Day 290

Platinum Chemo No.1

Back to the old routine.  The 7.41am to Truro and it arrives early so I walk the two miles to the hospital because I can.  Caz is there to discuss more points on the Stem Cell procedure and get me to sign the consent forms for todays chemo and the following three cycles.  I wrote what follows on the train…

There’s 12 months ahead of complex, testing and fairly high risk treatment – its a rather shocking prospect and I’m wondering what would happen if I refused this. What would the NHS offer me after that? Could I access The Bucket and its untested drugs? Who would sanction that and how would I find out? Or would I be simply be offered palliative care to ease the complications of dying from the cancer that is attacking me?  If I was now at the end of possible treatment options what would I be doing?  Adopting the Gerson Diet? The Budwig Diet? Fly off to South America for spiritual healing?

Part of me wishes to do these other things, wishes that the last scan had shown little change in the extent of the Lymphoma which might have allowed me a breathing space in which to monitor and attempt to shift the cancer by diet, exercise, meditation, breathing… But the speed of its spread is sobering, frightening and I don’t feel gives me much room for manoeuvre.  The potential of SCT to offer a cure has a strong pull despite and because of the 50:50 success rate, and so is having the care and intelligence of a qualified medical team trying their best for you.  Rejecting this and having to decide which alternative therapy to trust one’s life to I find very difficult to countenance.  I guess that’s why for most people the alternative therapies are a last resort, when the medical teams say there are no more options.  However by then many of the sufferers are in pretty bad shape having battled with the cancer itself and the effects of conventional treatment, so their chances of successful outcomes with the alternatives must be reduced.  It’s not easy processing this stuff.

Anyway it is with all this in my head that I see Caz my MacMillan Nurse.  We have a good conversation before I sign the consent form. She explains that most of the people going into SCT are like me – they’ve failed to respond to previous chemo treatment immediately and move on to SCT as soon as possible. Of this group my odds are pretty good in that I’m young(ish), fit and healthy with no other ailments or complications so I’m in good shape to get through it.  The two months of chemo I start today would stand alone from the SCT and in theory one could stop treatment after that and again wait and see.  However the advice would be to continue onto SCT because the cancer has already demonstrated its ability to mutate rapidly and there is a danger of it becoming even more resistant. Hitting it with the bomb of Conditioning Chemo is the best bet at this point.  Again in theory I can halt the SCT process right up to the moment of receiving the Conditioning Chemo.

We also discuss some of the physiological aspects of SCT.  The fact that the Conditioning Chemo pretty much flat-lines you and the graft of stem cells brings you back – in fact the hospital calls it a ‘new beginning’ and starts its own count: Day +1 etc. It’s like you’re being re-born.  Then there is the complexity of asking a sibling for a donation of his stem cells; accepting them, using them, living by them but recognising that I might also be fighting with them and failing (Graft Verses Host Disease).  Failing to live.  How will that feel for my brother?

Then I see Teresa Batchelor who is my Transplant Coordinator and we discuss procedures some more, and she explains the process of tissue testing and matching, confirming that my cousin Matthew will be no more likely to make a good match than a complete stranger such is the mixing of genes and blood types two steps removed.

So then I’m back in the Headland Unit and a short wait during which time my friend Simone arrives for her dose, and she has a retired GP friend of hers accompanying her who is interesting and interested.  In fact she came to the bonfire last night for a while so now we talk cancer talk and try to get our heads around some of the contradictions inherent in much alternative and complimentary advice that’s out there.  After a while we are called in together by chance and sit beside each other, getting cooked.  It’s good to have some company actually, particularly as its participatory company not just a passive visitor – I’ve not wanted someone sitting with me during this process where you feel so helpless with tubes pumping toxins in, but with Sim plugged in its different.  She’s done before me and leaves me in the good hands of the nurses who are as always excellent, cool and calm.

Simon picks me up on his way back from Mum and Dads and drives me home.  Ali and Milli come by and make some supper which I can taste and enjoy, and we watch an uplifting movie called ‘Marvellous’ about the extraordinary life of Neil Baldwin, a man with learning difficulties and an incredible gift for communication, and then walk down to Battery Rocks to see the sea and then just before midnight have a tiny dram of whisky and a glass of cold almond milk, like a health food Bailey’s, and watch some scattered fire works out the window welcome in the New Year which is all rather good.  But later the big dose of injected steroids makes sleep impossible, like I’m jacked up on caffiene and that rather horrible viagra trick gives me nightmares of weird sex and confusion.  Get me out of here…my head’s aching and spinning; these are heavy chemicals.  But sleep does come, it does.