Monday 28 November 2022


I find it hard to tell you, 'cos I find it hard to take
Mad World - Tears For Fears

Progress, tinged with flu

I'm due another dose this afternoon. I thought I'd let you know how the last month has been. Overall, it's all good. My light chains are still flat on the floor - 0.6 at the last test - and the rest of my blood count is getting closer and closer to "normal". Even my haemoglobin level is normal today.

I had a chat with my counsellor a couple of weeks ago. In the weeks between arranging the conversation and actually having it, life had got a whole lot easier and I found myself describing recent challenges in an almost light hearted way. It’s not the first time I’ve been aware of the extremes of mood that my myeloma brings. The lows are very low. And the highs can feel manic. Our conversation made me aware of how bad things were, very recently. I don’t think we’re built to remember pain and misery - so it’s sometimes hard for me to notice changes and progress in myself. Marisa assured me it’s pretty obvious from the outside. Basically, things are much better than they were.

When things are good, I immediately feel a fraud for having moaned when they were bad. Marisa and I had a very interesting conversation recently where I discovered she experiences those thoughts much the same as I do. It's horrific, terrifying, terminal, right up until the moment it's not. There's something distinct about myeloma, I think, in its wide range of unpredictable symptoms, the fact that treatment is always overlaid with doomy fears that it won't work and/or that something even more evil is brewing up, and the underlying certainty that you'll never actually be free of it. It's a potent combination of fears and challenges that makes the bad times so very bad. It's good to feel I'm out of that space. It's progress.

That said, treatment still comes with side effects, and my consultant thinks what I'm experiencing now is probably what I'll experience while I continue taking elranatamab. It's like coming down with flu every day. It has got easier, the last couple of months, but it hasn't gone away. Even over the last few days, at the furthest point from dosing, I've consumed a lot of paracetamol and had more than one occasion to hide under a blanket. So, unlike my recovery from stem cell transplants, getting better this time has not been accompanied by the day-on-day sensation of feeling weller and stronger. It makes the whole thing more of a plod. But I do feel a whole lot better than I did. I went back to work two weeks ago, which is wonderful - something to do. Though in the short term I'm only going to be able to work the "good" weeks. In fact, I think in general I'm going to be able to live the "good" weeks, and just do my best to get through the others without too much whinging!

The documentary “War in the Blood” is back on iplayer; worth watching if you missed it last time (though not easy viewing). It was interesting for me to watch again. When I saw it before, I could recognise a lot of my own experience in it, but the parallels are even closer now, as my current treatment is very similar to CAR-T therapy trials. One of the doctors early in the programme describes cytokine release syndrome as “the worst flu you can imagine”. I'll vouch for that. Bad flu again and again and again. I also realised, watching it, that maybe I've under-acknowledged the mental impact of being on a Phase I trial. Here I am in the happy position that the treatment appears to have worked and the side effects are liveable. But none of that was in any way certain up front, and I don't think I appreciated the extra mental strain of this trip into the unknown. Even now it's very uncertain - I have not the faintest idea if my myeloma will come back quickly, or slowly, or not at all. At the moment I'm taking treatment but I don't appear to have any detectable disease, so inevitably, I'm left wondering if these doses (today is cycle 8 of 24...) are really doing anything, or if I'm submitting myself to endless side effects for nothing.

I'm not sure whether, reading this, you'll feel optimism on my behalf. As I said at the top, overall, it's good. Maybe you'll think it's just a shame I can't be more upbeat about it. And part of me would agree, but also it would be nice to kick the cough, the snotty nose, the bunged up head, the shivers and aches, and the endless sensation of feeling run down.