Saturday, 30 April 2022


I fake my life like I've lived; too much. I take whatever you're giving; not enough. Overground; watch this space
6 Underground - Sneaker Pimps

Something, and nothing, to report

I had a dose on Monday. Tuesday passed uneventfully, except the sensation of waiting for the other shoe to drop. It did so at about 1am on Wednesday, after which I had 2 days of my temp repeatedly spiking to 39+. Not much fun. No sign of any infection, so this is certainly the anticipated cytokine release syndrome. Mine was - I think - more long lasting than they’d hoped, given that my first dose was deliberately a small one. But it didn’t escalate to any more dangerous symptoms. I retained my rationality, if not my humour. They gave me some other mysterious drug on Thursday night which stopped it all pretty abruptly. (The exciting stuff in hospitals usually happens at night.) I had dose #2 - almost twice as much as #1 - yesterday. And we’re back to wait and see. My release date has receded well into next week.

The isolation in here is more than usually intense, with no visitors. When one feels really ill, one doesn’t care. But when one’s feeling ok, and knows one has much in store, one’s mind - mine, anyway - goes on its own adventures. All the time I’ve spent in churches and temples, yet I’m certain I’ll have received more enlightenment, in the end, in hospitals. I wonder just how much of the world’s true insight has been found in prison cells. A cursory glance at some of history’s great thinkers would suggest quite a lot of it - maybe even most of it?

There’s a much longer post I could write… but while I’m still high on my own supply, I’ll save it. If it still feels explicable, when I’m back in normaville, I’ll let you know.

I’ll be glad to see Marisa this afternoon. I am currently engaged in a little patient militancy to ensure that can happen. At worst I’ve warned them I’ll take myself out of the ward. It may pretend to be a prison, but legally it is not one.

Thanks to those who’ve been in touch. I’ve tried to respond. I cannot tell you how precious all that is to me. There are a few recently rekindled relationships that I am really treasuring right now. Thank you. Whether we’re swapping pleasantries, talking nonsense, or getting deep, it all makes a difference.


Anonymous said...

Dear Alex,
I’m a lousy correspondent, I always drop off the radar. But just to let you know that I think of you often and send love, prayers, good vibes, thoughts and courage. Pick whichever you need to give you strength and support and sunshine to see you through.
You are a remarkable human and I am proud to be in the same family as you.
Much love,

Anonymous said...

Hey Alex, sorry you're going through such a tough time of things right now. My numbers have just reappeared and started slowly increasing, so I'll be back on the chemo treadmill in the not too distant future, Matt

Maarten Albarda said...

Hey Alex - following along on this part of the journey as I have done from day 1. I have no words to express my admiration. I think you saw on my social media I have been connecting with former Coke/AB-InBev colleagues in Ukraine. Their plight is very different from yours, but somehow equally precarious. But I am rooting for you as much as I am rooting for them, and for their country. I hope to continue to see uplifting and positive news. On both fronts.

Anonymous said...

Sending lots of love!

Anonymous said...

thinking of you, my dearest patient philosopher... Maybe time to write the Ballad of Kings Hospital, to compete with Oscar W's Ballad?? Pippa XXX

Jet Black said...

Hi again. I was just telling someone else, the partner of a newly diagnosed MM patient, about how much I admire/enjoy your blog, because of the music, travel and intelligence, but most of all, the militancy. Not the word I used, but an excellent one. I love that you’re not fighting myeloma - pointless and meaningless, but that you do fight for the important things - liberté, égalité and all that. 💪🏼 😉

Alex Bicknell said...

Thanks all for the comments!

Liz - love you too!

Matt. - I posted on fb. Sorry you’re heading back to treatment. Sending strength

Maarten - I haven’t forgotten our friends in Kyiv. Or indeed, outer friends in Moscow. And of course there are cancer patients, even in Mariupol

Pippa - I think writing is going to be my number one priority, assuming I get back in to remission. Let’s see what happens

Jet - yeah. Fuck em. I just completely let rip on fb on someone’s behalf, who’d been asked by a sibling to stop posting about their myeloma. If I achieve just one single thing, I’d like it to be to tear down the walls that inhibit people being honest about the challenges they have to live through. Vive la revolution!

Jason Fyfe said...

Hey Alex, being a typical Kiwi male I'm not very good (read terrible) at communicating with my fellow humans but just wanted to let you know that you, Marisa and the boys are often in my and Soph's thoughts. Hope this round of treatment goes as well as possible.