Thursday, 10 March 2022


If there's a fire, call the fireman. If you're in pain, baby, call a doctor. Don't be afraid to say "I need you"
Fire - Black Pumas

Various updates for you…

Tuesday marked precisely 10 years since I wrecked my back, and started on the journey towards myeloma diagnosis. I’m definitely now living beyond any expectations I had, back then. I don’t really have expectations, any more, and I try to live one day, week, month to the next. Let’s see what the next decade brings!

My light chain numbers are plodding up and the doctor thinks I should restart treatment relatively soon. In hindsight I think we were more cautious last time I relapsed than we maybe could/ should have been, because by the time I went into chemo it was too late to prevent several further fractures - most notably my sternum. I really don’t need any more breaks than are unavoidable (a recent mri showed my vertebrae are still progressively collapsing as a legacy of the damage done 10 years ago). So the plan will be laid out in early April, and I don’t anticipate dragging my feet. I’m guessing treatment starts in May. A list of possible drugs, some of which even I haven’t heard of, and the usual decision whether or not to be an experimental guinea pig. Watch this space.

I’m currently marooned alone in Bodiam having tested positive for covid in a routine screening test before a (now cancelled) hospital appointment. There are worse places to be. There’s a view from my armchair.  I have a bit of a snotty nose but apart from that I’m fine. Having been aware of many many people locally testing positive the last couple of weeks, I’m hardly surprised. Indeed numbers are clearly up in Lambeth, and the last 3 times I’ve noticed that happen, it’s been followed very rapidly by announcement of a new variant. Just sayin’.

Did I notice any covid symptoms? It’s not so straightforward when fatigue and achy bones are permanent companions anyway. I’ve had a relatively rough time (by good-time standards) the last month or so with problems first in a shoulder and then at the base of my spine, which both feel like trapped nerves. Nothing obvious shows up on the mri but then it never does. A bit of limping. A lot of whinging (sorry, Marisa). And in light of my numbers, I’ve decided now is a wise moment to take physical precautions. So I’m on a carry-nothing lift-nothing regime, which obviously makes me a bit useless whenever anything practical wants done.

In my convalescence I’m trying not to doom scroll too much. The world never stops reminding us that it is awful as well as wonderful. I’ve travelled and worked in both Ukraine and Russia. Beautiful places and people - though Russia was never, in my experience, an easy place to be, and the looming menace of authority was palpable in a way that it is in very few countries I’ve experienced. That said, I’ve worked with some lovely, generous Russians. I feel for them, under the yoke of what amounts really to fascism. But my thoughts of course are with Ukrainian people. People I have shared a dinner table with are no doubt cowering from the munitions. It doesn’t bear thinking about.

Britains pettifogging bureaucratic response to the refugee crisis repulses me. But it’s entirely what you’d expect from a government defined by the “taking control of our borders” mantra. It’s not as though Ukrainians are the first group to be treated despicably by British immigration. Afghans. Syrians. People in dinghies. There was Windrush where British citizens were refused re-entry and had their citizenship denied. There was the EU settlement scheme and the number of people whose “settled status” was refused on the basis of trivialities. There still is the “minimum income requirement” that prevents British citizens getting visas for their spouses. And there’s ever more legislation to enable politicians to revoke citizenship of people deemed “not conducive” even if they’ve lived in Britain all their lives… Anyone who didn’t already know Britain was miserly and xenophobic, must have been looking the other way. Boris Johnson’s continued lies on the subject (that Britain has resettled more people than other countries, and so on), is merely what you’d expect. None of us should be surprised. Even those who voted to elect him knew what he is.

Brexit extols us to be proud and patriotic, but honestly, I can’t see what we’ve got to be proud of as a country. I take my solace in the integrity of my friends and family, the inclusivity of my local community, the optimism and potential of my children. (Someone I barely know just brought me a bag of groceries…) I’m honoured to get to spend time amongst you, and after 10 years of dodging death, I’m very much aware of it, and extremely grateful. My love to all of you. Stay safe.