Wednesday, 18 May 2022

Protocollox

Don't push too far, your dreams are china in your hand. Don't wish too hard because they may come true and you can't help them. You don't know what you might have set upon yourself
China In Your Hand - T'Pau *

Finally, I’m on the escalator

Last week was pretty frustrating. Since leaving hospital it has become increasing obvious that the plasmacytoma in my back is pushing on nerves that make it very hard for me to walk and stand. My first few days of  'freedom' were, in reality, just another form of confinement. One of the 'joys' of myeloma is it throws different experiences at you each time. This time, I got to experience having to climb the stairs on my hands and knees.

So when the hospital let slip over the phone that they’d decided not to escalate my dose for week 3, I wasn’t happy. The dose at which maximum effectiveness of elranatamab has been measured without problematic side effects, is 1,000μg/kg. The purpose of my trial is to see if cytokine release (CRS) can be minimised by starting on a lower dose and then escalating. So in week 1 my first dose was just 50μg/kg, and the second was 250μg. In week 2 it should have gone up to 1,000μg/kg but because I’d had some CRS and also some neutropenia, we kept it down to 250μg/kg, again. Last week, I was assuming and expecting we’d move up to full dose.

I had, by some margin, the bumpiest consultation I’ve ever had with a doctor. At one point I walked out, and had to go find a bench to sit on to review and compose myself. Their rationale was to continue on low dose due to neutropenia, and the doctor even indicated that if neutropenia continued to occur, I’d probably have to leave the trial. I was pretty upset that the decision had been taken before anyone had even examined me, because if they had they’d see that I’m in need of treatment, not delay. I told the doctor that if the trial was not going to prioritise me, and treating me, and factor my needs into the decisions, then I’d prefer to give up on it now, and start on a different course. I also told the doctor the reason I’ve chosen this trial rather than the regular “standard of care” is that I imagine that other route would only buy me months. With that as the alternative, I’m quite willing to risk a bit of neutropenia to find out if this route can take me to a different place.

Then my blood results came back and I was still too neutropenic to treat. So we delayed a few days, while I went home to pump myself up with G-CSF. The beneficial outcome of this delay was that by the time we came to dose, the trial people had reviewed their decision in light of my symptoms and my (strongly expressed) opinions, and agreed to give me the full dose. 

Part of the problem with clinical trials is you’re negotiating with a piece of paper, the protocol, which is completely fixed, inflexible and not open to discussion. It can be exasperating, and makes one feel as though the patient is not the priority. I’m glad, in the end, that I blew up last week. That’s the first time a trial protocol has bent to my will.

So I had week 3's dose on Thursday (8hrs sitting around in hospital for a single injection) and it has caused me no side effects at all. It also seems to be further reducing my plasmacytomas, and although my walking is still pretty poor, I’m optimistic that at some point the plasmacytoma will reduce sufficient to completely release the nerves, and I will be set free.

This week (Monday) was the last of cycle 1 (6hrs sitting around in hospital for a single injection). All was good - my neutrophil level was this time abnormally high, so I’m going to reduce the G-CSF routine to just a single shot before treatment day. Maybe in a few more weeks I’ll be able to stop it completely.

Next week, the start of cycle 2, doubles the dose again, but reduces the frequency to fortnightly injections. This dose is experimental, so they’re going to incarcerate me again for a few days to keep an eye on me, starting on Sunday. Ah well. Another couple of opportunities to eat salted caramel sponge and custard.

The good news for the trial is that I appear to be evidence in favour of dose escalation. I only had mild (stage 1) CRS, which is below the threshold the study is measuring. And the drug elranatamab, if it works (and I’m increasingly optimistic it does), could be the dawn of a whole new era, as it appears to have basically no side effects once the CRS has gone. If in 6 months time I’m being kept in remission by a monthly injection, it will be almost miraculous. Right now though we're still waiting for clear evidence of efficacy, and I'm still pretty immobile. We're not out of the woods just yet.

In amongst my frustrations, I spoke with my wonderful nurse, who is always good at making me see sense, and calming me down, when I’m frustrated with the process of being ill and having to interact with the hospital. She reminded me - and she’s right - that the start of myeloma treatment is always a bit bumpy, and takes a while to settle in and settle down. I just need to be patient for a few more weeks until we’re confident and comfortable that the plan is working and the routine is stable.

Here’s what all the fuss is about. It’s amazing so much potency can come from something so small. You can see in the enlarged image that the quantity being injected is tiny. Even on the full dose, it’s merely a 2ml subcutaneous (ie into the skin, not veins) injection. Nothing more remarkable than your covid jab. As Arthur C Clarke said, any sufficiently advanced technology is indistinguishable from magic.


* Hospital treatment rooms are a haven for 80s pop radio

Wednesday, 4 May 2022

Decibels

I'm kicking down the doors. I'm climbing up the walls of the house that's yours. Hey, man, won't you come, come give me a gun? Help me blow the lights right out of the sun
Wake Me Up - Foals

Hometime

I'm out. Not before time. I'll spare you, for now, the moaning about the NHS's appalling discharge process. Suffice to say in the end I left without my discharge letter, my final visit from the doctor, or my pain meds. I told them they can assume it will be their names I'm cursing, if the bone pain comes back on tonight (which I expect it will).

Not out of the woods yet. Due in on Friday for blood tests to see how my immune system is weathering the storms. After that it's Monday doses, and intervening visits for blood tests if we think we need to continue to do them. It'll be another couple of weeks before there's anything at all on whether or not it works.

But for now, I don't care about any of that. I just had a shower without having to wave one arm above my head to avoid getting my cannula wet. Next, I'm going to go cook myself some lunch. I hope the neighbours are out. If not, they'll just have to bang on the walls. They might have to bang quite hard, to be heard over the music!

Tuesday, 3 May 2022

Saul

If there's any thought, better think of me. For a little support, at time of need
Better Call Saul Extended Theme - Little Barrie

Day 8. Dose #3


Disappointed to discover today’s dose comes with a side order of DEX. They’ve promised this is the last time that will be the case. So, I guess I won’t be sleeping again tonight.

If you wanna know how I’ve filled my time, this last week... I’ve invested a good part of it in indulging myself, rewatching the entirety of Better Call Saul - all 50+ hours of it. I realise if you’ve not ever seen it, that’d be a bit daunting now, not least because I’d advise you to watch Breaking Bad first, and there’s another 50 hours of that.

But Better Call Saul is probably the most beautifully filmed (all on location in stunning New Mexico), well characterised, funny, outrageous, yet surprisingly thought provoking tv drama ever made. The main characters are all incredibly textured and their stories develop. It’s much more than a series of episodes. Rhea Seehorn, in particular, delivers an amazing performance as Kim.

Breaking Bad is the story of one man’s dark response to a cancer diagnosis. Better Call Saul is the story of another man whose lack of moral foundation progressively gets the better of him. Anti-heroes would be too polite a way to describe either of them.

Breaking Bad came first, and Better Call Saul is a prequel. It’s now in its final season. The final few episodes have to join the end of the one to the start of the other, which cannot be good news for the main characters. Rewatching something where you know the plot, permits you to just enjoy it for the cinematography, the story telling, the details, and the performances. Loads of subtle, virtually dialogue free, sequences visually deliver much of the narrative. It seemed a personal treat, as the final episodes are about to air, to get to go back and start over.

So, that’s what I’ve been doing.

Monday, 2 May 2022

Foals

Sun's up, we wait all day, all day, while the hell outside is kept away. If only we could move away from here. This is how we build a place. An aviary for today
Olympic Airways - Foals

Tour 2022 Mon 2 May Olympia London

By rights, in a just world, this is where I should be, tonight. But I’ll not be. It’s taken more than normal self restraint to confine myself to my pseudo prison instead, and not just do a bunk. The dr tells me I’m neutropenic today, so no matter how I’m feeling now, a sweaty crowd would’ve been a dangerous place to put myself. I know the reason I’m still incarcerated is because this treatment regime is entirely new to the medical team, as well as to me, and they’re trying to look after me. Anyway, I did delay the whole process by going on a succession of foreign trips, against their advice. So I really have no right to complain. And I did promise the medics, that once I was back off the plane, I’d submit. So here I am.

Marisa and the boys are going without me. Enjoy it for me. When they play Providence, go nuts!

When I fall down, then I know to keep on running
The Runner - Foals

Saturday, 30 April 2022

Solitary

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

Dosed

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

Bispecificity

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.

Thursday, 10 March 2022

Diagnostics

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.