Plodding

I find it hard to tell you, 'cos I find it hard to take
Mad World - Tears For Fears

Progress, tinged with flu

I'm due another dose this afternoon. I thought I'd let you know how the last month has been. Overall, it's all good. My light chains are still flat on the floor - 0.6 at the last test - and the rest of my blood count is getting closer and closer to "normal". Even my haemoglobin level is normal today.

I had a chat with my counsellor a couple of weeks ago. In the weeks between arranging the conversation and actually having it, life had got a whole lot easier and I found myself describing recent challenges in an almost light hearted way. It’s not the first time I’ve been aware of the extremes of mood that my myeloma brings. The lows are very low. And the highs can feel manic. Our conversation made me aware of how bad things were, very recently. I don’t think we’re built to remember pain and misery - so it’s sometimes hard for me to notice changes and progress in myself. Marisa assured me it’s pretty obvious from the outside. Basically, things are much better than they were.

When things are good, I immediately feel a fraud for having moaned when they were bad. Marisa and I had a very interesting conversation recently where I discovered she experiences those thoughts much the same as I do. It's horrific, terrifying, terminal, right up until the moment it's not. There's something distinct about myeloma, I think, in its wide range of unpredictable symptoms, the fact that treatment is always overlaid with doomy fears that it won't work and/or that something even more evil is brewing up, and the underlying certainty that you'll never actually be free of it. It's a potent combination of fears and challenges that makes the bad times so very bad. It's good to feel I'm out of that space. It's progress.

That said, treatment still comes with side effects, and my consultant thinks what I'm experiencing now is probably what I'll experience while I continue taking elranatamab. It's like coming down with flu every day. It has got easier, the last couple of months, but it hasn't gone away. Even over the last few days, at the furthest point from dosing, I've consumed a lot of paracetamol and had more than one occasion to hide under a blanket. So, unlike my recovery from stem cell transplants, getting better this time has not been accompanied by the day-on-day sensation of feeling weller and stronger. It makes the whole thing more of a plod. But I do feel a whole lot better than I did. I went back to work two weeks ago, which is wonderful - something to do. Though in the short term I'm only going to be able to work the "good" weeks. In fact, I think in general I'm going to be able to live the "good" weeks, and just do my best to get through the others without too much whinging!

The documentary “War in the Blood” is back on iplayer; worth watching if you missed it last time (though not easy viewing). It was interesting for me to watch again. When I saw it before, I could recognise a lot of my own experience in it, but the parallels are even closer now, as my current treatment is very similar to CAR-T therapy trials. One of the doctors early in the programme describes cytokine release syndrome as “the worst flu you can imagine”. I'll vouch for that. Bad flu again and again and again. I also realised, watching it, that maybe I've under-acknowledged the mental impact of being on a Phase I trial. Here I am in the happy position that the treatment appears to have worked and the side effects are liveable. But none of that was in any way certain up front, and I don't think I appreciated the extra mental strain of this trip into the unknown. Even now it's very uncertain - I have not the faintest idea if my myeloma will come back quickly, or slowly, or not at all. At the moment I'm taking treatment but I don't appear to have any detectable disease, so inevitably, I'm left wondering if these doses (today is cycle 8 of 24...) are really doing anything, or if I'm submitting myself to endless side effects for nothing.

I'm not sure whether, reading this, you'll feel optimism on my behalf. As I said at the top, overall, it's good. Maybe you'll think it's just a shame I can't be more upbeat about it. And part of me would agree, but also it would be nice to kick the cough, the snotty nose, the bunged up head, the shivers and aches, and the endless sensation of feeling run down.

One

Have you come here for forgiveness? Have you come to raise the dead?
One - U2

… KFLC = 1 …

The good news first. My light chain result last week was 1. Even now I’m struggling to believe it. This is not just normal, it is far below normal - meaning treatment has not only wiped out my myeloma, it has wiped out all my normal plasma cells too (the drug can’t tell the difference).

Given that I’m neutropenic as well, this is all very bad news from the point of view of my immune system, which is struggling on all fronts. I’ve had some kind of respiratory virus, and been unable to shake it off, for more than a month now. In fact I’ve been positive for one virus or another for several months. Consequently I'm kept in segregation when I visit the hospital. They've a portacabin in the car park for me - I kid you not - and when I go in for treatment I'm treated by someone who introduced herself to me as "the dirty nurse". More seriously, I’m a little fearful of my risk from covid or flu as autumn moves towards winter. 

But from the very narrow perspective of killing myeloma cells, it’s amazing. It’s a better response than I’ve had at any point in the last ten years - deeper than I got from two stem cell transplants or ten different types of chemo. Give the wonder drug some credit. With a bit of assistance from radiotherapy, it has destroyed my various plasmacytomas, too, I'm pleased to say. I haven't enjoyed living with a lump on my head.

I had treatment this week for the first time in more than a month, the dose having been repeatedly delayed by one thing or another: anaemia, neutropenia, various infections, or combinations of these. The drug leaves its mark even over that timescale - that’s why I’m neutropenic and anaemic in the first place, after all. But the side effects are far more acute in the c.10 days immediately after a dose, when I just want to curl up in a ball and die. So I’m ambivalent now, at missing doses. With no myeloma to attack, all the drugs offer is side effect misery. My consultant is clear though that this isn’t a cure - if we don’t keep hitting it, the bloody thing will just come back.

I asked my consultant, last week, whether in future, when they’re inventing wonder drugs, they could maybe try to invent ones that don’t make you feel like shit. My relationship with elranatamab has proved far more challenging than I’d anticipated. I don’t think this relapse has been as bad as the last one - 2018 was a truly awful year - but it has plumbed some depths of its own. Myeloma tests you in new and horrible ways on each encounter. Partly because the disease behaves so unpredictably, and partly because each time the treatment is noxious in new ways.

The last few months have really knocked me back. I feel as though I have a deep hole to climb back out of, again. I’ve become so accustomed to being housebound and bedridden that there’s a big psychological adjustment needed now too. It will be a slow road to recovery - and I feel that I’m recovering from the treatment as much as, if not more than, from the disease. And if the treatment doses continue - as planned - for the next 18 months, I fear I may keep being pushed into the hole as fast as I’m able to get out of it.

This week is really the first time I’m having a dose while feeling relatively well, meaning this dose will give me a clear eyed view of exactly what the ongoing side effect are, separate from all the other stuff I’ve been dealing with up until now: my myeloma, plasmacytomas, infections, anaemia, radiotherapy and so on. If the side effects continue to be as gruelling as things have been, I’ll have to think hard about whether I can hack another 18 months of this. In the end there’s a balance about quality as well as quantity of life. But maybe (I can hope), it will turn out the side effects too, are easier, now I’m feeling, in the round, better. (One positive detail though - the feared peripheral neuropathy was diagnosed as actually being carpal tunnel syndrome, and whatever the equivalent is when you get it in your elbows as well as your wrists. The nerve doctor - he had a savage little machine for testing nerves by applying electric current - had no idea why it has chosen to manifest now, and there are a couple of things we could do about it, if it got bad enough to make it worth the hassle. I can live with that.)

Reading back through this, I feel I should be happier. In all these years, and so much chemo, we’ve never got anything like this level of response from my myeloma. These wonder drugs are remarkable. I have a couple of friends who have been treated with similar, but different, drugs and I think we all report broadly similar: outcome good, side effects bad. And, as a drunk friend put it to me at a party, not so long ago,

“You’ve lasted much longer than we thought you would”.

Right now, light chains or none, I’m still in the hole. I’ve still got to keep visiting the hospital, for periodic doses of elranatamab. I live in trepidation of that.

So I guess I should let out a little whoop whoop. That said - and I don’t want to sound ungrateful - being kept alive isn’t, on its own, enough.

What follows is a load of steroid induced wordy nerdery about light chains. You really don't need to read this! Some of you will know much of it already, and can award yourselves a gold star

Light chains are not myeloma, they're a consequence of it. They're used as a proxy measure because they can be detected with blood tests, whereas myeloma cells, residing in the bone marrow, are more difficult (let's be honest: painful) to reach. Myeloma is the cancer you get from mutation of a type of cell called plasma cells, which are a differentiated form of a cell type called B-cells. Plasma cells should normally produce antibodies - immunoglobulins. These are the body's memories of previous infections. They're the reason we fight the same disease better on second and subsequent exposure. Myeloma cells, rather than producing relevant antibodies in conjunction with the rest of the immune system and in response to the presence of infection, as a normal plasma cell would, just pump out whatever they're pumping out, unregulated. Typically that's a whole immunoglobulin, a protein made useless by not being relevant to the body's need: so referred to often as a paraprotein. Paraprotein measurement is the normal way to detect myeloma. It shows up as a massive spike of just one immunoglobulin being produced to excess. But about 10% of myelomas - including mine - don't produce whole antibodies, but just one bit of them, called a light chain. Again it's the vastly abnormal quantity of these that is what we're measuring. Light chains occur in the blood anyway, as part of the natural breakdown of antibodies. In low concentrations they're not of themselves a problem, but in excess they can bung up the kidneys causing irreparable kidney damage. A normal serum free light chain reading for kappa light chains is around 20. (It's even more complicated than I'm telling you here! There are five types of immunoglobulin, IgA, IgD, IgE, IgG and IgM, and two types of light chain, kappa and lamda, and you can have tumours secreting any of them, though some are very rare. Mostly they're symptomatically indistinguishable and all considered myeloma. But Waldenström's Macroglobulinemia, for example, caused by mutated plasma cells secreting IgM, has distinctly different symptoms.) At diagnosis, and again at the start of treatment, my light chains were up to 1,300. The actual number is irrelevant. Some people's myeloma cells are more prolific than others, so for the same tumour load some people will get a much higher light chain score. But other than the kidney risk, it's the tumour load, not the light chain load, that we're most worried about. So the score has to be calibrated to the individual. Some people have scores ten times mine. Others secrete almost nothing at all. For me previously (this could change in future), things have tended to get bad, symptom wise, once it has hit around 500. My light chains have never previously scored below 60, meaning there's always been some myeloma detectable, never a complete response. So the most recent result came as a surprise. Scoring just 1 means not only is there almost no myeloma, but there are almost no antibodies breaking down, and therefore no normal plasma cells producing them, either. This is not surprising, since elranatamab attacks myeloma cells by attaching to a surface protein called "B-cell maturation antigen" (BCMA) which, as its name suggests, is expressed by B-cells. It's incredibly potent. I get just over 100mg each dose, so I've had a gram or so in total, and it's wiped out all my myeloma, and more. It's a lot more discriminating than most of my previous chemos, some of which couldn't tell the difference between a myeloma cell and a hair follicle! But that's little consolation for my plasma cell population, which is a key component of the immune system. So... my light chain score is remarkable. It never occurred to me I'd get a response like this. I didn't believe them when they told me. And I guess I'll find out what it will mean to live permanently with such depleted immune system, because while I continue taking elranatamab, my plasma cell population will not be able to recover.

Directionless

I can only call to mind the way you look at this present time. I can barely comprehend all these versions of you
Versions of You - Maximo Park

I owe you an update on the 10 weeks since I last posted

Don't expect this post to be insightful or witty. All my myeloma deserves, right now, is a scrawl in the margin reading "what a load of shit". I think I've been putting off writing in the subconscious hope that I'd turn a corner, reach a better point, have good news for you. But I'm beginning to accept that that moment may still be a long way off, if it's coming at all. I can't be bothered to try to reconstruct a chronology of the last couple of months. Frankly, the "story" doesn't matter. I merely stumble from one little drama to the next.

I'm still on the clinical trial. In theory I am receiving one dose of elranatamab every fortnight. In practice, we're yet to get anywhere near a routine. I've been in and out of hospital with cytokine release (including a 10 day internment over my birthday). And the dosing regime is frequently derailed by neutropenia or anaemia or both. I'm on regular G-CSF to support my neutrophils, but it doesn't always seem to help. And I've had quite a few blood transfusions. Last week I got diagnosed with an infection, which I'd clearly been suffering from for a while, but which hadn't been detected because my body wasn't running a temperature. It was "only" a rhinovirus, but I just don't have the physical resilience to deal with things like that. It was pretty grim. Another of the (many) occasions where I'm left re-evaluating the preceding week(s) and thinking "oh, so that's why I was feeling so shit". Life is just a sequence of events. It doesn't feel like it has direction. Far from seeking the light at the end of the tunnel, I'm increasingly resigned to the fact that I'm living in a labyrinth. We may just be going round in circles for all I can tell.

Right now it's actually a month since I last had a dose of the drugs, because of the various hiccups. I'm due back in next week, by which time we're hoping I'll have sufficient neutrophils to enable dosing. The lack of even a basic chemo "routine" makes life really hard mentally. I have no idea what even the next few days look like. I'm making several visits to the hospital, most weeks (a long way from the "once a fortnight" promised by the clinical trial protocol), and every appointment has the potential to turn into another melodrama. Will I get dosed or not? What new problem might we find? Will I end off on a ward for a week? Are the drugs even working? We did at least get a couple of encouraging light chain results suggesting my numbers are finally dropping - and quite abruptly, halving twice in a month, from 1,000 down to 250. I'd like to hang on to that as a positive, but having subsequently had a whole month without treatment, I fear they're probably creeping up again by now. That's another reason why any semblance of routine would be so valuable. Until I have confidence that I'm going to get my next dose on time, how can I pretend we've got the disease under any kind of control? At the moment we're really only attacking my myeloma sporadically.

My other major problem has been mobility, which has been really bad due to a combination of pain and fatigue. I've been effectively housebound much of the time. I looked at the step tracker on my phone, and one day recently I managed just 206 steps. Even going up and down the stairs is a drag. Going out of the house is only possible with my e-scooter, or a wheel chair. I was lucky to be able to attend Latitude Festival last weekend - a minor miracle in the context of recent weeks, and an incredible positive boost to just be among "normal" life. But I only did it by being wheeled everywhere. Much thanks to Marisa and my boys, and also to my brother, Matt and his family. Without them, it would have been impossible. As well as the physical pain, there's the utter exhaustion that comes with anaemia - I don't have to walk far before I'm exhausted. I've always dreaded ending off in a wheel chair. But to be honest, the alternative is so much worse that when the time came, I was just grateful. Still, my life is incredibly restricted, and my world remarkably small.

The clinical trial is in part to test dosing strength, and clearly the dose I'm on is difficult for my body to withstand. It is, presumably, to blame for my low blood counts. I think it must also be in part responsible for some of the pain. And I'm aware I'm beginning to get peripheral neuropathy in my hands, which is currently just an annoyance, but could become much more of a problem if it progresses. In theory I'm supposed to get my doses by now without requiring pre-dosing with steroids, but in practice we're yet to manage a steroid-free dose without me ending off in hospital again with cytokine release. For the time being we've decided not to even try. Steroids aren't nice, but they're better than spending a week in hospital. But whether the drug becomes any less arduous over time, who knows. The plan is supposed to be another 20 months of this.

I'm alive. But I'm not really living. It saps my ability to be interested in anything, to invest in anything. And to top it all, it utterly disrupts the rest of my family, who have no choice but to come along for the ride. We are all supposed to be on our way to Sussex for much of August. But all I know for certain is that I'm due back at the hospital at 8am on Monday to see if my body is in a fit state for another dose.

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

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!

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.

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

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.

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!

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.

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.