scheme of things. But, half way through the scanning process, whilst in the machine, the nurse explained she was going to administer the contrast and that’s when things got a bit weird. I suddenly experienced this strange, warm, fizzing sensation in the bottom of my right arm, below the elbow, with lots of pins and needles. Panicking, having never experienced this sensation before, I squeezed the plastic, lemon-shaped buzzer they’d given me in case of an emergency. My eyes were closed, my ears covered by large headphones to try, rather ineffectively, to reduce the noise coming from the machine but the nurse’s voice came through loud and clear and she reassured me that everything was just as it should be. And, just as she finished her reassurances, the fizzing subsided. Apparently it happens, it’s just not happened to me – until now. I get the full results from the oncologist on Wednesday 26th.

Whilst all of this, understandably, has been quite full on for me, I had forgotten that it has also been quite overwhelming for many of those who are near and dear to me. I have been so absorbed in my trying to get through one stage at a time, I have inadvertently forgotten that it can and is still hard to process for others, namely our 10 year old son, Freddy.

If I’m honest, I have known for a while that Freddy has found it hard to verbalise his emotions, instead expressing his feelings through tears, frustration or anger. Poor thing, has always been a worrier. He is very sensitive and has always been concerned about how others are feeling, if they’ve been ill or injured. I hadn’t realised my diagnosis had had such an impact on him until some dear friends, who came for lunch recently, retold their experience of taking the kids fishing one weekend back in August, shortly after my initial diagnosis. It was just a passing comment and they retold the event with real compassion and concern that Freddy had been showing signs of frustration and distress over the course of this day out, contrary to how we would have expected him to behave. Nevertheless, we hadn’t heard about this before and we were shocked and a little embarrassed to hear about his behaviour.

Positively, they felt that he was now “more himself” and much “better” since that excursion but it made me wonder how our little Freddy had managed to process it all? Then, last week, his lovely teacher pulled me aside and explained that she had caught Freddy on the verge of tears several times over the last few weeks. Freddy has been unable to express what has been making him upset apart from saying that he’s worried about me, so she has advised counselling, which we put into place at the end of last week.

Then, Sunday, just gone, I was in the kitchen preparing dinner, and he rushed into my arms, sobbing his little heart out, struggling to catch his breath. He was shaking and seemed so frightened. I thought something terrible had just happened but it had just come over him all of a sudden that he was very scared about my upcoming surgery and told me “I don’t want them to cut you open, Mummy!!”

Well, what do you say to that? It absolutely broke my heart. Both Hamish and I did our best to console him and reassure him but this is new territory for us. Thank goodness for the counselling. Naturally, I relayed Sunday’s event to the teacher so she could share with the counsellor for Freddy’s upcoming session this week. So far, he seems to be ok but it’s a worry with us going away for 12 days on the 1st Feb and the knowledge that he is likely to miss us. It’s never easy is it!

Bizarrely, I had anticipated that I’d write this week’s blog ruminating over the happenings over the last couple of weeks and then jet off on holiday, with a big smile on my face, but things are never that straight forward are they???!!!! I wrote the first half of this blog feeling positive about all the good things that were surely meant to be coming my way but I woke up this morning, Wednesday 26th January after watching our daughter turn decidedly pale Tuesday evening, and then tested positive for Covid!

The sudden realisation that, with the new rules of Covid, it is going to be decidedly tricky and very tight if we are going to actually make it on holiday after all. The kids need to test negative on Monday and Tuesday morning – the actual day we are due to fly to the Maldives – if they don’t I have to make sure my childcare arrangements will actually have the kids even if they continue to test positive (which is a real possibility given this new Omicron variant). Then, Hamish and I have to have a ‘fit to fly’ PCR test this coming Sunday and produce a negative test to be able to fly Tuesday afternoon! No mean feat, given I’m supposed to be vulnerable and we are all living under the same roof and, prior to the positive test result, I had been revelling in our children’s cuddles and kisses! I’ve gone through several lockdowns and the kids have never had Covid, why oh why do they get it now, 6 days before we are about to head off on our dream holiday of a life time?!!

I spent yesterday morning working through all the online forms you have to fill out for Ava to allow her school to approve her absence. So many test and trace contacts and knowing who she may have come in to contact with. We have assigned the kids their own bathrooms and have encouraged them to stay in their rooms doing their school work, opening up windows, taking up their meals and snacks so that we have as little physical contact as possible.

At 11:30 I was due to have a face to face meeting with my oncologist but I had to call in and ask to have a telephone meeting instead given our covid kids! At 12:30 I still hadn’t heard from him and I was getting a little anxious. Not that I had anywhere to go but I was keen to understand what the MRI scan had shown. When he finally did ring through, I was still down in the dumps from the likelihood that our holiday will fall through. A miracle would have to happen – the timings are too tight and this strain of covid too infectious. As I retold the events of the last 24 hours to my oncologist, I had almost forgotten the reason for his call.

He carefully brought be back into the ‘virtual hospital room’ and broached the subject of my MRI scan. As the words came out, I couldn’t quite fathom what he was saying “Cecilia, the scan shows that the chemotherapy has had a complete response to the cancer”.

“What does that mean?” I asked him. Essentially, it means that the scan did not detect any cancer in my body. So, my first thought was, as obvious as it may sound, “what does that mean exactly?” Well, it means I still have to have surgery, and radiotherapy and then hormone treatment but it’s shrunk to such an extent that if there is any cancer they may be in the form of microscopic cells which is why they still need to do surgery so they can confirm whether or not I still have active cancer cells in my breast.

Now, whilst I have had 24 hours to digest this somewhat, at the time the results were very much overshadowed by the ‘Covid’ and ‘no holiday’ possibility. Gosh, I wish I had received those results today, at least, or even the day before. Of course, I know it is good news, not just good news, great news. My dear mother has been praying non stop since the beginning to shrink the cancer to nothing and, once again, her prayers have come through – I’ve always believed she has had a direct line to God. But, I told her right at the start – I asked the oncologist (the same one who gave me the good news) would the chemo get rid of the cancer? His response was “no, with your type of breast cancer the chemo will NEVER get rid of it completely”. So I have always tried to manage Mummy’s expectations that I would not be completely cancer free at the end of all of this.

When I challenged Dr Mark Nathan about this on my call yesterday, he told me that “yes, I do remember saying that and it is usually the case that the chemo doesn’t get rid of it. It is rare”, he continued. “Perhaps 15-20% of patients this might happen to”. Well I don’t think 15-20% is rare and if I’d known that in the beginning, I’d have always known I was going to be one of those 15-20%! It’s just a shame that I still have to have surgery and radiotherapy but, hey ho, there you go.

I still don’t know what the plan is with the lymph node clearance. Nor have I had it yet confirmed whether or not I’ll have a lumpectomy or “breast conserving surgery” as opposed to a mastectomy. This I have to wait to hear about on Monday when I meet with the surgeon. And, more waiting to see how the kids recover from Covid and whether or not Hamish and I will actually make it to The Maldives…..

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A little bit of normal…and a big surprise….

So last chemo was 6th Jan. That’s almost a week ago now and already in the last 6 days I’ve been on one bumpy roller coaster ride!

Last chemo was met with mixed emotions. Walking out of the chemo suite, for the last time (I hoped?!), saying goodbye to the nurses as they turned to their new patients – the new guard taking up the seats in the Chartwell Unit that I would no longer be part of. Saying adieu to the nurse on reception and the kind nurses who had been looking after me every Thursday for the last 5 months. I hadn’t honestly considered how I might feel walking out of the unit for the last time. It certainly wasn’t one of elation but, of course, I was glad to be seeing the back of EC chemo – the chemo that had robbed me of my energy and more of my hair than I had agreed to.

I had been worried because I had had to break my 48 hour water fast before I went in for chemo that day. I was so hungry and I didn’t think I’d be able to manage chemo without eating. I had managed 19 hours but at 12 noon I heated up a small bowl of home-made organic chilli con carne – just protein, no carbs, so no rice, because carbs metabolise into sugar and I didn’t want to give my cancer any fuel to fight the chemo that would be coming at it. As small a bowl as it was, I was disappointed in myself that I couldn’t last the full 48 hours and give myself the last final push during chemo to zap the remaining chemo cells inside me. It was the last chance saloon so my session was occupied with guilt. I should have remembered Silvia’s advice earlier on that there is good evidence to suggest that “fast mimicking” (where you only eat 500 calories) can be just as effective as a full water fast – it doesn’t stop you wondering though!

The PICC line was whipped out of me, gently of course, by nurse Brooke at the end of the session. I was now free to wash without a plastic tube on my arm, play tennis, do repetitive arm movements and even chuck in a few burpees for good measure, should I wish to. Even though I was tired I had promised myself that I would re-join my tennis ladies for the Friday ladies’ coaching session, which I was very much looking forward to and, as you’ll see in the photo, didn’t disappoint! Friday greeted us cold but with gorgeous blue skies and beautiful sunshine.

Later on in the week, the chairman and membership secretary of The Old Wilsonians tennis club, where I play in Hayes, surprised me by offering me a temporary full time membership of the club so I can play as often as I like until I have surgery. I was totally overwhelmed by their kindness and generosity. I’m so glad I’m part of this wonderful local tennis club. Along with all the laughter and brilliant tennis coaching, you really are made to feel you are part of an extended tennis family! We are very lucky.

But, I had a big emotional dip on Saturday morning when I attempted to wash my hair. I had convinced myself that although I had lost a fair amount of my locks, I still had enough to get away with it and had been prematurely congratulating myself for retaining some of my crowning glory all the way through 16 rounds of chemo, only to have that belief firmly resigned to the waste paper basket in my bedroom – along with the significantly increased layers of hair that had fallen out during my weekly hair washing ritual.

As I braved a look in the mirror of our recently, beautifully decorated bathroom, I was met with horror as I now could not only see portions of my scalp but also could feel the coldness of my palm as I stretched my hand out over the exposed skin of my head. I then turned into an emotional wreck. The tears never far from my eyes throughout the following three days. A constant reminder of another part of my identity that had been taken from me. Embarrassed at my new found scalp exposure, I attempted to cover up with a silk scarf at home. I never learned how to tie a scarf properly! Note to self, get my friend Nompi to show me how to tie a silk head scarf asap! My kids tried to be encouraging but I knew I had done a terrible job. It felt strange walking around the house with a scarf around my head.

Sunday morning, Freddy and I joined another family to play tennis. My head was covered up in a woolly hat, which looked appropriate on court and so felt no embarrassment but I was conscious of my streaming nose. I was wrapped up in 5 layers because I was so cold. Losing 3 stone in weight does that to you. I was so aware of my trickling nose, worried that whilst I knew I didn’t have a cold, or covid – no matter what others may have thought as I continuously blew and dabbed away at my nose – I had forgotten that losing your bodily hair, including nostril hair means that you are more prone to running noses! Not an easy one to explain to the average person on the street though during Omicron times!

Playing tennis was a welcome distraction but returning home I remained emotionally at rock bottom for a few days. I felt very sorry for myself indeed. Hamish had been working late into the early hours finishing off our new bedroom and so I had moved into the guest room. Going to bed early because I was exhausted and then experiencing chemo induced insomnia wasn’t much fun and had me crying for much of the following days to come.

There comes a point, like everything, where you just have to find a way to pull yourself together. This happened around the Monday after a lovely dinner out with one of our close friends Carol on the Sunday. Everyone needs a ‘Carol’ in their lives! A normal person would have brought round flowers or candles to lift my spirits but, no, Carol brought me a lilac, synthetic, bobbed wig which she presented to me proudly in a brown paper bag suggesting I might like to try it on to put a smile of my face! Well, it certainly got a smile and may have even got a laugh but no donning of the wig occurred that evening – not by me anyhow! That said, the kids were fighting over it the following day with Ava taking a particular penchant to it, as she gazed approvingly at her reflection in the mirror, just as Freddy whipped it off her head and minced round the kitchen working it like some confident little diva!

On Monday I had another appointment with Silvia, my functional nutritionist. I had paid for a gene test to assess how I metabolise certain things in my body. This was an opportunity to go through my results but also to prepare a plan going forward after chemo with all my supplements in the lead up to surgery.

What I learned was very interesting. The sum of it is that my body doesn’t metabolise oestrogen very well. My body makes 4 times more of the 4OHE enzyme than it should do which is harmful and goes some way to explaining why I was prone to getting hormonal breast cancer. This harmful excess is potentially responsible for causing the mutations that are typical of cancer cells. I also have a problem with the metylation (or elimination) of 4OHE from my body. I need low levels of 4OHE so that I don’t make bad quinones but my body finds it difficult to get rid of these quinones so I need some help with this by continuing to take the supplement TMG that was originally advised by Cancer Options.

Silvia also suggested that I now only need to drink up to 2 cups of green tea a day and that I need to work on decreasing my busy lifestyle to reduce the times where my cortisol levels are high – usually busy, fast paced, time pressured days where I try to fit everything in – the sorts of days I usually thrive on and enjoy but, not so good for my body and the effect it has on certain genes I have.

I must also stay away from environmental toxins, particularly plastics, burning, charring etc. – so no BBQs for now and never again cook at high temperatures as this produces a carcinogenic effect.

One of the ways to counteract the issues I have with certain genes and enzymes that I am producing, apart from supplements and exercise etc is to eat a portion of cruciferous veggies every day i.e. broccoli, cauliflower, brussel sprouts etc. Apparently, eating cruciferous vegetables slows down the formation of the enzyme I am producing too much of but, at the same time, also speeds up the elimination of it effectively clearing the quinones in my body naturally.

Silvia has recommended that I fast only for 13 hours a day now for the rest of my life. Fasting in this way is believed to reduce the risk in the recurrence of breast cancer by as much as 40%.

As always, it is a lot of information to digest but I do believe knowledge is key. After surgery I intend to have a biochemistry test to assess how I metabolise certain things like gluten and sugars etc. It should be the final missing piece of the puzzle I need to help me stay on track and reduce the chances of the cancer coming back.

Then, on Tuesday, I had my first scan. I had been booked in for an ultrasound mammogram at the hospital as one of the first assessments into how the chemo has worked. I wasn’t really nervous given, past experience has told me, that they don’t normally tell you anything when you are there. Instead, they expect your oncologist to explain the results to you. I have an MRI booked in for 19th so I presumed I’d be presented with the findings after both scans have been analysed. So, I moseyed into my appointment, feeling cold (it was 3.5 degrees Celsius) but relatively cheerful.

The two nurses in the darkened side room instructed me to take my tops and bra off and lie down on the padded bed laid out with a long roll of what looked like kitchen roll. I was about to get a whole lot colder. As I lay down, naked from the waist up, clutching my two pieces of kitchen roll to try and cover my freezing boobs , the nurses recognising how ridiculous this looked, helpfully suggested to lay my woolen jumper over the top of me as we waited for the ultrasound doctor to enter.

In walks said doctor, with pleasantries exchanged, he set to work lubing the wand and then proceeded to nuzzle it under my left arm pit. I let out a little squeal, telling him it was “quite ticklish” which was met with a quizzical look across his masked face. As he poked and prodded with the cold, wet wand – all whilst not taking his eye off the monitor for one second – I wondered “why on earth was he taking the time to scan the ‘good side’ of my body?”

I looked at him and told him in no uncertain terms “you better not find anything there!” I was met with another look that could only be described by a thought he may have had “ok, we have a bit of a wild one here!” Five minutes later, he was still prodding away when, all of a sudden, he stopped, pulled the wand away and started to pack up. Turning to me, he explained “I can see lymph nodes but they look normal”.

“Yes”, I responded, “I sincerely hope so, so are you now going to scan the side of my body that actually has the cancer in it?” Well, he let out a big breath and said, “oh my goodness, I thought you were joking and hoping for some kind of miracle when you said you’d hoped I’d not find anything there. And of course, you’d be expecting nothing less!” He went on to apologise that the MRI imaging from the hospital scan that he had just been studying prior to our appointment was actually presented in the reverse so he thought he had to be looking at my left side, not my right! What a situation!

So, no chance of putting my clothes back on, still feeling very cold, the doctor returned to lubing up the wand again to now scan the right side under my arm pit and my right breast. After what seemed like an eternity he tentatively began to explain that he could see that four lymph nodes were affected but he offered, “I don’t think there is cancer, I think what I see is scar tissue”. Well, that’s quite a major thing given my lymph nodes were one of the hottest areas in my original PET scan result, back in the middle of August, and they had identified as many as 6-9 lymph nodes affected!

The doctor then scanned the tumour in my breast, which you may remember, right back at the beginning, when they did the biopsy, they inserted a metal rod or marker to measure the effectiveness of the chemo as I went along – that day was the first time the marker had been used as a measurement tool. He asked me how big the tumour had been initially and I told him 36mm. I relayed to him how after 3 months of Pacliataxel chemo and my strict diet, I had managed to reduce the tumour to 24mm. I had been hoping, of course, that it might be possible to shrink it again by half to 12mm after just 2 months of EC but he surprised me with an answer that brought music to my ears “it’s actually shrunk to 8mm”. That’s a 66% reduction in just 2 months!!

I am certain the repurposed drugs I only started taking at the end of October – the metformin and Low Dose Naltrexone as well as the 2DG have had a massive influence in shrinking the buggar! And, who knows how the tri-weekly oxygen therapy sessions have contributed to the cancer’s demise. I now can’t wait to receive the full results from the MRI scan scheduled for next week – results to follow a week later.

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The final countdown….

Hello peeps! Happy New Year to you all! I just want to start by thanking you for all your support last year and for all your lovely messages. You have no idea how important it is to know that people are kind enough to take time out of their day to read my blog and support me on what has to be one of the toughest life journeys I’ve been on.

Probably, like many of you, I have spent a couple of months planning and preparing for Christmas and then, all of a sudden, January hits and you realise, in a blink of an eye, it is all over! But as much as I love the fairy lights and Christmas decorations and there is a little tug at my heart strings when I take down the tree, I always had in the back of my mind that I knew my last cycle of EC chemo would be happening on the 6th Jan – my sister’s birthday! So, actually, I’ve been secretly willing the days along to get to this point. Christmas over, chemo nearly over…

Today’s blog photo is a selfie of Brooke, my favourite nurse, and me on my last day of chemo! She has literally been the one that has brightened up my chemo day with her quick wit, her many kindnesses and her laughter. She was one of two nurses who supported me in all my complementary therapies and supplements, even when all the other nurses thought I was mad. She only started in the Chartwell Unit half way through my chemo but I’m so glad she was one of my nurses for the latter part of my treatment. I will miss this girl! She should be so proud being promoted to “a Sister” over the Christmas holidays. She told me the darker blue the uniform, the more senior the medical staff is. Unfortunately, her new dark blue uniform only arrived today but didn’t quite make it in time for our selfie!

You’ll know that preparing for chemo has been all consuming and full on but, as of today, I hope that I will no longer need to enter the chemo suite again. I am hoping, as I began my water fast 24 hours before my last chemo at 1pm today, that everything I have done in the lead up to this last blast at the remaining cancer cells in my body, is successful.

I won’t know actual results for a few weeks as my final scans haven’t been booked in yet. My PICC line will be whipped out after chemo today too (bit nervous about that one I have to say) but it’ll be nice not to have to use the heavy plastic tube on my arm every time I shower – having often forgotten to put it on to protect the contraption in my arm threaded through my vein up over my chest area only to realise the bandaged area was completely soaked, requiring me to turn off the shower, freezing my little behind so that I could dry it off as best as I could and avoid any potential water infection and then restart the bathing process again! Yip – I’ll be happy to not have to worry about showering anymore and I’m sure the patch on my arm, that has been covered up for nearly 5 months, will be pleased to see daylight finally! But what I’m most excited about is that I will have a small window of time where I can return to tennis and the lovely ladies I used to play with before all this begun. I will, no doubt, have to stop playing to recover from surgery – which happens sometime in Feb – but that should give me a few weeks at least back on court.

Knowing this will be my last chemo, hasn’t stopped me worrying about how I have relaxed my diet so much for the month of December. I was pretty much eating what I liked when I liked – and that included way more chocolate and sugary foods than I should have ever consumed. What if eating in this way, whilst I was merrily enjoying myself, actually fueled the cancer’s appetite and helped it to grow, mutate and spread further? What if, by taking my foot of the pedal, I have inadvertently scuppered my chances of better results? I know these thoughts don’t help but they have plagued my mind over the last week or so.

Tiredness and fatigue have been a big thing over the last two weeks too. I don’t know if it’s because I haven’t felt like exercising as much, sort of got out of the routine and, of course, not been eating as healthily as I could have been. Or, if not being able to attend my hyperbaric Oxygen therapy sessions, due to early closure because of Covid on 12th Dec and then closing for Christmas has had a detrimental effect. All I know is that I have been losing far more hair these last two weeks. I have noticeable balding patches at the back of my head and my hair feels so thin. I feel crushed every time I wake up and pick the hairs off my pillow and try to tie, what strands I have left, into a little pony tail. My good friend Gemma, in Oz, did warn me about this and so chose to shave her hair off right at the beginning. I don’t think I was brave enough then and not brave enough now. Friends continue to tell me that my hair still looks good but I don’t know if they’re just being ‘kind’. But, what I do know is that my hair wasn’t falling out quite as much when I was doing oxygen therapy – knowing oxygen helps heal the body three times faster by regenerating new cells. I guess, it is what it is, I know – I’ve just got to pull up my big girl panties and get on with it!

So the next chapter begins, a new journey – the one that involves surgery and radiation – neither of which fill me with much joy. I know I’ve got to keep plodding along and working my way through the next lot of treatment but every stage involves intense planning as far as supplement changes, fasting, and of course, trying to understand what my options are. The latter is the hardest of all because, normally, you get told what you’re going to have by the doctors. It isn’t usually presented as an opportunity for discussion. They have to get you to sign an agreement that you are happy for them to proceed as they see fit but, of course, I don’t like making it that easy for them.

Knowledge is key and information is power but it can also get you into trouble and I may find myself in hot waters with the oncology team again with what I am not prepared to have happen. As I mentioned in my last blog, the question really sits around, “do I have to have ALL my lymph nodes removed under my right arm?”

Tuesday afternoon, late, I was informed by my assigned breast cancer nurse that I was due to have a meeting with Dr Kasem, my breast surgeon, on Wednesday at 14:50. News to me! I never received any prior warning about this and all of a sudden, excited as I was to meet with the man who’d be cutting out my cancer, I had a whole host of information I needed to prepare ahead of our meeting around lymph node removal etc. So I spent the remainder of Tuesday evening, gathering all my research notes and formulating questions to put to him.

Unbeknownst to me, I had also been set up a telephone meeting with my oncologist at 10:40 on Wednesday morning but when I chased the call at 11:40 and found out that Dr Mark Nathan was actually on leave and the oncologist due to call was the doctor who had upgraded me to Stage 4 in my first weeks of diagnosis and told me he was pulling all future surgery and treatment to offer only palliative care given I was now deemed “incurable”!! I was filled with horror that I would have to speak to this careless and thoughtless doctor again and told the nurse, in no uncertain terms, that I would never take his call again so “take me off his list”. Note to self: tell my assigned breast cancer nurse that this was not acceptable and she should have managed this better, knowing all that had gone on previously, or at least warned me – given I had to present my complaint to the complaints committee, it’s all there in the system!

We met Dr Kasem, as scheduled, yesterday afternoon. He is one of the best in his field. He is the lead breast cancer surgeon at the PRUH but has also worked on secondment at The Royal Marsden and has private clinics at Harley Street etc. He has published numerous peer-reviewed journal articles on topics such as skin-sparing mastectomies and lipofilling and is a member of Editorial Board of the Journal of Annals of Breast Cancer in the USA. He has won as many as 12 WOW! Awards for Outstanding Patients Experience, and was nominated by breast cancer patients for the Pride in Medway Award in 2013. A new mum friend from Ava’s school couldn’t recommend him highly enough, after she paid privately to have Dr Kasem as her surgeon to do her lumpectomy and her lymph node clearance a couple of years ago.

I am glad I had the courage to ask for the surgeon I wanted. You can’t worry about other people’s feelings (having chosen him over another surgeon who the hospital had assigned to me). You have to be brave and ask for what you want or, in this case, who you want – especially when it comes to choosing who you want to cut you open! Just because you are under the NHS, it doesn’t prevent you from managing your care and who you want on your team. I think it’s important to remember that.

So, Hamish and I met with Dr Kasem. He doesn’t know my case and has come in very much at the end of everything, as I had only requested to have him as my surgeon a couple of months ago. And we haven’t met until now. Interestingly, he asked me about my decision to move to the Royal Marsden and, as I sat in his room, I finally felt no guilt or embarrassment as I outlined how the doctor I saw in Dr Mark Nathan’s absence so wrongly misdiagnosed me at the beginning – with no apology or recognition that he had let – me – a 50 year old woman believe for a whole week that there was nothing more they could do for her! Essentially being assigned to the scrap heap! Dr Kasem asked for his name and I had no compunction giving it to him – especially given his role in leading up the breast cancer team at the PRUH. I’m not sure I’d want someone like that on my team either.

I’m so glad I had done my research on Dr Kasem and was confident in his ability and knowledge as a breast surgeon because, lovely as he is, he wasn’t the easiest to understand. He has quite a thick accent and we really had to concentrate on what he was saying – behind the mask! No chance of lip reading either!

I followed my carefully compiled notes and asked him about ‘axillary lymph node clearance’ or ALND as it is mentioned in some research papers. Interestingly, he has even written some papers on the subject. He responded favourably to the complementary therapies and changes in nutrition that I have been undertaking but he is still of the school that a full lymph node clearance is required if more than 3 lymph nodes have been affected by metastatic disease. In my case, as many as 6 were detected, and that could mean there are even more.

I asked him about cryoablation, which is really mainly done in the US under a Dr Dennis Holmes but has also been done in Turkey, Italy and Germany but not in the UK. Cryoablation freezes the cells to death in a three step process with no surgery or stitches so minimal recovery or nerve damage. Its pros are that it has quicker recovery time than surgery. It also apparently creates an immune response that targets circulating tumor cells and cancer stem cells. You also don’t need a general anaesthetic nor IV antibiotics – which can play havoc on your system and, it apparently has a very low reoccurrence rate in the trials. But, as Dr Kasem said, it’s not done here in the UK and there isn’t enough information or historical data to know for sure, how effective it is against reoccurance. He went on to quote a patient he saw two days ago who had cryoablation and is riddled with cancer now. This is the problem with stats, there are always going to be cases to support and cases to counter new therapies such as these. So, I’ve decided to leave this one for now.

I also asked him if he could do a “reverse axillary mapping” to save the armpit nodes but that was also met with negativity. He had examples of where it hadn’t worked.

I am so scared of losing full movement in my right arm, my dominant arm, and having to wear compression sleeves for the rest of my life. I fear lymphoedema and the painful swelling that is often a side effect of having lymph nodes removed – not always, I know, but it’s common enough. It would make our flights back to New Zealand to see family very worrying and potentially very painful.

So, I asked him if he would be able to perform a lymphovenous anastamosis or lymphovenous bypass? This is done during surgery, which might make it a bit more difficult as I don’t think I’m having a mastectomy. This procedure is starting to become standard at MD Anderson in Houston for Inflammatory Breast Cancer patients having an ALND. It may very well help prevent lifelong lymphoedema issues. The other alternative is to have a lymphovenous transplant (if you develop problems later) but that option is so much more complicated. Dr Kasem responded that this would not be done during my surgery but gave me some hope when he mentioned that if I was to develop lymphoedema, following my node dissection, then he would refer me to a plastic surgeon at St Thomas’s who would be able to perform this operation to rectify it.

I’m still not comfortable with full node clearance though but it makes it such a difficult decision because the lymph nodes are like several strands of string that, just like string, get tangled up in one another and makes them difficult to separate. On top of that, I won’t know which ones are affected with cancer until they’ve actually been taken out.

So, we have had the discussion, I have aired my concerns and he is going to discuss my case with the medical team and his peers, following the results of my next MRI and Ultrasound mammogram. He is going to share with the team that I am a woman who has severe reservations about having all my lymph nodes removed and then I’ll have to await their conclusions and recommendations when we meet again in 3 weeks time.

I’m still hoping that we will get the chance to jet off to the Maldives before surgery. I need to feel the warmth of the sun on my skin more than ever now and to spend some quality time with my Hamish. Watch this space…..

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The penultimate one….

Can’t believe I have only two cycles left of EC to go! I feel I’ve been doing this forever and, then again at the same time, I remember I’ve only been doing this since August 19th! So much has happened and there is still a way left to go with regard to surgery and radiotherapy – but I’ll come to that later….

There has been much to organise at home with Christmas literally around the corner. I love Christmas. I love everything about it – spending time with family, the lights, the decorations, the sharing of gifts, the food, the movies. For me it brings back magical and happy memories growing up and I want our kids to have the same experience and be able to look back on their childhood and have similar joyful recollections of our time together at Christmas.

Last year, we will all remember here in the UK how “Christmas was cancelled” by Covid. I was gutted because I didn’t get to spend Christmas with either my mother or brother because they were in Spain. My father had just passed away that October and when Christmas came around, we weren’t even allowed to be indoors with another family so I didn’t get to see my sister either. This year, fortunately, we will get to spend it with my sister and her family but I will have just completed my 3rd round of EC. My mother and brother are still in Spain, unfortunately, and we will have to renew our efforts to get Mummy home next year I guess. But, at least, they are together.

The last week or so has really been about me getting myself up to speed on what happens next in my treatment plan and also a bit of health maintenance. I had a dentist appointment booked and had been worried that my teeth may have deteriorated with all the chemo. I’m not sure how exactly, but I had been told that chemo can give you mouth ulcers and I was advised to get myself a soft bristled toothbrush right at the beginning of my diagnosis. It’s sat, unopened, in the bottom of my wash bag the whole time. I never did get mouth ulcers, thank goodness, and I’ve been fastidious about flossing and keeping my teeth clean, but I was still worried. Fortunately, my dentist was pretty happy with the state of my teeth but advised I book in a hygenist appointment asap because a build up of plaque can cause inflammation – something I need to avoid at all cost.

I also needed to find out about what to do for the best with getting my 3rd vaccine. I knew I needed a 3rd for “immuno-suppressed people” as opposed to a “booster” but I also was aware that timing was important. Now that I knew that I wouldn’t be having my PET and MRI scans until after my last chemo on 6th Jan, this would give me enough time for any inflammation caused by the vaccine to subside by the time my scans would be booked in. I just needed to find somewhere that I could get the vaccine that week and no later. But, or course, as soon as I decided I wanted it then, that’s when it all came out in the press about the increased numbers of Omicron infections and how everyone else seemed to want to get theirs too! I had already tried queuing for walk-in appointments a couple of times the previous week but battled with the long waiting times. On the Monday, after the press announcement, it was no surprise that the queue at 08:40 for the little Beckenham pharmacy that was offering the only walk-in appointments that Monday nearest me, was already backed up round the corner when I arrived. Despite it only taking me an hour to reach the front of the queue, I had to leave without my vaccine because they had run out of Pfizer the previous day. I should have asked someone. What a waste of an hour.

I tried again on the Wednesday but this time when I arrived at 08:40, the queue was even longer and, although it was a fairly mild 11 degrees celsius, standing still without moving an inch for an hour it suddenly didn’t feel that mild anymore. I was so cold, my back ached from standing in the same position without anything to lean against and no where to walk to other than out of the line and back to my car. But, I held fast. I knew they had Pfizer so I stayed in line and finally 2.5 hours later I made my way past the threshold of the little pharmacy shop door. I’ve never been so pleased to sit down and be in a warm space. I’m all vax’d up now so I feel relieved.

My last hyperbaric Oxygen session was last Tuesday. I received a call on my way to the centre letting me know that Tuesday would be the last day they’d remain open this year, given the increase in infections. This meant that I wasn’t going to get my 8 weeks of oxygen therapy in. I would only manage 6. I find these sessions hard. The sessions are long, averaging 1.5 hours a time. You sit in a cramped space beside strangers with masks that are cumbersome, it’s difficult to breathe and the pipes connected to the masks make it difficult to hold your head up so you always end up with an achy neck when you leave the chamber. But, I know how very good it is for healing and for making my cancer cells more vulnerable, so I soldier on. I was initially concerned about my not being able to complete the course but, following my call with Cancer Options this week, Patricia put my mind at ease explaining 8 weeks would have been ideal but it’s ‘an ideal’ rather than a necessity. And, she reminded me, I’m doing lots of other therapies that will all help to reduce my cancer in the end. Or, so I hope.

After 14 rounds of chemo, I’m pleased to say that my hair is still hanging in there. I am still losing hair but it isn’t at the rate it was and I don’t now think it will suddenly start to fall out in clumps like it has for others earlier on in treatment. Who knew that the cold cap would actually work! When I first started all this, I didn’t know one person that the cold cap had worked for. Now I know three and one of them is me! That said, my hair hasn’t had a cut in over 6 months and it has got very straggly and thin. A lovely friend, Hayley, kindly came over to the house to tidy it up for me earlier on in the week. I hadn’t wanted to go into a hairdressers and parade my thinning locks to everyone. I was also extremely nervous about all the combing and pulling of hair that goes on when you have your hair cut, so I felt far more safe at home with a friend who knew my situation. There wasn’t much to cut but it certainly tidied up the stray ends and makes me feel a bit more presentable for the Christmas season!

And so to what’s been playing on my mind. The big thing that’s been going over and over in my mind these last couple of weeks has been the question, when I come to have surgery, do I really have to have all my lymph nodes removed under my right arm?

Historically, when surgically dealing with breast cancer, women would have had a radical mastectomy, all the lymph nodes removed and even the muscles in their chest removed. The amount of lymphedema these women experienced was disabling and many ended up with elephantiasis of the arm – where the arm balloons painfully. This is because any excess fluid in the arms normally travels back into the bloodstream through the lymph system, so removing the lymph nodes sometimes blocks drainage from the arm, causing this fluid to build up. Today, this is still a very common side effect from having all your lymph nodes removed.

But, Hamish pointed out, despite my lymph nodes being cancerous, they have done their job by keeping the cancer from going to the rest of my body. Why would you take them out to be left with no lymph nodes under my right arm and therefore leaving me without any form of defence? I’ve been told by my oncologist that they are most likely going to take out all my lymph nodes from under my right arm because 7-9 of them were affected. But this just doesn’t sit right with me.

Apparently there is something called ‘sentinel node biopsy’. We have, apparently, 30-40 lymph nodes under our arms and when this type of biospy is done, they inject a die into the nodes to see if there are any malignant cells. The idea is that the die distinguishes between those nodes that are affected and those that aren’t so the surgeon is able to take the infected nodes out and leave the healthy ones. The problem is that it doesn’t seem to be that clear cut and I’ve got to find a way to convince my surgeon to consider not taking all my lymph nodes out.

There are so many horrible stories of people on my facebook groups who have had lymphedema, had cording, tightening of the skin and discomfort and pain from having lymph nodes removed, including reduced movement of your arm and shoulder that can affect you doing many daily activities. Typically a surgeon will consider that their job is to cut out the disease and so there isn’t always a discussion about how to save some of the lymph nodes, if it’s easier to just cut it all out.

I’ve been trying to research around the subject and so far I’ve been directed to the following links:

  1. Sentinel Lymph Node Biopsy for the Management of Breast Cancer: A Review of Guidelines – NCBI Bookshelf (nih.gov)
  2. Routinely Removing Axillary Lymph Nodes May Not Make Sense for Many Women (breastcancer.org)
  3. https://wjso.biomedcentral.com/articles/10.1186/s12957-021-02219-0
  4. https://pubmed.ncbi.nlm.nih.gov/28898379/ (This was the one that I feel has the greatest bearing to support my case of not taking them all out)
  5. http://www.breastcancerchoices.org/nodedissection.html (A new study found that certain women getting a lumpectomy may not need an operation to remove underarm lymph nodes, a procedure that can leave them with painfully swollen arms. Compared with not removing the nodes, the surgery did not prolong survival or prevent recurrence of the cancer.)

One of the breast cancer groups I belong to on Facebook is called “Breast Cancer Integrative Healing”, I posed my question about whether or not there was any research to support not taking out all my lymph nodes during surgery. Many shared their stories of lymphedema but many also felt strongly that they would have wanted all the lymph nodes removed if the majority of them were cancerous. The opinion is so diametrically opposed it’s difficult to know what to do for the best but one lady wrote: “I recommend finding a surgeon who will do reverse axillary mapping to save the armpit nodes that serve your arm. In the armpit are both nodes that serve the breast and the arm. With reverse axillary mapping they can save the arm ones making lymphedema much less likely.” Well, this is a massively important piece of information and one I’ll be taking to my meeting with the surgeon.

Another lady on the same group mentioned when her breast cancer came back 7 years later she “met with 6 different surgeons and insisted upon a lymphavenous anastomosis – which is a bypass surgery”. This was done at the same time as her mastectomy (although I’m more likely to have a lumpectomy). It was performed by a plastic surgeon where they reconnect blood vessels to your lymph system immediately after dissection to help prevent lymphedema. One year out she’s had no problems since. Fascinating!

And one lady with the same diagnosis as me, cancelled her breast and lymph node surgery altogether because they wanted to remove all her lymph nodes. Instead she did cryosurgery where they freeze the tumour and freeze the cancer cells. Instead she is on her second round of black salve cream that pulls the cancer out of your lymph. She explains ” .. it’s about a two week process .. within a few days u get pimples that turn to open sores that are painful but manageable.. after which they turn black into scabs and fall off . My skin cleared with little scar .. this I feel is far less invasive than surgery”.

There is so much information out there, you’ve just got to find it. If you don’t ask, you don’t get. Problem is most of these ladies are based in the USA so not sure if our surgeons can perform the same operations and indeed if this cream even is available in the UK! I’m going to ask though!

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What 2 weeks after EC looks like….

It’s been good having a week off from my regular weekly chemotherapy and, I guess in a way, also having a week off from writing my blog. I feel I have a responsibility to write useful and interesting content, especially as there are so many of you taking the time to read it. And, whilst I don’t find it too difficult to find something to write about when I put my mind to it, there is – just for a moment – a fear of letting you all down. So, a week off has been kind of refreshing but it also brings about the other challenge – to fill in the gaps of what has happened over the last two weeks since I had my first cycle of EC chemotherapy.

The infusion of EC wasn’t in itself difficult but you know when the nurses shove a bag full of injections and anti-sickness pills into your hands just as you are about to leave and are told to take the steroid pills for 3 days afterwards and start 8 lots of self-administering injections of filgrastim 24 hours after chemo – you know this isn’t necessarily going to be a walk in the park. I’ve been informed that the filgrastim injections are to help my bone marrow make new white blood cells which, in turn, will help fight infection, which one is more prone to during chemotherapy but, even more so, on EC chemo. The problem with these injections is that they can cause joint and muscle pain as well as constipation and I was warned about possible muscle spasms. Oh the joys of chemotherapy!

With EC, there isn’t much difference in terms of time spent having the treatment but, unlike Pacliataxel, EC doesn’t usually give you peripheral neuropathy so the black painted nails and the ice cold wine chillers for my hands and feet were gone. One less bag for me to have to take along for the ride! I already knew that my hair may well take a hammering so the cold cap stayed on for the duration and for an extra 90 mins afterwards.

I can’t lie, this round of chemo has been a tough one to handle. I had forgotten that the oncologist had mentioned that EC can really fatigue you and that it might produce a 5-7 day dip so, I guess it was no surprise I found I had to take myself off for naps a couple of times a day and head straight to bed the moment the kids had finished supper every night for approx 6 nights. But, seriously, how inconvenient! I find all this napping and lacking in energy totally infuriating and not helpful when I have things I need to get done. Especially with Christmas just around the corner!

I know, I know, that I’m supposed to listen to my body. Well, I have no choice when the tiredness takes over me. I have to just lie down and close my eyes. But, on top of the fatigue, I had also been warned that undergoing chemo would more than likely put me through early menopause and on Saturday night and several other nights during the following week, the ‘night sweats’ came to visit me in much unwelcomed bucket loads! Thanks Cancer – the gift that keeps on giving!

Then, just as my fatigue started to wane and my energy levels began to increase a little and I was sort of lulled into a false sense of security that I was handling this all just fine, I woke at 4:30am on Friday morning, of the following week, feeling really uncomfortable. I couldn’t seem to find a comfortable position to lie in. Every which way I turned, a sharp pain shot through my lower back.

I knew I had to get out of bed. I made my way downstairs in the dark, not understanding what was happening to me. I put the kettle on, because that’s what you do when you aren’t feeling well and I heated up a rice pack to try and alleviate the spasms that continued to pulsate through my lower back. I vaguely remember being told about the possibility of muscle spasms. All I knew, I needed to find out what was going on with me. I grabbed my laptop because I needed to search up if what I remembered I’d heard about the side effects from these injections was indeed happening to me? Sure enough, there were several stories of women who had experienced lower back muscle spasms on day 6 of injecting filgrastim but, for many, the spasms continued for several days and even spread down their legs. Oh goodness, was this what lay in store for me?

The spasms I experienced went on for three hours. Poor Hamish could only watch on in concern, reheat my rice pack and get things ready before the kids came down for breakfast. I couldn’t sit down or stand without spasming, there was no position that alleviated the pain. The spasms didn’t feel too dissimilar to the contractions I felt when I gave birth to Freddy. I was just worried, I could handle the pain, just wasn’t sure when it was going to end. The tears rolled down my face as I fought back the urge to cry out. Nothing seemed to help except pacing round the kitchen whilst I awaited the next onslaught of spasms. My oncology team wouldn’t be available to speak to until 8am and so I had to call 111 around 6:15am. This then led to them calling the paramedics for me. It was a last resort but I wasn’t prepared to take a trip to A&E and wait for hours to be seen so this was the next best option.

Of course, by the time they arrived at 07:30, the spasms had subsided and there wasn’t much more they could do other than take my obs and temperature. The male and female duo were just lovely. I felt so embarrassed that they had arrived to someone who was no longer in pain and they could have been somewhere else saving someone else’s life! But, they cracked on asking me about my meds and my supplements. I had to decide there and then on the spot whether or not to tell them about my repurposed drugs. I chose to share that I was taking metformin and Low Dose Natrexone despite me neither being an alcoholic or diabetic. With quizzical expressions I went on to explain a little about all the extra stuff I am doing to fight my breast cancer and, surprisingly, they responded with such enthusiasm for all that I am undertaking and wished me well as they went on their way.

Other than the odd twinge, I didn’t have any further back spasms. I was exhausted though and took myself back to bed. Thank goodness Hame could take Freddy to school. I finally got through to the chemo suite at the hospital around 8:20am and was told to expect a call back from the oncologist sometime in the morning. We needed to speak to them to understand what I should do if the spasms returned and was it really necessary to take all 8 of the injections? They ended up speaking to Hamish, as they called when I was asleep, and basically said, in no uncertain terms, that I had to continue with the injections to avoid the chance of infection and that they would provide me with a prescription for Codeine in case it happened again. And, apparently, taking an anti-histamine with the injection can help too! Wish I’d known this before!

The thing is I’m taking all these supplements already to help with raising my neutrophils and my white blood cells but, they aren’t supplements that the oncology team have prescribed for me so they are treating me like every other person who is just tackling it from the chemo side of things. It’s so tricky that I can’t join up all the teams and share everything I’m doing with everyone. It would make it easier for me but the medical team aren’t trained on all the nutritional side of things and the complementary therapies like hyperbaric oxygen therapy, heat therapy, Vitamin C infusions and the repurposed drugs. None of these would work just on their own, but all together they are certainly a force to be reckoned with. I almost can’t wait for the next scan results!

So, that was the drama that happened over the course of the last two weeks. Hoping for no more, of course. And, with my second lot of EC in two days time, if I was a betting woman, I’d say I should be in the clear! But I’m pretty rubbish at betting, as my friend Carol knows! We celebrated her birthday on 27th November with a gorgeous lunch at Rocca in Dulwich, catching up with lots of lovely people and discussing the possibility of her and John’s racehorse, The Cobb, running at Sandown the following week. I completely mucked up the bet, as I have done on two other such occasions, and never ended up placing it. Gutted as The Cobb came in 2nd and I could have had my first win!

Our friend, Sarah, took some lovely photos of the birthday afternoon but I found the pictures of me hard to look at. This week’s photo is one from that day – with my wonderful Hamish right behind me as I filmed Carol’s birthday speech. I thank God for Hamish every day. I’m so lucky to have him by my side. He still tells me how beautiful I am but, unfortunately, that’s not how I see myself. I know I’ve lost a lot of weight but it’s also aged me and I don’t recognise the person in the photos. I try not to look in mirrors much, I don’t particularly like what I see but I have an image in my mind of what I used to look like, an image that I quite liked and is no longer there. I know I’ll get better. I’ll change and hopefully fill out a bit more and iron out some of those wrinkles that are now far more obvious on my face and around my tummy. I’m no “balloon” anymore, that’s for sure. The wrinkles are certainly more pronounced – I’m more like a deflated “balloon” that’s lost all the air inside it. Sorry for moaning. There really are more important issues at stake. I do know that. As Hame reminded me, I’ve done pretty well with chemo thus far but it is poison that is being pumped into me after all. How can I expect to get away scott free? I can’t. Something has to give.

It’s not all doom and gloom though. I had a wonderful free massage that a friend of a tennis friend, who is training to be a masseuse gave me. She came to the house and set up in our Christmas decorated sitting room. I had a whole hour of being massaged. It was divine. Very happy to have been one of her guinea pigs!

In the first week, I had a catch up with Silvia, my functional nutritionist, who went through my most recent blood results and iodine test results. Basically, it is believed that there may be a correlation between low iodine levels and breast cancer so understanding what my iodine levels are can help. Silvia noted that, compared to many of her other clients, my iodine levels are much higher. Apparently, I’m only ‘mildly deficient’ when most of her patients are ‘severely deficient’. She’s encouraged me to sprinkle a bit of seaweed on my dinner twice a week to improve my iodine levels.

From my blood test, she identified that my Vitamin D levels need to come up so we are upping my dose by an extra drop. Also, my cholesterol levels are a bit low. If this drops to below 4 this can be a problem because it’s cholesterol that makes my progesterone and cortisol and makes the vitamin D in my body and is involved in the repair processes in my body. Currently my level is 4.2 so it’s sailing a bit close to the wind. But, good news is that my inflammation is under control and my neutrophils are holding up.

She recommended that I do some Nutrigenetics testing. The future of medicine has to lie in a personalised treatment strategy based on information relating to one’s own individual biochemistry and genetic inheritance. This is a test that can work out my own specific genetic variants (geneticpolymorphisms or SNPs). Silvia explained that “this can be very empowering in terms of identifying your personal ‘weaknesses’ and the targeted nutritional and lifestyle actions that can help you overcome them, thus reducing the overall risk of disease. SNPs can affect different areas of health, from food metabolism, to toxin elimination via a number of detoxification pathways, methylation, inflammation, bone health, use of nutrients, etc.” The company I’m testing through claims that “this test will help you obtain objective data about yourself to aid in the development of a more precise treatment strategy and enable measures to be implemented that will help you attain a higher level of health.”

It’s expensive but if I can then find out which foods metabolise well and which foods don’t in my body then I will have a clearer understanding of what to avoid in the future so as to reduce the chances of breast cancer recurrence – something that many women face several times in their life after their initial diagnosis.

It’s got me thinking about what is going to happen next. After tomorrow’s meeting with my oncologist, I’ll understand a bit more about timings of what happens next. When the next PET and MRI scans are? When surgery might happen? So, whilst I’ve been trying to figure out how to get my 3rd vaccine “for immune suppressed people”, rocking up at the Bromely Civic centre only to find a huge queue of people waiting to walk in to get their vaccines and me battling with time to stand in the queue and then racing down to Swanley for my Hyperbaric Oxygen Therapy three times a week, it hasn’t really happened. I have to say, by the third time of doing this, I has started to get quite fed up. But, sometimes, these things happen for a reason and when a feed came up on one of my breast cancer facebook groups about how the vaccine has ended up affecting many women’s cancer markers and shown up increased inflammation in their scans, it got me thinking…. this isn’t the right time for me to be having my 3rd vaccine. I imagine my next MRI and PET scans will be booked sometime just after Christmas so I don’t need my body fighting off any inflammation that may occur as a result of receiving the vaccine. I can get that later, after the scans have been taken and I know the results aren’t going to be skewed because I’ve had the Covid vaccine! The doctors need to be looking at an accurate picture of what is now going on in my body so they can make an informed decision about surgery and ongoing treatment. I can’t afford another ‘jelly fish sting’ misdiagnosis!

I have also been trying to up my exercise every day. I noticed I was making a lot of excuses to avoid going out in the cold for a walk or a run and just feeling increasingly too tired to do much of any kind of exercise but, apparently, it’s really important to try and get a 30 minute walk in the morning done to raise your levels of cortisol otherwise you can end up with ‘cancer fatigue’. I’ve certainly recognised that feeling so, “no more”, I say! Out I’ve been walking with my wonderful neighbour, Es, every Tuesday morning, with a bit of a stop in at a local cafe on Keston Green. Very civilised. Then the odd brisk walk with Freddy to school and a run back home a couple of times a week is definitely helping.

It may have certainly contributed to my energy boost at the weekend when we were invited to some friends for dinner on Friday night for a wonderful feast of steak and lobster and then out for lunch with the family and other dear friends, up in London on Saturday. I love London at Christmas, all the lights and watching the kids so excited walking around the City at night but I was super glad to jump into bed when we got home. Three out of the four of us fell asleep on the train journey home! I think that’s enough excitement for this week. Bring on Cycle 2 of EC! I can do this!

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Cycle 1 – EC Chemo

The week has finally arrived. The week that I’ve been most nervous about because this is the week I have my first cycle of epirubicin and cyclophosphamide. I was told at my first oncology appointment that this would be “the tough one” and the one that if my hair hadn’t fallen out after Pacliataxel then “it surely would with EC Chemotherpay”. Oh gosh.

I feel a bit embarrassed that I’m putting so much emphasis on the losing of my hair, given what so many other patients have had to put up with through their various chemo treatments. The thing is, I haven’t had any side effects really – apart from a bit of nausea (which I think was to do with taking too many supplements all at once), a bit of fatigue, some drying of the skin and thinning of my hair. I’ve survived my nails falling out. I’ve survived the complete loss of my hair, eyebrows and eyelashes. I’ve survived getting peripheral neuropathy and rashes and itchy skin and muscle aches. So, yes, my hair is the biggest issue at the moment, for me – especially as I know my blood results and markers are heading in the right direction and that I’ve had “better than average” scan results.

The nurses have told me, because I’ve asked of course, that “everybody experiences EC chemo differently”. Yes, I know that! But, they also said, depending on how you ‘manage’ the first and second cycles of EC, may well determine how you manage the rest of it. With only 4 cycles over a course of 8 weeks, I’ve been told if my hair is going to fall out it will be after cycle 1 or cycle 2. Well, I’m going to have to wait this out with bated breath!

I have to admit I’ve felt quite emotional this week. I don’t know if it has had to do with the impending EC Chemo on Thursday or if hormones have been at work at home? Ava has had a few pre-teenage dramas at school, which has left her feeling quite emotional and teary and has taken up time and mind space and talking her through things and sharing life stories. But, given I no longer have periods and Ava hasn’t yet started hers, we have no real way of knowing if our hormones really were the reason that our emotions were up the spout this week! Even with these foreboding thoughts running around my head – unwelcomed, I should add – I still have to step up and be Mum. I need to be there for her, for both my kids, especially now, when things are ‘a bit different’. I can’t take time off from being ‘Mummy’. I don’t want to take time off. If Ava needs me, I need to give her my time, I need to give her my full attention, even if I don’t always feel like it.

I’m reading a book that one of my lovely friends gave me at the beginning of treatment. I’m half way through it, so no idea how the story is going to end or what lesson we are going to learn from it but it’s basically about a middle aged woman who catches an early train up to London with her husband so they can head to their solicitor’s office to sign the papers for the purchase of their new house. Then completely unexpectedly, the husband proceeds to have a heart attack in the carriage, right in front of his wife and the other passengers and dies. Cheery I know! The thing is, whilst I don’t believe I’m going to die right now, in fact I have every intention of fighting this cancer until the bitter end and beyond, but people do die from cancer and why am I going to survive where others have not? How can I be so presumptuous?

Reading this book this week started me thinking about me dying and what and who I would be leaving behind. When that sort of thing takes you in its grip like that, one’s mind can run away with itself and all of a sudden I’ve felt very overwhelmed. Like time has suddenly stood still. But, whilst I was trapped in the jaws of this time warp, everyone else around me including my friends and even my husband Hamish were carrying on with their normal lives and daily routines. Everything, to me, this week has become quite mundane and pointless. Why is my husband working on a house weekend in and weekend out when I may never get to enjoy it or see it finished? Why doesn’t he choose to want to spend more time with me and the kids when time could be running out? Why do my kids still complain about the healthy food I put in front of them, when this could be one of the last meals I may cook for them? Why do they prefer to be on their screens rather than spending time with me? Why don’t we just bring my mum back from Spain and find a way to have her home with one of us, even if we don’t sell the house? Time is so precious and you can never get it back. And it has felt very much like it could run out for me too. Sometimes it feels too hard to tell people how you really feel. It may shock people to think I’m thinking such dark thoughts and then what does that say about me? And, then this may start to cause them worry, so maybe it’s better to just keep quiet and get on with things?

Of course, whilst I’ve been contemplating all this morbid stuff, I have also had to try and remind myself that life doesn’t suddenly stop for anyone, let alone death, and that realisation alone has stopped me in my tracks. Bottom line is that this is happening to me. I don’t expect anyone else to be all consumed, quite in the same way as I am, by the thoughts that plague my mind, but they are there nonetheless. So, I need to dig deeper and stop feeling so maudlin. We all have good days and bad days.

On a more positive note, I had a good follow up call with Cancer Options who was checking in that all was going as planned and I wasn’t having any adverse reactions to things. It also gave me the opportunity to ask her more about the medication she’s advised I take to help me understand the purpose behind each of them. I feel I need to know what it is I’m pumping into my body, rather than blindly accepting someone’s recommendations. I have to be congnisant of the benefits of each one, at least. So, this is what I learned:

2DG – I take 2 tablets every morning when I wake up and 2 before I go to bed. These are one of a number of medications I’m taking to block glucose. Cancer feeds off glucose and uses it as a transporter around the body to set up shop elsewhere if it wants to – hence the reason to stay away from sugar, carbohydrates and alcohol. But the clever thing about 2DG is that this medication, whilst it’s a form of glucose, and the cancer is attracted to it, it can’t be used by cancer cells to grow. By introducing it into my body, it is a bit like a Trojan horse tricking the cancer cells to move to where the 2DG is in my body which then becomes trapped and more vulnerable to the treatment which then zaps them dead during chemo.

The high dose vitamin C supplements I’m taking including: Liposomal, Lipoic Acid and Ascorbic Acid are the ‘next best’ option, I’m told, if you can’t easily afford or get access to Vitamin C infusions. The problem is that the nearest Vitamin C infusion centre to me, I believe, is in London. Not only that but it costs , thousands of pounds to pay! And, in order for it to be effective you have to have these infusions done several times a week because Vitamin C is very water soluble so it doesn’t stay in the body for long periods – costly and timely for any normal person, let alone it can cause damage to veins if you don’t have a PICC line or PORT. But, apparently these three supplements are far more affordable, more manageable and Liposomal manages to stay in the body for longer, just not at the quantity that an infusion of Vitamin C can give you. They also told me that apparently, Liposomal when taken in conjunction with Ascorbic acid manages to hit a higher concentration of Vitamin C than just on its own. And, then when you add Lipoic acid, this latter supplement revitalises it so the Vitamin C doesn’t get excreted too quickly from the body! Fascinating hey!

Then I asked about the purpose behind the sauna therapy. I didn’t buy a sauna tent in the end as they were hideously expensive but bought a “infrared lamp” from amazon for approx £35 instead!! I was worried it wasn’t reaching the heat temperatures that the tent could but what Cancer Options told me was that having infrared heat directed at the breast and lymph nodes increases blood supply. It may be so subtle that I don’t feel it actually working, like most of the therapies I’ve been asked to do, when the heat is combined with the 2DG, it makes the cancer cells start to scavenge. We want this to happen as supposedly once the 2DG is in my body, the cells gravitate towards the 2DG. The heat breaks down the environment around the cancer cells. Cancer, for it to grow, has to alter the environment around itself so the patient needs to change the terrain back to normal, so the cancer cells can’t thrive and the heat combined with the 2DG is one way to do this.

Apparently, it’s the simple and cheaper things that can change the metabolism of cancer: fasting, heat and oxygen. So, with that new knowledge, the 48 hour fasting that I have done this week for EC Chemo has been easier, knowing what is at stake. I had a massive breakfast, well for me anyway, on Wednesday after the kids went off to school and then didn’t eat until Friday lunchtime. It was totally manageable. After breakfast on Wednesday I had my wonderful facial from Smooth by Suz – given the oxygen therapy that I do has a very drying effect on my skin and the indentations from the mask don’t leave my face until the end of the day! I could go to oxygen therapy thoroughly hydrated and smelling wonderful.

Thursday morning had me feeling very nervous. The age old, not knowing what to expect and how I’m going to cope with this new chemotherapy. But, I did survive. I was also told by one of the nurses, who announced it to everyone, that my bloods are so good that you’d never know that anything was even wrong with me. Joy is one of my greatest advocates in the chemo suite! Love her and her support for all my complementary therapies and even fasting! Nice to know all the supplements are doing their job! Afterwards, I was quite fatigued but no nausea and no big clumps of falling out hair yet – but I haven’t washed it yet. That’s for Saturday! Ended up hitting the sack at 18:30 because I just didn’t want to sit and watch the family eat the delicious food that my friend Nompi made for us. Good thing as I didn’t wake until 7:10 the next morning. Finally ate at 12:20, some home made soup also from Nompi and it tasted divine.

My package of metformin and LDN arrived in time for my first session on Thursday so I’m fully stocked up now. I have also been given, by the hospital some steroids to reduce the feeling of nausea and then from Saturday night I need to give myself an injection for 8 days after to try and rebuild the quantity of neutrophils I’ll lose as a result of this heavier chemo. I have to do this to avoid infection and boost my immune system. Oh well, in for a penny, in for a pound!

What has been nice this week is looking at our Christmas decorations that I had so wanted to put up early to enjoy every last minute of them. I even managed to get the fire going, all by myself, receiving high praise from hubby! This weekend we tackle the outside Christmas decorations!

I also finally launched my new Career Coaching website courtesy of Eleanor Grace Photography. Take a look at it and let me know what you think… http://www.ceciliagarnettcoaching.co.uk. And, please feel free to share with anyone who you think may be interested. I can coach via zoom too. Look me getting all techno’d up now!

I may take a week off from writing my blog as no chemo next week. But will fill you in on the coming week’s developments when I’m back at chemo on 9th Dec. Wish me luck. Hugs and kisses everyone. x

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Dreaming of a holiday….

As I write this, I’m sitting here thinking, gosh I hope I can finish cycle 12 this week. My last round of Pacliataxel is due to be given to me tomorrow. I have been suffering from a stinking cold for the last few days which began, as it always does, with a shocking sore throat. Worried and scared, in this day and age, that I might have inadvertently caught Covid whilst I’ve been out and about – which has far greater repercussions for me than I’d like to give it credit for – I took one of my daughter’s lateral flow test to rule it out. No Covid, thank goodness, but nevertheless a very runny nose and blocked sinuses. There will still be the possibility that they postpone chemo tomorrow if my bloods are low and my immune system is down due to said cold. Fortunately, I haven’t had a temperature and, today, I feel better and I think I can mask any cold I may have had, to blag my way into chemo tomorrow!

This has been a bit of a wishy washy week, particularly with me not firing on all cylinders and my head feeling very blocked. I even had to cancel a Hyperbaric Oxygen Therapy session for fear that my ears might explode in the chamber with my clogged up sinuses. But it definitely feels like the last march down this battlefield before I change weapons and replace my suit of armour and go out on to the new EC battlefield. So, I’ve had this sort of ‘what is going to happen next?’ feeling hanging over me all week.

My head has been a whirlwind of thoughts all bouncing into each other as I try to make sense of my next steps. After last week’s oncologist meeting, I’ve been trying to work out if staying at the PRUH is better than transferring to the Marsden? Hamish and I have talked it over and we are very happy with my original chemotherapy oncologist, who has been walking me through my options ever since I submitted my complaint. He seems to understand my concerns and is doing everything to help me navigate my way through them. And, now, that I know I can have radiotherapy at Sidcup under a Guys and St Thomas’s specialist, the fear of having to deal with Dr K has been alleviated. I’ve sort of got used to the hospital now and the ‘nice’ nurses greet me like an old friend each week. And, the journey door to door is only 15 minutes – so there are obvious benefits.

I am worried about this new lot of chemo – having been told many times how this new one is heavier, can leave you feeling very fatigued and nauseous and bald! I haven’t had the ‘side effects’ talk yet – which I guess I’ll get next week – but I’ve heard that I will be given 8 daily injections to take after the new chemo to help me manage the side effects better. Don’t like needles and it’s been so good to have my PICC line so no needle has pierced my skin in months but these injections have to be administered by myself! May have to get my friend Suzi round to help. I’m such a chicken!

It’s got me thinking, finally, about maybe booking some sort of special holiday with Hame. We never got to celebrate our 10 year wedding anniversary properly because of Covid and because of my diagnosis. I didn’t get to go away for my 50th either but when is it going to be feasible for us to go away? I’ve always wanted to go to The Maldives but we’ve always had the kids, the house to fix up, visits to Spain to see my parents, holidays back to New Zealand so it hasn’t really been the right time. If we do go away, it makes sense to do this whilst the kids are at school, due to cost, but then I have to factor in all the logistics of who looks after the kids? It’s too long for one family to have an extra child so I started thinking about two families per child. The logistics don’t frighten me but it’s such a lot to ask someone to take on when I’m off sunnying myself on a beach! If we go, it makes sense to go, I think, in between the last lot of chemo and surgery – which makes that the end of Jan/beginning of Feb. I’ve enlisted the help of a travel consultant to help find the ideal place but I just have to figure the rest out.

The thing is neither of us knows how I’m going to feel after this chemo. As Hamish pointed out at the weekend, after 4 rounds of EC I could be at my weakest and my most bald! Can I go on holiday skinny and no hair? Will I want to go on holiday and have people staring at me? I can’t imagine any travel insurer is going to want to insure me unless I’m prepared to pay a small fortune!!! Cancer does that unfortunately! But the idea of warm waters and sun on my skin is so tempting. Can I dare to dream?…..

Well, I may have an answer to my potential childcare issues. Two lovely friends have kindly offered to have the kids – separately of course. And, then Ava’s wonderful godmother, Jo, and my school friend from when I was 16 years old, has offered to come down and step in for us for the remainder of the time!! Jo has been a constant in my life. She’s a very special lady and I feel we have become even closer since my diagnosis. This weekend, she drove down from Nottingham for a short visit. She arrived on Sunday afternoon just after Hamish and I had watched Freddy win his ‘singles’ and his first ‘doubles’ tennis matches! Go Fred! All the perseverance and practice has finally paid off – for this time anyhow.

Jo arrived later that afternoon. She has the most impeccable taste and eye for detail, especially when it comes to home interiors and interior design. I was blown away by the project she and her husband undertook refurbishing and decorating a luxury French boutique hotel near Bordeaux, a few years back. Now she has set up on her own. It’s so fun going through magazines and ideas for our home. She’s very highly sought after up in the Midlands but she is so generous towards us and gives her time and shares her expertise for free with us! We’ve just bought an oversized, round, stucco’d mirror for our ensuite through her and now she’s helping us source a velvet armchair for our new bedroom!

We had the chance to just be and spend time with one another. I feel so lucky to have such lovely friends. Then, on Monday, the two of us headed off to Ruxley Manor, a sprawling garden centre, local to me, to get in the mood for Christmas and buy a few decorations. Yes, you may laugh, the two of us have totally turned into to middle aged women, excited at the prospect of a morning wandering round a garden centre – followed by a spot of lunch of course! This weekend I am going to get the tree down from the loft, put a fire on and start dressing the house early for Christmas – I don’t care if it’s too early! I love Christmas!

Before going back to the hospital for my weekly PICC line maintenance and bloods on Wednesday, I had booked in a call with a company called Clinic 158. It took me two weeks to get a phone appointment. They are a private clinic recommended by our Cancer Options people who are able to prescribe repurposed drugs for people like me.

Repurposed drugs are drugs that are essentially already on the market but used to treat specific disorders but also have properties that treat other illnesses but don’t currently form part of the usual treatment process. These repurposed drugs are much more attractive to us patients because there are substantial costs associated with a new drug as well as the usually slow pace of new drug discovery and development. The repurposing of ‘old’ drugs to treat both common and rare diseases is increasingly becoming an attractive proposition because it involves using compounds that have already been tried and tested and therefore have less risk to the patient. But, of course, the pharmaceutical industry doesn’t make any money using ‘old’ drugs and therefore the NHS doctors aren’t always aware of what these repurposed drugs can do beyond what the pharma cos have told them.

The clinician I spoke to asked a few questions around my treatment plan and then launched in to explaining how I was to administer the two repurposed drugs that Cancer Options had recommended I start taking. So, once I receive my prescription I will begin to take Low Dose Naltrexone (LDN) two days after I have my new chemotherapy. It comes in liquid form because they are such small doses I am taking. I start on 1.5mg and increase 0.5mg each week until I get to 4.5mg every night 2 hours before bed. Naltrexone has primarily been used to manage alcohol or opioid use disorder. It is an anti-inflammatory medication and will essentially activate my own anti-inflammatory cells which is crucial for killing cancer. This drug benefits auto-immune conditions, including cancer!

It is known that inflammation’s dark side is a powerful force in cancer development, where it aids and abets tumour growth and spreads around the body. My notes from Cancer Options explain that LDN “is an emerging treatment in cancer terms, many doctors are campaigning to have it recognised. It is a drug that has been in use for many years and is clear that at low and very safe doses it stops opioids in the body encouraging the cancer to spread.

“LDN boosts immune system function. Scientifically, endorphins are neurotransmitters in the brain that regulate immune function, cell growth and pain sensation. They bind to neuroreceptors. According to the Journal of Immunology, the release of endorphins can boost the immune system.

“Scientists have discovered that the beta-endorphin activates NK cells (natural killer cells) which are believed to kill cancer cells. Beta-endorphins also relieve pain, reduce stress, and postpone the aging process.”

The other repurposed drug I’ve been told to take is “Metformin”. I’ve read about this plenty of times in Jane McLelland’s book “How to Starve Cancer” and it gets talked a lot about on various facebook cancer posts. Metformin is commonly used to treat type 2 diabetes. It essentially brings down glucose blood levels and given cancer feeds on glucose this is an important one to add to my armour but neither of these drugs can be prescribed by our NHS doctors because I’m not a diabetic nor am I an alcoholic – well certainly not any more!

If you’re interested, the science behind it, according to Cancer Options is “both with chemotherapy, radiotherapy and with cancer generally reducing access of glucose to cancer cells reduces their metabolism, stops insulin spikes and for treatment makes cells Scavenge rather than hibernate so they are vulnerable to treatment.”

I need to take both these repurposed drugs for the next 3 months until the end of the duration of my treatment and then it’s common for cancer patients to continue taking them for the rest of their lives. I don’t like the idea of being on medication for the rest of my life but then again, if these drugs have the ability to lower the glucose levels and reduce inflammation in my body (thereby reducing two of my cancer’s main food sources) then that has to be a good thing! Right?

So, Thursday saw me complete my 12 week cycle of pacliataxel. It’s quite a milestone really but it was kind of marred by other events that happened in the chemo suite today. Firstly, I was nervous to find out the Head Nurse was assigned to me. I have never had him look after me. I have always had the distinct impression that he doesn’t like me much but, today, he was as nice as pie. I was on my best behaviour though and only had two bags with me! I had decided to ditch the chilly bin with all the cold hands and feet paraphernalia because I was too cold and not having got peripheral neuropathy by now, felt unlikely for it to get me on my last round! Although, they may be famous last words so will have to watch this space!

But, there were two other ladies in the chemo suite who had an awful day today. It’s hard not to see and hear what’s going on during these private moments because the chairs are so close together. Apart from the sounds of the nurses’ chipper voices and scurrying around, the patients don’t talk much – mostly because we immerse ourselves in our books or laptops or just fall asleep due to the antihistamine medication. Today, however, I woke to hear gentle sobbing. The lady to my right was crying behind her mask. One of the good things about having to wear a mask in a hospital is that you can hide your emotions more easily and you can stifle the sounds but not completely. Poor lady, had just been told by her oncologist that her chemo wasn’t working and she had to change her treatment plan and undergo another lot of chemo. She was so shocked and so thrown. I really felt for her but wanted to give her privacy so I looked away. Not much more I could do given I was hooked up to my pacliataxel IV drip and the cold cap machine. Fortunately, a kindly nurse bent down to console her, held her hand and kept her company whilst she had a little cry and managed to move her to a private room so that her husband could drive back and join her in the room to give her some moral support.

Another elderly lady, opposite me, looked worn out and, having spoken to her last time, I asked if she was all right? She had already informed me when we began talking last week that she was diagnosed ‘terminal’ and that she had to come in to have chemo 6 hours every day. But, she also mentioned she has to have blood transfusions too. The poor thing had plasters all up and down her arm because the nurses couldn’t find a vein. Never have I been more happy to have chosen to have a PICC line. It must be awful. Despite my situation, I do feel lucky.

Luck must be on my side because last minute we realised Hamish couldn’t collect me from chemo today as he had an important call with his boss in New York so my wonderful friend Caroline came to the rescue! She was so grateful to get the call from me. It still surprises me what people are prepared to do for me. I was so grateful that she could take time out of her busy day and come get me yet, bizarrely, she implied that I had made her day by receiving the call from me!

Caroline arrive at the hospital – although she had a client and I couldn’t get hold of her to confirm pick up time because she had left her phone on airplane mode!!! When she did come to get me, on the way home, she nearly drove us into another oncoming car! But hey ho! As she said “you survive 12 weeks of pacliataxel and then I go and get you killed on the way home”. Laughing out loud, she made up for it by driving me up to Freddy’s school where we picked him up, with his bike, and dropped us home safe and sound. Lucky….I live to tell another tale…..

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Healing myself…

My penultimate week of Pacliataxel. It feels a bit of a momentous occasion – having reached cycle 11. Just one more of these next week and I’ll be done before I have to move on to EC which involves the administering of two drugs: epirubicin and cyclophosphamide.

I recall sitting in the chemo suite all the way back at the beginning, 3 months ago, and listening to a chemo veteran saying she was on cycle 11. I remember thinking, “wow, that’s so far away for me, I hope I’m as cheerful and that I have all my hair like that lady by then”. Well, I’m cheerful, I have lost over half my hair but I feel optimistic and positive.

So lots has happened again this week. I finally had my MRI scan last Friday at 07:45. Stupidly early but I had a full day so I didn’t mind. The MRI scan had been delayed because the machine had broken. Was in and out by 8:45. This scan was going to give me the more specific measurements of my tumour shrinkage, which I hoped they’d have in time for my oncologist telephone appointment on Wednesday afternoon.

Later that Friday morning I was booked in to have reflexology. A good friend, Caroline, had bought it for me as a present. She goes quite regularly but I’ve never had it, ever. Having recently got into facials, I was totally looking forward to a bit more pampering and ‘time for me’. Well, it was revelationary. The nice lady I saw in Keston was extremely knowledgeable and was able to talk me through all the points in my foot and how they related to my current illness and treatment. It was not only fascinating, wonderful to relax but also to have my feet massaged!

The areas she mentioned I had some blockages in were the spleen, pituitary and adrenal glands – which all make sense given they are working overload to rid me of the toxicity of chemotherapy I’m having. She identified there had been some ‘recent’ activity in the lung (which you may recall from my last blog, is no longer present?) Recent – because is showed up in my left foot rather than in my right foot! Crazy! She found some sort of blockage in my sinuses, which I can’t account for – not even having a cold at the moment! And, no surprises here, she mentioned that my digestive system is ‘fabulous’ – which is normally an area that shows up as an issue for most of her clients. So it looks like the nutritiously dense diet Silvia is having me follow is working its magic!

Friday night, I had another problem with nausea and my supplements so took myself off to bed early but we had been worried about Ava and her skin all week. She has never had a spot, and then she got two on her forehead. Quite big ones that just seemed to get bigger and spread across her forehead. By last Thursday it had spread to below her eyes and on to her nose. I should have got it seen to sooner, but I just thought it was the beginning of teenage spots. However, on Saturday morning, I knew I had to get her seen to but with the GP surgery closed and the idea of going to a walk-in clinic and sitting there for hours in close proximity to a whole load of properly sick people, filled me with dread. So, I whisked her down to the pharmacy where we spoke to a very pleasant lady who took one look at Ava and told me she thought it was impetigo! Explaining my situation with regards to undergoing chemo, I asked her how could I get her seen to and obtain a prescription for her without having to mingle with the sick? Her suggestion was to phone 111. So that’s what I did. Ava and I drove home to a side road close to our home, made the call and sat in a holding queue for half an hour. We have such dodgey reception at home that I couldn’t risk being kicked out of the phone queue or mid way through conversation so we sat there and waited our turn. Eventually, we got through and were told to expect a call within 6 hours. I was supposed to be next to my daughter the whole time in case the doctor phoned but I had arranged to have a walk with my friend Holly and at 12:45 had managed to book my first Hyperbaric Oxygen Chamber Treatment down in Swanley. Ava would have to stay at home with Hamish.

Eventually, at 5:30pm we got the call at home and the doctor booked us an appointment in A&E for 18:20 at the PRUH – our local hospital – the one I visit religiously every Wednesday and Thursday! Oh God! The idea of heading out to A&E on a Saturday night, on Bonfire Night of all nights, with my 12 year old filled me with dread. The doctor had reassured me that the appointment would help speed up our time there and so I wouldn’t have to wait long.

Hamish, of course, offered to take Ava instead but someone needed to wait around for Freddy to return home, Hame was still working on lining out the playroom wardrobes, he was due to speak to his parents in New Zealand (who are still in lockdown and looking after their intellectually handicapped, middle aged son – which hasn’t been easy – and I knew they were looking forward to speaking to him). And, I knew that most likely I’d be the best one to take her as I’d be able to play the ‘cancer card’ (if I had to) to get seen quicker – so off I went.

A&E was busy, even at 18:20. Lots of parents with sick, snotty, coughy and fever ridden little kids. Others there with their elderly parents in wheel chairs and the odd teenager holding their arms and fingers carefully, having potentially broken them during various sporting matches that had occurred earlier on that Saturday. I have to say playing the cancer card didn’t get me very far. I was banished to our car to wait, given the heightened germ alert in that waiting room. I was assured I’d receive a call from the doctor when it was our turn to be seen.

So ironic, because I knew we’d be in and out so quickly, if we could just get seen. The sign on the door said the average waiting time was 4 hours! Oh my goodness. 1.5 hours later, I went back in to find out how many people were in front of us. 9 in total. That equates to about another 2-3 hours. I broke down and the tears streamed down my face. The tiredness of the day’s events and the disappointment in myself for not having got Ava to the doctors early enough in the week pressed upon me. I wasn’t going to last much longer. I chose to speak to the receptionist and relay my situation again and when it was obvious my cancer wasn’t going to hold any clout, I told her that I would have to take Ava home so that my husband could relieve me of my post and take over. Well, that didn’t go down well at all. I was, in no uncertain terms, told that I wasn’t allowed to leave the hospital now that I had entered her in to the system. I explained I was only a 10 min drive away but that fell on deaf ears. So, I decided to pop my head round the corner to the room where the nurse, who booked us in, sat and asked her for her advice. She told me to drive home, quietly, get my husband to take over and bring her back but to keep my mobile phone handy as that’s the number they’d call us on for when they were ready for us.

Like some mad woman from the Dukes of Hazzard, I grabbed Ava and ran to our car to get home as safely and quickly as we could. I alerted Hamish to the situation so he could be ready for the switch over. He told me he’d quickly jump through the shower and would be ready for us upon our arrival. Well, every cloud and all that, the streets were pretty empty. Possibly, because the majority of people were out watching fireworks or tucked up in front of their tellies enjoying their Saturday night! So, we made it home in record time. No sooner had I walked through the door and had undone my laces, my mobile rang….” Hello Mrs Garnett, we are ready for you, where are you?” Oh no!!! Hamish was still in the shower! I made out that I had parked in the Sainsbury’s car park because there were no spaces – local knowledge of the hospital parking system certainly helped on this occasion. I know the receptionist and nurses would have told them about my chemo treatment which is why they sent me to wait in my car, so it was believable. I tried to stall him by saying it’ll probably take us 5 mins to walk round to him and would that be all right? “Of course, take your time, we’ll be here waiting for you”. So, back in the car we went, green lights all the way, we made it back in front of A&E within 6 mins. The doctor confirmed it was impetigo and gave Ava some topical cream to administer 3-4 times a day.

So, apart from the usual life dramas that happen to all of us, this week I have been mainly focused on taking the new lot of supplements and therapies that Cancer Options has recommended, as well as booking in a call with the private clinic who will assess me for the repurposed drugs that they’ve advised I take.

I had my first hyperbaric oxygen chamber experience on Saturday. I headed over to Swanley just after midday and tentatively entered the little office run by the Multiple Sclerosis Society volunteers. I was greeted with a warm reception and shown to a seat by the entrance to the tank. The chamber looks like a decompression tank but this one is kitted out with 8 old train seats that have obviously been reconditioned and recycled for the patients to sit around the chamber hooked up to the large oxygen tank. There were only three of us on Saturday – a gentleman who walked in right at the last minute and a young lady, possibly late 20s, who explained she got Covid at the beginning of the year which gave her a swelling on the brain and made her have several, daily, debilitating migraines. She told me that the Oxygen therapy has been the only thing that has managed to keep her migraines at bay.

There’s no other way to explain it other than it was like scuba diving on dry land. Having achieved my open water PADI licence years ago when I back-packed around Thailand, I remember that unnatural feeling of learning to breathe through your mouth to get oxygen. The Darth Vader heavy breathing, the irregular breaths taken and the slight feeling of claustrophobia all came back to me in that moment I was hooked up with a mask to the oxygen tubes.

An hour later of reading a good book that a friend had bought for me before I started chemo, I was done. I felt no different. Other than the clear indentations of the mask having sat on my face for all that time, there were no other signs that I’d just inhaled pure oxygen at the equivalent water depth of 33 ft. I had been breathing 100% oxygen in a chamber under pressure for one hour. Regular air has 21% oxygen. They explained that “when oxygen is given under pressure, the red blood cells carry the fullest amount of oxygen possible. Oxygen gives white blood cells the ability to kill bacteria better and increases certain antibiotics actions.”

I said my goodbyes and headed off home. I wasn’t due to go back until the following Saturday given the long waiting list they currently have. I was smart, I put my name down for any cancellations that may come up over the next month and got a cancellation slot on Wednesday! I’m supposed to try and have 3 hourly sessions a week for the next 8 weeks.

The other thing I have started taking is something called 2-Deoxy-D-glucose (2DG) which is a glucose molecule which has the 2-hydroxyl group replaced by hydrogen so that it cannot undergo further glycosis. Basically, in a nutshell, this is something I take in capsule form when I wake up and when I go to bed. It can efficiently slow cell growth and potently facilitate apoptosis (or death) in specific cancer cells. Death to the cancer cells!

I have also been asked to take a 500mg Berberine capsule 3 times a day before meals, except on the day of chemo and the day after. According to an online article on 6th Oct 2021 on https://www.canceractive.com/article/Berberine-as-a-cancer-treatment, it states:

“Berberine has been shown in research to work along a number of quite separate pathways against cancer; it reduces blood sugar levels, it reduces inflammation, boosts immune response and attacks certain pathogens; it blocks Akt and mTOR, while promoting AMPK and weakening the cancer cells, and acts as both a chemo-sensitiser and a radio-sensitiser.

Indeed, with some oncologists starting to use the diabetes drug metformin in the fight against cancer because it cuts blood sugar and also affects the mTOR pathway, it is important to note that the herb berberine does everything that metformin does, and more. Much more!” – interesting as one of the repurposed drugs I’m asking to be privately prescribed is indeed ‘metformin’.

I was encouraged to buy some very expensive looking sauna tents but queried these and ended up getting a £35 infrared lamp on amazon which, apparently, would do the same job for me – but just a whole load cheaper! The idea is that “whilst ordinary saunas heat the air to heat the body by sheer force, most of which bounces off the skin”…. FIR saunas or infrared lamps use their heat to beneficially “heat the deepest organs and tissues to soften, dissolve and remove deposits of deadly crystallized toxins and acid wastes”.

To help me sleep I have magesium and black cumin seed oil before bed as well as 30mg of a Melatonin supplement which equates to two drops per night. Interestingly, whilst I always turn my phone on to plane mode at night I’ve been advised to keep away from bright lights before bed because they can hinder the production of melatonin, a hormone that the body creates to facilitate sleep. I have to switch all electronics off 30-60 mins before bed and keep my phone and laptop in a different room to the one I sleep in as the blue light emitted may decrease melatonin production.

All of this is supposed to be the next stage in attacking what remains of my cancer and to enhance the effectiveness of the chemotherapy sessions. As I mentioned, most of these new things, I’ve only just started on and I still have the repurposed drugs to add at some point before I begin my new chemo. I supposed I could have done this earlier but I just couldn’t get an appointment back in August when I first contacted them.

Thank goodness I got in to see Cancer Options when I did. But, mostly thank goodness for Silvia, my functional nutritionist because the oncologist told us on Wednesday that the last MRI scan showed that the original mass actually measured 36mm and has now been reduced to 24mm. This, according to him, is a “better than average result”. The only extra thing to chemo I’ve done during this whole time has been diet wise and supported by her recommended complementary supplements. He went on to explain that he expects the reduction to continue along the same trajectory with the new chemo. What he doesn’t know is that, for the next lot of chemo, I plan to add all these extra therapies and treatments, which I hope will not only alleviate any side new effects but also help in the battle to zap this buggar once and for all!

My goal is to get it down to 12mm or less by the end of December – which I’d expect would happen now that I have added new weapons to my armour. I will still need surgery – a lumpectomy with all my lymph nodes by my right breast up to my collar bone removed – due for sometime in February. This will then be followed by radiotherapy a month later. The oncologist informed us that studies show that a lumpectomy followed by radiotherapy is as effective as a mastectomy but without the longer recovery and potentially less problems post surgery. So, realistically, I won’t be done with treatment until the end of Spring. Still a long way to go…

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“There are no wrinkles on a balloon”

…. as quoted by the lovely and extremely funny Steph. A few of us arranged an impromptu dinner out on Tuesday evening to meet up with our friend, Michelle, who had flown over with her family from Sweden for the half term. Steph ‘the oracle’, as we affectionately call her, knows many many things and is often heard quoting wise sayings. Tuesday evening’s enlightened statement was greeted with much laughter and gaffawing by our small table of middle aged ladies, as we sat in a crowded Turkish restaurant in Bromley, huddled over the food-ladened table, extolling the virtues of approaching 50. We had just been talking about my significant weight loss, 15kgs or (if you’re British) 2 stone 4lbs – since July!

Now, as much as dropping a few dress sizes might be many people’s dream, it comes with it’s downsides and this is how we came to hear Steph’s very sage remark – that “there are no wrinkles on a balloon”! I do understand that having chemo tends to dry out one’s skin quite significantly. But, with the changes in my diet and the lack of interest in food, plus the losing of bodily hair I’ve not just lost the weight, I’ve lost a lot of muscle and I’ve also lost collagen in my face. I have noticed many more wrinkles and lines appearing – not just in my face but on the skin on my thighs, tummy, bum and even calves and legs are significantly more wrinkly and saggy. Pure vanity, I know, but it’s another change that I’m having to get used to as I look in the mirror.

So, it was rather fortunate Smooth by Suz came to the rescue! Shameless plug for a good friend of mine but only shameless if it didn’t do what it says on the tin! I have always hated having facials. Historically I haven’t liked people seeing me without makeup and I’m not talking about the full monty – just a bit of concealer, mascara etc. I suffered from really bad spots as a teenager into my 20s and I’m not sure the worry and concern with a blemished complexion has ever left me. I don’t always want other people to see what lies beneath my makeup. There’s something quite vulnerable showing your ‘warts and all self’ to someone. But, needs must when your face and neck are dry and wrinkly and you are starting to look like an underfed turkey! Laugh as you may, I did when I wrote that. It’s true. That’s how I feel sometimes but Suzi gave me the most relaxing and aromatherapeutic – if that’s even a word? – experience through gentle facial massage, steam and exfoliation. She’s the consummate professional, incredibly knowledgeable about all things skin and you feel safe with her, knowing she also trained as a nurse.

Being touched is so personal but I have always loved and craved the feel of someone else’s gentle touch. It’s quite emotional writing this as it’s all so different now. People want to hug you but not touch you in that way. I haven’t been able to have a proper massage yet and people are more tentative around me. I also can’t have a head massage for fear of more hair coming out – and I love a head massage! I so needed this experience. The excuse to take some time out for me, however uncomfortable that sometimes feels to me. But with my skin feeling so soft, so moisturised and so rejuvenated afterwards, it made me think there are others who need this too. So, I’ve bought a few of my friend’s a voucher for ‘the facial experience’ with Suzi as November birthday presents! You’ll find out who you lucky ones are soon enough! Suzi is wonderful and it’s awakened a need for me to have this in my life on a more regular basis – especially if it’s not so easy to have a full body or head massage right now. I’m also going to try reflexology for the first time on Friday morning – thanks to my lovely Caroline – so watch this space.

Carol, also popped by for a flying visit and dropped me off a massive box of Christmas M&S advent beauty gifts! What a super treat! Can’t use the hair products but Ava wasn’t too upset to receive my unopened sloppy seconds – what lucky 12 year old wouldn’t be delighted?!! So many goodies and lovely creams to help restore my turkey skin to it’s more hydrated state. Loving them so far! My skin is loving them even more!

This week, is round 10 of Pacliataxel. I keep thinking – only 3 more left of this chemo. Mixed emotions as I approach the change over to the heavier dose of chemo come the end of November. Not much was scheduled for this week apart from my MRI scan with contrast on Monday but I received a call on Saturday to say the machine had broken and they’d need to reschedule. Blooming typical. Was waiting for an alternative day almost a week later and finally got the call to go in for 7:45am on Friday. At least I still have the PET scan results from last week to rejoice in!

It was the perfect excuse to celebrate with friends, after the wonderful news of last week. We were invited to a ‘much sought after’ friends’ Dia de los Muertos party last Friday night. Marie and Dom were such phenomenal hosts and put on a fantastic evening of food and entertainment. The party saw the coveted few who were invited, dress up in a range of Day of the Dead and Halloween-esque costumes! We haven’t attended a fancy dress party for literally years so we took great delight in getting stuck into the theme of the party and spent a good couple of hours applying makeup and jewels to look the part – love that my husband gets involved! It was so fun to laugh and sing – yes the karaoke came out! Surprised I didn’t turn into a pumpkin leaving in the early hours of the following morning! Although we were the first ones to leave, boy did I suffer for the rest of the weekend due to lack of sleep and eating a few things I probably shouldn’t have but hey ho!

Sunday chucked it down with torrential rain. Freddy was due to play in a tennis tournament and I had expected, or rather prayed, it would be cancelled but no such luck. Got the call that they’d be starting at 10, then 11 and then finally at 11:30, whilst parents and kids huddled under a small gazebo in the grounds of the girls school sheltering from the whipping rain, finally the courts were dry enough to start play.

I don’t really enjoy tennis tournaments, not because they take up most of the day or because it can be quite boring just waiting for the next match but mainly because Freddy gets so so emotional about his games that I’m often finding myself having to coach Fred through his overwhelming sadness or fiercely temperamental reaction at losing a game and losing points to his opponents. Now I do understand there are a few hormones flying around at 10 years old, even in boys, but he has always been like this. He has got better but he puts his heart and soul into his matches and literally chucks himself around the court to get every ball, I feel sorry for the little dude, but it makes for a hard watching as his mum.

I do feel putting Fred into these tournaments does have it’s merit though. It’s a very good way for him to learn how to handle losing more graciously and to learn strategies on how best to overcome disappointment. There are plenty in life, aren’t there? And, learning how best to handle one’s negative emotions is going to be a game changer as he heads in to his teenage years. Well, that’s what I hope for him anyway. Only time will tell…

By the time we returned home from the tournament it was nearly 3pm and I hadn’t had any lunch so, foolishly, I had a cold pressed vege juice that Hamish had prepared earlier for me and then knocked down the 7 supplements I’d missed over lunch! Cooked dinner, first real meal all day, ate it, took the remaining supplements before, during and after dinner and then the stomach pains started! The nausea was unbearable! Goodness gracious me! Took myself off to bed at 7pm and the kids had to come in to me for the first time and kiss me good night! It took a good couple of hours to subside. Note to self – stop trying to fit in all the supplements all at once. Need to manage them better and the timings or don’t take them at all. Fortunately, no repeats of my foolhardiness this week so far! Fingers crossed.

With the kids back at school, I was finally able to read through in more detail the notes from my Cancer Options meeting. I have ordered most of the new supplements and started booking in treatments to begin their “Prepare Phase”, “Kill Phase” and “Repair Phase” during chemotherapy. Whilst I await my new purchases, I spoke to the Swanley Hyperbaric Oxygen Centre who informed me that they now have a very long waiting list. My heart dropped and then my thoughts started, “why hadn’t I done anything about this sooner?” But, good news, I received a call back not so long after I filled out their form to assess me, letting me know that because I have cancer I need to go into a much higher pressurised chamber and they have a few spaces available on Saturday! Yay!!! So all booked and raring to go.

Recent research, according to my Cancer Options notes mention, “recent research is investigating the theory that low oxygen levels can be a mitigating factor in developing cancer and also in cancer metastasising” (i.e. spreading to other areas in the body). So the benefits of high oxygen levels in the body, as experienced in HBOT include:

  • “increases the speed of healing following treatment”
  • “helps reduce chemotherapy and radiotherapy resistance”
  • “useful in ridding the body of toxins”
  • “helps to transport nutrients to cells”
  • “alters the body’s PH levels producing an alkalysing effect on the tissues

The other thing one can do to get oxygen is to exercise as much as possible! I have to say I’ve been a bit slack, compared to what I was doing before my diagnosis. I’m only really doing about 20 mins 3 or 4 times a week so I need to get back on it. So, Wednesday morning I managed a work out with ‘my workout bestie’ Nompi – and we managed a 30 minute weighted abs and leg session. I’ve got no bum and no abs anymore so got to build back the muscle. I’m aching today and feeling that oh so familiar and welcoming pain you feel after a good workout! Bring it on!

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Things can only get better!

There’s a tune which I hear playing in the recesses of my mind – “things can only get better”. Well they certainly can indeed and they have….

It’s been another strange up and down week. Missing another week of chemo hasn’t been ideal, in that it is just prolonging the weeks of treatment but then, on the flip-side, it’s given me the time to have the PET scan that I so wanted to assess where I am in the programme.

This week I have found all the supplements I’m taking quite overwhelming, particularly the ones just after lunch time – I was taking about 7 different ones! I ended up feeling so nauseous on Sunday and Monday, when I went down to see my sister Alex and say goodbye to my mother, that I had to lie down both days and try and stop the cramping. Even the smells of the dinner I was cooking for the family were overpowering. Recognising this wasn’t good, I emailed my nutritionist and I ended up moving some of the supplements a couple of days later to different parts of the day, when I don’t have quite as many. The nausea has ceased and I’m back to managing things again. But, my goodness, there is so much information, so many ways to take them – on an empty stomach, just before a meal, after a meal, in between meals etc etc! It’s like having a full time job trying to keep on top of it all. I have resorted to compiling a word table document that charts my daily supplement information, the new upcoming therapies and several new supplements that I am about to embark on, for the month of November, as a result of hiring Cancer Options. My sister would be proud of me!!!

I’m still waiting to hear back from Cancer Options about the new therapies she’s recommended. The thing is there is this flash infra red sauna tent that she’s encouraging me to buy and they are both quite pricey so understanding the differences between them and how it is used is important. I have to source a repurposed drug which I’m speaking to my wonderful GP about but we may have to go down the private route instead. Doctors aren’t always allowed to prescribe a repurposed drug that is on the market used for some other illness. Cancer Options have also introduced a whole host of additional supplements that I have had to get my nutritionist to look at so we don’t overload me and that it works with everything else I’m taking and doing. This really is a full time job looking after myself! No idea how someone doing full time work would manage all this. Thank goodness I only have one coaching client at the moment!

It has felt a little scary introducing a new expert into the mix, adding all her recommendations. I’m afraid that if I don’t do precisely what is asked of me, to the letter, I may miss the opportunity to stop the cancer in its tracks. So I’ve tried to be quite strict with myself. And, the way this new expert presents things is not as clear as my nutritionist’s way, but she also isn’t as available as Silvia is to me, so I can’t just ask her things when I want to if I don’t understand things. It’s just occurred to me that when you add more people to your team and they haven’t worked with each other then there can be a mismatch and it’s important to marry the two so that the two can work symbiotically. So, it’s been hard trying to figure everything out. But, once again, my nutritionist has helped me decipher the information so I hope I’m a bit more confident with this new pathway now.

Tuesday was the one year anniversary of my father’s passing. I really can’t believe it’s been one year already. So much has happened which makes it feel much longer but then I remember, like it was yesterday, getting the call that Pappa had passed away in the early hours of that Monday morning in hospital. Then began the frantic running around to get flights out to see my mother, in Spain, and help organise the funeral in 48 hours (custom has it in Spain that it has to be done very quickly).

I received some very thoughtful flowers from my girls (Voirrey, Cato, Fi & Belle) and from my lovely friend Nicola – but as I opened them it didn’t feel real that this was a year ago and now all this cancer stuff… Our mother was flying back to Spain on Tuesday afternoon for a blood test scheduled for Wednesday morning. Not great timing but it allowed for me to drive down to Surrey on the Monday to see my sister Alex, with my friend Carol, the kids (still on half term!) and spend some last minute quality time with Mummy.

We had a lovely lunch and then had the pleasure of meeting a good friend of my sister’s, Hannah, who unfortunately knows all too well what breast cancer can do to someone. She’s been battling this since 2017 and is under the oncologist at the Royal Marsden that I saw – interestingly her recommendation. We got to share our stories and compare notes. I feel rather conscious monopolising the conversation when people ask about my cancer, especially when there are two of us in the room. I wonder how the rest of the people sitting round the table feel, to listen to two cancer patients going on about their diagnosis and treatments? I almost don’t want to bore them with our situation and feel the need to switch the conversation to more happier things but, I think, given the company – my mother and my sister predominantly – with kids flying in and out of the kitchen to chat and grab more food, it was obvious Hannah and I had a captive audience, eagerly wanting to know more about how to help and how best to support us.

Then, on Wednesday – which was a very busy day of tennis for Freddy, calls with Silvia, the nutritionist, my GP and my coaching client, I received a scheduled call from my oncologist wishing to talk me through my latest PET scan results….

Yippppeeeeee! I’m not sure I could have received better results but I was surprised by my initial emotions. They weren’t ones of happiness or celebration, I went into survival mode and starting asking a whole load of questions, wanting to understand every part of what he was telling me and what the plan was going forward. So, to the results….

The PET scan showed the size of my tumour in my breast has gone down from 45mm to 32mm. A PET scan measures the level of activity in the cells where there is cancer. Compared with normal cells, cancer cells are very active in using glucose, so a radiotracer made with glucose, which I was injected with before my body was scanned, will light up areas of cancer. So, apparently the hot spots have gone down significantly too – the area in my breast from 27.1 to 5.1 (a normal person’s reading is 2) and my lymph nodes were also 27.1 and now measure 2.2! Furthermore, the lung bit can’t be seen anymore! He went on to explain, we may never know if it was cancer or inflammation but it is no longer evident there. My MRI with contrast on 1st November will be more accurate in terms of sizing but he doesn’t expect it to show anything else other than it has reduced in size significantly. So, all in all very good news.

What do I glean from this? That the chemo treatment, alongside the fasting and supplements I’m taking are all working and making this ‘alien’ invading my body die. I’ve only just completed cycle 9 of pactliataxel, with 3 more to go and 8 weeks still of EC chemo to go – so I’m only just half way through all the chemo treatment before they decide what kind of surgery I have and radiotherapy.

The nice oncologist sort of caught me unawares when he brought up my wish to move to The Royal Marsden. Oh my goodness, I wasn’t sure if I was ready to have this conversation with him. My decision to change hospitals wasn’t anything down to what he had done and has been more to do with a whole host of experiences and behaviours from the nursing team but mainly to do with the awful radiologist doctor who wanted to right me off and believed the other areas in my body were definitely cancer. He made this assumption without doing any proper investigation or joining up of dots, which is why it was crazy that he chose to move me to stage IV, refer to me as “incurable” and told me he planned to cancel EC chemo and surgery because “what is the point on doing surgery when you are Stage IV”!! The ‘nice’ oncologist explained he’d support me in whatever decision I made regarding the move over but revealed the radiologist doctor is someone he can’t be sure that I won’t be able to circumvent completely, when it comes to radiotherapy time. He wants to avoid any time lapse between treatments and surgery that may happen as a result of me moving over. So, the fact that my having treatment is a time sensitive issue, given the cancer’s fast growing nature, he suggested moving across after surgery as it could be a few weeks before I begin radiotherapy.

Yesterday, I kind of skipped into chemotherapy with my good news! So, why all the sad eyes? The nurses’ mouths hidden behind masks but you can still make out their pitiful expressions. Little did I know they had been informed about my wishing to change hospitals. It then dawned on me they are unlikely to have been told about the details of my conversation with the patient liaison service (PALS) at the hospital and so they may have assumed that my choice to move was purely down to a lack of care by the nursing team.

No joke, as I sat in the waiting area to be brought into the chemo suite, I had 3 different nurses try to have a crack at some misguided humour, at my expense. All making some reference about me taking a trip or a holiday with my bags and ice cooler. If it was at all funny the very first time – it certainly wasn’t anymore. Then, as my nurse liaison approached and stood in front of me and quipped that all-too-familiar joke for the third time that morning, I had to tell her I didn’t find it funny at all. With her head dropped and eyes full of sadness and then just standing there, not saying anything, almost willing me to say something more – I wasn’t finding it easy to read what she expected of me….Finally I asked her, are you all right? And, she replied “you are thinking of leaving us for The Royal Marsden?” Then the penny dropped. There was an expectation for me to explain and to feed back to her. I wasn’t ready for that right that moment. Fleetingly, the thought about going into chemo late and having to prolong my stay at the hospital crossed my mind but I realised, this was my opportunity, whilst her ears were open and was willing to finally hear what I had been telling her each time as things happened to me, some whilst she was in the same room as me, so I followed her into a side office and calmly walked her through every event, every moment, every careless word, every poor communication that I have experienced since I came under their care.

I pointed out the irony that people actually pay me to coach them on how to deliver difficult communication and how to communicate better with clients and colleagues etc – this department needs a lot of training in how to communicate better. She agreed. This resulted in a big apology from her and complete understanding as to why I had put in the request. She then asked me if I’d consider joining their ‘support team’ for new patients – where new patients can speak to me and I can help prepare them for the treatment they are about to start on. Nothing would please me more. Most of us walk into this being whooshed in and we have little or no emotional or practical preparation ahead of time. I really feel I could help. I also offered to write up some key questions the nurses can ask their newly assigned patients before they come in for chemo so they can better prepare themselves for what to expect, how best to support them and the guidelines of what can and can’t come into the treatment suite! If I can help, even a little, I will.

But, nothing is going to take the smile off my face this week. The results are in, it’s good news – the cancer is reducing.

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Mummy comes to visit…

Today is Thursday and normally my Blog writing day. It’s also usually my chemo day but my PET scan – to measure the effectiveness of how the chemo treatment is working against my cancer – was booked for today and chemo was moved to this Friday. It was going to be the major step in helping me find out how I am actually doing. The way to compare and contrast my cancer across both scans from the very beginning to today and to find out if I really do have cancer in the lung after all!!! I have been sitting here, pretty much in the dark, for 10 weeks now waiting to find out what I am actually dealing with. I don’t even know my proper diagnosis for goodness sake! I’m so totally done with all the waiting!

The organisation that has gone in to today’s childcare arrangements and food preparation for the family and pre-arranged child care for my chemo treatment tomorrow – because H has to go up to London for work – has been full on. The reason being that for my PET scan, I am injected with a radioactive glucose substance that stays in my body for up to 8 hours and I’m not allowed to be near anyone under the age of 16! Bit tricky given my 10 and 12 year old are on half term! So, two of their friends’ lovely mothers offered to have Freddy and Ava for the whole day – and when I say the whole day, drop off was at 8:45am! And their kids are on half term too!!!! But, it’s all gone to pot! I got a call from St Mary’s in Sidcup at 8:20 this morning only to be told “the injection has failed” which means I can’t go in for my 9:30am scan. They said they’d call me back to see if the second batch at 11:30 was ok – but, no, today’s PET scan is cancelled and moved to tomorrow at 1pm! So chemo has to be cancelled this week and more childcare arrangements to be planned.

I should have just kept my chemo appointment for today. The treatment centre can’t fit me in today. I have been told they are “totally booked up” and there is a lot of sickness amongst the staff and they “are three nurses down”. I wonder if this is what I have to look forward to as we approach the winter months?

What with Covid and various cold viruses that are starting to raise their ugly heads as we head into the darker days of winter, it’s going to be a difficult road to navigate. One of my tennis friends, Sue, who has recently completed her chemo treatment and undergone surgery, very interestingly advised me to look into getting a possible 3rd dose of my vaccine as opposed to getting a ‘booster jab’ because our immune systems have been compromised. No one has told me this before but she mentioned a senior doctor at Guys & St Thomas’s suggested that it would be better for her to do that and recommended her getting a 3rd Pfizer vax and the booster in 6 months. I didn’t know they were different? I had the Astra Zeneca one so I need to do some investigation. Email sent off this morning!

At the same time it’s coming up to the one year anniversary of my father’s death next Tuesday. I can’t believe it’s been a year. My father never knew about my diagnosis, which is probably a good thing. There have been so many emotions surrounding my father’s passing. So much paperwork, so much to sort out – most of which my wonderful brother, James, has done having selflessly moved out to Spain to look after our mum. He has been looking after her by himself for nearly a year now – even he needs a break sometimes. So, our wonderful sister, Alex, managed to persuade my mother to get on a plane from Spain and come for a visit. As Mummy likes to remind us, she’s not seen her grandchildren for over 2 years! She got to see me in August, on my own, but ever since our father passed away I feel the need to cling on to my mother just a little bit tighter.

Organising this trip has been no mean feat given our mother has not travelled by plane, by herself, for at least 10 years! My father, when he was alive, would have organised everything and managed the whole process but, unfortunately not possible this time so, instead, my dear little sis arranged the whole thing – the special assistance, the plane ticket, all the masses of form filling in, the covid tests etc. So, last Wednesday, Mummy arrived relatively unscathed and then I picked her up from my sister’s to come stay with us on Sunday for a few days.

I’m so lucky I don’t just love my mum, I actually like her too. She’s always given so much of herself to others over the years, she’s good company and so appreciative of everything. I feel sad for those who haven’t got a good relationship with their mothers, it must be so hard and full of disappointments. I haven’t always been the best daughter but I made a promise to myself, after my father died, to be more attentive and give more of my time to my mother, as that’s what she really needs and wants more than anything else. So, Monday and Tuesday was spent hosting a small tea party and lunch for her which allowed a few of my friends, whom she hadn’t ever met and for whom she had been praying over the last 6 months to meet each other. My mother loves a social occasion but, at nearly 80, she does get quite tired. Nonetheless, I’ve been so grateful to have her stay with me, so grateful that my amazing friend Carol came to whisk the kids off for a night and take them to the New Forest so that I could entertain Mummy and organise a couple of gatherings for her. It’s just really obvious that we have to find a way of getting her house sold in Spain and bring her home next year. Time is precious and life is so short. We have some big decisions to make early next year so she doesn’t spend another Christmas away from us and that my little bro, James, can start living his life again to the full.

I have to say I have been a bit emotional this week. Don’t know if it’s my time of the month or what as I haven’t had a period in ages and, although I’m supposed to be pre-menopausal, chemo treatment apparently propels you through menopause in a matter of months – although I’m pretty sure I’m not there yet – despite the increasing prevalence of night sweats I’m experiencing. Anyway, I guess all this stuff does wear a person down over time but I felt very sorry for our lovely friend Lara, who we joined up in London on Saturday at The Railhouse Cafe in Victoria with a group of my oldest friends to celebrate her 50th. We were there for a good 5 hours – a lot shorter than perhaps in previous times (for various reasons) but throughout the course of the meal I dropped a few tears, then at one point three of our girlfriends were crying over the recent losses of their fathers. We’ve reached that age where, unfortunately, this is what many of us are having to deal with. Goodness knows what the twenty something nubile blondes thought of us on the table next door watching these middle aged, although fairly glamorous, women crying into their recently replenished glasses of rosé wine – popping up to the ladies, every now and again, to freshen up our makeup!

This week I finally got to speak to a knowledgeable lady, Patricia Peat of Cancer Options. She basically was an oncology nurse and then has spent the last 23 years researching and working in integrative oncology – an area that sadly England lags behind our European and US counterparts. According to her website, it states: “Patricia recognised that what people needed was access to quality, up-to-date information and research about all the latest and best approaches to the treatment and management of their illness so they could take charge of their cancer decisions – and reclaim their health choices for themselves.” She was recommended to me by our choir friend, who was also the one who introduced me to my functional nutritionist! It has taken me 3 whole months to get an appointment but on Monday the day finally arrived. And, I have to say it was a pretty good online meeting.

One and a half hours later, I had recruited another important member to my team. Her value is in her knowledge of the many other avenues to kill the type of breast cancer that is specific to me. Bottom line and possibly the best news I’ve heard in the whole time since I was diagnosed, she told me that she is “confident” that this can be fully treated. She was hesitant but seemed to have the courage of her conviction when she told me that she believed it’ll all be over in two years time! Then a small part of me disappointingly thought, “two years, I wanted this done in one!” – so I’m putting it out there in the universe!

Interesting things she told me included, “the size of the tumour is not so relevant but it’s more about how quickly the cells mutate and change”. She also said that “doctors go to the worst case scenario and rarely give much hope and positivity” – something I have already experienced, sadly. She went on to confirm that “lymphatics (lymph based cancer like mine) respond well to chemotherapy” – so I’m on the right treatment! Hallelujah! But, she was really confused why the doctors at all think the thing in my lung is cancer because she explained that “the first port of call for breast cancer to move to is the bones, not an organ”. So why do they think it’s cancer in my lung, if my original MRI shows no cancer in my bones? I’m having another MRI scan next week and she stated “bone mets (metastasis) will show up on an MRI”. It didn’t last time but it’ll be good to be sure – and this time I know to ask the question, being that more knowledgeable.

Patricia has agreed to work alongside my nutritionist and then offer an extra layer of treatment to get rid of the buggar once and for all. She completely agrees with all the fasting I’m doing, “fasting is one of the most effective and cheapest ways of starving cancer”. She is also going to recommend a re-purposed drug, some high dose Vitamin C and has advised me that treatment will need to be tailored to my bloods and my hormones as I go through each medical treatment phase – hence the need to work with Silvia on this.

The treatment she’s advised that has most excited me is HBOT – Hyperbaric Oxygen Therapy – which involves rocking up at one of the local Hyperbaric Oxygen centres that are apparently run by the MS society, half an hour’s drive from me, and sit for an hour receiving pressurised oxygen. Why? Apparently oxygen is a very powerful anti-inflammatory. She mentioned that “we need to make the remaining cancer cells vulnerable” for when I have the chemotherapy and “cancer doesn’t like oxidised environments”. She went on to explain, as part of her research into this treatment, she visited a centre in Istanbul where Stage IV cancer patients were receiving daily hyperbaric oxygen therapy and that these patients ended up going into remission 75% of the time! And, yet so few people in England with cancer seem to know about this therapy. It’s certainly never come up in any conversation with an NHS oncologist. Furthermore, for those of my friends who have had surgery recently, HBOT helps the healing process happen 3 times faster! So, my friend Holly – who was diagnosed with Transverse Myelitis earlier this year (which has similar symptoms to MS sufferers) has already spoken to her neurologist, who’s office is next door to the HBOT centre in Swanley, the closest one to me, and we are going to head there to hang out in the chamber and heal together – not the usual hang out for a 40 and 50 year old but with all the treatments she and I are undergoing, it’s nice to share the time with a friend and keep each other company along our journey of healing…..

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More Questions…

I’ve been thinking all week, am I going to have enough content to write another blog? I’m not sure what occurred this week makes for scintillating reading because there’s been no real drama, no results to speak of and, overall, it’s been a pretty ‘nice’ week with friends coming to visit and a 50th birthday night out, but – of course – there is always my mind which likes to question things, sow seeds of doubt and invite worry into my thoughts, so this week’s blog is really about the questions I want to share with you that have been playing on my mind….

Before I begin putting those questions to you, I should really begin with “the day after chemo” – last Friday. It was a pretty special day, I have to say! Katy Green came to visit me! For those of you who don’t know Katy – I was trying to explain to her how I would describe her to you all! Whilst she was one of the best bosses I ever had the pleasure of working with – nearly 20 years ago! Even though Katy began as my boss, she is now very much a dear, dear friend. A few of you will have been privy to the escapades we and a few of our PFJ Media friends got up to in the day! We don’t live very near one another and I think the last time we saw one another may well have been at our friend Bev’s wedding, four or so years ago now. Anyway, Katy drove an hour and a half to see me for the day and then drove home again! It was just like old times, chatting away and sharing stories but without the glass of wine in tow! The last time I had arranged to meet Katy, up in London, my father became suddenly very unwell and I had to cancel our catch up to fly out to Spain to look after him and my mother. Time flies so fast – such a cliché I know – but when you realise what’s actually happened over the last few years in everyone’s lives and, you take the time to understand someone else’s story properly, it becomes very clear that time ain’t gonna slow down for no one!

Katy departed and one of my closest friends, Cato or ‘Toe’ as we affectionately call her, trained all the way up from Somerset – just to see little old me!!! There was talk – from her – of going to stay in a B&B and just come up for one night so she could give me a hug and see for herself, how I was doing. Of course we weren’t going to let her stay in a B&B! If she was going to make the long journey by train and tube and then train down to Hayes in Bromley, then I was going to make the most of the short time we had with each other! Like Katy, Toe brought me some very thoughtful and lovely gifts! I swear I’ve never been so spoilt in all my life. I seem to receive kind presents on a weekly basis since I told people about my diagnosis. I honestly didn’t realise how much people cared. I feel very humbled.

Anyway, Toe and I stayed up until way past my bedtime, catching up and having lots of nice huggles. The human touch is so underrated. You don’t know how much you’ve missed someone until you get to give them a hug! We headed up to bed around 11:30pm. Late nights don’t tend to agree with me too well, in terms of the fatigue and nausea I seem to experience, so I can’t do them too often.

Seeing Katy and Cato made me realise that I have, inadvertently, been trying to hide away, just trying to get through the days. I sort of feel that I’ve been holding my breath under water, whilst treading water frantically, hoping that the next time I come up for air it’ll all be over – but that’s not realistic. There’s such a long road ahead and I have to learn to welcome people back into my life, try and be a bit more normal and try and encourage laughter back into the day to day. I haven’t had much of that. I just feel it can be so hard sometimes when the first thought I have when I wake up is ‘cancer’ and the last thought before I go to sleep!

So, Tuesday night I organised a good friend’s 50 birthday dinner at a local restaurant. Most of those whom we invited had joined my neighbour’s HITT zoom classes during lockdown 2020 – when we weren’t permitted to go to gyms and even allowed to exercise outdoors with more than one person at a time! Ez saved us during these rather difficult alcohol and chocolate tempting times – and boy does she make you work hard! It was the first night out in ages that I proper belly laughed, hardly thought about me and felt a bit more normal listening to the very funny and entertaining bunch of lovely people around me – especially our dear friend Caroline who has finally joined the 50 club!!

So, to the questions that have been plaguing me this week….

The big one is:

  • Do I change oncology teams? Do I go through the rigmarole of changing hospitals with the knowledge of the frequency of the upcoming treatments I’m likely to face? Timing is crucial here as, now having completed cycle 8 of my first lot of chemo, I only have 4 more before I begin the next lot of treatment – fortnightly EC chemo. Should I do that where I currently am or move hospitals? If I move then I only have 1 month to get all the paperwork and new team in place, if I am to avoid any lengthy transfer over!!

The answer to that really lies in how my GP answers my telephone questions tomorrow morning. I don’t know, given the Marsden sits outside my hospital area, if she can indeed set up the funding to send me there as an NHS patient – which in essence would be taking the funding out of my local area. I know as an NHS patient there is always the risk of not seeing the original oncologist you first saw and thereby getting disappointed with any future oncologist you meet – like I have. Also, you are forever waiting for appointments, for your turn, for results, which do have a tendency to take a bit longer than private patient care. But, after today’s chemo session again, and a few carefully worded questions around radiotherapy, I think I’m going to take the plunge. What was putting me off was the frequency with which I’ll have to travel to have radiotherapy, after surgery, possibly daily for 4-6 weeks. Going to The Royal Marsden daily for that length of time could be trying, especially as much of it will be in the dark. Travelling to the RM would add an extra 20- 30 mins onto an already 20 min journey that I currently take being driven to my local hospital – and that’s just one way!

So, next question, I’ve got another PET Scan and an MRI with contrast scan booked in for 21st Oct and 1st Nov respectively – to measure the effectiveness of the chemo (and, not that they’ll admit it, how my change of diet and supporting supplements may have helped?) Unfortunately they can’t get me an earlier MRI scan ahead of the booked oncologist call I have on 27th Oct so have to book in another oncologist meeting for after 1st November, where I hope to receive proper consultation of where I am at, if the lung thing is cancer, what my treatment will be going forward and what my prognosis is? More blooming waiting!!

  • My question, having read a lot of negative talk around these sorts of scans, (particularly the PET scan where you are injected with a radioactive substance to measure the ‘hotness’ areas in your body where there is likely to be cancer) – how do I prepare my body for the upcoming scans to avoid any ‘fall-out’ from the contrast and the radioactive dye they are injecting me with?

I won’t be allowed to be near my kids for up to 8 hours after I’m injected as it won’t be safe for their little bodies – no easy task given it’s half term!

I think I may have to save that one for the meeting with my functional nutritionist this coming Monday!

Another one for my functional nutritionist is:

  • Should I add more Modified Citrus Pectin in to my diet ahead of my scans?

Modified Citrus Pectin is obtained from the peel and pulp of citrus fruits. Natural pectin is a sugary carbohydrate found in ripe fruits. Modified pectin is a powder you buy from a health food shop or pharmacy. It’s taken as a supplement to reduce tumour growth and used in breast cancer therapy to prevent the spread of cancer to other organs – otherwise called metastasis. I was advised to up my dosage around surgery and biospy dates.

  • Next question: Should I agree to having the heavy dose EC Chemotherapy and radiotherapy after surgery, or is there an alternative?

I have recently read in one of Jane McLelland’s facebook posts from 7th April entitled: “The problem of cancer Recurrence” that:

“In the human body, there are healthy stem cells that help repair and regenerate damaged tissues. Similarly, in tumors, there are cancer stem cells (CSCs) that help repair and regenerate tumors. This subset of cancer cells is also known as tumor-survival cells (TSCs) or tumor-initiating cells (TICs). Cancer stem cells are drug-resistant and remain after each round of chemotherapy to repopulate the tumor with new cancer cells.

Many experts believe that successful eradication of cancer stem cells could change the face of cancer treatment. Not only are cancer stem cells a chief driver of treatment failure, cancer progression, metastasis, and recurrence (often more aggressive), but cancer stem cells may also be the root cause of the original tumor itself. Because of the powerful survival mechanisms of cancer stem cells, chemotherapy, radiation, and surgery are unable to kill them. In fact, conventional therapy may do the opposite and stimulate the proliferation and virulence of cancer stem cells.”

So, if that’s true. Should I even be doing this stronger form of chemo and radiation? Or, is the other question, should I be introducing High Dose IV vitamin C during the EC chemo timeline?

Apparently, according to a Jim Farver on one of JM’s facebook posts he writes, “High Dose IV vitamin C helps to detox from the chemo enzyme. In fact, intravenous vitamin C has been shown to target the mitochondria in cancer stem cells, the original cancer cells that are responsible for chemo and radiotherapy resistance, because it stops a key step in the process of glycolysis; effectively starving the cancer as well as triggering apoptosis or cell death. It helps block off one of cancer’s main energy supply lines”. Low doses are however to be avoided. He goes on to say “on its own, intravenous vitamin C is 10 times more lethal to cancer stem cells than chemotherapy”. Mr Farver says, when you “combine “doxycycline with the intravenous vitamin c, the synergy multiplied to being 100 times more effective”.

So, again, all in the timing, I have a meeting with a cancer company, ‘Cancer Options’, on Tuesday – it took me 3 months to get on their books to speak to them. They have been recommended to me by a knowledgeable friend. This company apparently has access to global clinical trials, complementary treatments such as the IV vitamin C infusions, HBOT – hyperbaric oxygen tank chamber therapy etc so will be taking the opportunity to ask about this.

So questions over for now, I bring you back to today, chemo day, cycle 8. Just 4 more left before the new lot of chemo. I arrive at the chemo unit half an hour earlier, hoping to get in quicker. No such luck. I was waiting for over 1.5 hours before I was brought in and shown to my chair. Just before I walked in, with my 3 bags, I receive a ‘withheld number’ call on my mobile telling me they work for AIG. Confused, I ask them what it’s about and he tells me “it’s about your life insurance policy”. Even more confused now, I wasn’t aware I had one and only went on to ask him because Hamish used to work for AIG a while back, “if this was actually an old policy?” “Oh no”, he answers. “You don’t have one, but I’d like to tell you about it”. Stupidly, I joke, “no one’s going to touch me now with a barge pole given I’ve got breast cancer and going through chemo!!” But, he responds, “depends how old you are?” I end up telling him I’m 50 and he says you’ll be find and then proceeds to go into his big sales pitch. I try to cut him off by telling him I’m just about to go into chemo and to send me an email with details to speak to my husband as he already works in life insurance and the man only goes and hangs up on me off! Well, it certainly rattled me just before walking into therapy. What are the chances of getting a salesman trying to sell me life insurance just before heading into chemo! Stupid man!

And then, one of the nurses, walks out of the chemo unit, looking at my bags and slowly walking passed me, smiling behind her mask, “Cecilia, are you planning on taking a holiday?” Well done nurse! You’re so funny – Not!

Anyway, another big week next week, kids on half term; my mum flies over from Spain for a visit – finally! I have another 50th birthday lunch and the meetings with the functional nutritionist, Cancer Options and my PET scan all going on! It’s going to be interesting. Never a dull moment in this house!

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The lung biopsy results…

Although this week has been so so much better in terms of how I’ve felt, both mentally and physically, it seems as though I’ve been waiting for this week for months and it is still only Wednesday!

Last Friday we went out for Hamish’s birthday meal. All dressed up in my new green frock and my smart brown riding knee high boots – whilst I may, in part, have looked a bit like “an early for the party” Christmas tree – I felt a million dollars and was so looking forward to our night out and a bit of time out from the gruelling diet regime. Our lovely friend Linda came to sit with our kids whilst we went out – we weren’t late but a night out and a glass of nice red wine certainly was what the doctor ordered, in this case.

I woke up with a new energy, bit of a sore head – not having shared a bottle of wine in quite some time – but was ready to cope with getting back in the saddle and cooking up a new batch of healthy meals for the week. Another friend has kindly lent me a couple of the “Deliciously Ella” recipe books so I set to work on making Hamish a gluten free, sugar free, dairy free chocolate birthday cake – with avocados I have you know!!!! Didn’t taste too bad either. My greatest creation however was a mushroom risotto with organic coconut cream! Divine! Will be making that for my friend and old boss Greeny (not so old really!!!) who is venturing across several counties this Friday to visit me!

Saturday saw the heavens open and had me confined to the indoors – ideal for batch cooking and an afternoon visit from some more lovely friends for a natter, a cup of tea and sampling my recent avocado chocolate cake! There is no better medicine than friends! Saturday was also momentous in that it was also the day we got a call from a Dad friend who had spotted a short queue at a local petrol station, whilst he was collecting McDonalds for 8 hungry and raucous girls celebrating his daughter’s 12 birthday – our daughter included! Having done a similar sleepover not so long ago, I knew what the night had in stall for him but the call was gratefully received and so perfectly timed – so off Hamish went and 30 mins later we had a car with a full tank of petrol parked on our driveway!

It never ceases to amaze me, again, the selfless acts of kindness people are prepared to undertake to help others, or more specifically – me! After last week’s post, I was contacted by a thoughtful mum of an old school friend of Ava’s offering a 5L jerry can of petrol, with no expectation of payment. Then, I had others offering petrol from their daughters’ cars and even a good friend, Elle, who knows the chap managing the forecourt of a local petrol station who she reckoned she could persuade to fill up a jerry can for me, given the emergency situation I found myself in! I had our lovely friend, Holly, offer to go out on her bicycle to fill up a jerry can – no mean feat given she has her own mobility challenges! I even had my wonderful mother-in-law, Fran, over in NZ putting out a facebook post to my local friends suggesting they might want to donate a litre of petrol to help me get to my appointments! Well, the universe certainly heard everyone’s thoughts and offerings and only hours later our wish for fuel was granted!

So, all stocked up, I was ready to start preparing for the week ahead. I have sort of taken my foot off the pedal, with the up and coming lung biopsy results hanging round my neck like an annoying albatross, but I need to stay ahead of the curve and so I have to continue reading around the ‘cancer’ subject. The other day, I came across a podcast featuring a Dr Nasha Winters on the subject of “how fasting has helped people with cancer”. Essentially she talks about how fasting for 13 hours or more each day apparently helps people recover much faster after an infusion of chemo – which supports what my nutritionist has advised – i.e. keeping calories low to about 500 cals on the day before and the day of chemo respectively – and lowering carbs specifically. Dr Nasha is bold enough to say that she believes fasting also keeps cancer from re-occurring! Unfortunately, many of us know of someone who has had cancer and then experienced a re-occurrence of it. It’s one of the taboo subjects amongst cancer patients but if more people who have had cancer knew that fasting can have such beneficial results, wouldn’t more people do it?? It’s so simple but she claims that 95% of her patients can’t do daily 13 hours of fasting – snacking gets in the way. The late night munchies or the inability to skip breakfast. Fasting has so many benefits, I have heard this lots of times, but Dr Nasha goes into a little more detail and encourages everyone to fast, as a matter of course. She actually advocates that people should fast 16-18 hours twice a week and, for those of us with cancer, an auto-immune disease, chronic illness or cardiovascular disease, we should try to work towards a 3-5 water day fast one a month for up to 6 months after chemo. That seems quite difficult for me but, you know what- I’m going to try.

This week was also the week that three of my friends had operations – one who had just completed her 6 months of chemo and had a breast op, another dear friend who has battled with rheumatoid arthritis since she was 18 went in to have a second foot op to realign the bones in her left foot and my best friend’s mother in law – a lovely lady who has completed her 3rd round of chemotherapy and went in for a further breast op. They’ve all been on my mind. Operations can be such scary things. There are so many of us working through daily challenges that can significantly change our lives. Your bravery, ladies, speaks volumes.

On the upside, I got to meet 7 very cute french bulldog puppies this week when I met up with a couple of my girlfriends for a cup of tea. I have only had one other friend who has bred puppies. It’s a full time job and very time-consuming. I haven’t seen my friend for a couple of months now, she’s had to postpone an important operation herself so that she can tend to these dog babies – having to set an alarm to feed them every two hours in the early days they were given birth to! I’m not a big animal person but these puppies are some of the cutest I’ve ever had the pleasure to cuddle! She still has a few more left to sell!!!

And so, we come to the results….. Following our successful meeting on Tuesday at The Royal Marsden, with the Head of the Breast Cancer unit, he confirmed that the treatment I’m on is the correct one, so we were able to breathe a little sigh of relief. He also mentioned, should we move across to him from where we are currently, he would continue to treat me even if the results on the lung biopsy were to show cancer there too. He explained that because I’m HER2 -, as opposed to +, that the chemo will never completely eradicate the cancer in my breast and so surgery and radiotherapy will need to follow chemo. I will probably also need hormone therapy and inhibitor pills to stop the cancer growing any further.

Very interestingly, though, he identified that the ‘hotness’ in the groin area of my PET scan was most likely to do with thyroid activity due to the jelly fish sting I had received the day before I left Spain, back in August, when I went to visit my mother and brother! When we started talking about the anomaly in the groin area, looking confused, he asked me if I had been bitten or been stung? My immediate thought was “had I been stung by a bee?” but I hadn’t and then it occurred to me, “would a jelly fish sting be relevant?” Turns out ‘yes’ it would produce the same type of heat and ‘hot’ activity that showed up on the scan all the way back in August before I started treatment. A normal reading of hotness is in the region of ‘2’. The results from my first PET scan showed that the activity in my right breast measured about ’20’, my lymph nodes ’30’ but the groin area measured ‘8’ and the lung, whilst smaller, measured ‘13.9’. So, all much higher than the normal ‘2’. Although very grateful that the results in the groin showed ‘no cancer’ why had it taken until now to identify the likelihood of the groin activity to be down to a jelly fish sting rather than “more cancer”? A sting that I had disclosed to them several times during the first days of treatment, which I know they had made a note of – especially given the steroid cream they had to prescribe for me because of the reaction I had as a result of my first chemo infusion – see photo!! Annoying and fascinating at the same time!

We waited all day Wednesday, what seemed like an eternity for me, to go in for bloods at 16:30 which was to be followed by the face to face oncologist meeting to discuss the results of my lung biopsy. This time we met with the first doctor. He had been on holiday for our last couple of appointments so we had had the pleasure, or not such pleasure, of a different oncologist previously. The doctor we met this week was kind, patient and optimistic but, we have already learned that due to the NHS being so stretched, you can never be sure which doctor or nurse you’ll see. And, as we have already found out, they can vary so vastly in their approaches and bed side manner that it feels a bit like a lucky dip each time.

So we arrived at the hospital in good time. Ironically, you can normally wait quite a while before your name gets shouted out for your appointment but this time I got called almost immediately. Grateful that the wait was over, it did occur to me “would this be a problem my going in for my oncologist meeting before my bloods given my bloods appointment was scheduled 15 mins before my meeting with the oncologist?” Surely not? So, we packed up our bags and in we went to join the doctor in his room.

The sum of it is that the lung biopsy results remain “inconclusive”. It is not clear if it is “inconclusive” because it’s such a small area to get a sample from or if the sample was indeed big enough to analyse effectively? What he did say was that the bit they analysed, they couldn’t find any cancer cells but it’s not 100% not cancer. The only way they’ll know this is if the area in the lung is reducing, due to the chemo, in the same way the breast cancer will be reducing. If the mass stays the same size and the breast cancer continues to diminish then it may not be cancer but we will only find this out after another PET scan and MRI which will happen in the next couple of weeks.

So, there we were sitting in the consultant’s room, talking to the oncologist and discussing options for me and, all of a sudden, my apple watch and phone start buzzing incessantly. Embarrassed, I sneak a glance at my watch and notice it was the hospital calling me! I mention this to the doctor who swats his hand in the air dismissing the call. He’s the boss after all! Why were they calling me, now? Surely they were aware that I was in with the oncologist and they weren’t actually chasing me for the bloods appointment that I was now 20 mins late for! Surely, the receptionist would tell them that I’d gone in to the oncologist meeting before my bloods? It’s the same reception for both areas, same floor and they are literally rooms next door to one another! Nope – despite my calling ahead to confirm whether it was, indeed, ok for them to have booked me appointments 15 mins apart from one another. The answer was ‘yes’, all fine but upon leaving the oncologist’s room I was greeted with a concerned and slightly frantic buzz of nurses worried that I hadn’t attended my bloods appointment. One of the nurses checking me in, gave me the impression she wasn’t best pleased with the fact that I wasn’t where I said I was going to be. I couldn’t resist and probably didn’t help myself when I sarcastically replied, “I did call ahead to confirm that the 2 appointments could go ahead so close to together in time and it’s not my fault that you don’t communicate between departments, despite the regular need to work together on patients!”

Anyway, this recent annoyance didn’t do anything to reduce my mini celebratory feeling following the lung biopsy results. The doctor said he would continue treating me as though I can by ‘cured’ and so all the previous chemo and surgery and radiotherapy is back on the table and will recommence straight after my last round of Pacliataxel, mid November – so no gaps – health permitting of course. He did mention that this next round of chemotherapy, the EC chemotherapy, is potent stuff and will more than likely knock me for six and whilst, Pacliataxel is known to “thin hair”, EC chemo pretty much sees to the rest! So, I had better get on with this wig order!! I will also need hormone treatment and possible inhibitor medicine to prevent the cancer from spreading and growing any further so it’s a long road ahead but I’m one step closer…..

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Hit for 6….

I’m half way through Pacliataxel – 6 cycles down – but this week a switch flicked within in me and I came crumbling down.

Waking up on Sunday morning, with not much to look forward to, days drawing in and no let up in my supplements and treatment, it dawned on me – it’s been a whole 3 months since I found the lump in my right breast. So much has happened, so much of my world has been turned upside down and yet I’m no where near finished treatment. There is such a long road ahead and I still don’t know what I’m truly dealing with.

I don’t think I’ve had one of those days where you properly cry over everything since it all began, back at the end of June. I have felt so tired, I have felt beaten and so I crumbled. The flood gates opened and the tears poured forth for two days. My poor family.

I don’t do feeling sorry for myself well. I don’t find it helpful, there are many others worse off than I am. I’m “Mummy”, I’m “a wife”, I’m the one who looks after people. I mustn’t break. But the combination of the stupid fuel panic buying that has hit the British nation almost overnight, my countless daily supplements that I have to take several times a day – some on an empty stomach and some with food – every blooming day and the endless juicing and focus on diet that I have to adhere to just to minimise the many side effects of chemo and the prevention of cancer growth elsewhere in my body, is exhausting. On Sunday, it hit me like a brick. If this was a comic book, there would be some onomatopoeic word I’d insert in here like “THUD” or “SMACK” or “CRASH” etc. Well, “THUMP” I smacked into that wall of reality and I came crashing down.

I usually have so much energy but the fatigue keeps chasing me now during the day. I can’t really run anymore, I’m not allowed to play tennis and then when the 40 minute round trip of having to walk Freddy to school there and back twice a day (because we have only half a tank of petrol which we have to save for my chemo and bloods hospital appointments each week) exhausts me to the point where I’m not much use to anyone – I feel broken.

This fuel situation is just silly. Haven’t we learned as human beings during covid that loo roll isn’t going to run out, nor is pasta etc. Same with fuel?! All it’s served to do is create a right old mess for those of us who really need the fuel. The poor care workers, the school teachers, the doctors and nurses. If we just took what we needed rather than filling up to the brim, there’d have been enough for everyone! All it’s done is created never ending queues of cars, blocking the roads to school, work and hospital, lots of arguing on the forecourts and poor behaviour. Of course, many of our lovely friends have offered to take me to hospital, collect Freddy and bring Ava back from her dance classes but it shouldn’t have to be that way. I have had to say yes to help where I can but I find it hard being reliant on others. This is a special thank you to those of you, especially this week, who have given your time, petrol, collected my kids, made food and persisted with me – despite me saying that I’ll be fine – I honestly couldn’t have done this week without you!

I continue to lose my hair on a daily basis – so I have finally succumbed to a wig appointment which I had this morning before chemo. I also have had the biggest spot on my cheek since Monday (hmmm attractive!!) and I’ve lost so much weight that some of my jeans don’t even stay up. The area in my right breast where the cancer is has started to feel a bit uncomfortable and sore and makes sleeping painful at times – which again, I’m not sure is because I’ve lost some of the fleshiness of my boobs due to weight loss – that I can now feel it more? Something I need to ask my doctors about.

The image I’ve used this week for my blog, was my first laugh out loud moment – there haven’t been many I’m afraid. This was the picture that my wig consultant sent to me to show me the kind of wig that was the closest colour to my real hair. I have to say I was a little shocked when she whatsapp’d it to me and then I had to laugh out loud! Then the lovely wig lady, who zoomed me this morning, asked what I thought and I had to tell her that I felt the image was “a little scary”. She’s going to try and find me something a bit more natural but I have to wait 4-5 weeks for it to be made because I’m choosing human hair – I only have 6-7 weeks left of this chemo! Hope the hair I’ve got left decides to stay put for as long as possible!

I have also been waiting for the lung biopsy results all this week and yesterday – Wednesday – was the day they were supposed to call me to give me the results. But, after a night of poor sleep and chronic upset tummy, I woke to find I had no energy, I couldn’t bring myself to eat, nor take any supplements and then to top it all off, the nurse called to cancel my telephone call with the oncologist in the hope they may be in by next week’s chemo session! It’s so frustrating!

On top of all the emotions this week, I have been floored by nausea and tummy upsets for days. I have had too many episodes to count but fortunately I haven’t been sick. I haven’t been able to eat much and I’m still battling with some of the supplements so I made a call to knock the supplements on the head for a couple of days and try and eat something. I don’t think I’ve felt this bad in years! The nausea and trips to the loo have been completely debilitating.

I held off enough for Hamish and I to be able to meet Ava’s Y7 teachers in a private 121 on Wednesday afternoon and then get to the hospital for my bloods and PICC line maintenance. But, last night, I had to take myself to bed at 8pm – well before the kids went down! Hamish was on a 2 hour work call – I think the kids thought whoop whoop “we can have as much screen time as we like!!” I don’t want to share too much information but let’s just say I had to get the towels out on the mattress, just in case. Having woken myself up twice before 10pm and changed pajamas, enough was enough, I had to get downstairs and find some unhealthy, salty, white, gluten-filled wheat crackers to just stem this blooming sickness! 6 crackers later and a couple of glasses of water, I returned to bed with no further incidents. Thank God!

Hamish was up early this morning – it should have been me! It’s his birthday and we always prepare the breakfast table for the birthday person with all their cards and presents and try and make a bit of a fuss of them. It’s been harder this year to do special things for Hame, particularly given my demise this week and general lack of energy and imagination. He really is the most understanding and wonderful man there is! He told me all he wants for his birthday is for me “just to feel and be better” – so I got him cinema tickets to go see the new James Bond movie – my very own 007.

So, this morning – chemo day – not sure how I was going to feel, Hame walked Freddy to school again. We still have not been able to fill up on petrol. I then got myself ready for my wig consultation at 9:30, which was already going to be tight given my chemo was booked for 10:30. We were caught in traffic on the way to hospital because two of the gas stations en route were back selling petrol which explained the inevitable queues. Late arriving for my chemo, I was ushered into a room to have my temperature taken and to ask me the usual questions around how I’d been feeling this week. So, after an examination and an ‘interview’ from the Head Nurse about my symptoms, it was decided not to proceed with chemo.

I have to say I met this news with mixed emotions. Disappointed because it means my end date for this lot of chemo is now having to be extended but pleased, also, because I wasn’t sure how I’d fair going into round 7 of chemo not firing on all cylinders. It is probably good to have a bit of time out to recover and it may mean I will get to enjoy Hamish’s birthday meal out tomorrow night – wearing my new dress and boots. I have already decided I’m going to eat whatever I want. I’ve not felt like eating anything much all week so, tomorrow, could be the lift I need to get me over this horrid week.

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Birthdays and Biopsies…

Another busy week folks! September is always a hectic month for me. I have so many birthdays in this month it’s just crazy. Must have been the best way to keep warm in January at one time or another – clearly!!! So we had our daughter’s 12th birthday and my mother’s 79th birthday on 20th September – they very sweetly share the same birthday. I also had one of my dearest friend’s 40th birthday and my god-daughter Livi’s 13th birthday on 16th September – they too share a birthday – and I have my husband’s 45th coming up at the end of the month!

So, the weekend kicked off with 7 squealing, excitable pre-teen girls who rocked up for Ava’s 12th birthday sleepover extravaganza in this wonderful Bell Tent! Gorgeous as they all are, and even though the girls slept outside, I won’t be repeating that size of sleepover anytime soon! The amount of sugar and pizza they consumed was phenomenal and, on top of their midnight sweet feast and attempt at ‘ pulling an all-nighter’, I was a bad mother and returned them to their parents, in the morning, having added to their already high sugar levels by feeding them toasted waffles and warmed croissants with nutella and Biscoff for breakfast!

This week, I have been a little more tired and my hair continues to fall out every day but I have been given a silk pillow slip and a silk hairband that have been game changers in reducing the amount of hair that I find on the surface of my pillow each morning and when I take my hair band out at the end of the day. These thoughtful friends continue to surprise me with their helpful acts of kindness. I had never known the benefits of silk on hair and skin! I wish I had known about it before – better late than never! Or should that be – better hair thinning than actually bald??!! No worries, I’m prepared for that too – another lovely friend sent me some silk scarves should I need to cover up eventually.

We also had our new bedroom curtains hung by our lovely curtain maker! I’m so glad I found her! She’s so talented, so kind and she brought us the most beautifully made curtains – sewn by her own fair hands – and they are interlined and blackout which means more sleep for me!!!

This week, I have only had to go to the hospital three times. Monday was an hour’s meeting with a nurse in the radiology department who gave me the low down on what to expect from my lung biopsy on Thursday. I knew they wanted to take bloods from me and a new swab test and I was keen to NOT have to repeat that for the chemo team on Friday. I was very aware that if I didn’t manage them and encourage them to talk to one another, I would be expected to come back in to give bloods twice! Now that I have the PICC line, the bloods aren’t a problem but the swab test is a completely different matter and I’m never going to get used to having someone literally shove a cotton swab up my nose every month to prove I don’t have Covid. Fortunately, this time, we agreed to have my bloods done on the morning of the biopsy on Thursday. I still had to walk down a floor to the chemo suite, after the biopsy, to chase them for my blood results to confirm that my counts were at the right level for chemo the following day. Looks like my neutrophils have gone up only 0.1 but they are still up from last week! Suzie, my “blood scientist nerd” friend (her suggestion, not mine!) took a look at my blood results and she noted my “MCV is good which means I am not becoming iron deficient”. She noted, “they look great C. Absolutely nothing to worry about and the neutrophils are still good. When platelets drop to like 20 that’s when you worry”. Mine are currently 304 down from 335 last week – so still doing well! She even went on to compliment me, “you are a golden girl with those results. Even liver enzymes are good” – I can assure you before all this that may not have been the case! So I’ll take that thanks very much.

I have been dreading and looking forward to this week – what seems like for ages – well ever since the oncologist told me that the masses in my groin and in my lung are “most likely to be cancer” and then even more so since the groin biopsy results confirmed that it wasn’t cancer! So what of the lung mass? Good things come to those who wait, they say – well not sure about the ‘good’ but I can certainly attest to the fact that waiting is long and boring and when the day finally arrives, you greet it with a mix of relief and apprehension.

Hamish dropped me off at the hospital for the biopsy at just gone 8am. The traffic was, of course, bad and he had to rush back to get Freddy to school in time. I walked in to the radiology department with a heavy shoulder bag containing the things I predicted I’d need to last me for several hours. I know this part of the hospital now, like the back of my hand. Who would have guessed I needed a map and verbal directions only 7 weeks ago – when all the scans and treatments first started?!!

I was instructed to be nil by mouth from midnight on Wednesday, including water. I knew it was important to have my Citrus Pectin powder because of the trauma involved in having a biopsy so it was fortunate they gave me permission to sip water with my medicine and supplements in the morning, including mixing the Pectin in a small glass of water.

I can’t eat anything from the hospital canteen anyway but it was also tricky because my nutritionist suggested I ‘fast mimic’ on biopsy day (taking only 500 calories) recommending that I increase my protein and reduce carbs significantly to help with the trauma of the biopsy and chemo the following day. So, the best I could come up with was packing the veggie juice that Hamish had made for me and a handful of nuts. I had been informed that although I was to be prepped first thing, including bloods to be taken, the doctor may not be ready to complete the procedure straight away and to prepare myself to be there all day.

I was shown to a side room off the early morning deserted corridor of the radiology department, where I was asked by a nurse to strip down to my knickers and slip on a hospital gown – the ones where they tie up at the back – and some red non-slip socks – hmmm ‘nice’ I hear you say! It was blooming freezing in that room, possibly because of all the CT scanning equipment. I felt my ‘nervous wees’ come on so I took myself off to find a suitable ladies room. But, Doris me, took the scenic route round the floor, past the visitors waiting in reception – who had the charming view of my knickers and back on show! Amazing what doesn’t make me feel embarrassed anymore!

Mission accomplished, I returned to the room and was then taken through, step by step, what was going to happen to me. The nurse informed me that I was going to have a “CT guided biopsy of the right lung” because this was going to be the safest way to guide the clinician who was taking a sample of the mass. Apparently it is the most accurate way to identify its position. Naturally, the assigned radiology nurse needed to share the list of potential consequences that could occur but I quickly put them to the back of my mind. The focus had to be on getting through this carefully and for there to be enough of a viable sample taken so they could send it away for analysis.

Even though it was early and I had been advised I was going to be there most of the day, I was surprised by the energy of the department and the sense of urgency to get things done quickly. What was the rush, I wondered? It was only later on after my procedure, returning to my room shared with one other patient separated by just a blue hospital curtain, that I realised how very busy this department can be. By 10:30am every bay in the corridor was filled with patients – some conscious, some not – in either movable hospital beds or wheelchairs. Seemed I got the VIP treatment because I was deemed more vulnerable than the others because of my chemo! Every cloud and all that…..

Around 09:10 I was whipped off to the CT scan room where I was positioned on a long tray, with a role of paper separating my back and the tray and a pillow for comfort. Then that’s when all the noise started. I noticed the lights of the bright, white room, the whirring of the machines in the room, the chatter of the 4 or so nurses and the Head Clinician who was going to perform the lung biopsy. I was obviously there, along for the ride, with all the medical staff busily doing what they needed to do. Even though they had explained what was going to happen, and I’ve had two biopsies before, I have never had one in the lung before. The position of the mass was in my chest area to the centre right of my breast. I was scared and I didn’t want to show it. No one likes pain and I can cope but it’s difficult to know how much you can take and worried that I didn’t want to come across as a moaner.

They asked me to take off my necklace – the one Hamish got for me for our 10th wedding anniversary this year and I never take off! I became fixated on the necklace and where it had gone and that I had to remember to get it back off them before I left the room. Whilst I was making this mental note to myself, the Clinician walked over to where I was laying on the tray, leaned over me and explained he was going to try to get three samples, in the hope that at least one would be suitable for analysis. All the while being reminded that I should lie as still as possible during the procedure and try not to breathe too rapidly – all a bit tricky for someone who was feeling a bit frightened. It was going to take 1/2 an hour to complete. I think I would have easily won a game of ‘sleeping lions’! I didn’t move an iota in the whole of that 30 mins. I was glued to the spot and I made sure to breathe slowly and regularly. There’s not a lot of flesh in the centre of my chest, especially when lying down, so I was worried this was going to be a bit ouchy. They ended up having to give me 2 lots of local anaesthetic. I probably should have asked for a third but didn’t want to seem greedy. I was silly. There is no need to be a martyr. There must have been so much adrenaline going round my body that I needed more anaesthetic but I didn’t ask for it. Ask for it!

The Clinician kept coming out of his little glass box room, which housed the scan monitor, to reposition a grid that he had lain over my chest area – I expect, to help guide him to the exact place where the mass lay in my lung, under a rib. There was a lot of pressure being pushed down on my chest. It felt like the biopsy needle was pressing through my rib, which was highly unlikely but there was always the danger he could have missed and gone through my lung – but, fortunately, that didn’t happen.

When it was all over and I was brought out of the CT scanning machine, I still didn’t move. Mask still on my face, the silent tears ran down my face pooling into my ears. I think the shock and the pain brought it on. I felt my left hand being squeezed and I was being asked by my kind nurse if I was all right?

I was then whisked away after the procedure for an X-ray, which I was later to find out was to check if the Clinician had mistakenly punctured my lung? I guess I would have known about it, if he had. I was returned to my little room with the drawn curtain and fixed up to a monitor to record my blood pressure at half hour intervals for the next 4 hours and awaited the analysis of the x-ray. It was all good and Hamish came to pick me up at 12:45 – so not all day after all.

Today, was chemo day and Hamish reminded me to be ‘to not give anything away’. We rocked up at 10:30 and I was prepared. Hamish had filled up BOTH my water bottles this time, I had my thermos of hot water and a tea bag. I had my lap top, my champagne and wine coolers for my feet and hands and, of course, my trusty electric blanket without the electric chord! I was going to be ‘charming’ and not ask them for anything. I have reached cycle 6 – half way through now – and I was going to be mostly self-sufficient. I wouldn’t need to ask anyone for anything. What I received in return was the most gorgeous of nurses in the form of Joy! Joy by name and Joy by nature. Such a lovely person and so positive – first nurse who spoke to me, independently, about the benefits of diet when diagnosed with cancer. She also told me that she had only every come across one other patient who had used the ‘cold hands and feet’ method I’m using to prevent peripheral neuropathy. She asked me if was working? “Well, so far so good”, I responded. Only 6 more cycles of Pacliataxel to go!

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There is always something to be grateful for….

Welcome back to those of you who are reading my blog each week and welcome to those of you are reading it for the first time. I’m so so grateful and so humbled that people want to take time out of their busy lives to read my weekly reports. I appreciate all your lovely comments of support. It’s so special to hear from you and know and feel that you are on this journey with me. So, I’d like to start simply by just saying “thank you” to each and everyone reading this. It matters more than I thought it did – being able to share my thoughts and words and believe that I might be making a small difference to someone somewhere, somehow.

This week has been a bit of a waiting week – waiting for the lung biopsy date, waiting to hear when my next appointment with the oncologist will be, waiting to see if the new supplements and increase in mushroom intake this week has made any difference to my neutrophils, waiting for my bloods to be analysed to see if I would still be having chemo on Thursday and then finally waiting to see if I’d survive another round of chemo – round 5 – relatively unscathed.

Well, 5th week on pacliataxel chemo I noticed last Saturday, in the shower, that I was losing body hair. Now, I know that doesn’t sound like a big deal but it’s weird noticing parts of your body starting to feel smooth and hairless when once you wished the darn hair would stop growing back so quickly so you didn’t have to shave again! The problem is, if I’m losing body hair, what does that mean for my hair on my head????? Yes, of course, I’ve noticed a bit more hair coming out in my brush – the once a week brush that I do after my once a week hair wash – but not enough to be alarmed. But, between Tuesday and Thursday, I noticed a lot more coming out. I feel so vain talking about my hair but it really matters to me. I know, out of everything I have to deal with, losing my fine, straight-ish blonde hair will really upset me, especially as once that happens the texture of your hair grows back differently and it will grow back curly – I’ve been told it’s known as the ‘cancer curl’. It worries me that I’ll look different and not sure it’ll suit me – but still not brave enough to shave my hair off just yet. It really brought it home when I saw a facebook post that a friend of mine posted with a picture of a lady and her luscious locks with the caption “your hair is the crown you never take off”. Which is true, of course, unless through no fault of your own you lose it all because of chemo!! I can’t say I’d feel very ‘queen like’ losing my hair nor very feminine and I’m pretty sure I’d lose a little bit of my mojo too.

Hair aside, I know I have got a lot to be grateful for. With all this waiting, it has allowed me to broaden my thoughts and let other people in to my consciousness. In allowing myself to think about others it has reminded me how un-present I’ve been for all the people that matter around me. We all have our own dramas going on. Some louder than others, but no less important. I have realised I’ve stepped away from being the friend I used to be and have become very self-centred. It’s exhausting and rather boring thinking about yourself all the time and how we are going to fight this beast but I shouldn’t allow it to take over. I recognise I need to be more present with others and become a better friend. I must try harder.

I never take anyone’s kindnesses for granted. I have been so lucky to receive such amazing support. My lovely sister, Alex, and my Uncle John came to visit me on Monday all the way from Surrey! I received a special blessing from my uncle who is a retired priest. They, in turn, received my home made mushroom soup and freshly baked gluten-free almond bread loaf!

My team of friends and family around me is phenomenal. I have my amazing hubby who prepares me two cold pressed veggie juices every day and I have had lovely people cook for me (no mean feat when I’m gluten-free, sugar free, dairy free, mostly organic and minimal animal protein). I have received beautiful, thoughtfully chosen silver bracelets, been given special creams, sprays, books and even a divine White Company dressing gown to boot! All for which I’m very touched and a bit surprised that people want to spend money and time on choosing something so thoughtful for me. There are friends who text me regularly each week to check in on me and those who continuously offer to take me to and pick me up from appointments, offer to go for a run or keep me company on a walk. I see them all as my little angels helping me through this and I want you to all know how very grateful I am to have you on my team and in my life.

My highlight of the week had to be receiving some homebaked low gluten, sugar free rock cakes from our lovely friend Holly – who believe you me has her own life challenges at the moment! Such a selfless soul. I haven’t eaten something cake-wise or sweets for over 2 months now and I’m not ashamed to say I seriously indulged – it was like a little slice of heaven. I savoured every moment of the first and then the second cake that I convinced myself I was duty bound to have – given I’ve been so good for so long. They’re all gone of course! Freddy and I are going to have a go at baking some on Sunday – can’t wait!

Sticking to this “nutritionally dense” diet and the complimentary supplements I’ve been given has been a way of keeping me focused, it has kept the side effects at bay and has helped me get to a weight I haven’t been since my early 30s! But, more than that, it has helped me practically improve my white blood cell count – the ones that fight to keep my immune system healthy, and that naturally get depleted over time through chemotherapy. I have heard over and over again from my nurses, from doctors and even from a specialist nurse at a well-known breast cancer charity, with whom I spoke on the advice of one of my other friends, that a specialist diet doesn’t help. I had initially called to discuss my concern about my diagnosis and the treatment that was being suggested, or in my case, about to be taken away. The nurse was seemingly very knowledgeable and kind but then it shocked me to the core when I told her about the changes I’d made in my diet and she responded with “I hope you know there is no robust evidence that diet can improve cancer”. Yet I read daily posts, on various cancer facebook forums, that there are hundreds of stories of real people who have done just that – some now in remission just after 12 months of a stage IV diagnosis! I can’t believe our doctors and nurses haven’t yet been trained on the benefits of nutrition so they can pass this on to their patients. It could literally save thousands of lives and millions of pounds in future healthcare!

Also, remember the kind nurse who looked after me last week who said there was “absolutely nothing” I could do to help improve my neutrophil count? I spoke to my good friend Suzi Chalmers – another one on my team – who I had no idea is highly qualified in the study of blood!!! She gave me a well-informed lesson on what our blood cells do and how to read my blood counts each week after chemo. I had noticed, worryingly, that all my blood counts were continuing to fall week by week as I completed each chemo session. I believe there is always something that can be done, you just need to find the right source to give you the right information! So it was no surprise to me then after emailing my nutritionist on my return home from chemo last Thursday, about my low white blood cell count, that she advised me on 4 more supplements, a reduction in one and an increase in dosage of another that lead to ALL my blood counts improving just 7 days later!! I’m not a medic and don’t claim to have all the answers but surely after following this advice from my nutritionist there has to be some correlation between diet and improving blood counts especially when my neutrophils went from 1 to 1.4 in just a week! It seems obvious to me, you absolutely can improve your situation with the right diet and supplements.

So with my improved neutrophils I received chemo no. 5 on Thursday. It was pretty straight forward except for the fact that the nurse looking after me – one who I hadn’t had before – got all funny with me when I asked for her to top my hot-water bottle up just as she was getting ready to dose me up with the pactliataxel and I’d have to put on my cold hands and feet. When I mentioned, this hadn’t been a problem for my other nurses – the last 4 times I’d been in – she just answered “I wouldn’t be comfortable filling it up for safety reasons”. I asked what she meant by that and she replied “I wouldn’t my nurses to get scalds or burns”. Blooming heck – has our society gone so completely health and safety silly that they can’t even fill up a hot water bottle? I offered to do it myself but they still declined. Wonder what kind of notes they are going to write up about me this week?

Finally they informed me that my lung biopsy has been booked for next Thursday with Cycle 6 of chemo on the Friday! The half way mark! They have had to get the head clinician in for the biopsy because it’s a tricky procedure, in terms of where the mass is located – which I understand is in the pleural area of the lung under a rib. I am in at 8am and will be there all day. I’ve been told I’ll be semi-conscious and that it’ll take a few hours for the anaesthetic to wear off. Hoping to get the results the following week – when we’ll find out if I really am Stage IV and ‘incurable’ or back to Stage III where I, supposedly, will have more options. Either way this patient won’t be rolling over anytime soon! Bring me my armour, I will be ready for whatever news awaits me…

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What a difference a week makes…

So, this is a photo of the kind of week I’ve had this week! A pretty good one, I have to say. I was sent a gorgeous gift of Beauty Pie skin creams and serums from a lovely friend from my old work days; a lovely, little, wooden guardian angel and this bunch of flowers arrived on my doorstep, randomly, with an accompanied note “Random flower bomb. Kerboom! Hope it brings some sunshine to your day.” Still don’t know who they are from but if the sender is reading my blog – thank you! It did put a smile on my face. This photo also shows my cancer bible which I am hurriedly trying to get through ahead of my next oncology appointment, making daily notes, and my ‘C’ pocket notebook that my best friend gave me. Feebs – it’s been put to very good use – perhaps not the original use for which it was intended? But just in case anyone thinks the ‘C’ stands for cancer it doesn’t! It’s my name.

I’m writing this the day after my 4th cycle of Pacliataxel. Yesterday was a bit tricky because they couldn’t fit me in to do bloods earlier this week because they have had an increase in chemo patients, so I was asked to come in the same day of chemo. I was there for 6 hours on Thursday. I think with or without the chemo, 6 hours is long enough to spend in a hospital.

I had arrived, as usual, with my 3 pieces of luggage and shuffled over to my allocated seat – chair 8 – which was pushed up into the corner, not much space for 3 bags! I had my ‘flight socks’ – as Hamish calls them – to reduce deep vein thrombosis from occurring. Nurse Claire cleaned my PICC line, which I have to admit I had been nervous about. It was the first time it had been cleaned since its insertion the week before. The bit I was nervous about was because the PICC line has a copper opening into the skin to keep the blood flow unimpeded and I had been told that it could get a bit sore and I may feel the skin around the opening being pulled and it could sting – but it was fine in the end.

I then had my bloods taken which is used to assess how my immune system is doing, measuring the effectiveness of my white blood cells. There are many white blood cells but the ones that are the most important for chemo treatment are the “neutrophils”. I hadn’t paid much attention to this part of the service over the last few weeks but yesterday the nurse approached me, with a grave face, after having studied my bloods, and told me that my “neutrophils” were at ‘1’ and if they had been below that then they wouldn’t have been able to give me chemo this week! A normal person not having chemotherapy, I understand, would have a score between 1.5 and 6.5. Needless to say, I was a little worried and started asking her a million questions about it! Basically, she told me “there is absolutely nothing one can do about it. It’s just what happens when one has chemo!”

Nurse Claire went on to explain that these white blood cells are rapidly dividing cells so they can recover quickly, even in 24 hours, but if they are lower than ‘1’ then there is a greater risk of infection following the Pacliataxel because chemo is essentially poison. It also means I am now more susceptible to getting ill so I’ve been reminded to keep away from sniffles and coughs and anyone not feeling well as I don’t, currently, have the neutrophils to fight them off. They did give me the chemo but we are going to encourage having the bloods taken the day before rather than the day of to give my “neutrophils” a chance to recuperate.

Just to be sure, I emailed my wonderful nutritionist who replied “this happens unfortunately, although not always quite this soon in the treatment (don’t worry, every person is different, and there has not been a lot of time to prepare your body prior to start of treatment, but you can catch up as things go along). It means we need to support your immune system even more”. So she has added a few more supplements and taken away another. She mentioned that In terms of diet, “keep drinking your green tea daily, berries, oily fish, mushrooms (if possible every day, best if ‘processed’ into a soup or small chunks anyway to help the release of beneficial compounds), fermented foods” and to “pay attention to have enough protein daily”. As well as following “the calorie restriction (or fast mimicking) around treatment – which is important to enhance the production of new blood cells”. I may yet need to consider mistletoe therapy. Thank goodness for her! Most people would just have believed the well-meaning nurse and done nothing about it. So grateful for finding this amazing nutritionist – I feel totally protected in her hands.

So, after last week’s difficult news, we’ve been busy every night and day trying to get through Jane McLellands’s book on “How to starve cancer” – which literally has become my bible. There are scary things we’ve come across like 25% of cancer patients die of a cardiovascular event but none of these deaths, according to McLelland, are directly attributed to cancer so there aren’t any stats on it. She worked out through her own cancer journey that a simple dose of daily aspirin given to a cancer patient would potentially save so many lives or at least extend the survival rates (see p. 194).

I also read in her book that having surgery and a biopsy can be so invasive in some cases of cancer – although I was told by my oncologist not in breast cancer – but that’s something I still need to look into given my upcoming biopsy on my lung. Apparently, according to the book, each cancer cell has a nucleus around it and if this is cut into then the cancer cells are dispersed around the body, left to float and find somewhere else to attach themselves. Scary thought. But Jane identified through her own treatment that there is real benefit to having some aspirin before, during and after biopsy and surgery because it reduces inflammation and can protect the body. However, I’ve been told several times by my nurses to stay away from aspirin which I believe is because it thins your blood and can make you bleed out. But, I’m reading, this isn’t the case in small doses and it can be so helpful with reducing inflammation. Jane McLelland quotes Professor Kelvin Tsoi where a study in Hong Kong showed taking a low dose aspirin for seven years can halve the risk of some cancers. “Long-term use showed 24-27% significant reduction on major cancers”.

We have learned so much already reading this book – and we’re only half way through! Also learned that vitamin C, taken orally or in small doses, is not good with chemo and can even make this worse by feeding the cancer but larger Vitamin C infusions are however beneficial. Something we plan on looking more into.

In her book she also describes the benefit of relaxation and learning to visualise the act of your cancer diminishing. She describes her army of white cells marching and clearing up the cancer cells. I’m not so good at visualisation because I can’t seem to sit still for long and let my mind really focus. I find ‘action’ and ‘doing’ far more easy but I had a go and instead I visualised a collection of magic wands repeating the phrase “cancer evanesco” as they tap each of my cancer cells and disappear ‘poofff’ never to be seen again! Nice visual – I thought!

But all work and no play makes for a very dull life so we decided to invite friends round for a BBQ last Saturday. We had 13 kids and 17 adults! Some who had never seen our house – the one we moved into in 2014 and have been renovating and building on to ever since – our long term project! It was so lovely to see everyone – some of us haven’t seen each other for over 2 years. I prepared all the ‘organic food’ the day before. I was up early but I didn’t need a nap during the day and I managed to laugh, catch up and hug – lots of hugging – some of my oldest and dearest friends. It made me realise how important it is to have fun, even more so when something like this takes over your life. How important it is to grab what little pleasures you can, when you can. My cancer consumes my thoughts all day long and, last Saturday, this time with friends gave me some reprieve and allowed me some much-needed time out.

But, the best news of all came on Wednesday this week when my oncologist – yes the same one from last week – called me to tell me that the biopsy on my groin was NOT cancerous! He had told me the week before that it would be two weeks before they’d have the results so I couldn’t believe it when he called. His attitude seemed to have changed – more positive, less fatalistic.

I can’t explain the relief that flooded over me, the tears that sprang to my eyes, the mini celebration that Hamish and I privately shared before I told all my family and closest friends. This is such a victory, in one way, but I quickly reminded myself they still have to check the lung mass to confirm whether or not there is cancer there. This is an organ after all and so I’m not out of the woods yet. I’m literally hanging in the balance between a Stage 3 diagnosis and an incurable Stage 4 diagnosis. I don’t feel I can rest for a moment and allow this fragment of hope to seep in to my being, in case it actually is cancer. I don’t want my hopes to be dashed again. They are scheduling it for sometime next week but, apparently, it’s a tricky situation because it’s located under a rib. I don’t think they know yet how to get to it to take a biopsy. The oncologist had said it was going to be difficult to do. So I wait again. Do I dare to hope?

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The harsh reality…

This is a proud picture of my PICC line. My sort of war wound, for now, that is going to help me be able to have my weekly chemo infusions easily and efficiently from now on.

It’s not surprising but this week has been another tough week. Chemo was easy, thank goodness, but the rest of it was challenging. It feels like I have been at the hospital every day this week. It wasn’t quite every day, but I was there for a couple of hours on Tuesday, most of the day on Wednesday and half the day on Thursday! The boredom and the harsh realisation that I’ll be visiting these same 4 walls every week for another 10 weeks at least, has already set in.

So, after last weeks’ difficult news that there appear to be other areas in my body that are cancerous, namely in the lung and groin area, and therefore I’m essentially “incurable”, this week I have had to begin to get to grips with their prediction and the likely diagnosis that it is indeed cancer and it has spread beyond the breast area – thereby making secondary cancer and essentially “terminal”.

I’m fine going to scans and straightforward appointments on my own. There is so much waiting around that I feel bad for the other person, wasting their time like that. It’s bad enough I have to do it, but I don’t expect anyone else to have to do the same. Time is so precious and everyone is busy. I recognise that more than anything now – the preciousness of time. But, when I have the big appointments with the oncologist then I do want Hamish there. He provides the ‘calm’ to my ’emotional hot-headedness’. The sad reality is, he keeps reminding me, I’m just a number in the system to them. It’s a factory conveyor belt. The harsh reality is that “there will be plenty of bums on those seats before you and there will be plenty more after”. So when I am pushy and demanding, whilst it is important to speak up, it works more effectively if one can emotionally connect with one’s oncologist team and one’s breast cancer nurses by being “charming” and “appreciative” too. Hamish has had to remind me that “we have to try to get them to WANT to help us” and not make them feel that they are being bamboozled. I need to be remembered by them for the “good reasons” not the “bad ones”.

Well – I didn’t feel much like being charming last week nor could I summon up much energy for being appreciative either but like the ‘good girl’ I normally am, I pondered upon Hamish’s latest piece of wisdom and sucked it up. I took in a couple of shop bought cupcakes this week for my nurse (ironic given I can’t touch these because of all the sugar, gluten, dairy etc in them!!) – as a peace offering to apologise for possibly making her feel uncomfortable last Thursday and thanking her for all she’s trying to do. And, she is trying her best. I do know that. She was gutted, like me, when she heard those results, I could see that. She may not be as efficient or organised as I am but I can support her to support me better. Better to work together than against one another.

So Tuesday saw me have my PICC line inserted. Bizarrely, this might have been the highlight of my hospital visits because the nurse who inserted my PICC line had me laughing the whole way through the process! Rose was her name – a beautifully, warm and humorous Jamaican vascular access doctor who had arrived in England at the age of 26, one of 10 siblings, never having been to school. She came to the UK because education is free and she took everything that was given to her and studied her way through med school and anything they could throw at her, she told me, and here she is today making waves in her own wonderful way.

If I had known the benefits of a PICC line before I had started chemo I would have never hesitated having one inserted! For those of you who don’t know what a PICC line is, let me explain: it is a long, thin flexible tube or catheter which is threaded along a vein in the upper arm, just above the elbow, into another vein near the heart. So mine was inserted in my arm on the opposite side to where my cancer is threaded along across my chest – didn’t feel a thing. It’s all so clever. The main reason for having one is because if you administer chemo through a vein in your arm, the poison spreads into the vein travelling along it to other parts of the body, killing things as it journeys its way through to the tumours but also to the other healthy parts of you. By having a PICC line the vein is protected by the tube from the poison as it first enters the body and travels up the arm across the chest to the right of my chest area where most of my cancer is sitting. I have to keep it in for the duration of chemo, not get it wet so I have a sexy plastic elasticated bag that covers it when I shower! The only downside is that I can’t make repetitive movements with my upper body in case the line falls out – so no tennis for a while, no burpees and no weights!

Wednesday was the big day. This day felt like an eternity to me. None of us slept well in the house on Tuesday night – well, apart from Freddy who had nothing to worry about apart from enjoying himself at his last tennis camp of the summer season! Ava got up stupid o’clock overly excited about getting dressed in her new uniform and heading out for her first day at her secondary school. I had been worried about getting Ava to school on time, the obligatory photos with friends etc and getting back to take Freddy to tennis as well as our meeting with the oncologist at 9:30am followed by my biopsy at 11:20! Needless to say, it was all a bit stressy.

We arrived at the hospital on time with 5 mins to spare, logged in and took our seats in the already busy and increasingly crowded waiting area – I have been told a couple of times how many more cancer patients they have had to admit over the last few weeks! I had brought my list of 17 questions to ask the oncologist – a list that Hamish and I both had gone through together carefully the night before knowing the scarcity of these valuable meetings with the oncologists and keen to get answers to so many of the big questions that have been weighing on our minds. No sooner had we sat down in the waiting room and my name was called. In my hurry to gather my belongings, I knocked over my glass water bottle – because glass is better than plastic when it comes to eating and drinking out of, less toxic etc but not less breakable!!! So, there we were already stressed, rushing around trying to clean up the broken glass and the big spillage of water all whilst the nurse kept calling out my name to go through. Great start. Hamish shimmied me along whilst he stayed behind to clear up the rest of the mess but he seemed to take forever to join me in the room with the oncologist and two other nurses – I was so worried the oncologist was going to start and Hamish would miss important information. No more glass bottles for me – going to have to go the stainless steel route instead!

I think the meeting took about an hour. The oncologist showed us my PET scan and summarised what he saw. Basically, the bits that light up on the scan are where the cancer is. They light up as a result of the radioactive solution they injected in to me. What we were seeing were the cancerous areas in red. He explained that the brain would be lit up the most because that’s where there is naturally a lot of activity but it was the other red areas on the scan that were lit up that we needed to concentrate on. That said, both Hamish and I had discussed privately our wish to ask for an MRI of my head to cancel out the possibility that the cancer may have spread to my brain as well so we bided our time before putting this to him. So he directed us to the right breast area, nodules under the armpit and up to the clavicle or collar bone area but he also showed us a series of spots around the right groin area and a bright red smaller mass by the right lung.

The oncologist was a seemingly nice guy, on first impressions, so we did all the cursory polite introductions and he summarised what was most likely to happen to me next. After the explanation of the PET scan this is when the difficult information came out. And, all of a sudden, we realised how very much I was just a number in the game…

It became clear that in the NHS there is a significant difference between primary and secondary cancer – where it has spread to other body parts. There seems to be an even greater difference between Stage 3 and Stage 4 cancer, where at Stage 3 you are deemed to still be curable but once it’s gone to an organ, there’s no telling where else it may have spread to so at Stage 4 you are essentially given a ‘terminal’ diagnosis! And, at Stage 4 they seem to almost give up on the idea of being able to cure you and the focus for them then becomes on how to manage your cancer and keep you comfortable for the rest of the life you have left.

Now, wait a minute. I don’t look unwell, I don’t feel unwell, I have no other symptoms and yet he seemed to be willing to assign me to the scrap heap! Well, that’s how I felt at least! So, I lost my rag when I asked him for an MRI scan on my brain to see if it had spread there too and he answered that “no” he wouldn’t do one. Even though it had spread elsewhere, supposedly, it wasn’t worth doing an MRI scan for my brain????

Apparently, because my primary diagnosis was breast cancer, they don’t offer an MRI for your brain. This only happens if you are diagnosed with melanoma or lung cancer. But, I was thinking, if my cancer has spread to the lung why wouldn’t I fall into this category then? No, apparently not, because my cancer in the breast came first! The oncologist kept telling me that he “couldn’t justify it”, that he “couldn’t justify” giving me an MRI scan. Well, I lost it. I couldn’t believe what I was hearing. Hamish tried to calm me down to try and get to the bottom of the matter. All I saw was red and couldn’t concentrate properly on anything else that was being said. I needed to find out if I had cancer anywhere else! I didn’t want any more surprises. We need to know completely what we are dealing with here before we can decide what to do next. After much to-ing and fro-ing – something he could have totally avoided – we had to literally drag it out of him that we could actually go and get an MRI scan done privately and for not much more than £100!!!. All he had to say was “I’m sorry, the hospital won’t allow it due to budgeting reasons but you can get a private scan done cheaply” but, no, we had to sit and have a dance around the subject before we could obtain this important piece of info.

When I asked what would they have done if they had found all the cancer at the beginning? He said they would have prescribed a pill or an ‘inhibitor’ that would halt the growth of the cancer and then give me what I needed to manage the cancer but they never would have put me on Pacliataxel.

Because my first diagnosis was just my breast cancer and the lymph nodes I was diagnosed as Stage 3 but if they’d found it all I would have been diagnosed at Stage 4 – so it’s an absolute blessing they didn’t find it all first. He explained that because I’d already started on the Pacliataxel and I wasn’t having any problems with it, that they would let me finish the 12 week cycle but after that they are not going to give me the EC chemotherapy I had originally been recommended. I am not bothered so much about that as that’s the heavy dosage chemo that so many people struggle with but then he began pulling away the other treatments they originally suggested. So, he mentioned that it was unlikely that I would now have surgery either – basically because I’m ‘incurable’ now, so why do surgery? It feels a bit like they are giving up on me.

So, the next 3 months are crucial for me. They’ll do a another scan towards the end of the chemo and see how the tumours have shrunk. It almost doesn’t matter so much what the outcome of the biopsy on my groin area is, as fortunately the treatment will continue no matter what. Of course, we do need to know because if affects what we do after the Pacliataxel chemo, especially if they decide to assign me to the scrap heap and say that there is no more that can be done for me other than to give me a pill to stop the cancer spreading more aggressively.

I asked how could it be that I have all this cancer in me and still look and feel so well? It just doesn’t make sense. If I hadn’t found the lump in the first place, goodness knows how long this could have gone on for! I’ve got to continue to stay well though. It’s imperative if I am to have more choices at the end of these 12 weeks. The oncologist was very cagey and he wouldn’t promise anything but it’s possible, at least, that if I’m still well after all the chemo sessions they may be more inclined to try more interventionist treatment on me – maybe?

It’s becoming clearer and clearer to me that you can’t put all your faith in your doctors. They have a role to play but they can only play by the NHS rules – and these rules are very limited. If you want to win the battle with cancer you have to fight it from every side.

I want this buggar gone! I can’t just sit back and wait to see what happens. I need to make plans and so we are back into reading around the subject, the subject of how to starve cancer and the possible pathway blockers that are out there to help me fight the cancer off. The new book de jour is Jane McLelland’s book on “How to starve Cancer”. She says that in order to eradicate cancer you have to do three things: kill it, boost your immune system and find ways to block the pathways for the cancer to continue spreading. So, currently I’m boosting my immune system with my strict diet and all my supplements. I’m killing the cancer with the Pacliataxel and now I need to find out about these “pathway blockers”. Jane talks about how it is important to find an oncologist team that considers the combined metabolic and genetic approach to treating cancer. Most oncologists only consider the genetics side of it. We have only read the first few chapters – yes we are reading it together, Hame and me, so that we can figure this out together. Jane’s facebook group has plenty of people posting saying they’re now cancer free after following her methodology so why can’t I? I’m going to make a promise to be rid of this cancer within 18 months! The fight has only just begun!

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More bad news….

This photo I thought was a sign from God as I left Spain two weeks ago. The rays gave me a feeling of such positivity and that has kept me going along with all the wonderful support of my friends and people who have reached out to me through my blog or personally. But this week has been a particularly tough week. Just when I thought I was grappling the jaws of chemo and winning, I was catapulted to a new level and given more bad news on Wednesday.

Logistically, this was always going be a challenging week. It’s the week before my daughter, Ava, starts secondary school – last minute school uniform shopping etc. It was Freddy’s 10th birthday on Tuesday, I had a couple of coaching clients, blood and swab tests to have before chemo on Thursday, a semi-finals tennis match on Wednesday afternoon for Freddy, Kent County Tennis championships for Freddy starting all day Thursday and Friday and my husband, Hamish, having a colonoscopy for an ongoing issue that we have both been very concerned about – on the same day as my second cycle of chemo! And breathe…. we got through it but not without a few bumps and scrapes along the way.

I’ve been cracking on with the diet, taking all the extra supplements our nutritionist has recommended, getting some good sleep in, exercising and doing the usual mum things that are required of me. On Wednesday at 10am, I went in to the hospital, as planned, to have my weekly bloods and covid test – it never gets easy having someone shove a hard plastic wand down your throat and then up through your nasal passages! Fortunately, I had time to squeeze in a quick morning run and drop the kids off at their friends’ houses for the day.

My PET scan results had been on my mind all week, not having heard anything since my scan the previous week so when I was there at the hospital I pushed for my designated breast nurse to get me my results. I had been told that the PET scan was to clarify if the enlarged nodes by my collar bone were cancerous or not. I was told that morning that the oncologist on call was having to straddle both Guys & St Thomas’s patients as well as those at the PRUH so it was going to be difficult to get an appointment. Oh the joys of the NHS. I was offered a telephone appointment at 4pm later that day but was asked to come in to have the meeting with the oncologist in the presence of the nurse. Well, in hindsight, I now realise there was never going to be a good outcome with a set up like that. When I received the call to go back to the hospital, I had just finished up with a client, Freddy had his tennis match at 5pm so going to the hospital for the telephone results at 4pm didn’t seem to be too difficult to do, so I headed back by myself – after all, what’s the worst that I could hear? That the enlarged nodes were indeed cancerous and would require radiotherapy? No, not so, not on this occasion. I don’t think the nodes even got a look in! Apparently there can always be worse results…

There I was sitting in an office, accompanied by my nurse, hovering over the desk phone, waiting for us to call the oncologist. The nurse logged in on the PC and brought up my notes. Whilst she was setting up the call with the oncologist, I noticed a whole load of typed observations from my previous chemo appointment about me up on screen. I squinted and tried to subtly read what I could while the nurse was distracted on the introductory call with the doctor. What they wrote was true but it didn’t make for nice reading. They essentially noted that I was “a very nervous patient” entering the chemo suite. That I had brought “excess luggage” and a whole load of ice cold “accessories” for the duration of my chemo session. I smiled, knowing what I must have looked like. It bothered me initially but then I batted the thought away. Yes, I was nervous. It was my first time. And I had no real idea what to expect but I smashed it and no one was going to take that away from me.

Eventually, the oncologist came through on the speaker phone and informed me that “unfortunately, it wasn’t good news” and that the PET scan showed up two additional “concerning” masses.

Time didn’t quite stop still but I noticed I started breathing a little more quickly and I felt on high alert. What did they mean? How could they mean more cancer? I feel well for goodness sake! I’m doing everything I absolutely can to starve this awful cancer of any chance of growing further. This just doesn’t make sense! He continued, “one which is small” but “very suspicious” beneath my rib and near or in my lung and another “larger mass” in my right groin. Essentially the masses are “concerning” enough for the oncologist to think it’s more cancer. “Please, no. This can’t be”, I repeated to myself. I was just getting my head around the breast cancer stuff!

They apparently need to take biospies to be sure but they can’t get to the mass near the lung because it’s in a tricky position but they can get to the groin area. The sum of it is, there’s a very good chance that it is cancer and the oncologist shared with me that if it is indeed cancer then it is unlikely they can cure it…..

Hearing the word “incurable” has got to be the hardest word I’ve heard so far during this diagnosis. Dark thoughts have entered my mind several times since. My kids are only 10 and nearly 12. I want to see them grow up. I want to be a granny. I’ve only been with my lovely Hamish for 15 years, there’s so much more we want to do together! As one of my good friends recently wrote to me my journey is a bit like “a roller coaster ride with so many bumps in the road”. I can’t say I’m enjoying it in the slightest. How can one be grateful just to have breast cancer and hope to God that you get nothing else or it doesn’t spread? Well I’m telling you, I’ll take breast cancer any day over having it confirmed that I actually have more cancer and that it has now reached an organ and I now can’t be cured!

After the oncologist’s telephone call, I was absolutely floored. I asked the questions I needed to in order to get the answers they were allowed to give me. I rushed out of the hospital office, without a word, and out to the car park. My mind racing, I was very emotional and very scared trying to call Hamish on the phone but he was on a work call and I was in a rubbish reception area! I arrived home, a bit in a trance, and called Freddy to get ready for his tennis match. Hamish hurried downstairs to catch me before I left and I relayed to him quietly and quickly what had just happened. I couldn’t hold it in any longer. The tears came in their bucket loads but there’s no time to cry when your son has a tennis match at 5pm. I had to pull myself together to get Fred to his match and then sat there for 1.5 hours to watch our son get smashed on court. Hamish did try to suggest we just cancel the match but, no, I’ve got to follow everything through to the end. I can be a stubborn so and so sometimes. Possibly to the detriment of myself. And, I still had to get ready for chemo no. 2 the next day!

Needless to say, I had a fitful sleep and woke up tired and with red, raw eyes from all the crying. Both Hamish and I were so worried, for each other and for ourselves – with Hame finally having his colonoscopy later that day. Hamish kept hugging me and telling me we’d get through this together, whatever it takes. There was a heaviness in the pit of my stomach and a foreboding that I just couldn’t shake.

Thursday was going to be a massive day – Freddy’s Kent County Tournament, Hamish’s colonoscopy, my 2nd cycle of chemo and the latest news hanging over us. I got dressed, made Freddy’s lunch, Hamish got the kids ready, saw to the builder (yes, the house is still not finished!) and I left with Freddy at 8am to get him to his tournament and have a hit about to warm him up for his first match at 9. Fortunately, I was able to stay for a short while and watch a bit of his first match – which he won! – and then leave him with a dear friend who had kindly offered to stay with Freddy all day.

I drove home to Hamish where he was kindly packing all my bags ready for my second chemo sesh at 10:30! There’s a lot to pack – all the ice packs, lap top and snacks, blanket and pillows as well as hot water bottles and thermos etc. Another friend picked me up to take me to the hospital as poor Hamish was confined to the house in preparation for his colonoscopy later that same afternoon. He was going to have to get a taxi to his appointment and have a friend collect him later on that evening around 8pm given I was not going to be in a position to drive him anywhere. Told you the logistics were tricky!

That said, chemotherapy was even more straight forward for me the second time round but I was angry and emotional throughout it. I couldn’t stop crying when the nurses asked me how I was? What a question! Do they not read my notes and know what had occurred just the afternoon before? Obviously not, so I had to explain each time why I was such an emotional wreck – no doubt all of this going down in their observations and in their notes to be written up on me. But I wasn’t just emotional. Something was bubbling up inside me. At that point, no biopsy appointment had been made – yet the urgency was clear, especially if I was now on the wrong treatment and a new treatment path may need to be arranged.

I was also still waiting for my PICC line appointment (this is where they put a catheter into one of the large veins of the arm, above the bend of the elbow, which stays put for the duration of the treatment). This is so that if my veins collapse during chemo, which they can, the nurses can still get access to a vein to give the chemo rather than having the chemo treatment delayed. I should have agreed to it immediately but I had always been told I had good veins so didn’t think I needed it. Having a PICC line just makes it less painful and less distressing if something does happen to the veins but it took me a week to figure this out. I had been waiting for over 3 days for this appointment and timing is of the essence here because your veins can collapse at anytime during chemo.

Having had a bit of time to think about how things had panned out the previous afternoon, I was also cross that I was made to come back into the hospital for my PET scan results to be told what I was told, without the presence of my husband, and then expected to drive home by myself with that news heavy on my heart. So, once I was ensconced in my chair and hooked up to the cold cap, I insisted that I wouldn’t leave the chemo suite until both PICC line and biopsy appointments had been booked in. This was a bit of a mission because I’d just been given the steroids and antihistamine which, you may remember, makes one a bit drowsy. I think I got my point across though – probably much to the amusement of my fellow chemo patients who, heads down, pretended not to hear my ranting. I also insisted that never again was I ever to have to come back into the hospital to receive bad news like that. Instead, I want all future results to be relayed to me on the phone at home or face to face in the presence of both my husband and me.

My nurse is very kind and she’s doing her best but she tried to assert that that’s not the way they do things and that she was only following orders. I explained very clearly to her that, as I understand it, she is my conduit between the oncology team and me and so she would need to learn to manage upwards if she was going to help me properly through this process. Needless to say I got the appointments booked in and we have a face to face meeting with oncologist next week.

None of this is easy. Hamish, my friends and family and I are all beside ourselves with worry as to where the next part of this journey will take me. I don’t feel particularly positive right now. A couple of days after, I’m still a bit numb to it all. Lots of thoughts running round my brain but the best news is that Hamish has the all clear and that result has been a long time coming so we can breathe a sigh of relief. Little wins. We will just have to see what next week’s biopsy brings – results won’t be until the following week but if my cancer is “incurable” there has to be another way. I can’t let this beat me. There are plenty of stories on online cancer forums of people who have managed to rid themselves of different cancers through various means. Why can’t that be me too? I just need to find out what I’m up against and then I better arm myself for battle. I won’t lose. I can’t. I mustn’t. I have too much to live for. I have to try…. I’m just hoping and praying with all my might that the biopsy results don’t bring me the news I’m most fearful of.

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Cycle 1

I did want to inject some humour into this blog but, up until now, there hasn’t really been much of an opportunity. So, this is a photo of me wrapped up in my electric blanket – without the electric part (which I’ll explain later) and my feet covered with ice cold champagne cooler sleeves! Needless to say, I was the only one sporting such attire on the first day of my first round of chemotherapy!! Did I care? – not one bit! You leave your ego at the door and you walk in stripped back to the core. After all, in this room, you aren’t the only one who has a cancer story to tell…

On Thursday 19th 2021, I woke up with a mix of dread and relief that this day had finally arrived. I had spent weeks preparing for this day. I had three bags packed: one trolley dolly (as my friends like to refer to them!) – a small wheelie suitcase containing my newly purchased grey, fleece, electric blanket as well as books, laptop, phone, snacks, hospital notes etc; a chilli bin with 8 new lots of wine cooler and champagne sleeves which had been steadily chilling – or should I say freezing – in our freezers at home over the last few days ready for today; and a third bag to carry my thermos of tea and two hot water bottles. I was definitely the one with the most luggage walking into the chemotherapy suite that morning! Hamish always says I over pack – but I like to have choices and be prepared for every eventuality!

We arrived at 9am on the dot but we weren’t seen straight away. We walked into a waiting area where there were just 3 ladies, similarly waiting to be allowed in to the chemo suite. I call it a suite but, basically, it’s a large-ish room with 11 identical blue, leather arm chairs spaced out equi-distance from one another with monitors and IV drips.

I had to wait to have my temperature taken and a Covid swab, then be asked a few questions and was sent back to my seat to wait to be called in. I had spent the morning very nervous and teary. The fear of the unknown had got the better of me during the course of the morning and I found myself overwhelmed by emotion. I had so wanted Hamish to come in with me, especially for the first time, but none of us were allowed a companion – bloomin’ Covid!

I know this about myself – that I have this fear of not being in control, of not knowing what is about to happen to me. I don’t embrace the unknown very well. I like to know what I’m facing and I tend to have an overactive imagination. I know deep down, almost always, that I’ll be all right but the logic and knowledge of this had escaped me this particular morning and I found it hard to get a handle on my emotions, just teetering on the edge between holding it together and breaking down completely.

When I did finally walk through the doors of the chemo suite, I was guided to chair no. 10. I said goodbye to Hamish and muddled about with all my bags and where to place them so that I would have easy access to all their contents – I was only just about holding it together. Then, as I opened my trolley dolly to get out my electric blanket to plug in and start to get warm, I was greeted with an “Erm, no, you can’t have that in here, it hasn’t been tested!” I met the Head Nurse’s comment with disbelief and was told that until it had been formerly tested by the hospital’s safety team that I would not be able to plug in the blanket. Needless to say, the floodgates opened and I collapsed into the chair, tears streaming down my face, wracked with sobs. How was I going to cope with a freezing cold cap on my head as well as the cold hands and feet without an electric blanket? But, I did….

My designated NHS nurse and the volunteer looking after me were so wonderful. Their kindness and gentleness was just what I needed to soothe me back into an emotional state that allowed me to get back into the zone to start treatment. I was clearly the newbie! The first thing I thought best to happen was to pour myself a nice cup of hot Orange and Lotus flower green tea from my thermos and settle down to have my cold cap fitted. It’s truly amazing how everything seems a lot better after a nice cup of tea. In a previous life it would have been a large glass of wine – but nowadays it’s a mint or a Green tea! The nurse then set to work on spraying my hair with water and then smearing it with conditioner. I’ve been told that it’s best to try and only wash your hair once or twice a week and refrain from brushing it during treatment – God knows what I’m going to look like at the end of these 5 months!

Not all the chairs in the chemo suite were full. There were probably only about 7 of us that morning. Only three of us opted for the cold cap and so whilst others were getting hooked up to their chemo treatments, we had towels placed on our shoulders and our hair prepared – I have to say it wasn’t too dissimilar to being in a hair salon.

I’m sure each of us stole sneaky glimpses of one another whilst the caps were being fitted but whilst there was a bit of familiar chatting between the nurses and the patients, there wasn’t a lot of talking to each other and I wasn’t feeling sociable so I kept to myself. I also noticed that only one of the ladies was wearing black nail varnish! One of the pieces of advice I was given to help reduce peripheral neuropathy. So feeling very pleased with my intel, I got myself comfy to have the cold cap fitted. Once the cap was on, the nurse explained that I would experience a ‘freezing cold’ sensation spread slowly over my scalp.

I am trying the cold cap because, for some, it can help prevent the loss of hair on your head. I think you lose your eyelashes, eyebrows and body hair anyway but this is a way of prolonging the hair on your head. You have to wear it for 1/2 hour before treatment begins and then 60 mins after treatment. I’ve been told the worst part is the first 15 minutes. I was then given an anti-sickness pill that tasted foul. I was trying to concentrate on everything other than the freezing cold gel filling the surface area of my scalp and I noticed, with a smile, that one of my favourite dance songs was playing on the radio – Livin’ Joy, Dreamer!

My nurse then explained she would have to administer a dose of antihistamine and steroids (I think this is to prevent any allergic reactions to the pacliataxel). I didn’t know what to expect other than being told that I would probably feel quite drowsy which, of course, then brought on the nervous wees! I had to squeeze one more out before they dosed me up. Almost immediately after they gave me the antihistamine and steroids, I came over all extremely fuzzy and I had an overwhelming need to close my eyes. This may have gone on for about 20 minutes or so at which point, no joke, I felt like I was back in Thailand on Koh Pha Ngan on ‘magic mushrooms’ but without the hallucinations! Of course, I then needed another wee! It wasn’t easy navigating my way out of the room, having to slalom between my three pieces of luggage whilst wheeling the IV bag along with me – all while trying to appear sober and walk in a straight-ish line to the lavatory and back!

Mission accomplished, I returned to my chair ready for the hard stuff and, of course, to begin the application of the frozen champagne sleeves and wine coolers to my hands and feet. Goodness knows what the others must have thought about me in that room. Again, I didn’t care but I must have looked a sight digging out the freezing wine coolers and placing them over my bestockinged feet and my gloved hands – but I was too fuzzy to notice. I’m just super grateful for fluffy, hot water bottles and hot tea! In the absence of my fully functioning electric blanket, these additional heated items that I had brought with me did the trick!

The best news was that the Pacliataxel chemo was only an hour! I had misunderstood that my 5+ hours at the hospital on ‘chemo day’ wasn’t actually 5 hours of chemo but just one hour and the rest was all the extra time needed for prep and the cold cap. Honestly, that was the best news ever! 5 hours v 1 hour – no contest! Even the 1 hour of post chemo wearing the cold cap was manageable as long as I could get the champagne cooler sleeves off my feet and hands. At the end of my chemo, I had a pile of 8 defrosted wine and champagne coolers and not a bottle of wine in sight! My lap top remained unopened – bit difficult to use with wine coolers on your hands! But a good podcast, recommended by a dear friend, saw me through to the end. I had survived. I can do this and I’m telling myself that next Thursday will be much easier.

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How diet can starve cancer cells

When I was first informed that it is possible to heal one’s body through diet and nutrition and even starve cancer cells to stop them being able to feed, naturally I sat up and listened. Well, to be fair, not straight away… Early on in my initial diagnosis I was still getting my head around everything but it was probably the first piece of advice that came my way and the first piece of advice I actually acted upon.

When this rather important and potentially life-enhancing information was presented to me, I have to admit, I didn’t first receive it in the positive way in which it was given. Many of my friends and family know me as someone who is quite partial to a glass of rosé or bubbles! And, I have used Lockdown as a time to explore as many of these varieties as has been possible – all in the name of research of course! I may also have used this Lockdown period as a time to indulge a little on the chocolate front. And, when we’d go out for dinner, my go to choice on the menu would often be a fillet steak with chips and bernaise sauce and so, I’m not ashamed to admit, I wasn’t happy that I’d have to park all these ‘favourites’ of mine and possibly resign them to the past – indefinitely.

I knew I would have to take action if I was going to find a way to navigate myself through the chemotherapy field of side effects but I had rather hoped to have had one last blow out with my hubby but that wasn’t to be. After seeking advice from our newly hired nutritionist, it became abundantly clear that ‘sugar’ and ‘alcohol’ are the ‘evils’ needed by breast cancer cells to feed on. “Alcohol is one important risk factor in breast cancer (and other types of cancer too), particularly in hormone-driven cases. The risk it poses does not change after treatment, when it will continue to be very important to minimise the risk of recurrence as much as possible.” So, I didn’t really have a choice. I have to say I felt bereft and, once again, felt another thing was being taken away from me. But with every choice taken away, you do actually have another choice in terms of ‘choosing’ to act or not act. The moment I realised I had to do this properly or not at all, it was like a switch had been flicked inside me. There was only one way forward. And then, suddenly, I had a focus. With one immediate positive re-framing of my new consumption choices I single-handedly gained back some of my control. I have a goal and that goal is to ‘starve’ my cancer cells as much as possible and create an environment within my body to allow for the best possible healing.

So, for over 3 weeks now, I have followed a strict organic and clean diet and not touched a drop or pink wine or prosecco! I have even been fasting for 12-16 hours each day, over night. That said, I have also been told that, during my chemo treatment, exercise becomes even more important than diet as a means to increase one’s immune system and ease nausea and other side effects by helping to push the toxins out.

So here are some interesting things I learnt about nutrition, once you’ve been diagnosed with breast cancer:

  • I need 7-9 portions of veggies a day – not the usual 5 a day we are told. Best way to do this is by juicing and vegetable smoothies. We’ve bought a glass smoothie blender (best not to use plastic anymore!) And we’ve purchased a stainless steel, horizontal, cold-press juicer to get as many of these nutrients into me!
  • I need to choose veggies that grow below ground rather than above – apparently root vegetables play a big part in protecting health from a variety of diseases including diabetes, cancer and heart disease. The antioxidants and fibre in root vegetables help combat inflammation which are important for a healthy body.
  • I need to drink 2-3 litres of water a day – we’ve invested in a massive water filter that is supposed “to provide (a) purification and filtration system that can remove and reduce as many toxic contaminants as possible without removing all the healthful and beneficial minerals that your body needs.” (from theBerkey.com)
  • If you don’t empty your bowels 3 times a day (once after each meal) then you could be considered to be ‘constipated’ – never knew this! Thought once was enough!
  • Too much protein can apparently be cancerous.
  • Fasting can have very positive results e.g. according to a Healthline.com in a 2016 study, research showed that a combination of fasting and chemotherapy slowed the progression of breast cancer. The same study noted short-term starvation makes cancer cells sensitive to chemotherapy while protecting normal cells, and it also promoted the production of stem cells.

Fasting is something I’ve had little bit of experience with before but I previously did it as a way to lose weight. I understand that when I come to my second lot of chemo, 12 weeks after the Pacliataxel, that this will be the time I may need to fast for longer periods, given the toxicity of the drug I’ll be taking. That said, I have been advised to restrict my calories during the next 3 months during my first lot of chemo – known as ‘fast mimicking’. Basically this requires me to reduce my calories to 500 on the day before chemo and on the day of chemo. What I consume, however, must still be nutritionally dense – hence the juicer and smoothie maker.

The science behind fasting during cancer treatment is this: when you fast, your body goes into starvation mode and the ‘good cells’ hibernate or hide to protect the body from anything that may attack it. The cancer cells or the ‘mutant cells’ as Hamish likes to call them, are dumb and just sit there in plain sight waiting for any morsel of sugar to feed off, so when chemotherapy starts, the ‘good cells’ are already hibernating, remaining mostly protected, and the ‘mutant cells’ get zapped. It is believed that fasting, in this way, helps to keep the side effects from chemo at bay.

Now, as well as following the guidelines to this new, healthy diet, my nutritionist – who has a wealth of knowledge being medically trained herself – has advised a whole host of supplements for me to take during the course of my treatment. It’s not cheap but it’ll be worth it to avoid most of the side effects that many people experience. Now that they’ve all arrived, I swear my dining room looks like a small boutique pharmacy!

Something in all of this must be working because I have the energy to finish off this blog ahead of the one I’ll write in the next day or so (energy permitting) to share the experiences of my first chemotherapy session! It went way better than I thought, especially if the way I’m feeling is anything to go by – but then the expression “don’t count your chickens” springs to mind! Fingers crossed.

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To do or not to do? – that is the question….

I hadn’t intended on writing this many blogs in one week – they will peter down, I promise! I had always imagined it would have been a weekly endeavour but I’ve had so much to get my ahead around and so much information to assimilate that I felt I’ve needed to write it all down.

I have been experiencing a little bit of internal conflict, which I know isn’t unusual in itself but it has sort of opened my eyes to how lucky I am to have the connections to people that I do.

Let me try to explain…. when I first started this journey, understandably I was a bit shell shocked. I couldn’t believe that I had been diagnosed with Stage 3 breast cancer! I’m NEVER ill. I don’t have time to be ill. But, all of a sudden, when I feel at my most healthiest and I have a bit of a tan and exercising like a trooper, I’m told that I’m now “vulnerable” because I have “a fast growing and invasive form of cancer” so I now have to keep away from crowded spaces. I almost went into hibernation, a sort of protection mode to try and get my head around it all. When I say “all”, I mean ‘what it all means’, the life and death situation, the losing of a boob situation, losing my femininity, my hair, my eyebrows and eyelashes, hoping my husband won’t look at me differently and all the other side effects that come with chemo. So I think I closed a bit of myself off from anyone, including my husband, to try and process it all.

This was in stark contrast to my husband, Hamish, who was busily reading anything he could around breast cancer, what to expect, supplements to take, things to avoid etc. He took action. He did what he needed to do to keep ahead of the curve. Instead, I didn’t want to know anything. I wanted to just get my head around what I’d been told. Despite all the well meaning suggestions to speak with and meet up with other breast cancer survivors or read books on the subject, I just wasn’t interested. Hamish couldn’t understand why I didn’t want to find out more about it and how to protect myself but I just didn’t look at it that way, at first, it was too huge for me to be able to do anything.

Then, life threw me a positive left curve ball in the form of a lovely lady who Hamish sings with in his choir – 5 days after I’d been told the lump was cancerous. This lovely lady, I may have met eventually but I’m learning that timing is everything so the fact I got to meet her when I did and I was receptive to her information was amazing. Basically, it was Hamish’s last choir session of the summer term and they wouldn’t reconvene until September. The choir session was being held in our back garden and there were drinks afterwards – so I had a reason to be there. Then because the choir teacher (a good friend of ours) encouraged me to speak to this lovely lady on the night in question – even though I had categorically stated I didn’t want to speak to anyone – yet. I found myself strangely propelled to speak to this lady at the end of the night and, perhaps if I hadn’t, I would not have found out what I now know so far in advance of my first chemo treatment.

So, I refer to the title of this blog – “to do or not to do?” The moment I allowed myself to reach out to this lady, was the moment I started to regain the control I felt I had lost since the start of my diagnosis. And, this only happened because I was brave enough to take action and go up to a complete stranger and tell her that I had just been diagnosed with breast cancer – to which she responded with real sincerity and warmth, “can I give you a hug?” I cannot thank her enough for knowing how to respond to my unprepared and emotional announcement. It was late but she and her husband went home and sent an email, despite it being midnight, that included a whole host of contacts and complimentary treatments that had helped her during the course of her chemo and beyond. Her research and her knowledge is the main reason why I have chosen to act and seek more knowledge and speak to more people with the same cancer as me so that I am ready for Thursday’s first chemo session.

In addition, because I opened up both on my blog and through other communication channels, I have had people reach out to me – friends who I haven’t spoken to in years and even a mum from my son’s school – all who have provided me with additional information and practical advice that I would never have been able to collate in time ahead of my first treatment. Never have I more believed in the ‘law of attraction’!

Conversely, having spoken to another lovely lady this week, another breast cancer survivor who had been introduced to me by an old friend from my London days, it became even more apparent to me that ‘doing’ something rather than ‘not doing’ something and waiting to let it happen to you can have very different outcomes. Just like how I felt at the beginning, this kind lady didn’t want to know anything more, it was already too overwhelming to just get her head around her diagnosis. She mentioned that she didn’t have the strength to do any research until 3 months after she had started her chemo. So, she began treatment not having researched a thing, not knowing how to prevent some of the side effects that did actually come her way. We all handle things differently and there is absolutely no judgement call here. It’s a minefield out there with all the information there is but I truly believe that my action is going to help me really manage this illness better and prepare me to fight it with all I have.

That said, it is very daunting and with this revelation to act and to do, comes the pressure to try and learn everything there is within the next 5 days about what I can do to prepare for the chemo treatment over the next 5 months, but fortunately I have already started this process. There is so much information out there about breast cancer but, as I mentioned earlier, there are many different kinds of breast cancer and, as I understand it, each type of breast cancer requires different treatment and therefore experience slightly different side effects. I believe it is important to focus on the specific kind you have and learn as much as you are able to before treatment starts.

So, what have I managed ‘to do’ to date? Well, at the recommendation of my new lovely choir friend, we have hired a Functional Nutrition & Lifestyle Medicine Practitioner to help me identify which foods and supplements are best suited to my metabolism and learn which are the best to combat the side effects of the type of chemo I will be receiving. For that, I needed to get bloods taken against a list of blood indicators that this nutritionist will analyse and then share the results with us next week, when we have our first consultation. But, ahead of that meeting, she sent me a preliminary list of vegetables and fruits that I should concentrate on eating, including those I should try to avoid. This list also outlined the reasons behind following this strict diet including which types of food breast cancer is most likely to ‘feed on’. So, for nearly 3 weeks now I have not had any alcohol, no dairy, increased my plant based food consumption, reduced my sugar content significantly and kept away from processed foods and, where possible, only eaten organic produce. I’ve done this mainly to try and starve the cancer cells in my body but also to prepare my body for the onslaught of chemo treatment in the belief that this will minimise its side effects. I now look forward to understanding what supplements and homeopathic remedies may aid me on this journey.

Handy hints and tips that my new choir friend and a dear friend, from the past I have recently reconnected with, suggested that:

  1. Paint my nails, before chemo, initially in a nail strengthening varnish and then a dark UV protection nail varnish to stop the weakening of my nails and them falling off.
  2. Drink tumeric tea every day – some studies suggest the curcumin in turmeric has a variety of health benefits, including fighting cancer cells.
  3. Get a wig because it will make you feel more ‘normal’ when you have to go out and about and make sure you get your hairdresser to cut it to your style because “they know the shape of your face”.
  4. If you are going to have Pacliataxel or EC chemo treatment, like me, it is a good idea to cover your hands and feet with ice cold pads or immerse them in ice cold water bowls to prevent possible ‘peripheral neuropathy’ that many experience. This is an uncomfortable numbing or tingling in the ends of your fingers and toes that may be permanent even after chemo. The challenge is to keep the ice pads cold enough for the duration of the treatment which can be hours. Take an electric blanket and hot water bottles to counteract the freezing sensation.
  5. Try and wear the ‘cold cap’ to prevent loss of hair – I haven’t come across many people, so far, for whom this has worked. In many cases it is too cold to handle and given hair grows back, it may be the one aid you can afford to skip.
  6. If you aren’t going to use the cold cap then be brave and shave your head as soon as you are able to, so that the loss of hair you’ll experience is less traumatic. It’ll be one less thing for you to worry about. Hats and scarves are good accessories to experiment with!
  7. Find some good pod casts to listen to or good films/tv series to watch – you can be there for 2-4 hours and if you choose to wear the ‘cold cap’ you need to add an extra 1.5 hours on to your time.
  8. Chemo brings on the menopause, which while this is daunting, it’s pretty much over within 3 months so you won’t have to deal with the years of discomfort that women usually experience.
  9. Try and find a make up tutorial to assist you learn how to draw on eyebrows and eye make up when you lose your eyebrows and eyelashes – it makes you look and feel a bit more normal.

Next Week it’s all happening. I have my PET scan on Monday to see if the enlarged lymph nodes near my collar bone are cancerous. Apparently I’m radioactive for up to 8 hours afterwards so I can’t be anywhere near the kids! Then, also on Monday, we speak with the Nutritionist and find out the results of my blood indicators. On Wednesday, I am swabbed for Covid and I have an ECG then Thursday morning I have my first chemo treatment.

Unfortunately, a seemingly unsympathetic nurse I spoke to earlier this week chose to relay the details of the twenty something side effects I was likely to experience and then proceeded to tell me that, because of Covid, I wasn’t allowed to have my Hamish keep me company during my chemo – so I’m going to be on my own for my treatment. This absolutely floored me, it’s not the way I wanted it, not the way I had envisaged but I think that’s just the way this horrid illness roles so I need to get better at handling these left curve balls…. wish me luck and see you on the other side!

10 months on….from treatment

Hi all, it’s been a while hey? 10 months in fact. I thought it might be nice to check in and let you know how I’m doing? And, for those of you who are currently dealing with this nasty disease, aim to give you some idea of what to look forward to in the coming months.

If you are reading my blog for the first time, I was diagnosed with Stage 3, Oestrogen Positive (ER+), HER 2 negative (HER2-) breast cancer that had spread to my lymph nodes on my right side in July 2021. I started Pacliataxel chemotherapy in August 2021 for 12 weeks on a weekly basis and then 4 rounds of the heavier EC Chemotherapy every two weeks until 6th January 2022. In May I had my first round of surgery to take out the lump in my right breast, which was the size of a golf ball and the idea was for the chemo to shrink it so I could have a lumpectomy as opposed to a full mastectomy. I was also advised to have all my lymph nodes removed given more than 8 had apparently been affected but I didn’t want that and asked to have a “Sentinel Node Biopsy” done instead to make sure it was absolutely necessary. My fear was in getting lymphoedema later on down the line, which would have been a disaster for playing tennis! Amongst other things!!! The results were conclusive that I needed them all to be removed but I managed to persuade my surgeon to find a reputable plastic surgeon who would be willing to do a “lymph bypass surgery” on me as a preventative measure by hooking up my veins in my right arm to create a ‘fake’ lymph system that would reduce my chances of getting lymphoedema in the future. I had this done under Mr Roblin at St Thomas’s and was one of the first times Mr Kasem, my surgeon, had seen the procedure being done. And, so far so good!

I started a long course of radiotherapy 6 weeks after my second surgery which finished 8th August 2023 and had my first PET scan in November to assess how everything had settled down and whether or not there was any more cancer. Unfortunately, the doctors felt the scans revealed more cancer at the top of my spine in my back and I was advised that, after I returned from our Christmas trip to New Zealand, that I should undertake another aggressive round of radiotherapy in my back to remove the remaining cancer. Miracle of miracles happened just before Christmas when I received an email from the hospital saying they thought they’d got it wrong and that it was probably just a bit of arthritis instead. Best Christmas present ever!

Fast forward 6 months, I have been waiting for my next PET scan to confirm whether I truly am rid of this horrible and intrusive illness. The waiting…. It’s endless and it is something I’ll have to get used to for the rest of my life. But, finally, yesterday I received my results and, apart from a bit of a shadow below my chest cavity near my lung – which they think is scarring from the radiotherapy – I am ‘Cancer Free’. I will still have to have a CT scan (without contrast) to scan my chest area to be sure, but it’s good news at least so far.

People often ask me how I am – really? It’s strange because I don’t really think about it. I just get on with it. That whole year was so full on with changing my diet and taking shed loads of supplements to support my immune system, weekly hyperbaric oxygen therapy and infrared lamp treatments. I can’t believe it’s over. I remember my Oncologist saying “You’ll look back in a year and go, ‘goodness – where has that year gone? It was horrible but I’m now through it!” And, he’s absolutely right, although when I was in the midst of it all, I couldn’t imagine feeling that way or ever imagine it being over.

The fact of the matter is, that it’ll never be over, really. Annual scans, ongoing supportive supplement taking, watching what I eat (sometimes), regular vegetable juicing and consumption of probiotics, such as water kefir, are all now my new norm. All to just stop the buggar ever coming back!

So, do I feel any different? I guess emotionally I do. I do feel healthier too and, certainly stronger. My kids forge I had cancer and are so laid back about it that they even forget to ask me how my hospital appointments go. I guess that’s a good thing?

I can actually go for a couple of days and forget it all happened but it’s never really far from one’s mind, once you’ve gone through something like that. I live a normal life and have resumed many of my previous behaviours – such as drinking Prosecco, chocolate, carbs etc but I have mostly managed to stay off dairy, I fast for 13-16 hours daily and I keep up the supportive supplement taking.

I have put back two of the three stone I lost in weight when I first began treatment but I’m playing shed loads of tennis and have started back working out with weights with my friend, Nompi. It can’t be too bad as only last month, I won my first tennis singles and tennis mixed doubles tournament at my local club – The Old Wilsonians – and came away with two medals! A goal I had set myself at the beginning of 2023. Well, the goal was only to win one tournament – but I’m not going to say ‘no’ to two medals, am I????!!!!

The only thing I’d say has changed is I’m now on regular hormone blockers – Tamoxifen and another drug call Abemeciclib which are both given to me to help reduce the chances of the breast cancer returning, which could happen anytime in the future. Fortunately, my amazing nutritionist who has been monitoring me all the way along and encouraged me to do ‘gene testing’ to see how I store and remove certain toxins from my body. Luckily for me, I tolerate both drugs well so I haven’t really felt any major side effects other than some fatigue and some brain fog.

What I have noticed, however, and a bit more worryingly, is that I have been experiencing chronic lower back pain every morning upon waking – sometimes affecting me all the way later on in the day. Usually, however, movement helps it dissipate but I don’t like this daily pain. I can’t even touch my toes in the morning! I have to sit down to dry myself. It’s crazy – given how active I am. My husband, Hamish, was also experiencing some pain in his hips upon waking and we figured that maybe our expensive, new-ish mattress may be the culprit! So we went mattress shopping and found out that we are supposed to turn one’s mattress every month. So, unbeknownst to me, until this week, Hamish turned our mattress and guess what? I’ve noticed I’ve been sleeping a bit better and have less lower back pain in the morning! Yipppeeee! Also, I’ve agreed with my Oncologist, that I am going to stop having the 3 monthly leuprolin injections (to push me through menopause to work with the hormone blockers I’m taking) which apparently also have the ability to cause muscle pain. So let’s see if that also helps!

So, there you have it. I’m living life to the full. I’m a very lucky lady having a very supportive and loving husband and family. My friends have been nothing short of amazing and life is pretty good. It does help to always look for the positives and, for me, there are many – including starting up my Career Coaching Business again! Check out my website if you’re interested: http://www.ceciliagarnettcoaching.co.uk

So, that’s it from me, for now. Keep smiling and know that you can achieve most things if you put your mind to it. Much love to you all and thanks for reading. x

Happy Christmas News!

Well, I certainly didn’t think I’d be writing anytime soon but I just had to share the amazing news I received this morning by email.

We are now in New Zealand, it’s rained and it’s rained but today, even though we woke again to another rainy morning, the metaphorical sun shone all its glory when I received the following email from my breast cancer team at the PRUH…

Dear Cecilia,

I hope you are enjoying your holiday in New Zealand.

Dr Nathan has emailed us just now and he wanted us to pass a message on – 

‘A couple of the radiologists at Guys have been looking at Cecilia’s PET and MRI scan with regards to potentially giving her SABR. They feel that this is not a met (i.e cancer) and is in fact just some arthritic change.’ 

He wanted you to know this as soon as possible rather than waiting until you got back from New Zealand and to give you an early Christmas present.

If you have any questions, please do not hesitate to get in touch.

With Best Wishes

The best Christmas present ever! So I got my 6 month reprieve after all! I am finally cancer free! I know I can’t rest on my laurels but I can relax for 6 months! Yippeee! Yay! Hooray! Yeeesssssssss! Woo hoo! Whoop whoop! Back of the net! Get in!

Happy Christmas one and all and thank you for your ongoing and unfailing support. It has meant the world to me. xx

Not the news I’d hoped for…

This may not be my last blog after all…. Unfortunately, the MRI results came back showing a small amount of cancer in a bone in my back between my shoulders. All I know is that it’s bigger than 5mm and it’s still considered breast cancer, despite it being found in my back. Strictly speaking it is considered secondary cancer but my oncologist tells me this is a grey area and therefore they are treating it a bit like having to mop up the last of the breast cancer. To say I’m gutted, is an understatement. I won’t be able to get any travel insurance but at least they feel it can be treated. Their recommendation is for high level targeted radiotherapy when I return from New Zealand. Not great news but if you want to look for a positive it’s the best kind of shittiest news you can get!

Finally – My Scan Results…am I cancer free or not?

It feels like forever since I wrote my last blog. It was in fact 7th August, the week before we headed to our family summer holiday to Croatia. Fast forward 4 months and I find myself sitting at my kitchen table, 29th November 2022, the day before the results of my most recent mammogram and PET scans are presented to me. To say I’m a little bit nervous is a bit of an understatement. Who knows what they’ll tell me but I have to hope that I’ll be given some reprieve.

The last 4 months have been super busy. I really should learn better to reduce my levels of cortisol knowing how unhelpful it is to regularly function in this heightened state, albeit efficiently, it’s certainly not going to be effective long term. It’s work in progress. But my youngest has started Secondary School, I’ve relaunched my career coaching business, written some training and delivered it to my first set of “mum’s back to work” group, in my home. It has taken me weeks to write it, edit it and choose what kind and the number of exercises to include and put together suitable handouts. I am beyond proud but it’s been time consuming -but then again everything has been time consuming.

The lead up to our family trip to Croatia in August was so stressful, trying to get everything packed and prepared. I think it took as long as 4 days for both Hamish and me to finally settle in and relax. I’m not sure I really had any expectations for our time away but what was evident was that the whole end of treatment thing was very anti-climatic and I found myself dealing with a host of emotions that I had yet to process.

I’m not sure it was the wisest thing for a sun worshipper like me to stop radiotherapy just 7 days before heading off to the Mediterranean sun. I was never going to stay out of the sun. That would have been tantamount to torture for me! Factor 30 & 50 was slapped on vigorously, several times a day and, in particular, the places where I had been zapped. By the end of the two weeks the areas of my skin that had been exposed to the sun, where I had received radiotherapy treatment – namely my clavicle and my central chest area – were more speckled and looked like white sun spots. I really hope I haven’t damaged my skin. My right boob stayed firmly hidden and protected by my bikini – gone are the days when I would have gone topless in my 20s, especially now that I have a deformed booby! Not going to subject anyone to that sight anymore! All I could think about was “I just want to be normal” – whatever that means!

Upon my return from Croatia, I had agreed to start taking Tamoxifen – the hormone blocker for pre-menopausal women – on 29th August. It’s been 3 months and so far so good. Luckily for me, I haven’t put back on the extra weight I lost. I really don’t know why that is? Maybe it has something to do with the repurposed drugs I’m on – Metformin and LDN (low dose Naltrexone) – or the Berberine used to stabilise my blood sugar levels. I really don’t know. I certainly haven’t been eating as healthily as I should be doing. Increasingly the alcohol, sugar etc have crept back into my weekly diet. I’ve been trying to be good for so long, it’s become very boring. I have managed to stay off the dairy, drink only twice a week, we mostly buy organic and have been good with our water kefir but it’s been hard to stay 100% good. I’m finding it hard to motivate myself to make smoothies and to eat cruciferous vegetables daily. I’m still taking my 36 daily supplements religiously but I’m going to have to get better at reducing my sugar intake given how breast cancer loves to feed off sugar!

Having returned from holiday, I should have had some kind of sense of finality and relief that my invasive breast cancer treatment was over but I didn’t. I felt conflicted. I felt like I had climbed Mount Everest. The best way I can describe it, is that I’ve made the arduous and lengthy journey up Mount Everest and I’ve finally reached the summit. I am now standing at the top, looking down at the well-trodden path and the route I’ve taken to get here but instead of elation, I feel fear and dismay. For, although I’m at the top, I still have to make my back down the mountain. I know how long it took me to get to this point and that the journey down, whilst it may not be as hard as it was on the way up, it will be a long one and I now have to summon up the energy to take my first step back to a new life that will be filled, for the next 10 years, potentially, with checks and scans, hormone blockers, blood tests, injections to push me through menopause and all the possible side effects that may come with it. All with the hope that I won’t get a recurrence of breast cancer or develop cancer anywhere else in my body.

What I’ve come to learn, although it may sound quite negative, is that it is never going to be over. The next 10 years are mapped out for me in terms of medications and hormone blockers etc – all of which have multiple side effects – and potentially different challenges as my body ends up storing these toxins as they build up over the coming years. It’s not something I’m looking forward to. But, what’s the alternative? More cancer? Who knows. I can only do what I can do. The sooner I get comfortable or used to the knowledge that I’m always going to have to be careful, the sooner I may stop feeling cheated.

I’m sure plenty of cancer patients, like me, have completed their gruelling rounds of chemotherapy, radiotherapy and surgeries in the hope and expectation that if I can survive that, then I’m home free? But no. If you’re breast cancer, like mine, is hormonal, then there are years and years of hormone blocking pills that you are expected to take.

And then, when I went for my radiotherapy check up at Kings College at the beginning of September, the lovely doctor spoke nothing to me of my previous radiotherapy treatment and instead all about this new drug for hormonal breast cancer where it’s spread to the lymph nodes called Abemaciclib. More pills – twice a day, both on an empty stomach – once at the beginning and once at the end of the day. This drug’s magic power is that it is supposed to decrease the chances of recurrence by about an extra 10%, in my case, but there are about 10 different side effects that occur in more than 30% of patients including diarrhea, low blood count, abdominal pain, increase of blood clots etc. So I spent a whole month deliberating as to whether or not to take it because it’s another pill on top of my already heavy supplement list.

I ended up bringing my oncologist’s meeting with Dr Nathan forward to the beginning of October to discuss this new drug only to be told that it’s for post menopausal women! Which basically means, I would need the monthly zoladex injections which I had originally politely declined. These injections are important because they will help to push me through menopause faster and keep me there so that the Abemaciclib does it’s job properly but, unfortunately, that also means all the symptoms that go with it. The thing is, I just remember being told that the zoladex injections were so painful and they, too, are not without their side effects! Joy of joys!

Big dilemma but Dr Nathan was patient with me. I had thought it was going to be a short visit but nearly 45 minutes later we were still debating the pros and cons of going on this Abemaciclib drug. He ended up showing me the graph and data around its success (see photo). He also shared with me that rather than having to take monthly zoladex injections, there are 3 monthly injections called Leuprorelin which are equivalent to the monthly zoladex/goserelin ones that he would give me as an alternative – basically making it 4 times a year rather than 12 times a year. So I began at the beginning of November. I’m super lucky. So far so good. The zoladex wasn’t too painful – best to take it sitting up than lying down. I do find, in addition, that I am not sleeping as well, and I have more hot flashes – where all of a sudden I need to strip off down to a teeshirt! Fortunately, I haven’t had to take off any more than that – yet!!! I have also noticed during mid Oct – Nov I started to experience some pain in my upper right arm. A bit like a dull ache, how I would imagine what it might feel like if someone had punched me several times in the same spot and given me a dead arm. It’s my tennis arm! Really hope it isn’t permanent!

I managed to book in my mammogram and PET scans so that my results are in before we head to New Zealand at Christmas but what a palava that was! I had to book in my PET scan 3 times before I finally had the scan! The first time was because they booked me in too early. You need at least 12 weeks between the last lot of radio or chemo treatment and my first scan was booked 8 weeks in! It’s only an issue because you have to fast for 6 hours and only drink water and because each of my appointments wasn’t until 3 or 4pm that meant I didn’t eat or drink anything from the night before. Fasting is supposed to lower the blood sugar level in the body where eating beforehand tends to spike your glucose levels and produce inaccurate results. During the PET scan you are injected with a glucose radioactive substance that needs to take an hour to move through your body to identify areas of inflammation – which is historically associated with cancer. Because it’s radioactive, you can’t be in the vicinity of children under 16 for 8 hours afterwards – so there’s a bit of planning that needs to happen when it comes to after school activities and dinner preparation.

The second time I was sent away because I had admitted to playing a game of tennis that morning and ‘strenuous exercise’ is not permitted before a PET scan. Something to do with the fact that your muscles would have been working overtime and therefore are still active and so would absorb the glucose solution which could show up areas of inflammation and create a false reading and a potential cancer misdiagnosis. All fair enough but very annoying.

After all that, it’s not an exact science though because a PET scan picks up areas of mass no smaller than 5mm so given cancer cells are microscopic, it’s not always accurate.. Third time lucky, the PET scan went without hitch and I get my results tomorrow.

I need these results to be good not only for my piece of mind but also so that I can buy travel insurance to New Zealand that isn’t going to require me to take out another mortgage! It’s crazy that once you’ve completed all your treatments you still have more hurdles to jump over.

I’m heading to the hospital tomorrow for my results on my own because Hamish is presenting at a conference and I’m full of cold so don’t want to spread any germs unnecessarily. But I’ll be on my own, and that frightens me.

It’s taken me two days to have the strength, both mentally and physically to finish writing my blog. I’ve been very unwell with an horrendous cold and chesty cough. I normally can shift these things in a matter of a couple of days but because the hormone blockers I am on have the propensity to lower your white blood cell count i.e lowering your immune system, I have not found it easy to fight it off in the slightest.

Meanwhile, life doesn’t stop does it? I’ve still got kids to look after, my new business, the house, having to feed the family. I can’t just pack up and go to bed. So, when I went to meet Dr Mark Nathan, it was no surprise I was a bit emotional. Unfortunately, they weren’t the results I was hoping for…. They found two more areas of inflammation that I now need to be booked in for further scans. An ultrasound to check an area in my neck and an MRI to check a bone in the top of my back. To say I was gutted, is an understatement. I cried and cried on the way back to the car park – not caring who saw me. Tears rolling down my face, the fear of what this could mean for me. I had just wanted 6 months off from worrying. It’s not fair. I know I sound like a petulant child but I don’t care. It’s not fair! And I’ve got this rubbish cold on top of it all!

Receiving this news and the fact that I was feeling particularly under the weather, didn’t help my state of mind but, I got some better news the following day when the hospital had invited me in for the ultrasound. I was totally bricking it! They explained that if it looked sinister then they would be taking a biopsy of my neck there and then but, fortunately, it wasn’t necessary because my neck is “normal”. Yay! No biopsy and my neck is normal!!!! Just need my back to be normal next Tuesday. Keep me in your prayers….

I should add, I don’t plan on writing further blogs at this stage. I’m not sure how useful it would be to just detail my ongoing journey of emotions but I’ll keep the blog open for people to read, share and learn from. That’s all I wanted to do. To help people who had been diagnosed with cancer. Remember there is always hope and there is so much support out there. Please don’t ever suffer on your own. I’m always just an email or a phone call away. It’s a bumpy ride of emotions and you should never have to walk this walk without company. Please take care of yourselves and your loved ones. Thanks for all your support along the way.

Cecilia x

Debrief with Surgeon

Apologies about the photo but I thought some of you might like to see the scar post op. It’s not a bad case of hairy arm pits – I promise! I actually braved having my pits waxed for the first time before surgery to avoid this exact problems – that was a super painful experience but I might be tempted to do it again! The black bits are the stitches, the glue and the build up of dirt from two weeks of not being allowed to wash that area – gross I know. I’m quite pleased with the result, especially as they didn’t cut into my armpit as originally planned.

Most of you will know that this is the second lot of surgery I’ve had this year. My first being on March 18th – to have a lumpectomy and a sentinel node biopsy, where they only took out two nodes. My second lot of surgery, on the 19th May, was as a result of finding macro metastatic cancer in one of the two lymph nodes they originally removed. And, in ordinary speak, that macro metastatic cancer wasn’t a good thing! Well when ‘macro’ and ‘cancer’ are put together you realise that it ain’t gonna be good. So, that led to the most recent surgery which was a hard pill to swallow as it meant I agreed to have all my lymph nodes under my right arm pit removed – something you may remember that I was dead against initially – for fear of lymphoedema. But, I had managed to persuade the hospital powers that be that I should also have lymphatic anastamosis – or a lymph bypass surgery too.

How am I coping? Well, not too badly, actually. Thanks for asking. After the drain had been removed from under my right arm – a 10cm piece of plastic tubing that had been inserted into my side, things definitely started to improve. I had no idea how much pain I was in during the 41/2 days that I had it in for. I feel like a bit of a moaner given how I know some people have had drains in for as long as 2 weeks and not just one drain, some have had two! Imagine, two plastic bottles, connected to lengthened plastic tubing that you carry about with you like two dead albatrosses around your neck. Well, I only had the one, but that was one albatross I was exceedingly happy to get rid of. I hadn’t realised that the tubing inside had been potentially rubbing and possibly catching some nerves as I moved about. No wonder I had shooting pains up and down my arm and shoulder.

This last week has gone quite quickly. I wasn’t able to drive so have been walking everywhere – Freddy to school and back, Freddy to tennis, walking down to the shops. I have been doing my arm exercises but not much else. I can’t seem to get motivated to do leg or lower body exercises. I’m going to have to it if I am not to loose too much muscle and fitness for when I return to the tennis court. But, I’m just not in the mood. I hate not being fully mobile.

The first lot of nurses who came to tape the drain back in place, so as not to have it “flapping” about, had inadvertently taped me up over the glue they had used to keep the stitches in place. So when it came to taking the dressing off, they couldn’t remove the dressing completely and had to cut around it, leaving a bit still stuck on to the glue, otherwise they would have pulled the stitches out!

The following week, sans drain, has definitely made an improvement when sleeping. I’m a bit more mobile and can turn a bit, but still not sleep properly on my right side yet. I’m not allowed to wash the area or submerge it in water so no showers for a week and no baths for 3 weeks. Washing my hair has certainly been a challenge but fortunately we have one of those showers that has an overhead shower as well as a hand-held one so I just stuck my head under the hand held one and washed my hair with my left hand. One of the benefits of having short hair now!

I have to admit it hasn’t been pleasant and I find not being able to drive the last 2 weeks challenging but it is what it is. I just want to get back to normal, I just want to be in control of my life again. I can get a bit impatient sometimes, if you haven’t already noticed!

My wonderful parents-in-law arrived from New Zealand last Sunday. The kids and I haven’t seen them for just over 2.5 years and they are here to stay until the end of July. They have had a very tough last couple of years with the deterioration of their intellectually handicapped son, Paul – Hamish’s brother. Both they and Paul have had some incredibly difficult times and has resulted in Paul having to go back into care after a pretty could couple of years looking after him by themselves. However, with Covid and the challenges with lack of healthcare and social services support in New Zealand they have had to fight their way through the system and find a safe way to get Paul back into care, surrounded by people Paul likes and knows. It’s been a very difficult, uphill battle for them but Fran told me that, apparently, reading my blog from New Zealand had helped her find the fight in her/them to call the police and get the right authorities in place to help them and Paulie so that he could get the proper care he needed and so that Fran and Barry were safe.

Fran told me that she has several friends of hers and Barry’s who follow my blog in NZ, Australia and South Africa. Friends who have battled with their own cancer diagnosis and treatments and others who have had debilitating illnesses that have gleaned some comfort in what I have been sharing. I honestly had no idea. I feel very privileged but also I feel very responsible about the information I’m sharing.

If there’s one thing I’ve learned throughout this whole journey is that no two cancers are the same. Even within breast cancer there are several different kinds – whether your breast cancer is hormonal or not (PR and ER positive), whether yours is ductal or lobular (mine is ductal), whether yours is HER2 negative or positive (mine is negative). All of these differences determine what kind of treatments are on offer and which ones will better manage your cancer. Also whether you have surgery or chemo first. So, please, if you are reading this, my cancer is very specific to my situation so it’s important to find out as much about yours and what is on offer. The good news is that there is so much information readily available out there in the form of facebook groups like:

  1. Breast Cancer Integrative Healing {Integrative Tribe}
  2. Healing Cancer Study Support Group
  3. Jane McLelland Off Label Drugs for Cancer
  4. Patient Led Oncology Trials Group
  5. BRiC private group (Building Resilience in Breast Cancer)

And there will be others with pancreatic cancer, bowel cancer, Stage 4 and Terminal cancer etc. Just look them up and join. Even if you don’t use the information for your own benefit, reading other people’s stories can really help. Don’t suffer alone. There is a wealth of information out there. Make sure you source information that is country specific, because what is available in the Uk will be different to NZ or USA etc.

The other major piece of advice that Fran, my mother-in-law, has specifically benefited from, is that you don’t always have to follow the path the doctors lay out for you. You have options. You do need to do your research and you need to be brave and strong to present your case but the more you are in control of your treatment, the more empowered you may feel.

I have had to fight every step of the way. I fought my Terminal, Stage 4 diagnosis – not believing that they had it right. I was correct – the Doctor who moved me to Stage 4 and pulled all my future cancer treatment and surgery never bothered to check my notes and didn’t realise the jelly fish sting I had back in August was responsible for the inflammation in my groin, not more cancer, as he had incorrectly assumed. I’m still Stage 3 but it allowed me to have access to treatment and surgery again.

I went against the advice of the doctors and nurses and stopped taking my filgrastim injections because of the 3 hour spasms I received as a result of taking them, consecutively daily, 6 days post EC Chemo. The doctors were worried my white cell count would dip too low and I would be at risk of infection. I knew, however, the amount of supplements and my diet was helping me to keep my neutrophils high and my white cell count stable so I made the calculated decision not to inject myself any further.

I have had to fight not to have all my lymph nodes removed, and they listened to me and we came to a compromise. I had to have all my lymph nodes removed in the end but I negotiated to have Lymphatic Anastamosis, or lymph bypass surgery, micro surgery that is only usually conducted on patients after they have contracted lymphoedema rather than preventatively, as in my case.

So, here I am, nearly 11 months down the line. I still have more treatment but not clear what that will look like just yet. I have been told that I need some endocrine treatment which I think is to deal with my hormones to prevent the breast cancer coming back. There are various different types of hormone treatment. One that many women get put on is Tamoxifen. I have already promised myself that I will not agree to go on this pill. There are so many side effects and my thinking, having done my genome test and being a little more confident that my breast cancer may have resulted from a build up 4OHE which I produce too much of, which results in a toxic build up of quinones that I can’t eliminate efficiently from my body. The way to combat this is to eat shed loads of cruciferous vegetables and take a broccoli supplement. This should reduce the amount of 4OHE I produce but will also speed up the elimination of quinones from my body. So, my thinking is, knowing that, will that be enough for me to be able to manage without having a hormone pill for the rest of my life, or at least one that doesn’t have the side effects that so many women experience from Tamoxifen?

I met with my surgeon on Wednesday and took Fran with me. He informed me that he took out all my lymph nodes under my right arm of which there were 6. “Only 6?” I questioned (you can have as many as 40). Apparently because of the chemo, my lymph nodes had fused and what he pulled out looked like 6 nodes. Of those 6 one showed macro metastatic cancer and 2 showed tiny tumor cells – so all in all it was a good thing that they’ve been taken out now.

My surgeon was very pleased with how it went, proudly telling me “I did a very smart axillary node dissection!” He explained he had found two good veins for the plastic surgery team to hook up to the lymphatic drainage system and he also managed to preserve all my nerves – so I should get feeling back under my arm eventually.

He has basically put a date in the diary to see me again in December after I have my PET scan to assess how the radiotherapy has gone and a follow up mammogram. This scan needs to be a good 6 weeks after the end of radiotherapy because radiation causes trauma to the body and that shows up in many ways but also through inflammation. If the PET scan shows up inflammation, it is often associated with cancer. So that I am not misdiagnosed with more cancer, it’s important to let any inflammation, as a result of radiation, be gone before I have my PET scan.

My next appointment is back with my original oncologist on 15th June when I’m told I’ll find out more about what kind of further treatment I am likely to need. It feels like I’ve turned a corner and I may see the light shining at the end of the tunnel.