Day 332

Green light.

Well, positive news in that the last PET/CT scan result is good – the lymphoma has again been knocked back and apart form one probably spurious hot spot in my neck the other recorded avid nodes in neck chest and lungs have reduced beyond the visible. Of course one remains cautious as I’ve been here before with the first treatment and the crafty cancer simply mutated and came back with renewed vigour.

Anyway, what it means is that I’m on the program still, starting the final cycle of GDP chemo this afternoon. Dr Kruger and I have a good and long chat. He’s thorough and clear about the stem cell options ahead and their risks. He lowers expectations for a cure below 50% for my own stem cells but points out we are in uncharted territory to a certain extent – there is not enough data and not comparative trials at this end of the treatment spectrum.

We also discuss my decision to approach Kings a College Hospital independently and not consult with him first. It’s not a big upset but I could have made my enquires through Treliske.  I don’t know, perhaps it’s partly professional pride, but in my defence I had voiced my disquiet about the split treatment involving Derriford and the dislocations involved and the team didn’t come back to me with any direct answers.  There’s no doubting Dr Marcus’s speciality in Hodgkins Lymphoma or that the quality of transplant treatment at Kings is as high as either Barts or UCL where Treliske has habitually sent transplant patients in the past.  It’s fine – full support all round I think.

As for news on sibling donor transplant tissue match, well at the meeting we are two down one to go. And to cut out the suspense I heard yesterday that non of my brothers are a match. So there will be a search on the global donor database, but I suspect it’s a needle in a haystack.  In some ways I’m relieved.  I’ve not felt happy in myself about the donor transplant.  Set aside the 1 in 5 chance of procedural mortality and if the transplant is successful a perhaps 50% chance of cure, there are also the emotional and psychological effects of receiving tissue from a known person. It’s a deep thing; both to give and receive – beautiful on one hand but fraught too when the risks are so high. How to feel if, as a donor, your tissues attack and kill the recipient? It’s not a simple choice.

Anyway, we’re past that stage and beyond the need to discuss it as a family.  I’m on my own with it and that’s fine by me.  It’s my body, and I’m doing the best I can for it.  I’m keeping an eye on the treatments being proposed and a weather eye on alternatives that may be in the pipeline – new treatment techniques and drug developments and my hope is that Dr Marcus can advise on this clearly if and when things develop.

I’m also doing my best for myself with ongoing improvements and plans for nutrition, diet, physical, emotional and mental health.  Things are coming together. The move to London for treatment is going to be good I feel. I have a strong and growing crew of helpers – old friends of 15, 20 and 30 years ago who are there like yesterday.  There’s something in those university years and in the first five years of my immersion in the London art world that has made lasting deep friendships that just remain; perhaps dormant for long periods at times and then there as fresh and right as ever.  This is a special thing.  And of course I have my homies here in Penzance too, but because of close proximity I think it’s harder somehow.  I’m aware I’ve been different here with people – I came to Penzance to escape and spend a lot of time doing my own thing, frequently on my own. Friendships have often been lighter and I’m happy with that.

So, chemo day.  Caz has made great effort to sort out the timings and does so again in the morning.  I do my bit arriving early to get my bloods done and she moves my clinic with Dr K forward an hour, the chemicals are on order already and she reserves a chair for me at the Headland unit at 12.30.  I check in with them and they think they’ll be ready by 1.15pm so I go to the canteen and eat a good lunch filling with hollowness with baked potato and Alexandra’s vegan seaweed rolls. Yum!

Then back at the Chemo unit a short wait and I’m taken not to a chair but to a side room on my own. Uh oh. I know what’s coming. They all know what a fuss I made last time and it’s lovely that they are making it special for me but I feel uneasy.  The masterful Yoda is there running my treatment and she’s so sweet, saying she knows how I hate being hooked up, my words from my blog of course, and I try to explain that I don’t hate it but it can be hard sometimes and I know that they have saved my life with this treatment.  In fact it’s rather wonderful to be on a bed in a quiet room, and I listen at last to the hypnotic music of Nils Fram, the album ‘Felt’, a present from Mandy at Jam in Falmouth.  Beautiful and I drift in and out of sleep, occasionally woken by a nurse but sometimes they just change the drip bags and let me sleep. I’ve been exhausted and those snatches of sleep are delicious.  Thank you all.

Si picks me up and Diana is making some supper for us at home tonight. And later a good and long chat with Simon, not about me but about him. I hope it’s helpful, but I’m wired on steroids again of course am a bit unstoppable.  Poor lad, too kind to tell me to shut up!  Sorry Simon.