Friday, 29 July 2022

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.

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.

Monday, 27 December 2021

Gig economy

All my favourite colours. My sisters and my brothers. See them like no other
Colors - Black Pumas

A blog in lieu of a Christmas letter. Merry Christmas and Happy New Year to one and all

A quick catch up. The autumn in our house has been pretty good. Work and school have gone well, and all 5 of us have done our best to socialise, when permitted. This included a great night out for Marisa’s birthday. Thanks to all who were there.

We avoided covid until the last week of school. Even once two of us had tested positive, we managed to avoid spreading it further among ourselves and were clean and clear in time for my parents to join us on Christmas Eve. Between us, our household has had 10 covid jabs so far... we’re definitely getting the benefit of science.

Marisa and I took ourselves to Sarajevo for a week in October. And at half term we all 5 made a flit to Mauritius for hot sun and bottomless drinks. I felt a little guilty about that at the time, but another month or two’s perspective reinforces in my mind the importance of doing things while we can...

In London, I’ve fitted in several more gigs, including  seeing Black Pumas play for the second time. They’re a bit more of a big deal now, having had their profile raised by playing at Joe Biden’s inauguration in the mean time. I can’t imagine I’d want to see any band that was willing to play for Donald Trump or Boris Johnson.

While in Scotland in the summer, I was reminiscing about a previous trip up there, and wondering how come I’d subsequently almost lost contact with my companion from that long-ago holiday. This gave me the motivation to reach out to several friends I haven’t seen in many years, and arrange to meet up for lunch (or breakfast, or beers...) It’s been a real highlight of the autumn for me to renew my friendship with a number of people with whom I should never have drifted out of touch in the first place. I intend to do more of this, in the months ahead.

My light chains are up a little (230 this time vs 160 last time), but the ratio is static, so at this stage I have no idea if the  change is significant of anything. But it has - yet again - reminded me to live while I can. I’m certainly not going to cower from covid while I’m feeling good and my immune system is operational.

I hope covid hasn’t hit you too badly. It was surprisingly mild on us. Not so for my friend Suzette who had just started a new line of treatment for her myeloma when she caught covid in November. She is currently in an induced coma in the ICU. If my timing had been less fortuitous, I could easily have been in her situation myself. Indeed unless covid blows over before my relapse is complete, I will find myself in exactly her position - trying to avoid an ever-present risk without any meaningful protection. Spare her a thought - especially if you happen upon any mask refusers or vaccine sceptics. By letting covid spread easily, their selfishness increases the risk for everyone who is currently immune-suppressed.

Sunday, 26 September 2021

Unrestricted

Tearing up the radio. Lost in the stereo sound
Lost In Stereo - All Time Low

... KFLC = 163 ... κ/λ = 35 ...

I’m rather enjoying the fact that I feel a long way, right now, from myelomaville. I have to remind myself of the need - every now and then - to give you a status update.

Hiking on Ulva
My latest 3mthly check was 4mths from the last, because we were away over summer (a road trip round northern Scotland and the western isles - it was marvellous). My visits to the hospital are so infrequent that I’ve kicked my dependency on Costa’s cinnamon brioche. There’s not much news - my numbers are stable (the ratio has moved a bit, but that’s probably not meaningful, given the absolute kappa level has not). I feel pretty well - even the fatigue seems to be in retreat. My consultant wants to investigate some rib pain that apparently I’ve been complaining of for a while now - but it’s really not so bad and I’m in no great hurry.

More than 2 yrs since sct#2, that’s a pretty good place to be. A purple patch I must make the most of - I’m glad covid restrictions are receding.

I had the awful privilege of attending a local friend’s funeral last week. I won’t hijack his story into my blog, except to say it focuses my mind - again - on the fact that all we ever have is today, and our job is to make the most of it. I’m trying.

The equivalent period after sct#1 I was feeling so good I even went running a few times (that would be a bad idea now). But 6mths later, my myeloma was (slowly) on the move. A sense of urgency is required: make the most of it when I can.

As well as travel, I’ve been indulging my passions for art and live music. It’s good, though I’m aware gig venues are covidy environments (art galleries tend to be a little more cautious!). Still, I’ve had 3 jabs now, and its a case of “if not now, when?” With international travel getting more possible as weeks go by, M and I have booked a few days away together, and then an excursion further afield with the boys at half term. Because we can.

Saturday, 29 May 2021

Parole

Hiding from the truth won't last. Talk about dealing in the past. Don't apologize
Living In Denial - Michael Kiwanuka

All good, basically ( ... KFLC = 137 ... κ/λ = 22 ... everything else pretty much "normal")

Our choir met, for the first time in ages last week, only to immediately discover we're still not allowed to sing indoors. But with better weather this week, we sang in the park instead. (That's better than singing with a visor on, to be honest.) My lovely friend Kate, who always asks after my health, said how much she appreciates me writing up here: which was very kind of her and reminded me I haven't posted for ages.

Hello, I'm still here! And I'm fine.

The first consequence of loosening lockdown, for me, was a bout of some rhinovirus (I think. It wasn't covid, that much I'm sure). I guess my still-naive immune system might get knocked about by a few of those in the coming months, if social interaction is beginning to return. But it's a small price to pay. And with Marisa and me both two-dose vaccinated some time ago now, I'm increasingly unfussed about any personal risk from covid. The only significant consequence of my cold (after a day of man-flu moping) was that the coughing and sneezing really upset my ribs. So much so that a little bit of me feared it was an indication of something more. Therefore, I was more than ordinarily relieved, last week, to get my numbers and see they're unmoved - in fact the KFLCs have wobbled down again a bit. Crucially, the κ/λ is static. My myeloma is doing nothing. 

We've survived the lockdown - the last few weeks were pretty tiresome and things were getting decidedly tetchy in our house. We were all glad when the boys returned to school. It's nice to watch them getting their social lives back - in particular to see Gyles making the secondary school connections that were so abruptly interrupted in Yr7. But honestly, I think my lockdown was easiest of the family - I had an office to escape to so I got more space and variety than everyone else.

For entertainment and diversion, Marisa and I took a series of walks along the Thames. In total, over lockdown I've walked from the eastern end of the Royal Docks all the way upstream to Kingston. As well as the entire length of the Regent's Canal. It's been rather a good little "project". And time just the 2 of us, walking and talking, has been good for our souls and our relationship.

With the lockdown lifting, we're going - yet again - to try to get on a plane tomorrow. After abortive attempts last Easter, and again at Christmas, I'm optimistic this time might actually work. We're "only" going to Portugal, but even that seems quite exotic. I'm positively looking forward to the indignities of air travel, and mostly to long leisurely hotel breakfasts! Bring it on.

Wednesday, 17 February 2021

(Im)patience

I don't want anything. I know it's not your fault
The Adults Are Talking - The Strokes

... KFLC = 154 ... κ/λ = 22 ...

Lockdown does drag on, doesn't it? Endless repetitions of the same until you can't even remember how many weeks it's been. While 2020 is destined to go down in history as a year of pandemic, for me it was a year of recovery after 2 years of treatment. I breezed through a lot of last year's pandemic restrictions, but even my patience is wearing a bit thin by now. The longer it's gone on, I'll admit, the more I've struggled with everyone else's gripes and groans. I know one can grow through adversity. I know one must learn to make the best of the situation one finds oneself in. Honestly, I worked all that through in my head ages ago. I would really prefer not to be forced to revisit it. I'm at peace with my uncertain future, the loss of autonomy and agency, the excessive amount of wasted time, and the ever-present lurking mortal risk. But I'm just as happy not to disturb the surface of that particular pool.

Hearing people articulate those thoughts now, makes me feel a little lonely too, because it reminds me that as well as experiencing the physical ravages of myeloma alone, you inevitably go through a lot of the mental journey alone too. It's hard for anyone to comprehend something they have not experienced. Last March we had a holiday booked and paid for. The travel agent tried, for a while, to shirk his responsibility to refund our money. In our conversations, he almost seemed to seek my sympathy for his predicament - the pandemic represented a mortal threat to a business he'd been building for years.
"I had a successful business too, once", I replied, a little acerbically.

So... I too will be glad when lockdown is over now. Not so much because of it's privations, but because I'm done with thinking about them. It's gone on long enough! Once the elderly and vulnerable have a modicum of protection, I can no longer see justification for continuing to blight our children's lives. The last year has taken a hefty toll on them. Our collective mental health deserves a bit of respite now please.

There is good news. My light chains had been trudging very slowly upwards. I can't find where I wrote the last few results down, but if my memory serves, they had crept up from 130 to 150 to 170, and I was anticipating they'd be 200 by this month. But at today's appointment, they're back down to 150. And the ratio is right back down to 22 - as low as it's been. My myeloma appears to be static. I worried for a while that 2020 would be my only clear year (much of it wasted due to covid!), and more recently I've been assuming 2021 is the only window I have before I'll probably be dealing with my myeloma all over again. Today I'm imagining I might get a run at 2022 as well.

Have vaccine, will travel (just as soon as they open the airports).

Monday, 14 December 2020

Seasoning

Let rip, like you drank all of the tequila
Tokyo Drifting - Glass Animals

I'm alright, jack

Somehow I have felt no urgency to post, these last few months. There's been no myeloma news. I don't know my light chain number right now, but the indications are it's not moving too fast, I'm certainly not experiencing anything approaching symptoms. Indeed, I've been as good as it gets - little fatigue, and even my back has been OK.

So, I bristle each time I hear someone wishing for an end to 2020. This is a good year, thankyouverymuch.  If we're sick of 2020 merely for the inconveniences it has contained... well just take it from me things can be a lot lot worse than that. If you think 2020 was bad, go re-read my posts from 2018. That year really was a shocker.

Of course, for some covid has been a much more significant trauma. And indeed, other sources of personal trauma haven't ceased either. If 2020 has been hard on you, or those you love, I offer - as always - a little shared strength to get through.

In our house we have retained as much sanity as possible. It's hardest for the boys, with this on-again-off-again life we all lead, and their social lives have been really curtailed. Marisa and I have both at least had work to distract us. (I've ended off taking a part time role managing the local community centre of which I had previously been a trustee for a number of years - it's a long story.)

The biggest trauma in our lives, during 2020, was probably saying farewell to our little red car. For the authorities it was a polluter that should be off the streets. But for us it was also a link to the past since it was once upon a time my grandparents' car. Still, if waving her off to scrap was the worst thing that's happened this year... I clearly don't really have anything to complain about.

Back in March, the first lockdown prevented us taking a trip we had planned to Mexico and Belize. In the familiar spirit of living-for-now, we've concocted another of our mad little schemes for Christmas. It is dependent, though, on successfully getting on a plane... I won't jinx it by writing it up here today. Assuming the plan comes off, I'll tell you about it later.

In the mean time, have a Happy Christmas, and stay safe. Here's hoping vaccine derived immunity releases us all to a more "normal" 2021. Our collective New Year's resolution better be to make the most of the opportunities we get?

Tuesday, 16 June 2020

Myeloma 101

Can I take this for granted?
Sex crime 1984 - Eurythmics

... KFLC = 101 ...

Another teleconsultation with the doctor. Hospital appointments by phone are vastly preferable, as long as there’s nothing much to discuss. I hope this is a change that we can retain long after covid.


Roon 101, Rachel Whiteread (2003)
A cast of a now-destroyed room at Broadcasting House,
where Orwell once worked, and which supposedly
inspired the idea of Room 101 in the novel 1984.
My light chains are down again. A light chain score of 100 would have been my most optimistic aspiration for the outcome of the transplant. Instead, at Day +100 the results were pretty poor, and I was warned to expect to be back in treatment within months. But since then, my myeloma has unexpectedly retreated: KFLC = 250 in December; 160 in March; 130 at the end of April; 101 on 8th June. In some ways this response is even better coming after a delay, as it’s still on a downward trend. I don’t want to jinx myself by imagining next time’s score... but any further drop would compare with the absolute best response I've ever had.

I didn't waste either of our time on the phone asking why it's happening, or whether it will continue. I know that no-one knows. Still, I can approximate some rough prognostics. I might have a few years space, rather than just a few months. Of course, there’s no certainty - it could all change next week. Still, for now I’m pretty pleased with myself. Forgive me if I’m not overly sympathetic to anyone else’s lockdown blues.

Two nerdy appendices:

1. Why would myeloma levels drop after a delay?
myeloma cells are a type of B cell.
B cells normally produce antibodies;
and light chains are a component of antibodies
I don’t think there’s a definitive answer to that - certainly not one my doctors have offered to me. My assumption is that it’s to do with the hierarchy of cells. We know myeloma manifests in B cells, and also that it must exist in the progenitors that produce B cells. I don’t know if we know exactly how far up the hierarchy of stem cells it goes. I’d imagine it must go quite far up - that would explain why mm is so hard to cure. My assumption is that maybe the transplant has done more damage further up the cell lineage, so it is taking time for the response to work through to light chains - which are a downstream measure. If a population of B cells survived the transplant, but populations further "up" the hierarchy were more affected, then the observed effect "down" at light chain level would be that the reduction is delayed, as myeloma B cells are not replaced.

2. Why am I able to hope for relatively long time before my myeloma rears back up?
Some myelomas are faster than others. The prof told me, long ago, that I should be glad to have slow-to-go-down myeloma, as it is probably also slow-to-come-up. This has seemed to hold true. The key measure - I think - is beta 2 microglobulin level (β2-m or B2M). Higher β2-m indicates faster likelihood of relapse (and worse survival). Mine has always been low, and that’s a positive prognostic indicator (it’s the basis for staging the disease, which is why mine is always “stage 1” despite all the grief). I have plenty of negative prognostics too: the genetics of my myeloma are high risk (del17p); I get problematic levels of bone damage; it’s proved stubborn to treat; and I’ve got through a lot of lines of treatment... But despite all that, it’s probably going to continue to be slow. And slow, when it’s in retreat, is a very good thing!