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.