Yesterday was the third anniversary of my stem cell transplant. This year’s card was more of a story book than a card …
With the Covid-19 pandemic still raging and my response to the vaccine being uncertain (I’ve had recent positive and negative antibody tests), I’m being extremely cautious about the outside world. This means I’m still working from home and probably getting out no more than a couple of times a week – the vast majority of events being outdoors.
The pandemic and all this time at home has had a positive side. I’ve been able to finally repair a Commodore VIC 20 that I bought some years ago for £2.19. Bargain! I have, however, spent rather more on socketing and replacing the faulty chips.
All this work obviously needed an investment in a new soldering and desoldering station. And a Penultimate+ cartridge and disk drive emulator from ‘the future was 8 bit‘. (The disk drive emulator works on my Commodore 64 which may also have been recently acquired … I am nothing if not frugal with my hobbies).
But I’m still rubbish at gaming.
The Sharps have also been getting some love and attention. You can find my ramblings about a ‘Moonlander’ game that I wrote over on my other blog.
And where would I be without Gnu? (Richer, probably, but with even more time and money to spend on ‘smelly old computers’). Later this week I’m joining the Taffia’s Fish and Chip Run from Chepstow to Aberdyfi. Although it takes place on Saturday, I’ve taken Friday and Monday off work so that I can beat off the increasing effects of fatigue I’m feeling these days. I’ll be revisiting the hotel near Chepstow that Jane and I had our wedding reception at 30-something years ago for Friday evening. Saturday will be a one-way trip – a 280 mile epic is well outside of my (safe) driving abilities in a single day now. I’m looking forward to heading up to Gnu’s spiritual home – Portmerion – from near Aberdyfi on Sunday. A leisurely drive back to Derby on Monday will complete the travelogue.
Wednesday wasn’t supposed to turn out like it did. I’d already made work commitments and personal plans for 2018. A few days driving around the Border 500. A trip to the Edinburgh Fringe. A holiday in Cyprus. Theatre trips. A little bit of politics. It’s all going to have to wait for 2019 instead.
While the lumps on the left hand side of my neck still look much like they did at the end of last year, the right hand side has really caught up. There was nothing very visible in November even though there was clearly some activity on the PET/CT scan. Today the right hand side of my neck has lymph nodes that rival the left hand side for size. The left hand side took nearly four years to get there. The right hand side has taken just a few weeks. The beast is awake.
What’s next is more tests, more scans – and a go / no go decision for chemotherapy to be made on February 14th. But I know that it will be go, unless something very unusual happens.
I’ll be working my way through the cocktail of drugs for treating Mantle Cell Lymphoma known as the Nordic Protocol. Six cycles of chemotherapy three weeks apart to start with, probably followed by a stem cell transplant.
It’s said that knowledge is power. I know what’s about to come next. I know what the statistics say (I have a 97% chance of responding to treatment. I have a 100% chance of losing my hair during the process). I know people who have lived well for many years after treatment for MCL. But I also know that there is no cure (yet) for this type of lymphoma. I know all these things, but I haven’t experienced them yet. I think that experience gives you power, not knowledge.
I’m trying to balance optimism with realism – hoping for the best but making some prudent contingency plans. It feels tough, I’m concerned about what’s going to happen, I’m worried about my family and friends, but I don’t feel helpless or terrified.
Today’s been a beautiful, sunny, cold day in Derbyshire. I took the beast for a drive in my beast. I laughed at his terror as I drove along the road underneath the Carsington Dam.