Monday 26 June 2023


You know she's waiting, anticipating, things she may never possess
Try a Little Tenderness - Campbell, Connolly and Woods *

I have a conflicted relationship with Dialm right now. Reflective of my desire to move on from the recent past. There are a several posts currently in draft that I could share, but I can’t be bothered to get my thoughts in order enough to finish the job. It’s entirely possible they will remain in that form forever. You won’t have missed much, so don’t worry. 

I’m in that peculiar period where recovery merges back into the mundane. I’m increasingly unencumbered by trailing difficulties from hospitalisation. I still have pain in my feet. (A doctor friend told me that post-ICU neuralgia is a thing. But it’s one of those things that no-one warns you about. You get to discover for yourself.) Increasing mobility brings with it the ability to exert more muscles and consequently hurt more muscles, so I’m still living with that process of evolving capability and accompanying aches and pains - currently manifesting as stiff knees. But, knees and toes, it’s marginal stuff, really. Nor am I overly afflicted by side effects from medication. Three doses in to my renewed treatment, I’ve barely noticed feeling fluey at all, this month. And I haven’t been ill (though I’ve no way of knowing if that is anything more than luck; no sense of the ongoing level of risk).

I’m rapidly distancing myself from the last year, emotionally. It’s receding into being a historic anecdote, rather than a present tense experience. Whatever way one interrogates April 2022 to April 2023, for me it was mostly about dealing with myeloma: plasmacytomas; nerve compression; cytokines; radiotherapy; and infection. For different reasons, I spent both my birthday and Christmas - six months apart - in hospital beds. 2023 feels like a year in which I can, by contrast, live. It was my (50th) birthday this month, which I’ve been able to enjoy in the form of several parties and nights out. I think Marisa notices, almost more than I do, how much of this I’ve missed out on, and been missing from. It’s good to be back.

We went camping with my extended family last weekend (an annual highlight, though on the list of things I was too ill to participate in last year). What with that and the parties, I’ve caught up with lots of people who care about me, but whom I hadn’t seen recently. I’ll be glad when the love bombing is all over, to be honest. I remember in the early days of my myeloma diagnosis, being very troubled about the distress my illness can cause to other people; feeling a level of responsibility for other people’s feelings. Empirically, that’s absurd, and the longer I live with myeloma, the less I react in that way. The response is supplanted, to an extent, by a strange possessiveness. That my tribulations are mine and mine alone. A tinge of resentment at other people parking the tanks of their emotions on the lawn of my life! It’s not about you! An entirely ungrateful way for me to look at it, I know. I’m not proud of myself for feeling that way. The sooner it is all just history, now, the better for us all.

So excuse the detachment. Here’s the facts. My myeloma remains invisible. The maintenance treatment continues uneventfully, as does the IVIG. I had a bone marrow biopsy this morning. I’ve lost count, but I’m definitely into double figures by now. And while I may never learn to love the BoMB **, this one was unremarkable, almost boring. It will enable a more definite statement of my status. Hopefully, to confirm my myeloma can’t be detected.

And yes, I hit 50, which I honestly didn’t imagine I would. I’m increasingly cavalier in permitting myself to imagine being 60 one day, rather than constantly talk down my own prognosis. I can’t be bothered, any more, to waste my time worrying about what may be ahead. Today is good enough

* Try a Little Tenderness is the opening theme of Dr Strangelove Or How I Learned to Stop Worrying and Love the Bomb

** I have decided that BoMB is a good benchmark against which to measure other myeloma indignities. Worse than a BoMB? Or not as bad? It’s certainly more meaningful than the utterly arbitrary “scale of 1 to 10” stuff. Quite a few things, this last year, met the criterion of “worse than a BoMB”