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.

Monday 25 April 2022


I will always rise in wildfires
Wildfires - SAULT

Dose 1 done

You’re not going to get daily updates. But seeing as I’ve had so many messages these last 24hrs I thought I’d let you know I’m finally in the ward - after 24hr delay waiting for an available bed.

I don’t suppose anyone would care to explain to the tories that running the NHS at 100% utilisation is not a sign of efficiency, it’s a sign of insufficient resource. I never attempted to run businesses at more than 80% - 85% (on average). And I don’t aim to achieve higher than c85% utilisation of space at the community centre, either. 100% brings endless hidden costs.

A lot of wasted nursing time today, for example. Because we were waiting for confirmation about the bed, we’ve ended off doing my dose many hours later than planned. As a result one of my trial team will have to work until midnight tonight in order to go through the first few hours of observation with me.

Anyway, enough moaning about the government. I think my opinion is already on record.

As part of the registration process on the ward I had to answer some of those questions they use to check you’re compos mentis - what month is it, etc. They also made me write a sentence so they can compare my handwriting every day. I told them I spent most of my childhood in “handwriting club”, so I’m not too keen on having my handwriting assessed. Even so they still came back and made me rewrite my sentence because it was illegible.

Bodes well for the future, no?

I don’t want to boast but, unusually, my room has a view. Not a very beautiful one, I grant you - but some sky… Indeed, when the afternoon sun shines in, I have to pull the blinds down!

Thursday 21 April 2022


You were floating to me in a slow motion fade. I could finally see between belief and faith. You. When am I gonna lose you?
When am I gonna lose you? - Local Natives

A long post ... Not because I didn’t have time to edit, but because there’s a lot to say ... The headline of which is it's time to start treatment again … KFLC = 510 ... Hb = 11.2 (as of 6 Apr) … 

In one way living with myeloma is repetitive - illness, treatment, recovery, remission, relapse, repeat. And yet it’s different each time both mentally and physically. This time it seems to have come on a little quicker and although I’m not yet (fortunately) racked with too severe bone pain, I am finding I get increasingly tired, out of breath when walking, need to sleep more. And it transpires the lump on my head, and the grief I’ve been getting in my shoulder and my lower back are all caused by plasmacytomas - colonies of myeloma cells that have started to grow outside my bone marrow. Not a welcome addition.

So, there’s sudden urgency to treat. I had lined up a sequence of trips - to visit an old friend in Cape Town and then to take a couple of my boys away, one to Amsterdam and another to Rome. At the last minute the doctors tried to persuade me not to go. Their concern was that a plasmacytoma on my spine could be dangerous. I took the decision - for the first time - to break my 'do as the doctors tell you' rule. I’m not confident when or if I’d get to reschedule any of these trips. And I’m so glad I got to go. A week in Cape Town really helped me clear my head, gain focus and prepare myself for what’s coming. And time with my kids is always so special. Plus I got to see friends and family in each place whom I don't see often enough. Enormous thanks to Marisa for enabling me to go, indeed for encouraging me. I’m very grateful. Despite everything else, I’m a lucky man.

I’m living up to the wire now. Went to a gig this week, to see the Mystery Jets. We originally had tickets (with my brother) for a date in 2019, but the tour was delayed, and then pandemic got in the way. Turns out we only just squeezed it in just in time! I’m due to see Foals play in 2 weeks - something I’ve looked forward to for ages. But sadly I think my chance of getting to that gig is pretty low now.

So, what next?

I’m reminded of the explanation I was once given by a Zambezi white water rafting guide as we prepared to descend one of the Zambezi's huge rapids:
“When we get to the first wave, throw yourself forward, to avoid capsizing. As soon as we’re out of that one, be ready for the second wave. If we make it through the second wave, we’ll enter The Land Of The Big Green Giants. At that point, just hang on.”
I made it through the first (2012-13) and second (2018-19) waves. We’re in The Land Of The Big Green Giants from here on.

Rafting the Zambezi is amazing. I'm so glad I did so much physically strenuous and adrenaline pumping stuff - including rafting that river 3 times - when I had the opportunity. Here's a pic of one of those trips, in the summer of '92, when my family were out in Zim visiting me. My brother, sister and dad are up front with me. My mum would like you to know she is definitely on that raft too. She's just visible, at the back of the raft, almost entirely swallowed by white water!

But I digress.

The new treatment plan this time round was always going to be more complex. We can’t do the “chemo and transplant” routine a 3rd time, and anyway my track record suggests it’s quite likely the next set of chemo drugs wouldn’t work. There’s not yet been a drug in either of the 2 major groups (proteasome inhibitors and imunomodulators) that has ever really worked. So, it’s time to try a new route.

They’re going to put me on a “bispecific t-cell engager” - a BiTE. The drug is called elranatamab. These are super new: we’re in the realms of the unknown. It’s a phase I trial - the primary objective for the researchers is to check toxicity. The primary objective for me is to access a drug that just might be a game changer. BiTEs have the potential to be very effective if they work and assuming I can cope with the side effects. There’s high likelihood I’ll get a massive immune overreaction at first (called cytokine release syndrome), so I’ll be admitted to hospital while the first few doses are administered. I might also get neurological side effects - go a bit gaga for a while. With luck, I’ll ride that bit out, the drug will work against my myeloma, and after a month of so it will become simply a routine of one fortnightly injection. As ever, watch this space.

I’m very glad I’ve had so many opportunities recently to see people I haven’t seen for a long time. It’s been really special. I am blessed to know you all and count you as my friends.

Several people have told me recently how calmly I deal with all of this, and I know in large part that’s true. I’ve had a long time now to get my head round it, to be prepared for the chapters ahead. And it’s a kind, generous thing to tell me. At the same time though, for the record, I’d like it to be known that there simply aren’t words sufficient to express my fury at and loathing of myeloma. It really is every bit as vile as its reputation. Mostly I just try not to indulge those emotions, that’s all. To a reasonable degree I have found the ability to transcend. I worry about the impact on those around me of what’s to come, but I no longer feel any worry for myself. Whatever happens from here on, triumph or tragedy, I’m at peace with it.

The approximate schedule is that I expect to be in and out of hospital starting this weekend for at least a week, and probably not great for most of the next month. If the drug is working, I hope June onwards could be a whole lot better. Thanks to those of you who’re able to offer Marisa and the boys practical and emotional support during this time. I’m so very grateful - they have no choice but to live through the disruption and uncertainty with me (again).

Marisa accompanied me to hospital to do the consent meeting. Mostly I do the hospital stuff on my own - why drag anyone else through it - but it’s helpful to have company for the really big meetings. They’re always a bit overwhelming because they have to run through all the possible problems we might encounter, and if you go fishing for reassurance and platitudes, they can’t really offer any. By nature of the process, each time it is a little more shocking than the one before. I’m indebted to Marisa for going through it with me this time. (3 years ago, I think I inflicted the experience on my Dad… that’s the price of being close to me.)

And while I was there, I got to do a BoMB. I was glad Marisa didn’t accompany me for that bit - peppered with the doctor’s conversation with their assistant, who obviously hadn’t done one of these before:
“No, not that one. I need the big one”
And later:
“I’m going to need about 5 more of those, and another syringe”
I bled all over the doctor’s couch which was satisfying, in a perverse way. Instead of subjecting you to the usual grisly bloody pictures, I thought I’d share an image of the beach in Brazil where I relocate my brain, when it’s best to get some distance from my body. It's definitely where I go during biopsies.

Praia do Encanto / Enchanted Beach / 5th beach
Morro Do Sao Paolo, Tinhare, Bahia, Brazil

We spent a week there, when the older boys were very little and I was 6'4". Long before all this nonsense began. The tide goes out for miles, leaving rippled white sand. The kids used to run out towards the sea with shouts of "I'm going to run to Africa".

I always "return" to the same beach for my meditation. I've found it's one technique that really works. The beach is always completely deserted, except me. I can feel the sun and the sand, and hear the sea.