❤️💣

You know she's waiting, anticipating, things she may never possess
Try a Little Tenderness - Campbell, Connolly and Woods *

I have a conflicted relationship with Dialm right now. Reflective of my desire to move on from the recent past. There are a several posts currently in draft that I could share, but I can’t be bothered to get my thoughts in order enough to finish the job. It’s entirely possible they will remain in that form forever. You won’t have missed much, so don’t worry. 

I’m in that peculiar period where recovery merges back into the mundane. I’m increasingly unencumbered by trailing difficulties from hospitalisation. I still have pain in my feet. (A doctor friend told me that post-ICU neuralgia is a thing. But it’s one of those things that no-one warns you about. You get to discover for yourself.) Increasing mobility brings with it the ability to exert more muscles and consequently hurt more muscles, so I’m still living with that process of evolving capability and accompanying aches and pains - currently manifesting as stiff knees. But, knees and toes, it’s marginal stuff, really. Nor am I overly afflicted by side effects from medication. Three doses in to my renewed treatment, I’ve barely noticed feeling fluey at all, this month. And I haven’t been ill (though I’ve no way of knowing if that is anything more than luck; no sense of the ongoing level of risk).

I’m rapidly distancing myself from the last year, emotionally. It’s receding into being a historic anecdote, rather than a present tense experience. Whatever way one interrogates April 2022 to April 2023, for me it was mostly about dealing with myeloma: plasmacytomas; nerve compression; cytokines; radiotherapy; and infection. For different reasons, I spent both my birthday and Christmas - six months apart - in hospital beds. 2023 feels like a year in which I can, by contrast, live. It was my (50th) birthday this month, which I’ve been able to enjoy in the form of several parties and nights out. I think Marisa notices, almost more than I do, how much of this I’ve missed out on, and been missing from. It’s good to be back.

We went camping with my extended family last weekend (an annual highlight, though on the list of things I was too ill to participate in last year). What with that and the parties, I’ve caught up with lots of people who care about me, but whom I hadn’t seen recently. I’ll be glad when the love bombing is all over, to be honest. I remember in the early days of my myeloma diagnosis, being very troubled about the distress my illness can cause to other people; feeling a level of responsibility for other people’s feelings. Empirically, that’s absurd, and the longer I live with myeloma, the less I react in that way. The response is supplanted, to an extent, by a strange possessiveness. That my tribulations are mine and mine alone. A tinge of resentment at other people parking the tanks of their emotions on the lawn of my life! It’s not about you! An entirely ungrateful way for me to look at it, I know. I’m not proud of myself for feeling that way. The sooner it is all just history, now, the better for us all.

So excuse the detachment. Here’s the facts. My myeloma remains invisible. The maintenance treatment continues uneventfully, as does the IVIG. I had a bone marrow biopsy this morning. I’ve lost count, but I’m definitely into double figures by now. And while I may never learn to love the BoMB **, this one was unremarkable, almost boring. It will enable a more definite statement of my status. Hopefully, to confirm my myeloma can’t be detected.

And yes, I hit 50, which I honestly didn’t imagine I would. I’m increasingly cavalier in permitting myself to imagine being 60 one day, rather than constantly talk down my own prognosis. I can’t be bothered, any more, to waste my time worrying about what may be ahead. Today is good enough

* Try a Little Tenderness is the opening theme of Dr Strangelove Or How I Learned to Stop Worrying and Love the Bomb

** I have decided that BoMB is a good benchmark against which to measure other myeloma indignities. Worse than a BoMB? Or not as bad? It’s certainly more meaningful than the utterly arbitrary “scale of 1 to 10” stuff. Quite a few things, this last year, met the criterion of “worse than a BoMB”

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

on google maps

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.

Running

In through a doorway she brings me white gold and pearls stolen from the sea
Running To Stand Still - U2

Baseline ... KFLC = 750 ... κ/λ = 141 ... Hb = 10.0 ... Neutros = 1.3 ... Plasma = 60% ... 

So, two trips to hospital today. First to get stabbed. Second to get poisoned. (i.e. blood tests and prescriptions.)

My blood counts have deteriorated. Light chains and κ/λ ratio are both up, and my haemoglobin is down. My anaemia is getting more severe (and I don't expect the drugs to help, in the short term).

I'm pretty alarmed to find that in my bone marrow biopsy 60% of the cells are plasma. If I didn't have myeloma, it should be <5%. More than half of my bone marrow is myeloma. Yuk. No wonder my bones ache, my blood counts are lousy and I don't feel great. (It's also a substantially worse state of affairs than when I was first diagnosed, and this result would be a sufficient reason, in and of itself, to trigger treatment.)

But regardless of the blood counts and level of plasma infiltration, my bone pain is getting worse by the day. I've had to increase my doses of both oxycodone and codeine, to try to keep it at bay.

It's pretty clear we need to get started.

Today is Cycle 1, Day 1. I've passed all the tests. Get set. And, we're off. The finishing line, for this first part of the treatment will be late May, or mid July, depending on how I get on.

Here's my typical weekly medication (I made a chart so I don't forget to take things!)

And here, in 3D ...

I've already taken my first load of DEX ... a long night beckons ...

TimeBoMB

Mother, do you think they'll drop the bomb? Mother, do you think they'll like this song? Mother, do you think they'll try to break my balls?
Mother - Pink Floyd

BoMB time

Thought you'd be as delighted as I am to know I'm going to have a bone marrow biopsy on Monday!

Oh the anticipation.

Hopefully, I'll also have a lung function test, another MRI and an echocardiogram. After which, all systems go for treatment!

But only one of those appointments fills me with dread.

They have not offered me any sedation. They never do, though if I insisted on it, they'd have to provide it. But that would require another member of staff, and things are stretched enough as it is. Anyway, there isn't any gas in the little room they use. So if you are to be sedated, it has to happen in the main treatment space, i.e. in public rather than in private. I'm not sure which is worse. At least in private, no-one can hear my screams.

BoMB

I am more than these bones. I feel love, I feel alone
Flesh and Bone - Keaton Henson

Day 90 : The indelicate subject of bone marrow biopsy

There's a small taboo in myeloma circles about talking about bone marrow biopsy. We tend to just brush it off. "It's not so bad. You get through it". There are, of course, larger taboos, such as around the meaning of "incurable", which is somewhere I don't want to go right now, though brave souls such as Pat Killingsworth do, and I commend them for their frankness (though I find it difficult reading). I've decided to post a few times over the next few weeks on taboo subjects. I've thought long and hard about this - as an anthropology student I spent a while studying Totem & Taboo, so I don't go there lightly.

Let's start with a fairly harmless taboo. You might want to skip this if...
...you've had a BMB yourself. You'll know all this.
...you are about to have your first. It's not so bad! You'll get through it! (This isn't untrue, and sometimes you are better off not dwelling on the future.)
...you are merely squeamish. It's up to you.

So why write it at all? Quite simply, part of the motivation behind Dial M is that I don't see why we should keep quiet about all the indignities of myeloma. So I'm not going to. Taboos are, mostly, better honoured in the breaking (except the ones around incest and morris dancing, to mash up several cliches at once).

The only way to get at myeloma directly is to go where it is, in the bone marrow. This is in some ways less accurate than a blood test, since it detects myeloma at one location, rather than throughout the body. But it enables genetic analysis of myeloma cells, and since myeloma can secrete at different levels, it helps to calibrate the blood test readings. My myeloma doesn't secrete much, compared to most people's, and there's some likelihood that as it mutates genetically over time, it will secrete even less, or stop secreting at all.

So, long and short, the docs like to get a sample of the real thing, from time to time. Today was the 4th, for me, in the last year. At King's there's a forlorn little room off the side of the therapy unit, especially for BMBs. You can ask to be sedated, but this requires 3 medics, takes much longer, and at King's it has to take place behind a curtain in the main unit (because the little room is too small). I've decided I prefer, on balance, to get it over quickly, in the little room where no-one can hear my moans and my "oh fuck!"s.

I go in the little room, with a doctor who is in the impossible position of trying to make small talk when we both know what is coming. She goes through the consent form. The main "risk" of BMB is pain. Risk? More like raging certainty. And she (always) makes sure to warn me that one risk is that it might be "unsuccessful" and need to be repeated. Oh joy. Then I sign the form, and lie on the bed, facing the wall, curled in a foetal position, with my trousers slightly lowered, waiting politely to be violated.

I've always had my biopsy in my sacrum, which is the triangular bone in your pelvis that attaches the hips to the spine. If you feel round from your hips towards your back, you'll feel two points of bone, just below the small you your back, either side of your spine. These are the corners of the sacrum. The doctor starts by feeling to find one of them, where she applies local anaesthetic, not just at the surface, but all the way down to the bone.

There are two parts of a bone marrow biopsy. First comes the "aspirate", which involves a needle right into the bone, from which about 5ml of liquid bone marrow is extracted. This is by far the most painful bit of the process, because one can feel the sensation all through the sacrum and down the leg too - like a sharp twang of sciatica.

Second is the "trephine" which involves a needle taking a sample of solid bone marrow. This uses an instrument with a cylindrical blade - it is driven into the solid marrow, twisted, and pulled out. This isn't so much painful as uncomfortable, because it means having one's bones directly pulled on.

Next, my favourite bit, is the moment when the doctor tells me that my solid sample isn't very good. Indeed, today, I can feel the trephine slipping as she extracts it, presumably because the site she is extracting it from is full of holes. There follows an entirely unwelcome conversation about myeloma bone disease, and the state of mine, and then the trephine process has to be repeated.

Then, once the bleeding has been stemmed, and a dressing applied, I am able to walk home, and wait for the anaesthetic to wear off.

And that's it. According to something I read recently, we're not very objective in our assessment of pain during an experience. We tend to perceive pain as the average of the most painful moment, and the pain at the last moment. And we tend to discount completely the length of time it went on for. As a result, we tend to perceive a very short experience of significant pain, as worse than a very drawn out experience, which may have long periods of high pain, but ends with pain gradually reducing. Part of the fear of BMB, I think, is due to this, because for a moment or two it really hurts, and then it's over. Ironically, if the doctors spent another half an hour inflicting minor pain, we'd probably view the whole experience so much more favourably. Knowing that little distortion of the mind helps me to grit my teeth through the process. Today's was a breeze. But then, I've had practice.