About 10 years ago a group of us were having dinner at a friend’s house. For dessert we were each served a very nice chocolate mousse in a glass. About half way through the course there was a pause as somebody (they know who they are) remarked, in a slightly unkind tone, how odd it was that everybody had eaten their mousse in one way, but my sister Kirsten and I had done something entirely different. Everybody else had worked their way methodically down their pudding whereas my sister and I had created a kind of mine shaft through the mousse in a frantic dash to the bottom of the glass. Everybody else’s sweet approach had been horizontal, whereas my sister and I had taken the vertical route. This raised the question: was this nature, nurture, torture or just pure greed? I don’t think seconds were available so we were wasting our time if we thought that our mousse devouring was going to lead to a second glass and I’m not even sure there’s any evidence to suggest that the quickest way to eat mousse is to tunnel through it. So many unanswered questions….
It seems relevant at the moment, because I’m in the fortunate position of having a sibling who’s a tissue match for my stem cell transplant. The chances of having a sibling match are only one in four, so I’ve been rather lucky (only having one sibling) and having the familial cells improves my chances of survival somewhat.
Back in the present I’ve just had number 8 out of the original 9 Nivolumab chemo sessions and all continues to go according to plan. Last week Katie, my wife, and I had our first consultation with the stem cell transplant team. That was a sobering, but still positive, experience. We were offered a choice of treatment going forward, which really represented no choice at all: carry on with the current chemo in the hope that it will hold the cancer at bay or go for the allograft stem cell transplant, which carries a degree of risk, but offers a cure. I can’t escape the fact, no matter how small the chances are, that I might not even make it through the treatment. And yet, I’m so convinced I’ll beat this that I don’t really dwell on mortality or statistics. In fact, a week on from the consultation my main concerns are 1. How quickly can I get back to work? 2. Can I beat the marker for getting back to work set down by previous patients? (Which is admittedly tragically competitive, but there you go, you need targets.) and 3. I’ve got to have another bloody bone marrow biopsy – not a particularly nice experience. The only real emotion I showed in the consultation was in response to the news regarding the biopsy. A response which could be regarded as cowardly or a bit moany. Katie’s view that ‘in the wider scheme of things’ it actually isn’t that big a deal is probably correct. The fact that I was hobbling around for about 4 days after the last one and had to drive home with a dead arse are, perhaps, beside the point when you’re engaged in a battle for your very existence.
The consultant and technical nurse were both great, communicated clearly and were very considerate and approachable. Nothing got sugar-coated, which was fine by me. If the PET Scan shows a continued good response to the Nivolumab and I pass a series of medical tests then we have a green light for the stem cell transplant, sometime in the late Autumn. The medics have burst my bubble a couple of times in the past week. As I’m over 40 I’ll probably be having the geriatric lower dosage chemo before the stem cell transplant rather than the young, hip high dosage stuff (presumably you only get that if you have a beard and live in Hoxton and are quite a way short of your 40th birthday). It turns out that my weight gain, which I was quite pleased by as it represented a bit of a return to normality and some kind of evidence that the treatment was working, has sort of floated past the ‘normality’ stage to the ‘if-it-carries-on-we’ll-need-to-up-your-dosage-you-fat-bastard’ point.
My sister will be seen by a separate team for ethical reasons and, if she’s ok with everything, we can get on with getting cured. I’ll be in hospital for 5 or 6 weeks (which will be a nice break for Katie – every dark cloud….) and will have weekly follow up appointments for 3 months afterwards. The key difference to the autograft is the threat of graft versus host disease, which is a result of ‘foreign cells’ not reacting very well with the host’s organs. Graft versus host disease can be fatal and to keep it at bay the doctors will administer immune suppressants for three months after the transplant. After that it’ll just be a case of getting back to normal as quickly as possible.
And that’s where the chocolate mousse tests comes in. According to the consultant a sibling match works at a deeper level than just the tissue level. Unofficially I’m calling this the ‘Pudding Stratum’ and will be writing something for the Lancet once all of the dull chemical stuff is out of the way. After all, if we wield a spoon the same way and like to inhale our chocolate desserts then we must be pretty similar and that can only be a good thing.