Uptodatedly

Ven, nino que estas ahí. Vuelve a casa

Madres - Sofia Kortesis

Over dinner last week I said to a friend that we could skip the discussion of my current and recent myeloma:

“It’s ok Alex - you can tell me anything”

“But I don’t really want to talk about it, myself”

… Bearing that in mind … It’s been three months since last dialm, so here’s the skinny …

The chemo is working both biochemically and side-effects-ly. Five cycles in, my light chains are normal and I feel far better tolerating pomalidomide and isatuximab than I did on elranatamab. So that’s all good. Not enough to reassure my consultant, who is concerned about evidence in PET scans of my pelvis. So we’re on watch and wait. He was hinting at changing my chemo, which you won’t be surprised to know I was not much in favour of while it appears to be working, and not too rough. Our compromise was I get another six weeks as we are, and then another PET to help us make the right decision.

Myeloma has always been cyclical - bad periods and good ones. The last two years has much accelerated the frequency of those transitions. Going from good to bad is usually progressive - unless I really hurt myself, in which case it can be very quick. The transition from bad to good comes, at its best, as a sudden release. In my imagining it’s the moment the cumulative load of pain and fatigue drops low enough to release some quantum of mental capacity. The capacity to give a shit. Despite having had better periods among the carnage of the last two years, I haven’t had one of those release moments… I have felt periodically better, but haven’t really felt good. This last week feels very much like one of those moments.

I’ve long observed the impact of my physical health on my mental health, but mostly with an aspiration to decouple them. To not have myeloma of the mind. But, I’m reevaluating that. I don’t think decoupling is practically achievable, and wishing for it is of itself stressful. Maybe better I just embrace the truth: when I’m ill, it’s not much fun, and I’m not usually at my best. Doesn’t sound unreasonable, written down like that. I’m not saying I’ll reduce my bad-times ambition to mere survival, just give myself more license to muddle through as best I can. The last few months have been hard.

“Bare long, I can’t lie”, as my teenagers would put it.

After years of experience I embrace the moment I regain the capacity for living: to sit around the kitchen table chatting with the kids; to potter around the house vaguely contributing to its running; to open my “To Do” list and actually do something; to go out. In theory, even totally immobile, I could prop my laptop on the bed and do the Community Centre accounts, or write poems. In practice… at those times, I just don’t effing feel like it. It’s nice, therefore, to be out of bed again, and to feel like it, again. Not limited by fatigue, or (excessively) encumbered with pain. I’ve many times borrowed the language of mental illness to describe my myeloma experience as making me feel, in a way, bipolar. (Excuse me if that word means more to you than to me and my use of it seems crass. I hate it when people use “cancer” as a metaphor.) When I’m physically ill, unsurprisingly, my mood is low. When I’m feeling better, my mood swings up, abruptly and I feel imbued with power and energy and an urge to get stuff done. Relapse and remission, those are my poles.

This last week I went to a party on Wednesday, went to two exhibitions on Thursday, had people for dinner on Friday, went to someone else’s for dinner on Saturday, and shouted on the touchline of two football games on Sunday (and ate through one piece of chocolate cake, one ice-cream cone, one pickle, one slice of Swiss cheese, one slice of salami, one lollipop, one piece of cherry pie, one sausage, one cupcake and one slice of watermelon). That’s a kind of “normal” that is so often, and for so long, out of reach for me.

It’s irritating therefore that I’ve still been restricted to using crutches or wheelchair because of an injury in my groin. Irritating to feel the “good” period being impeded. I’m hoping it is a mechanical injury, and finally on the mend. If I can just get my consultant to agree that it’s not a cue to change treatment... But it is a lot better than it was. So hopefully this particular storyline is drawing to an end.

I used to plan for the good periods, post SCT: change my job and build a new routine. Now the transitions are so frequent and sudden, I haven’t time for the planning bit. It’s just a matter of chucking myself into things as I feel like it and not worrying about tomorrow. Look out, baby, here I come.

That’s where I am today. By the time we speak I could easily be in a different place. Anything could happen. Something or other most likely will.

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POSTSCRIPT 21st May

I should really know better than to google my illness, and I'm pretty good at keeping away from it these days. But every now and then.

Anyway, found this - https://pubmed.ncbi.nlm.nih.gov/9172858/  -  Fucking hell