DIY-HS

Out of the blue and into the black. You pay for this, but they give you that
Hey Hey My My - Neil Young

My current status is “Trying not to care” …

My dose was delayed a week this month, but that doesn’t in itself matter. My 'eloma continues to be unmeasurable. Apparently it did show up (detectable but not measurable) in one recent test - so I'd fail for "MRD" status on that basis. But I really doubt this has much significance. I'd say my status is "good".

Most importantly - no infections. And I seem to be getting through without too many side effects.  Feel a bit fluey some evenings. And I'm convinced it's possible to have more energy than I currently do. But again, I think that qualifies as "good".

This remainder of this post contains material of a ranty nature that may be triggering for some individuals of  sensitive disposition. Please read cautiously ...

What's bad? Hospital. Hardly surprisingly, after all these years, I'm cheesed off with the whole process. Even when I'm in remission, it goes on and on and on. That's just a fact. Inevitable. But it's sad to have to deal with my cheesed-off-ness in the context of the NHS, because the NHS is such an awful mess.

My monthly treatment involves procedures in three different departments in the hospital, which therefore need to coordinate. But unless I'm the self appointed coordinator, I know they don't. Left to their own devices, they could easily book three arbitrarily different appointments, and communicate them to me separately by post. Which wouldn't arrive in time anyway. Plus there's a load of wrap around stuff - referrals (e.g. for physio), vaccinations, tests, prescriptions, the list goes on - that wouldn't happen at all without me organising large parts of it.

Do-It-Yourself Health Service. DIY-HS. Not a good innovation.

The root cause is simple. Not enough staff, and too much turnover thereof. I'm not saying that's the only thing wrong. But it is visibly, obviously, the single most significant thing wrong. A derelict system (would whoever voted for the tories just, please, stop) that pays out on patients. I guess I should consider myself lucky that it pays out on me primarily in timewasting:

“You’ll have to come back tomorrow”

I wouldn't want to be awating diagnostic results, or facing front line treatment, in this environment. People are, of course.

Restricted Airspace

Everywhere you go, always take the weather with you
Weather With You – Crowded House

Another month, but probably not another dose. Plus school holidays and the accommodations that entails

I was walking through the hospital yesteroday and recognised one of the nurses from my stay in ICU. I think I was surprised, more than anything, to have made such a certain identification, from somewhere in the post-coma fog. Before I knew it, I had stopped her and introduced myself. She didn’t remember me (fair enough, ICU is a high traffic environment). I said how grateful I am to them all, and how difficult it is to get an opportunity to say thank you. She asked about how I ended up in ICU. When I told her, she said

“I’m sorry you had to go through that”, and, as we parted “enjoy every day”

Humbling.

I was in the hospital for a few precautionary tests. I’m pretty sure I’m incubating some respiratory infection yet again and obviously I’d like them to make it go away. Yet another course of antibiotics and more tests. I suspect this week's dose will get postponed, about which I care little. My doctor advised me – I had worked this out already – to minimise infection risk by wearing a mask in crowded public spaces. I already do. I can imagine that, as autumn descends, there’ll be significant parts of “public” from which I’ll just have to withdraw. When you've been where I've been, then its hard not to perceive breathing as a precarious and fragile process.

That and the fact that I still have intermittent problems with my mobility (my legs) serves to remind me that my stay in ICU may cast a shadow that I must live under forever. DWP (the welfare bit of UK govt) finally came through with an award for PIP (disability support payments), and although my mobility is better than it was when I filled in the form, I can still see that shadow – of disability and vulnerability - over me.

I’ve been home alone for two weeks, with Marisa and the boys baking in North Macedonia, while I weather the storms of an English summer (I’ve had to sweep fallen debris out of my driveway three times so far this week – and it’s August!) My main emotional reaction to our holiday circumstances – that I’m not safe to travel – is being annoyed, a little angry, at the endless intrusions in our lives.

It’s interesting which parts of our predicament elicit empathy (I don’t need sympathy), and which do not. Travel is clearly not seen as a human right, so we’ve had to fend off a variety of responses we didn’t need. Yes, it’s only one summer… except for all the other summers. Myeloma trashed the summers of 2012, 2018 and 2022. In 2019 we did get away… at three weeks' notice. And of course 2020 and 2021 we navigated covid, like everyone else. If you thought covid was annoying – that’s basically every summer for us for the last six years. Will it be easier next year? No. And yes, Marisa could have made less adventurous, more ordinary, travel plans, except as a single parent travelling, there needs to be something in it for her too. If she was feeling the strain before she left… I put it to you that the destination wasn’t why. And no, the fact that I’ve done a lot of travelling in the past does not somehow make being grounded less of a restriction. Think about it; the opposite is true. It’s like telling a keen cyclist that it doesn’t matter their bike’s been nicked because they’ve already done lots of cycling.

Any which way round. They’ll be home this afternoon. And although I don’t want to curtail their fun, I’ll be very glad to see them.

Update 10/08/23

Family home last night. Yay! This morning, all my infection tests are negative. The dr says this is good news, though since I can still feel something (and indeed she can hear something) on my chest, I’m not sure I agree. If we’d found something, we’d know what we were dealing with. There’s still a few results to come back, so we may yet get a hit. But we may not. The dr is not concerned, so I guess nor should I be. And they’re going to keep a close eye on me while I’m still showing any symptoms - that’s probably what really matters (but it does equate to endless tests and trips to the hospital). This also means I do get a dose of elranatamab today. The dr would tell me that’s good too. I’m ambivalent really - there’s no myeloma to attack… but we want it to stay that way. If only treatment didn’t leave me so utterly immunesuppressed, I’d be more carefree. I read media reports of covid EG.5 “Eris” with some trepidation

🔥💣

We were born with nothing and we sure as hell have nothing now
Things We Lost In The Fire - Bastille

Dosing day today. More importantly … MRD- …

Today I got my BoMB result from the other week. There were no detectable myeloma cells. If there’s anything there at all - and realistically, we assume there is - it’s at a level below the sensitivity of the tests. (By comparison, at their worst, previous BoMB results have shown myeloma to constitute up to 80% of my bone marrow.) My remission continues. Alongside blood results, urine tests and my latest PET scans, this confirms not only complete response (CR) but stringent complete response (sCR) and even that I’m “minimal residual disease negative” (MRD-), the best possible status. Caveat that by noting that my doctors put little significance on these distinctions and would have told me merely that I continue in CR, if I hadn’t asked specifically about MRD. I think their scepticism is because the criteria for the different statuses aren’t entirely standardised; because it’s not completely clear what the prognostic significance is; and probably because CR is the key indicator measured by the clinical trial.

Still, you don’t need a medical degree to understand that a better response is a better response. And even though I’m sniffy about these distinctions when it feels like other people boasting, I’m not entirely averse to a bit of crowing myself. Eleven years on from being told I have a fatal, incurable disease with a median life expectancy of five years… it’s nice to know we have the upper hand right now. More poignantly, having lived through several periods where my test results stubbornly refused to offer up good news, seesawing better and worse from week to week, and so depriving me of any confidence in my treatment or prognosis (in 2018-2019 we got through three lines of treatment in quick succession with “progressive disease” (PD) the officially recorded outcome of each)… it’s kind of cool to be in a different place. For now, I’ll bask in this.

It also validates my decision to participate in the elranatamab trial (MagnetisMM-9). I’ve participated in several clinical trials over the years, with mixed results. One (PADIMAC) got me access to a drug that worked, though my response fell below the threshold for the next part of the trial. One (Myeloma XII ACCoRd) didn’t work at all, and just gave me horrible side effects. And those were both efficacy trials (“phase III”) where this is a toxicity trial (“phase I/II”), meaning we started this time with very little empirical evidence that the drug works at all. Despite a few anxious months at the beginning when my light chain results stubbornly refused to move in the right direction (and each dose hospitalised me), we’ve conclusively proved now that elranatamab works for me.

My life is not as normal as my blood, but it’s got increasing amounts of normal in it. Last night we went to “Kew the music” at Kew Gardens, to see Bastille. It was billed as a “picnic concert”, which is kind of the perfect gig for me because it means you can take a chair and sit down when you want to.

Yay for summer evenings, live music, and healthy bone marrow.

Antatrophy

How does it feel when you wake in the morning? How does it feel feeling sun in the shade? How does it feel when you slide down a sunbeam?
How Does It Feel To Feel - The Creation

The bit of me that just likes writing - I increasingly self identify as a writer - got the better of me. There's no news in this post, just reflection. If you were only after a status report, I refer you back to last week

Normally I tell dialm stories after the event. But this one won’t have an obvious end point. When it ends - which I think it will - I will not immediately notice. There won’t be a single moment when it ceases, but I’m reasonably confident it will, in time, cease. So instead of waiting until it’s ended, I’m going to tell you now. As those who have to live with me know, I’m still having some physical issues - swollen feet, and achy knees - as features of the slow recovery process from being in ICU. But beneath those superficial issues, there’s been something much longer and slower going on. When, in late January, I first became aware that there was more to me than my awareness, I really only occupied just a tiny space inside myself. Most of me, really, all of my body, was beyond me. I couldn’t move it. I could barely feel it. It came with all sort of alien issues: atrophy; lost reflexes; wounds.

Over the ensuing months, I’ve grown back into my body. I regained movement in my arms first, before my legs. When I was briefly put back on the ventilator I remember being very scared that I was going to lose the little movement I had regained. I spent a night in ICU, ventilator in, incessantly wriggling my arms and legs. As soon as I could communicate I asked for two things - my iPad and some physio kit. They tied resistance bands to the sides of my bed, which I used endlessly even while the ventilator was still in. I was on a mission of repetition and perseverance. Initially it needed the strength of my arms to lift the weight of my legs in order to bend my knees. Perseverance gave my leg muscles the strength to lift themselves.

Eventually (ventilator back out by now) I reached the point where I could move my whole upper torso. Being able to turn in bed was a little milestone, and I reinforced it with a rule that every time I woke from sleep, I had to turn myself over. Genuinely gruelling for a few days, but repetition leads to capability. That’s how bodies work. I took the same approach when I was first strong enough to sit. As a self imposed rule I decided that all meals would be consumed sitting on the edge of my bed. It was really hard. I hadn’t long learned to eat again, and now I had to do it while straining not to collapse. But I’m sure the speed of my recovery, both in hospital and subsequently, has been significantly driven by that determination. That macro-physical recovery has continued - tentative steps, climbing stairs, walking without a frame, going outside, riding a bike… And it’s a job almost done. I got a Fitbit for my birthday. It’s a useful way to track pulse, blood oxygen etc (though I’m not confident in its accuracy. I still measure these things properly, too). And of course it counts steps. We just spent 48hrs in York, and I walked 16,000 steps in a single day. It’s hardly record setting, but it’s mind blowing if one remembers where I was.

My time in Florida left me with several pressure sores. One might hope that modern nursing would avoid these things, but I accept that in the process of keeping me alive, it was probably impossible. Pressure sores are horrid, I can report, and very slow to heal. We finally stopped dressing the last of mine, figuring it’s near enough healed to look after itself, only a couple of weeks ago. It has required months of patience, removing dead skin (“debriding”) and encouraging growth. Because the wound is wider and deeper than a typical cut or graze, it has to heal differently. It’s not just a matter of a scab forming while the skin seals beneath. I haven’t subjected you to pictures, as it’s been pretty gross, to be honest. But here’s a little close up of just a part of what’s left now. I think it’s remarkable, if you look at it closely. You can literally see the tiny blood vessels growing back, meshing the skin back together as an organ. It’s not a bad visual image of the whole process.

It’s not just been flesh and muscle, regrowing. It’s been my nervous system too. I had lost sensation almost as much as movement. My body was never completely numb. The medics used to check, quite regularly, and I gather recovery is better the more sensation you retain. Certainly the numbest bits have been the slowest. I have a couple of spots - the back of my head where I must have rested in the same position for weeks, and my upper lip where the ventilator rubbed - which are still not normal. For a long time merely touching my scalp felt like a mild electric shock (an antatrophic shock?) or one of those things for massaging your head.

My lizard brain needed to regrow, too - learning reflexes, like how to swallow. Dammit, somewhere at the start it really did include learning to breathe, hard as that is to believe. When they take the ventilator out you abruptly lose the mechanical rhythm of inhale and exhale, and have to substitute it with your own reflex. It’s actually quite a scary moment. I can vividly remember the feeling of not knowing if I was breathing in or out; of having to be reminded by the physio to breathe at all. They made me take a swallow test before permitting me to eat. I didn’t pass first time. (I have a madmory about being force fed yoghurt.) Swallowing; coughing; breathing: stuff one takes for granted but which came back gradually. I still have to stop and concentrate on my breathing, sometimes. Blood cancer is like having the autopilot disabled in your bone marrow. Things that used to happen automatically now need regular monitoring and periodic course correction. ICU does a bit the same to your reflexes, at least transiently. I don’t entirely trust mine, yet. I’m more careful than I was, prior to this experience, to avoid the risk of choking, because I’m not totally confident in my body’s ability to reflexively open and close my windpipe. My balance is still not 100%, either. My reflexes are meshing themselves back together, but there will always be scars.

The combined effect is of regrowing into my own body. The nerve numbness appears to be chased out by muscle movement: as I regain control and use, normal sensation comes with it. From that first day of awareness, when I inhabited just a tiny space inside myself, to the sense of having colonised my own limbs as I started to be able to move my hands. Learning to inhabit enough of my body that I could first sit, then stand, then walk. From there, the numbness - neuralgia - has slowly receded down my legs: from knees to ankles; from ankles to soles; from soles to the balls of my feet; then just my toes. And now not even all of those. A tingly 24hr reminder of where I’ve been. Given how slowly this has progressed, I reckon the final knuckles will take months. But eventually, I believe, I’ll occupy my own body, and no longer be conscious of this tide mark of trauma. Somewhere, sometime, my recolonisation will be complete.

What kind of a dialm story is this? Of course it is symptomatic, literally, of the bigger story that’s been going on; my stay in ICU and the months since. But maybe more interestingly, it’s also a much more trivial story. One of the many minor annoyances that myeloma insists you carry around with you at all times. Marisa could tell you that at any moment - and this has been true for many years - I can always offer up quite a long list of of aches, pains, issues and inconveniences. That’s just how myeloma is. It’s an ever accumulating array of baggage. Living with myeloma is like having to carry an awkward and cumbersome load of packages and parcels around, everywhere you go. Every time you want to do anything, you have to first assess what to do with all your myeluggage. Some myeluggage (my poor old back) is here to stay. Other myeluggage is with me only for a while (I’ve had plasmacytomas. I’ve had anaemia. I have neither, right now).

Since I could walk and discarded my zimmer frame, one might imagine the mending is done. But not yet. For the time being part of my myeluggage (is that “my’eluggage”???) is a dull, buzzy, throbbing, slightly nothing feeling, receding out of my feet, day by day as I finally grow back into the whole of my body. Sometimes painful. Always noticeable. Yet I doubt I’ll notice the day it’s finally gone, so there’ll never be an apposite moment to tell you about it. Now will have to do.

❤️💣

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

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

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

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

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

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

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

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

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

IVIG

Drink drink drink drink drink new blood. So we need to drink new blood. Blood!
Drink New Blood - Iggy Pop *

Cycle 13 begins (though I missed cycles 9, 10, and 11 due to indisposition)

My first month back on the sauce (cycle 12) has passed pretty uneventfully. I seem to have had far fewer side effects than I was experiencing prior to Christmas. I’m not counting my chickens, until we’ve had a few months as proof of concept (concept being: “maintenance treatment worth living on”), but I’m optimistic that this is the new way of being.

So far, as well, I’ve avoided the neutropenia that repeatedly interrupted things before. If that remains the case (again, let’s give it a month or two before getting too cocky), then it will make the process smoother, and also it means I’m going to be a little less immune compromised, which is quite a big deal in and of itself!

To that end, I’ve been approved for monthly immunoglobulin (IG) infusions (intravenous: IV so, all together that’s IVIG), which is basically regular top up with donated antibodies, beginning today. This won’t completely overcome my immune suppression, but it could help. I’ve waited months for confirmation of this because there aren’t enough donors for this, so you have to apply for access, and justify your need, I guess my recent drama proved mine.

 

I haven’t put this shout out for a while, but I’d like to encourage you to consider donating blood. Register here - assuming you pass the screening, they’ll tell you what to do. There are lots of locations for blood donation, including a lot of pop-ups in local community building and the like. You can donate as often as you can spare the time, up to three or four times a year.

Once you’re a blood donor, or if you already are one, and if you could reach one of the 25 specialist platelet donor centres, you could switch to donating platelets. Currently they’re seeking A+, A- and AB+ platelet donors. Really, they’d like platelet donors to be regular, donating every three months. You can register your interest here.

Or, if you live near one of the specialist plasma donor centres (there are currently three, in Twickenham, Birmingham and Reading), you could register here, for that. I guess proximity would be the key reason to go this route - if you live in the right place. Plasma is then separated into all sorts of specific products, including immunoglobulins. (Obviously, all those links are UK. Readers outside the UK, I’m sure the need is just as great where you are, and there’ll be a system, if you google for it.)

I’ve been dependent on all of these, at one stage or another. I needed pints of blood, to deal with anaemia, on and off all through last year. During 2019 there was a period where I needed platelets several times a week. And from now on I’ll be dependent on plasma donors, as the source of IVIG. So, donors are directly supporting people like me - and obviously all sorts of other diseases and trauma. If you can, maybe you should. (Don’t let queasiness or needle phobia be an excuse. Eleven years in I still look the other way every time they stick a needle in, which they did four times, on Wednesday alone during delivery of cycle 13.)

The rest of my story - my post ICU recovery - continues, in reasonable shape and at respectable speed. Nothing exciting to report. I’m getting there

_________________________

ADMIN - UPDATES BY EMAIL

Those of you who were receiving email updates will have noticed the service stopped working a while ago. I only realised more recently. I have set up a replacement, via Google Groups, which is now operational. Sorry for the delay in doing so. Joining the Google Group should enable you to receive future updates by email when I post them on the blog. I tried to send a joining invitation to those who were on the old service, but I can see many haven't verified, and the invites will have expired. If you want email updates, and aren't getting them, please click on the Google Groups link (top right of blog) to join the new service.

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_________________________

* My boys tell me pretty much any song worth listening to these days has parental advisory warnings on it. This one definitely proves that Iggy knew how to provoke warnings and general outrage, bridging the gap from the days of punk to the 21stC

DWP

Oh momma dear, we're not the fortunate ones. And girls, they wanna have fun
Girls Just Want To Have Fun - Cyndi Lauper

Your dose is nearly over. This is like the bit where the IV machine goes “beep beep” to warn you you’ve got five minutes left, only the nurses are always too busy to disarm it, so it just “beep beep”s for those five minutes *. Just be warned… the last five minutes can seem to take an eternity. My steroidal state could write, at length, about the range of beeping patterns emitted by machines (and some associated madmories), but I’ll show restraint, and stick to important stuff. This is Part Three of this little sequence, and - for now - that’ll be all. We’ll take your cannula out, and you can go. You’re not feeling light headed are you? If you feel at all unwell, call us immediately.

If I “need prompting to take nutrition” (which I do, but it’s a relatively trivial part of my condition, and it doesn’t come with a financial cost, just awareness and monitoring by Marisa), I get 4 points toward my “daily care” Personal Independence Payments (PIP) assessment (need total of 8 points to qualify). Whereas if I can “walk 50 metres” I automatically, get 0 points for the “mobility” part of PIP. Yet getting PIP Mobility is a requirement of applying for a blue badge (that’s a disabled parking permit). So, 50m equals no blue badge, but “you need to take another protein shake Alex” means I’m halfway there to having daily care needs. This is by no means the only absurdity of the benefits system. I ignored benefit claims almost entirely for most of the time I’ve been ill. I continued to work. I’m not hard up. I don’t self-identify as a claimant. But I increasingly recognise that my myeloma has had impacts. My ability to work is severely curtailed: “limited capacity” in Department of Work and Pensions (DWP) jargon. I need practical support such as a blue badge due to mobility problems. I’m even facing up (slowly - coming out of ICU has been the trigger for this), that my mental health suffers from myeloma too. Not only do I suffer anxiety now, but I’ve suffered social anxiety for the entire time since my diagnosis. I avoid situations where I might have to meet new people who might ask me

“So, what do you do?” If you want one simple action towards being a nicer person, find more inclusive ways of breaking the ice, please. Some of us can’t “do”. But before we digress too far…

I was advised by a social worker that I should make a PIP application, because it would help if I could answer “Yes” to the question “Do you get PIP Mobility?”. It’s not the (honestly, very small) sums of money involved that I’m primarily interested in, it’s the recognition of my disability. 

Part of the issue for me is the complete inability of the system to understand relapsing/ remitting conditions. I had a long conversation with an advisor at MacMillan/ Citizens Advise about what constitutes a “good day” or a “bad day” for me, how often each occur, and how often they are likely to continue. Not only are these quite hard questions to answer (he called when I was full of steroids. Right now, I think I could climb Everest. Sometime in the next 48 hours I will crash and not even want to get out of bed), but they’re not reflected on the PIP application - so we will have to encode our answers. Basically, can we legitimately claim that “bad days” occur most of the time? (Answer, because it’s true and because it has to be true: Yes.)

A similar issue occurred with the only benefitI I currently receive, Employment and Support Allowance. (ESA). In order to qualify as part of the “Support Group” (the only way I can continue claiming), I must have “limited capacity for work”, be working less than 16 hours a week and earn no more that 16 hours at minimum wage. I just quit my job entirely, because it was too much. I was only working 11 hours anyway and I’d been off sick for most of the last year, so the hours constraint is no issue for me. But, for one month early last year, the DWP was under the misapprehension that I’d exceeded the income threshold by 1p. Some DWP jobsworth [expletive deleted] decided that this meant I no longer had “limited capacity”, stopped my benefit with immediate effect, and entirely cancelled my ESA claim. I kid you not - here’s my letter in the paper about it, and here’s their letters to me…

A woman phoned me up. This should have been my warning of what was coming, but I was ill at the time (beginning to relapse, it transpires), and maybe didn’t pick up the signals, and anyway, she finished the call by saying she’d come back to me. I was expecting another call. What I got was two letters, dated the same day but posted separately, as though this was a process. One informed me they were reviewing my claim. The other said, having reviewed it, they were cancelling it. Aside from the insult of doing this without properly consulting me, and the fact that they were wrong in their calculation, it’s preposterous to link my earnings in a month to my ongoing “capacity”. Within two months of them cutting my benefit, I was off sick again.

The published information defines earning thresholds weekly, which is in and of itself an implied judgement about the calibre of people who might need support. Weekly pay is traditionally associated with low pay, blue collar work. And that’s who the system thinks benefit claimants are. The problem occurred because I got a monthly payroll payment. “I calculate this by dividing the monthly payment by four”, she explained. “But there’s more than four weeks in a month” I replied. If we’re to be pedantic - and they started it by arguing about 1p - there’s more than 52 weeks in a year, but I never got that far because she simply told me “That’s how I calculate it”, and that was the end of the call. The issue was made worse by conflicting information on the government’s own websites and small print. (The big print turning out marginally more generous than the small print. Quelle surprise.) Some sources said you must earn “less than” the £143 threshold (its higher now, but not in line with inflation), others that you must earn “no more than”. This would be basically academic… as long as no-one was quibbling about 1p. The DWP did, eventually, admit they were wrong and reverse their decision, but only after I had engaged both the appeal process and my MP - though the DWP denied any of those had at all affected their review and reversal. They acknowledged they were wrong, but not precisely how. Was it the calculation or the miscommunicated threshold; the lack of process or the unwarranted extrapolation to assumptions about my capacity? Last time I checked they had done nothing to remedy the inaccurate information online - even though I provided them with screenshots and urls for the sites and pages concerned.

Nor have they defined a monthly limit, which would squeeze out all the ambiguity. But that would probably require political, not just administrative, engagement, and the last I head from the government on benefits, was a promise to step up the surveillance for “sanctions”. It doesn’t sound like the government has any interest in making the system better, just meaner. Perversely, I’d like a system that might enable me to claim less and contribute more. But while government thinks I’m a weekly-earning nobody they presumably have no aspiration for my potential. (To be clear, that “nobody” is my assumption of their pejorative, not my own.) Limited though it may be I am not without potential, but for administrative reasons, I can’t act on it. In truth, the “lucrative employment” bird has probably flown now for me, but there was ten years of my myeloma life where “the system” and I could have had a constructive relationship. I might plausibly have got my recent employer to pay me more per hour, for example, and paid some of it in tax (and they could have tapered my benefit too, if they only had the wherewithal). Fundamentally, one’s per-hour earning potential has sod all (technical term) to do with one’s capacity for work. Nor does, in the short term, being able to work more hours, when the underlying condition is expected to return. Both might be justifications for tapering - or even zeroing - the benefit in the short term, but the system can’t distinguish between these two very different things. It doesn’t understand what a relapsing/ remitting life is like.

They did, in the end, give me the £3,000 they by then owed me. It’s a good thing I wasn’t using that money to buy my kids food. More importantly for me, my ESA claim counts towards National Insurance (NI) contributions. My pension and (more likely) Marisa’s pension is at stake here and that does matter. My issue with benefits, personally, is not so much about the money. I’m not hard up. On the other hand, I can’t work. I’m fortunate that my previous career means I have a reasonable pension, and that I took the decision from the very start not to leave it, legally, in a pension scheme. Twenty years ago I imagined I might want to retire early, and I didn’t want to be forced to wait until 65 to access the “pot”, only then to be forced to buy a poorly geared annuity. As it turns out, I retired not of my own volition, but the intended effect is there - my “pension” is all in savings I can tap as I see fit. And there’s enough of it I can afford to tap some of it now. I can effectively award myself early retirement, and not be too hard up as a consequence. Not everyone living with a relapsing/ remitting disease, a TBIC (keep up), or any other benefit-need that the system hasn’t planned for, is as lucky. If the money counts every week (or month), then being cut adrift for months on end could be a real crisis. No apology, either, of course, from DWP for the hardship their “error” might have caused.

Still, I can downplay my need, but the bottom line is: I can’t work. If/when I could, an hour in my old business would disqualify me from ESA potentially forever. There’s not much incentive to seek a tactical project in the good times on that basis. I’m diverting my energies, as I recuperate, to seeking some voluntary engagement. Will be fun for me; could be a social good; but if we’re just fixated on the money (as DWP appears to be) then it’s lost revenue for HMRC. I’m effectively in a benefit trap. What I’d really like - the benefit system that would reflect my circumstances - would be to be able to work when I could, with my benefit tapered potentially to zero depending on what I earned, but without short term earning being used to judge long term “capacity” and without having my claim cancelled. I’d like the acknowledgement of my mobility need in the long term, even if I don’t deserve support payments in the short term. I think were I ever to get kicked out of ESA Support Group, I’d never be able to persuade them to put me back in. The mere fact that I had, on one occasion, been deemed capable, would mean I would struggle to meet the Support Group entry criterion of it being “unreasonable” to expect that my capacity might in the future return. I’d have to reapply on the basis of short term limited capacity. I could only claim on the “contributions” based route (sick leave for the self employed, in effect), which is how I got in the door last time, but that route only entitles you to six months support, which I’ve already used up. And I’m no longer “contributing” (to NI, they mean. My ESA is my NI contribution, that’s the entire point).

So, in short, Marisa’s pension depends on me never earning more than 16 hours times minimum wage in any single week, now or for the rest of time. Looking holistically at me as a potential earner, and at the condition I live with, that’s obviously a stupid restriction to put me under. I could be more productive, potentially generate tax take for HMRC, be a “contributor”… but only if I’d be willing to sign away, in perpetuity, official acknowledgement of my capacity, and with it, a portion of Marisa’s future pension. And, back to the top, my entitlement to a blue badge will come down to how often I am able to walk 50m. As it happens, I think I’ll be able to say, hand on heart, that much of the week I can’t get out the door, due to feeling shit from side effects, plus fatigue, and that when I do, I’m walking with a stick and severely limited by back pain. That should legitimately meet the criterion, but I’m still struggling with being compelled to tick a “can’t walk 50m” box. Walking was always one of my passions. Myeloma has stolen so much from me. This year it seems to be taking both walking and travelling away from me and I find that very difficult. I don’t really want to be thinking, every time I go to the door, about how often I’ve been out and whether some DWP assessor will try to cancel my PIP claim - and with it my ability to seek support I need. I should be trying to be as active as possible. Yet the system requires me to be physically, as well as economically, inactive. Again, it doesn’t understand relapsing/ remitting conditions. However far I might walk tomorrow, I’ll need driving somewhere soon, where parking will be a problem. That’s what blue badges are for. Or, what if I need to take luggage? I can’t carry anything any distance. Not on the form. No points. Come winter, I might well conclude that buses and trains are unsafe environments for me (infection risk), and be forced to take taxis. That’s a real expense that PIP explicitly exists to support. And I can apply for a “taxi card” entitling me to some discounted fares… but again, only if I can answer “yes” to the question “Do you get PIP Mobility?”

None of these benefits are overly generous. Let me spell them out here (2023-2024 rates). You might be surprised.

ESA Support Group = £128.85 a week

(ESA if you’re only getting it short term, is less = £84.80 a week) 

PIP “daily living” = £61.85 a week

PIP “mobility” = £24.45 a week

(PIP has “enhanced” rates of £92.40 & £64.50 but I won’t qualify for those)

Yes, “daily living” pays more than “mobility”, even though the criteria are demonstrably easier. Yes, the 50m boundary is in place to save the government from having to spend £25 a week. Yes, the knock on effect of their penny pinching (and really, I don’t need the money), is to deprive people of the ability to get recognition of their needs. It’s recognition I crave. Even ignoring the intermittency of my particular challenges, do you really only have a mobility issue if you can’t walk 50m? (There’s a looser 200m boundary but it’s worth fewer points, so with that you’d need to tick other boxes to do with getting confused, needing to be accompanied.)

As far as I’m aware, all other benefits come with means testing. Fair enough, you might say, if you ignore my wider point about status as opposed to mere cash, and about conditions that come and go. Maybe I should have PIP when times are bad, but not when times are good. Except I’ve already been told my PIP application will take anything from four to six months. With a bit of luck I will get it at exactly the moment when I’m most able, and I’ll be desperately emphasising my limitations for fear of being rejected. Perhaps, each time I’m well, I could put in an application, on the off-chance I’ll be crook by the time they get round to assessing it? Or there could, of course, be a better system. But the state of our country’s politics makes me suspect even a change of government won’t lead to any progress in this kind of issue (prove me wrong, Helen Hayes!). And the tories are only interested in portraying people with needs as scroungers and skivers, or, failing that, just as worthless low potential nobodies.

There's such a thing as Carers' Allowance, but Marisa can't claim because she earns too much (it's the old 16 hours minimum wage thing again). The fact that she was recently forced to take a month off, when I came out of hospital, is overlooked. From the government's perspective "care" only has any value at all (£76.75 a week - don't get too excited) if it takes up at least 35 hours of your time every week on an ongoing basis. There must be a million carers in Britain who don't qualify. Now, the right-minded among you (right in the wrong way!) may think this is all a bit take take take. “Where's my benefit?” demands hardly hard up Alex! But the amounts are so small, the needs so great, the criteria so strict, it’s simply a Daily Mail fantasy that anyone is profiting here at the expense of others' hard work. If you live in the UK you’ve been subjected, at some point, to messaging about a “cap” on benefits of £20,000. For a start, that’s not a lot, if you think about it - and the cap went down, while prices go up - but anyway anyone qualifying for “capped” benefit would almost certainly be claiming for housing (we all have to live somewhere) so wouldn’t see most of the money. And if daily living benefit plus housing benefit exceeds £20,000, you can be certain the landlord doesn’t take the hit.

And, before you get too comfortable, because you, like me, aren’t a self identified claimant. Remember, needs tend to just materialise uninvited, whether through illness, redundancy or change in circumstances. Do you know what the savings means testing limit for Universal Credit is? (UC incorporates most other benefits - jobseeking, housing etc.) It’s £6,000.  Beyond that whatever UC you might be entitled to would be tapered - on the assumption you’d be drawing down “income” from your savings. If you’ve got £16,000, you’d get nothing. Their definition of savings excludes your home, and anything tied up in a pension scheme, but includes pretty much anything else - they’ll even include your kids savings if they have any, in your total. And no, you can’t deduct mortgage payments or anything - it’s your assets being judged, not income. So no deductibles. I’ll never be eligible because my pension savings are not in a pension scheme. But even so, £16,000 is just one ISA - and I’m sure many in my readership have that much tucked away. Be clear. The benefit system is not for you. You’d be expected to drain down the rainy-day fund, the deposit-to-buy-a-house fund, the support-for-my-kids-in-case-I’m-no-longer-there fund, the buy-a-new-car fund, the family-holidays-are-expensive fund, until your entire assets were less than £16,000 to qualify for any UC support. It’s hard to quantify how much of the population this covers - statistics on assets often include your home; those on savings often ignore ISAs and investments. Maybe a third of UK households would qualify for UC with no tapering. The rest of us would have to burn whatever prospects we’ve earned and saved, only being eligible once we’re skint. I’m not complaining here about means testing, and merely repeating myself (blame the steroids) when I say I’m not really in this for the money. But I do think that’s a staggeringly low bar for support. I suspect a lot of people imagine they’re better supported than they are. I still laugh at the memory of the friend in the park saying to me, early covid lockdown, having just been laid off,

“I can’t live on £100 a week! I’ve got kids!”… apparently oblivious to the fact that I have long been expected to do precisely that. I don’t know how many people think they’d be entitled but aren’t. I bet it’s more than the number of people who give the tories their majority. Ignorance is a wonderful thing!

As a general rule I try to keep Dialm non-political, and I’ve just slagged the tories off repeatedly. But how a society supports those in need is inherently political. In this context I make no excuse. Britain’s “welfare” system is disgusting, and only supported by a combination of ignorance and complacency. Those who know the truth because they live the reality are already diminished voices both through actual circumstances and through political and media denigration. I try, in my little way, to be an exception to that.

That wraps up this weeks updates for Dialm. If you’re wondering about any progress on my complaints about care after discharge from hospital… Nothing better has happened, and I’m in discussions with the hospital about it (fortunately for me I have an “in” to at least get my concerns heard). It’s all quite detailed so would make a long post. But it’s also case specific to me (in a way my gripes about benefits are not), so on that basis I don’t think it justifies me subjecting you to it. The underlying problem - those in most need lack agency and so get disadvantaged - is much the same. If and when I extract a more generalisable conclusion, I may yet post it up.

* In the quest for transparency, I’ll note that my current treatment doesn’t actually involve an IV. But I couldn’t extract much creative prose from the source material of “sitting around for hours on end waiting for a prescription”

TBIC

Never free, never me. So I dub thee unforgiven. You labeled me, I'll label you. So I dub thee unforgiven
The Unforgiven - Metallica

I promised you a dose. This is Part Two. Let me know if you’re feeling at all nauseous. We can give you something for that, but it might make you constipated, but we can give you something for that, but it might cause a rash

I’ve been reflecting further on my position in myelomaville. It’s so long now since I started treatment that I’m very distant from the initial fear that came with my deadly diagnosis. But I’m still not cured, and even the treatments only just emerging in research don’t appear, as yet to offer the prospect of a real “all clear”. My myeloma continues to be “Treatable but Incurable”, and aside from the specific physical indignities of my variant of disease, that’s probably the most meaningful classification of my “type” of cancer. It's not curable, it won't go away, but it is treatable, there's stuff we can do, for a while longer yet. Treatable but Incurable Cancer. TBIC (I’m making up my own acronyms now…): a cancer that will always demand attention, and for which it’s nearly impossible to make a meaningful prognosis. You can expect to live with it for a long time. And you can expect it, eventually, to kill you. When I speak to others who live with diseases combining those features, I tend to assume they understand my experience, and vice versa.

That wasn't how I processed it when I first learned about it. At that point the basic outtake was just the one word:

INCURABLE

Which comes with a lot of baggage, let's be honest. But even all these years later, when I've got over the shock, I still find my predicament surprisingly obscure. Culturally obscure that is, but not actually as rare as one might imagine. If I forget, for a moment, the specifics of the fact that my tumour clones derived from plasma B-cells, and focus on the more general impact of treatable but incurable disease, I'm in a different context. Obviously, when I go for treatment I want a myeloma specialist, doing myeloma specific interventions. But the rest of the time, what company do I really keep? TBIC is quite a new categorisation. It's been talked of for a while, if one goes looking for it, but you're not going to bump into it in the street. MacMillan are probably the single most visible source of patient support for cancer in the UK. What do they have to say about it? Um, not much. If one digs into their site to the diagnosis page you can find the line

"These days, many people are cured of cancer or are able to live with it for many years."

Which kind of nods to the truth, but in a passing sort of way, and only in the context of a consolation prize for not being cured. Oh, and it's buried in the site. It's not - they consider - home page news.

But the TBIC community is increasingly significant, as better treatment prolongs lives. No-one really expected me to get ten plus years. I'm optimistic now that I might get twenty. But actually, optimism isn't really the point. I've come to accept that while mortality is certain, persistence is uncertain. It is a bit pointless making guesses when there are so many unknowns. I don't know what treatments will be available when I need them, to the extent that it's a race between my tumour and science. And I don't know whether I'll be side swiped, as I so nearly was this winter. I could die while "cancer free", but it would still be the myeloma that got me. What is the point of fixating on so many unknowables. Much clearer, and more honest, to begin to think of cancer as a chronic disease and consign the "Oh Lordy! I might die!" stuff to being just one of the many facets of that disease.

Which brings me back to profile and awareness. Being TBIC is not well understood. “Treatable” is often assumed to mean “will live a long time, with only minor difficulties/inconvenience”. And “incurable”, in the context of cancer, is often assumed synonymous with “terminal”. So “treatable but incurable” seems an oxymoron. But we have both meanings wrong. On the one hand, just because a treatment can be applied it doesn't mean it is necessarily likely to be successful or prolong the your life. And on the other, incurable isn't the same as dead.

It's difficult to get good data on the incidence of TBIC because no-one tends to categorise diagnoses this way, and some cancers progress from initially (hopefully) curable to later proving (sadly) incurable - either by recurrence, metastasis or just late diagnosis. The UK is better than most for collecting this kind of information, because of the existence of the (single, consolidated) NHS. It's  another undersung benefit of our health care system compared to almost anyone else’s. At the narrowest measure we could take of TBIC prevalence, about 130,000 people in the UK are living with cancers which are TBI from every diagnosis. But a wider definition, to include relapsed and secondary cancers from initially curable diseases that weren’t cured, might involve twice as many people. Maybe one in 200 of the adult population. To put this in the context of relatively well known treatable but incurable diseases, that’s a similar prevalence to Multiple Sclerosis, or to Crohns/Colitis. All of which leave me thinking we have a profile problem here.

TBICs have a recognisable pattern. One experiences periods of treatment and periods of remission. One lives with symptoms, side effects and long term irreversible consequences. And one has to swallow and digest profound uncertainty and mortal fear. It’s a mental challenge distinct from (not necessarily harder than) other diseases. A condition in its own right.

My ‘eloma has proved, in the last few months, what I already knew. It could easily kill me in the near future. I had a close near miss in Florida. Closer than I might care to admit. Or I could live a long old time until you're all heartily sick of me banging on about it - if that point hasn't already been passed. Current treatment has my disease undetectable, after all. That’s the construct in which people with TBIC have to live, between death and redemption. It's an unsettling prospect, I admit. So no wonder people would much rather hear a happy ending. I still feel people (who don't know me well) fishing for the positive:

"But now you're going to be OK?" as a way to end conversations. And when that isn’t on offer, people surprisingly often insist on labelling disease “terminal”. I'm not sure why that would be reassuring, except to the extent that uncertainty is the scariest thing. But from my side I'll take uncertainty any day if the alternative it terminality (which, to be clear, actually has a much narrower medical meaning, basically you're not expected to live more than a year. Don't bandy about terms you don't understand). The rest - could be around for ages, but will never be in the clear - is something society doesn’t really want to hear about. I think it's a matter of lack of interest and ignorance, more than active silencing, though there's plenty of taboos, still, of what it's acceptable to say. I've been told my writing about it is horrid. But given that I have Dialm as a platform, my complaints about being gagged would be about as convincing as when John Cleese goes on the BBC to complain that the BBC is silencing him.

I began to wonder about the framework of TBIC. Other than platitudes of the type on offer on MacMillan's website ("you might die later!"), I couldn't find much. It's the mental world I'm interested in here primarily, as the physical problems vary between diseases. And anyway the medical industry is there to focus on researching and delivering treatment. But there's been much less investigation into the TBIC world as a lived experience, as far as I'm aware. I found one interesting little study trying to map the psychological terrain of myeloma. It only involved six patients, and it was specific to myeloma, (and it was almost twenty years ago), but I was struck by the conclusions - which seemed to put a shape to my own experience. It identified five mental “constructs". I've both reordered and renamed their categories slightly here (and substituted what follows with my own interpretations!):

• Diagnosis and Investigation
• Symptoms and Treatment Impact
• Recuperation
• Social Safety Networks
• Reflection and New Existence

The first three describe the cycle that you've witnessed me go through. Diagnosis deserves a space all of its own because it involves taking on a new, unanticipated, unwelcome challenge, and dealing with the fear. It's the bit that ever prompted me to write, and it is an utterly haunting experience I wouldn't wish on anyone. Maybe a better social awareness of TBIC as a thing - not a consolation prize for not being cured, not a delayed terminality, but just a thing - could help make diagnosis less shocking. But it will always be pretty shocking. And, since TBIC recurs, on whatever timetable it chooses, one is forced to revisit the diagnosis repeatedly. Each relapse is like a repeat of the diagnosis experience. A slap from mortality. Indeed I'm sure in myself that I hadn't fully digested my diagnosis until after my first relapse. Only once I'd "beaten" it twice, do I think I truly got the measure of the beast. When I say it doesn't scare me any more, it's because I've been redipped; last year was my third. I've done "diagnosis" now. I think I get it. Even in remission there's the endless progression of tests and scans; being incessantly measured for flaws. TBIC diagnosis is a living thing. It could quite plausibly turn into something else (probably, something worse). I'm due a BoMB to rule out the possibility that my 'eloma has developed into MDS. I think this is unlikely, but it's still a conversation I have had to have in the last week. And while writing this, I got a call asking me to come in for a vascular scan of my legs, to check for clots.

The next two - treatment and recuperation - are phases of existence. They're somewhat all encompassing and tend to knock the rest of life entirely out of play. Treatment is easily enough understood; less easily endured. It's the response to the intrusion of progressive disease. It's a routine and an obligation. If I think back to my first illness, it involved being in King's Chemo Day Unit for hours on end, day after day. Or last autumn, it was schlepping to Guy's each day to strip naked and lie under the radiotherapy gun. But it's also all the accompanying crap, like crazy quantities of supportive meds (I took nine different drugs before breakfast this morning). And of course, it is symptoms and side effects. It's hard work. And if - like happened to me in 2018-2019 - it takes ages to get things to go the right direction, then the light can seem to entirely extinguish. Plus it's (no shit *) the most dangerous bit, because you never know if it's going to work out. Quite often, you don't know whether it is working. Sometimes you suspect, with good reason, that it's not working. But you still have to continue popping pills and showing up for whatever indignities have been prescribed. It's a dark place, and it forces you to withdraw from the world. My greatest single regret in the way I handle my illness, is that during illness and treatment I'm not better at keeping close to my family. Especially the boys, for whom time living in the the family home is ultimately transient. Soon enough they'll be gone, and I will always regret the time lost (2012, 2018-2019, 2022), when I wasn't really here.

The last three "constructs" are the payback. They're the reward. If you could tap in to them, without the violence of diagnosis and treatment, you'd want them in your life. Recuperation is a treat reserved for those who've been really ill. And if you're really ill again and again, you might get recuperation and recovery again and again. It's exhilarating. It's where I am right now. It's realising you have got time. You do have energy. You could do something. You could do things you used to take for granted. I just drove the car, for the first time in four months. Sadly, I only drove to the doctor's, but it's still progress. It's waking up, every day thinking

"I feel better than yesterday. And yesterday I remember feeling better than before. I'd forgotten you can feel this good. I must have felt pretty crap not that long ago!"

It's an escalator, an elevator.

It is also confusing. It makes you ask questions about what you want to do. It makes you feel guilty for wasting time. The longer you're well, the harder those emotions intrude, and the more those questions need answering. But for a while, it's possible to just revel in the joy.

The last two are no longer about sequence, but about the changes TBIC causes in your brain and outlook. There is no question that myeloma has unlocked empathy in me that makes me feel the pre-mm Alex was honestly a bit of a dick. I understand stuff about life that I didn't before. I'm loathe to wax too lyrical about this because I suspect it would just make me sound smug. But it's the reason I'd really hesitate to take a pill that would transfer me to a universe where this hadn't happened to me. Now I know better, I don't think I could bear the arrogant ignorance. But the impact on my social world has been so much more than being a bit more nice. I've reached out to find myself a myeloma community for support and in the process learned to be more diverse in my choice of friends. I've learned a lot about my friendships: who's still there when the shit * hits the fan. I've learned to forgive and ignore all sorts of things people say or do when they don't know what to do or say. Sometimes people can be quite spectacularly awful, but I've learned in nearly all instances offence isn't meant. I've learned a lot about what to say, when not to walk away, what help looks like. In a fucked-up * way, I'm even a bit sad that I'm well enough again that the neighbours have decided - quite reasonably and correctly - they no longer need to feed us. Someone coming to your door to bring you dinner is a great way to feel loved. I think, at the crux, it's about being vulnerable. That term is often implicitly pejorative. In my Community Centre Manager role, I wrote safeguarding policies for "vulnerable adults" as though they're a distinct demographic, when - in truth - we're all vulnerable. And now I understand that, I'd rather be consciously vulnerable than imagine I'm invincible.

And finally reflection, new existence. I said a year ago, after a particularly odd week in hospital when I wasn't really ill, but just being observed, and where I basically spent a week alone in a room, twiddling the proverbial thumbs, that it had been a near-religious experience for me. I've learned that each time I go through the mill of myeloma, I come out a different person. Understanding that helps me move on. I knew with certainty, when I got off the ventilator in February, that it was time to quit my job, and I have subsequently done so. There are practical reasons for this, but also the knowledge that I'm just in a new place, and I need a new outlook. Let me explain it through trivia - I think that will be easier on the ear. So, let's evaluate my "existence" in the form of the first few minutes of my day. In previous incarnations - and this is about reincarnation, really, several lives in one - I've prided myself in being pretty practical. Mr Unfussy. My morning routine was a two minute shower, a stiff coffee and some marmite on toast. No frills. For much of my twenties, I skipped the toast bit. Shit. Shower. Shave. Coffee. Done. Well, not any more! I decided, in ICU, that I would take more time to appreciate small things, and I knew that would need to mean, for me, personal care and more observance of food (as pleasure not just fuel). The nurse I watched endlessly applying hand cream will never know what effect she had on me. Now my day begins with a little routine of my pills and my observations, to check I'm OK and remember to breathe, my connection with the reality of my disease. Then I spend a bit more time pratting about with personal care, connecting with myself and the day ahead. I'm moisturising every day like it's a sacrament, to signify the importance of the little things. I bought a trimmer with about ten different heads so I can trim in whatever direction. I'm trying to actually finish aftershave bottles, rather than collect them in a cupboard and/or leave them behind in hotels.

For breakfast today I had multiple sources of protein, two pro-biotics, a shot of ginger, fruit. Oh, and a stiff coffee or two. The point is I'm actually enjoying the fiddliness. I know pro-biotics are pseudo bullshit *, but I'm getting something from the experience. I don't know (I haven't asked) if Marisa can see the difference in me (a little less dismissive in my grumpy-old-man-ness) I hope so.

That's a long anecdotal way of saying the whole of life can be deconstructed and put back together again. None of us has to stay one thing forever, and I certainly do not desire to. If you see me with my long hair right now and wonder why. That's why. It's shorthand for 'I don't give a shit' *. I'm even growing my nails (it took having a ventilator in my face for a month to finally break an awful habit I'd struggled with all my life).

On reflection, there's a lot more to be gained from enjoying now than worrying about tomorrow, or dwelling on yesterday. In my new existence I can shed some of the baggage. I'm done with worrying about jobs. If you ask me, from now on...

"I am a writer"

Not someone trying (particularly) to get published. Just someone enjoying writing as my thing. I'm beginning to piece together what this existence will be. It'll involve art galleries and daytime cinema (neither of those is new). It will involve a bit more investment in maintaining old friendships. There's a load of people I caught up with 18 months ago (before the latest blip) who I'd love to see again. It will involve trips to Sussex (again, not new). It may (I'm hesitating on this), involve volunteering for someone like Blood Cancer UK - especially if that were a platform from which I could build awarness of TBIC. I'd like it to involve project work at the Community Centre, but on my own terms. I'd like to be more involved in the "patients' voice" group at King's. This existence will not involve responsibilities and deadlines because all that happens then is I find myself on a gurney somewhere, attached to a drip, worrying about the Charity Commission submission, or whether anyone's changed the clock on the heating system, when I should be worrying about my health. Most of all, it will involve whatever contortions it takes to be more present at home, to enjoy my family. If that means I have to do nothing all day, merely to preserve enough energy, then I'll stop feeling guilty about making that choice.

I'm lucky, my C has proved T for long enough, despite being I, that I've had the chance to get through the looking glass. Of course it will carry on being difficult. Sometimes it will be an unrelenting pile of shit *. But I know what it is. And I think I understand how to live a life despite it.

That's what I wish someone could have explained to me, years ago. Maybe it could have saved me trying to piece it all together by myself. Somewhere here, there’s the basis to support TBIC as a community in its own right. What I’m saying here - what I’ve been working towards for a decade on Dialm - is to try to describe the TBIC experience. I'm not alone. Much more publicly than me, Deborah James has recently being saying the same, in a different way. I’m in awe of her ability to express it all so eloquently through dance. (Deborah James: Bowelbabe in Her Own words - well worth watching. On iplayer, so UK only, or use a VPN.) What a treat to have perspectives like hers, even if too briefly.

One thing that needs to be addressed is the absence of terminology. I’m a what? Patient? Survivor? Victim? Fuck off *! I’m disabled, to an extent, but I’d feel a fraud claiming to be a “disabled person” - disability isn’t that big a component of my experience/interaction with the world. I really object to being labelled brave, heroic or inspirational, because I'm just making the most of it, trying to make sense of it, like anyone else would do. I’m a “person with blood cancer”, except, right now my blood cancer is undetectable and even if it never returns I’ll continue to live with physical consequences and with the mental scars. What am I? Today I'm Mr TBIC. But then, I'm also full of dexamethasone. When I come down/ sober up, maybe I'll be something entirely different.

* I hear the siren voice of the participant who raised her hand, during a course I was teaching in America, long ago, to ask me to "use less profanity". Sorry.

sCR

They call me hell. They call me Stacey. They call me her. They call me Jane
That’s Not My Name - Ting Tings

Just a warning. They’ve put me back on the steroids. I’ve written a load, which I think more digestible if I split it into 3 posts. I get dosed, you get dosed! As always, you don’t have to read it all. Here’s Part One

Treatment response classification for myeloma is somewhat arcane. Because it’s quite difficult to know where you are, and because no matter how good things look, the assumption is that it will, one day, relapse. The basic classification often used is:

• PD - progressive disease. Things are actually getting worse
• SD - stable disease. It’s no longer getting worse, but not improving much either
• PR - partial response. Typically a 50%+ drop in paraproteins/ light chains
• VGPR - very good partial response. Typically a 90%+ drop in paraproteins/ light chains
• CR - complete response

Until now I’ve never achieved more than VGPR, and mostly only PR. That I’m still here after eleven years shows that these categorisations aren’t reliably prognostic. I was told, long ago, that the single most significant threshold, prognostically, is whether one achieves VGPR rather than mere PR, but it's not obvious you'd work that out from the category labels. And naturally people’s focus is at the sharp end. Everyone wants to be told they’ve responded as well as possible to treatment.

I try (often unsuccessfully) not to be cynical about other people’s labels for their mm. I roll my eyes when people tell me their personal myeloma is “high risk” - as though any myeloma is not. Seriously, if we're going to get competitive in how dangerous our cancers are, something else has gone wrong. Similarly I try not to rise to the slightly competitive subdivisions people make about the quality of their CR compared to other CRs. But then, I’ve never been in CR myself before. There’s a hierarchy within CR that goes something like this:

• CR - 100% reduction in paraprotein
• sCR - s for stringent. No myeloma detectable by immunohistochemistry or immunofluorescence
• MRD-negative - no myeloma residual disease detectable in flow cytometry of bone marrow biopsy

That isn’t even an exhaustive list. People talk about “molecular CR”, for example. I’m not sure what the testing threshold for that would actually be. The science isn’t settled on all of this. There isn’t consensus on what terms mean, how the different statuses are measured, or what distinctions really matter. Google this topic and you’ll end off reading more research papers than consumer facing websites. There’s even evidence that myeloma can be detectable on one less sensitive test, but simultaneously undetectable on a more sensitive one… which kind of undermines the entire premise of a hierarchy of response determined through increasingly sensitive tests.

But that’s the general gist: at what, increasingly precise testing level is your myeloma detectable, or not. As of today, my clinical trial team tell me that my status is now classified as sCR. I’m due a BoMB in a few weeks, to screen and make sure my repeated bouts of neutropenia don’t have a serious (more serious than myeloma, I mean) cause. I guess it will also enable them to tell me my MRD status.

Prognostically, better means better. So while I remain very sceptical of all these categories and of the importance patients attach to achieving specific response labels, I’m obviously delighted to be told my response is deep. That's what counts, whatever we choose to call it, however we measure it. Clearly the less easy it is to find evidence of myeloma in my blood and bone marrow, the less of it there must be. And less disease can do less damage. (That's my attempt to cut some clarity from all this complexity and wanton competitiveness.)

I’ve call elranatamab the wonder drug for good reason. I has hit my myeloma harder than everything that has gone before. As of this week I’ve restarted treatment, with a plan for at least another year of monthly jabs. I’m pretty optimistic the response will stay good - stringent, even. It’s just a matter of not getting dangerously ill with whatever respiratory infections I might encounter. To that extent the damage is done, regardless of the absence of active myeloma. It doesn't go away, even when it goes away.

We got out of London for Easter in Sussex. Finally getting to enjoy the renovations there. We practically had the house rebuilt, in the end, after I told the builders to strip back rotten sections of cladding as well as adding in the new. By the time they were done, every piece of external cladding, all the internal walls and half the roof had come out and off! It's a bit like my grandfather's spade, having had two new heads and three new handles. But that's inevitable for a venerable wooden building. It's nice to be able to just enjoy it, without seeing endless jobs still to do. My relapse somewhat delayed the finishing in 2022. The house still needs painting (though it looks quite fine without, no?) And, with the assistance of my parents and Ben, we built a couple of excellent sheds. Just don't tell my physiotherapist that's what I've been up to.

PICS

Out here in the perimeter there are no stars
Stoned Immaculate - Jim Morrison / The Doors

Sorry, this is a rather long post. And excuse me if it is alarming or disturbing to read! Better out than in

Back in ICU, shortly after I came to, when I knew my head had cleared and I was no longer nuts; I made two sweeping claims about my experience and prognosis. Firstly, I was pretty confident that my mental health would be robust enough to avoid developing post traumatic stress (PTSD) - even though it affects somewhere between a fifth and a third of ICU survivors, and my ICU experience was much longer and probably more traumatic than ‘average’ (whatever that might mean in this context). And secondly, I dismissed the significance of the whole episode, pointing out that while it might seem a big deal to everyone else, it was - for me - just another in the long line of myeloma melodramas. Over time, I’m revising both those opinions.

Firstly, although I’m a long way from PTSD, I have definitely experienced an amount of anxiety, which is a component of PTSD. It’s new to me. My mental health is not something I worry about much. I’ve struggled, at times, with stress, but I’m not used to feeling anxious. But right now, each time I push physical boundaries - walking a significant distance, doing an amount of exercise, my first trip back to hospital, my first trips out to the shops - I can feel physical anxiety, my pulse accelerating and my breathing becoming faster and shallower. The breathing in particular is an unsurprising legacy from when I was in respiratory distress. I’m having to learn to consciously manage my breathing - longer, slower, deeper - and with it the accompanying mildly panicky hyper-alert feeling. I’m finding an increased need for both mindfulness and meditation.

Secondly, it is true in one sense that this is just a.n.other myeloma episode. Myeloma melodramas are unrelenting and unpredictable, and they involve a repeating cycle of periods of illness, pain and treatment, followed by rehabilitation and recovery. The last few months fits that pattern. But in another sense, this is very different indeed. I’ve found myself searching out other testimonials of ICU survivors, in order to make more sense of my own. ICU-survival is not just a new neighbourhood in myelomaville. It is a different place, populated by different people with different issues. I’ve joined another of the “clubs you wish you hadn’t joined”, and what I’m dealing with now is Post Intensive Care Syndrome (PICS): a combination of physical, cognitive and psychological problems experienced as a legacy of having spent time in ICU.

Physically, the hole I’m in is deeper than the ones I’ve found myself in previously, so recuperation has been more challenging. Compared to a stem cell transplant, this is harder. That said, I’m making remarkable progress and feeing pretty chipper. My legs are still weak, and my feet swell because my leg muscles aren’t sufficiently pumping the blood back up out of them. I did - eventually, after 5 weeks - get a visit from a physio, and I have a good routine to build up my muscles. I’m pretty confident now taking trips out of the house, and my fatigue seems to be back to normal-for-me, which is very manageable. It’s been physically challenging, coming back from the day when I could do no more than waggle a finger, but it’s a job mostly done. My pressure sores improve too - only one still needs nursing care, and although it has a while to go, it is healing. The district nurses no longer call, and my carer visits cease as of tomorrow. I’m trying to arrange to have the hospital bed uplifted. I’m optimistic that my consultant will assess me fit to restart wonder drug treatment, at my next appointment in two weeks time.

Cognitively, I’m aware I’m a little slow. I’m also aware of a few very specific deficits. I’m suddenly very poor at locating sounds. In hospital I struggled to tell whether it was my machines which were beeping, or those of a neighbouring patient. And I still find it difficult to work out what direction noise is coming from. I also seem to have a lot of trouble sequencing the past - I struggle to remember if things happened yesterday, or last week. I have to manually count days to work out how long it was since I was discharged, for example. It’s weird and annoying, and i suspect it would make me somewhat unreliable, if my schedule were any more complicated than it is, since I have not much idea what’s happening when, unless I look in the diary. I’m hoping these little issues will resolve over time. From what I’ve read, there’s a good chance they will.

And psychologically? The more I’ve reflected on the delirium I experienced, the more profound and unsettling I’ve found it. Listening to others tell their stories, has helped me realise that I had a lot more delirious thoughts and experiences, over a longer period of time. They’re still surfacing in my memory. And I’ve concluded it’s wrong to describe them as “dreams” because they don’t behave like dreams. Dream fade quite rapidly, but these do not. These are memories, it’s just they’re memories of things that didn’t happen. Or at least, of things that didn’t happen as I remember them. Let’s call them madmories. I gave the example, in a previous post, of the “windy legs” experiences I had, triggered by the muscle massaging contraptions on my legs. I’ve realised subsequently that I have madmories involving all sorts of things I must have experienced while sedated, including all sorts of ICU routines: being “repositioned”, being washed, having my sheets changed, and so on. Other more ominous stimuli include the device with which they used to force me to cough up phlegm. And then there’s the restraints that were used on my legs, and also - I now suspect - on my arms. Sometimes sedated people try to pull out the ventilator - which would obviously be a horrific thing to do. And so agitated patients have to be restrained. Did this ever happen to me? My madmories would suggest it did.

I have a number of madmories involving flights, with special sections of the plane for people with respiratory weakness and involving convoluted and frightening experiences with border control where I was required to undergo a range of extreme versions of covid swab-type tests. (Maybe that's my madmory of having a feeding tube inserted?) Some of the flight madmories are really quite exotic, including trips across West Africa reviewing filming locations for TV show commissions, putting down in a sequence of airports in different countries. Was this my brain’s attempt to make sense of the air ambulance back to London?

Many of my madmories involve specific locations, showing I clearly had some understanding of where I was - my journey and the various hospitals and wards in which I stayed. When I was initially sedated I was expecting to be transferred to Miami. Despite the sedation, I must have been aware of the change of destination, as I have a madmory explicitly set in Fort Lauderdale, about trying to escape from hospital, impeded by leg restraints and overzealous nurses. Another madmory is located in an evangelical temple, a huge granite faux-classical monstrosity on the side of a Florida boulevard… your guess is as good as mine as to what inspired that one.

There are madmories of strange other patients, of disembodied characters in the walls and furniture, of bad-actor (in both senses) nurses… all of which I’m pretty confident have some basis in real people. And I’ve mentioned previously the hospital-as-tv-set / medics-as-actors and physiotherapy-in-China madmory universes. I know I answered “China” at one point when they did the “what’s your name? where are we?” routine of questions. At the time it was intensely real. My Chinese madmories mostly share specific details with one ICU ward, down to details of paint colours on the walls, and the locations of sharps bins. And yet they are embellished with jungle walks in the rain (at a time when I couldn’t walk), to reach the remote primary school that, for some reason, was the place we had to go to, for my physiotherapy.

Many of these delirious strands interweave. The ‘TV’ stuff is prominent in the flying madmories and later on in my experience at Kings. The same freaky other patients recur, travelling with me like some psychotic, schizophrenic voices. The sequence of movements by which a pair of nurses change the bedsheets under an immobile patient have featured for me as scenes in hospital-drama tv (both serious and spoof), where I’m the actor playing the patient. They’ve also featured as a form of repeated restraint, where every time I’m about to get out of bed, a team or nurses arrive, quickly put me through the changes, and finish by locking down my legs.

Anything that disturbed my awareness was, I think, a likely source of madmories. I was constantly plugged into IV drips, ECG electrodes, feeding tubes and the ventilator. I know I was particularly irritated by the thing on my finger measuring blood oxygen. In my madmories it sometimes attached my finger to other things in the room and I found myself struggling to disconnect. At one stage it was attached to the back of Marisa's head - the cord somehow becoming part of her hair. Sometimes there were wires and strings all over the place attaching things together all round the room, and it all depended on my finger. I'm sure, in my agitation, I spent plenty of time trying to take the thing off, and having the attendant nurse push it back on my finger. All the time, my brain was trying, it a lunatic way, to make sense of it.

I’ll spare you the details of the madmories I have associated with having a catheter…suffice it to say such madmories exist. And plenty more, to do with all sorts of intrusions and insults endured as a patient in ICU.

It’s unsettling and it leaves me wondering - worrying - quite what an ordeal I went through. I’m no longer confident that I slept through the worst of it. I think I experienced most of it - the endless awfulness, the imprisoning immobility, the weird repetitive routines of ICU - in a state of total confusion, momentarily making “sense” of what was happening to me before losing it again in the fog. I said in a recent post that “other people’s dreams are never interesting”, and yet here I am giving you chapter and verse about mine. Except they’re not dreams. And - as always with Dialm - they’re here with a purpose: partly therapeutic for me, partly to help my friends understand me, and partly on the off chance that someone else who has been through ICU might find this post and feel a little comforted about their own delusions. I’ve certainly taken some comfort, of late, in the stories of others I’ve found online

Potentially useful resources:
ICU Steps Charity supporting survivors and their families
ICU Delirium Some patient testimonials
A Waking Nightmare Short video of patients and medics experiences

Despite all this... I'm well. It would take more than a little psychosis to stop me! Off to Sussex for the Easter break, and can't wait.