Overdue?

I’m a lonely boy. Oh O-o-oh. I got a love that keeps me waiting
Lonely Boy - Black Keys

Maybe this post is long overdue. Maybe it’s completely superfluous.

I haven’t written for ages, not because the last 6 months haven’t been uneventful (sorry - a lot of negatives there), but because from a myeloma perspective (the extent of our remit here on dialm) the events haven’t been sufficiently remarkable as to write about.

The rest of my life, btw, is great, thanks for asking, but I’m not going to write about it here.

The myeloma events have been varied, typically: chemo side effects; myeloma symptoms (plasmacytomas, bone lesions,, low blood counts); fatigue; infections and endless mysterious pains. I find these days I’m usually engaged in a few of these events at any one time.

Still, none of them individually worth writing up here. You’ve read it before. I wrote it before.

I plod through the chemo hoping they keep inventing them as fast as I use them. We’ll see. We did indeed end off changing chemo after my last post. And we’re about to do so again.

This post, I’m sure, reads very bleak. But my life is a long way from that. I’m feeling quite well at the moment and just back from a string of holidays. We’ve kind of given ourselves the permission to travel whenever we can, and right now we can. Many of you won’t be surprised to know I have a list of outlandish suggestions. I’m blessed with a wonderful family and lots of friends, living in one of (imo) the nicest corners of London with sufficient funds to live a good life without needing to work. But… we’re drifting off topic so that means it’s time to stop writing.

Here’s a pic I took last night of Faithless performing in Brixton. By contrast, I will spend tonight in hospital. Quite a good demonstration of the contrasting nature of different days of my  life!

ChatGPT on pain

This is a post about myeloma pain  - intended for the interest of people living with myeloma, not necessarily of interest to everyone else. For everyone else - I’m way overdue an update. Much has happened, though viewed another way, nothing has changed!

I’ve had myeloma over 12 years now and experienced pain throughout, but it has been more complex in the last few years. Because my experiences are so varied and unpredictable, I suffer an inner monologue questioning the validity of my pain. I continue to ask myself if I’m making it up. I’ve asked my doctor and my nurse whether my weird pain is “normal”, but their responses never really satisfy me.

Today, I asked ChatGPT. Its response was like a smack in the face. The complexity of my pain, in words. I recognised every point. It’s amazing what AI can work out, that my medics can’t, and that I’ve never found a good answer to through Google  I’m not offering it up as medical advice, because it didn’t come from a medic, and anyway it’s not advice. It’s a better explanation than any of my doctors - including the pain specialists - have ever offered of how the mechanics of myeloma pain manifest experientially.

If you too suffer the weirdnesses and fluctuations of myeloma pain, you might find it interesting.

—-

Me:

What do you know specifically about the pain experiences of people with myeloma? I don’t just mean that there’s bone pain blah blah. I’m wondering if you know anything about how myeloma pain comes and goes, and how myeloma patients are susceptible to injuries which cause long term pain with no obvious physical cause

ChatGPT:

Myeloma-related pain is indeed complex and can fluctuate in intensity and type due to several unique factors associated with the disease. Here are some aspects of the pain experience and the way it may impact quality of life, along with why myeloma patients are susceptible to prolonged pain and injury:

1. Bone Pain Patterns and Fluctuations

 • Intermittent Pain: Myeloma bone pain often has a “waxing and waning” nature. It may flare up during periods of physical activity, at certain times of day, or without any clear trigger. This pattern can be due to the way myeloma cells create lesions in the bones, which weakens their structure and makes them prone to microfractures and small-scale injuries that cause pain even without visible damage on imaging.

 • Nighttime Pain: Pain is often reported as worse at night, partly because bone turnover and cell regeneration slow down during rest. Additionally, inflammation can increase overnight, which may exacerbate pain and stiffness in affected bones.

 • Specific Trigger Points: Myeloma patients frequently experience pain at specific locations like the spine, ribs, pelvis, and long bones (e.g., femur). These areas may become so fragile that even mild stress can cause small fractures or micro-injuries, which can lead to persistent pain.

2. Increased Susceptibility to Injury and Long-Term Pain Without Clear Cause

 • Osteolytic Lesions: Myeloma cells produce substances that increase osteoclast activity, leading to “punched-out” lesions that weaken bones structurally. These areas are vulnerable to pathological fractures or “silent” micro-injuries. Even if there is no visible fracture, the structural weakening can cause microdamage that results in persistent discomfort and pain.

 • Bone Density Loss and Compression Fractures: Due to weakened bone structure, many myeloma patients experience vertebral compression fractures, which can cause chronic, often debilitating back pain. The vertebrae may collapse in on themselves, creating pain that persists even after the initial fracture has “healed,” due to abnormal pressure on surrounding nerves and muscles.

 • Soft Tissue Pain: Muscle spasms and inflammation around weakened bones or lesions can lead to soft tissue pain that persists even in the absence of a visible physical injury. This is often compounded by abnormal gait or posture as patients unconsciously try to protect painful areas, creating additional strain and pain in surrounding muscles and tissues.

3. Neuropathic Pain and Nerve Compression

 • Nerve Compression from Bone Damage: When myeloma lesions cause fractures or compress the spine, nerves can be impinged, causing radicular or shooting pain. This type of neuropathic pain doesn’t always correlate directly with visible damage, as some nerve compression effects can persist after initial fractures due to ongoing nerve sensitivity or damage.

 • Chronic Pain from Nerve Damage: Myeloma treatment itself (such as chemotherapy or corticosteroids) can also contribute to nerve damage, leading to persistent neuropathic pain. This can manifest as burning, tingling, or shooting pains that come and go unpredictably, even in the absence of continued myeloma activity.

4. Injury Amplification Due to Myeloma’s Systemic Effects

 • Inflammatory Response: Myeloma cells release cytokines and other inflammatory molecules that increase inflammation within bones and joints. This heightened inflammation can lead to a lower threshold for pain, meaning minor injuries feel more severe and last longer than they would in someone without myeloma.

 • Hormonal and Metabolic Effects: Myeloma also disrupts calcium metabolism, which can affect muscle contraction and nerve function. This can contribute to muscle cramps or spasms, which might feel like injury-related pain but aren’t linked to a specific injury. Additionally, these systemic imbalances can make muscles and joints feel more fatigued and painful, increasing the sense of chronic pain even without acute injuries.

5. Psychological and Sensory Processing of Pain

 • Chronic Pain Perception: Living with ongoing pain and potential bone fragility often heightens pain sensitivity. This is partly due to central sensitization, where the nervous system becomes hypersensitive to pain stimuli. As a result, even minor aches or strains can feel unusually intense and persist longer than they would in someone without myeloma.

 • Psychological Impact: The mental strain of chronic pain, worry about bone fractures, and the unpredictability of pain flare-ups can add an emotional layer to the pain experience, often intensifying physical sensations. Pain in myeloma patients can sometimes feel more severe or long-lasting due to anxiety or fear of exacerbating underlying bone issues.

6. Management and Adaptation Challenges

 • Difficulty with Pain Control: Due to the variability in pain sources (bone lesions, nerve damage, inflammation, and muscle strain), myeloma pain often requires a mix of treatment approaches, including medications, physical therapy, and sometimes orthopedic interventions. Adjusting treatments for fluctuating pain levels can be challenging, and even with good management, patients may still experience spontaneous pain flare-ups.

 • Adaptation in Daily Life: Because myeloma pain can be triggered by relatively minor activities or small injuries, patients may limit their movement or take precautions, which can paradoxically lead to muscle atrophy and decreased joint flexibility. This cycle can make it harder to adapt and increases susceptibility to further pain from routine movements or minor injuries.

In essence, myeloma pain is shaped by a complex interplay of physical damage, systemic effects, and neurological sensitization. These factors combine to make patients vulnerable to pain experiences that feel out of proportion to visible injuries or that persist long after typical healing. Managing this kind of pain usually requires a highly individualized approach, integrating physical and psychological support alongside conventional pain management strategies.

Uptodatedly

Ven, nino que estas ahí. Vuelve a casa

Madres - Sofia Kortesis

Over dinner last week I said to a friend that we could skip the discussion of my current and recent myeloma:

“It’s ok Alex - you can tell me anything”

“But I don’t really want to talk about it, myself”

… Bearing that in mind … It’s been three months since last dialm, so here’s the skinny …

The chemo is working both biochemically and side-effects-ly. Five cycles in, my light chains are normal and I feel far better tolerating pomalidomide and isatuximab than I did on elranatamab. So that’s all good. Not enough to reassure my consultant, who is concerned about evidence in PET scans of my pelvis. So we’re on watch and wait. He was hinting at changing my chemo, which you won’t be surprised to know I was not much in favour of while it appears to be working, and not too rough. Our compromise was I get another six weeks as we are, and then another PET to help us make the right decision.

Myeloma has always been cyclical - bad periods and good ones. The last two years has much accelerated the frequency of those transitions. Going from good to bad is usually progressive - unless I really hurt myself, in which case it can be very quick. The transition from bad to good comes, at its best, as a sudden release. In my imagining it’s the moment the cumulative load of pain and fatigue drops low enough to release some quantum of mental capacity. The capacity to give a shit. Despite having had better periods among the carnage of the last two years, I haven’t had one of those release moments… I have felt periodically better, but haven’t really felt good. This last week feels very much like one of those moments.

I’ve long observed the impact of my physical health on my mental health, but mostly with an aspiration to decouple them. To not have myeloma of the mind. But, I’m reevaluating that. I don’t think decoupling is practically achievable, and wishing for it is of itself stressful. Maybe better I just embrace the truth: when I’m ill, it’s not much fun, and I’m not usually at my best. Doesn’t sound unreasonable, written down like that. I’m not saying I’ll reduce my bad-times ambition to mere survival, just give myself more license to muddle through as best I can. The last few months have been hard.

“Bare long, I can’t lie”, as my teenagers would put it.

After years of experience I embrace the moment I regain the capacity for living: to sit around the kitchen table chatting with the kids; to potter around the house vaguely contributing to its running; to open my “To Do” list and actually do something; to go out. In theory, even totally immobile, I could prop my laptop on the bed and do the Community Centre accounts, or write poems. In practice… at those times, I just don’t effing feel like it. It’s nice, therefore, to be out of bed again, and to feel like it, again. Not limited by fatigue, or (excessively) encumbered with pain. I’ve many times borrowed the language of mental illness to describe my myeloma experience as making me feel, in a way, bipolar. (Excuse me if that word means more to you than to me and my use of it seems crass. I hate it when people use “cancer” as a metaphor.) When I’m physically ill, unsurprisingly, my mood is low. When I’m feeling better, my mood swings up, abruptly and I feel imbued with power and energy and an urge to get stuff done. Relapse and remission, those are my poles.

This last week I went to a party on Wednesday, went to two exhibitions on Thursday, had people for dinner on Friday, went to someone else’s for dinner on Saturday, and shouted on the touchline of two football games on Sunday (and ate through one piece of chocolate cake, one ice-cream cone, one pickle, one slice of Swiss cheese, one slice of salami, one lollipop, one piece of cherry pie, one sausage, one cupcake and one slice of watermelon). That’s a kind of “normal” that is so often, and for so long, out of reach for me.

It’s irritating therefore that I’ve still been restricted to using crutches or wheelchair because of an injury in my groin. Irritating to feel the “good” period being impeded. I’m hoping it is a mechanical injury, and finally on the mend. If I can just get my consultant to agree that it’s not a cue to change treatment... But it is a lot better than it was. So hopefully this particular storyline is drawing to an end.

I used to plan for the good periods, post SCT: change my job and build a new routine. Now the transitions are so frequent and sudden, I haven’t time for the planning bit. It’s just a matter of chucking myself into things as I feel like it and not worrying about tomorrow. Look out, baby, here I come.

That’s where I am today. By the time we speak I could easily be in a different place. Anything could happen. Something or other most likely will.

---

POSTSCRIPT 21st May

I should really know better than to google my illness, and I'm pretty good at keeping away from it these days. But every now and then.

Anyway, found this - https://pubmed.ncbi.nlm.nih.gov/9172858/  -  Fucking hell

Pain

Walk away and taste the pain. Come again some other day
Taste The Pain - Red Hot Chili Peppers

No sooner had I predicted in my last blog post that I would have four or five months ahead of me before needing to begin new treatment, than things changed

With my blood counts deteriorating, last month we made the decision to change my treatment plan and start on a new set of drugs. I was due in clinic to kick off that process, but before we could even get that far I was overwhelmed with pain. I’m pretty good at dealing with pain (myeloma is a painful disease so I get plenty of practice), but it got really very bad this time. It’s hard to calibrate pain in order to describe it, but this was more than I could handle, and was no longer responding to painkillers, regardless of how many I took. I ended off calling an ambulance on a Monday morning, and I’ve spent the past two weeks in a hospital bed again. It’s all a bit grim. My myeloma has clearly relapsed very quickly. Faster than our ability to monitor with blood tests. A PET scan revealed what I had already worked out: that there were plasmacytomas in my pelvis, my hip and by my spine (fortunately, the neurologist told me, not actually on my spinal cord). These are myeloma tumours that have escaped from the bone marrow. I had some two years ago, and we should just assume they’re a characteristic of my disease now. Myeloma (d)evolves and gets worse, over time. The longer you live with it, the more opportunity it has to develop more problematic traits. Unwelcome as that may be. In my case the changes include plasmacytomas, and that it is becoming increasingly “non-secretory”, producing fewer light chains, thereby inhibiting our ability to monitor it with blood tests *.

I’ve had a five day course of radiotherapy to specifically deal with the tumour affecting my spine and my nerves, and the one inside my hip socket. The radiotherapy was at Guy’s - there’s no radiotherapy machines at King’s - and since I was not in a position to get there independently, I had to be transported back and forth on a stretcher between the hospitals each day. That was an awful process in and of itself. The actual treatment was ok. It takes only minutes and nothing appears to happen. Not very dignified, mind, lying there stark naked on the machine with the technician taping my genitals to my leg to minimise the risk of incidental burns. Let’s hope it works, because in the short term that’s what will determine my mobility and function. And I’ve started the new chemo regime - isatuximab and pomalidomide. Potent drugs, each an escalation from similar I’ve had in previous relapses. We can only wait to see if it works. Even if it does, these are likely to be short term solutions. I got almost two years out of elranatamab. It think it’s optimistic to imagine I’ll get that long from these, but who knows. Ongoing treatment will involve a day (likely overnight) in hospital every second week, and other pills that I must take daily for as long as they work. There’s a serious risk it exacerbates my immune suppression, and/or makes me dangerously anaemic or thrombocytopenic. Last time I took these classes of drugs - in 2019 - I ended off having a lot of blood transfusions (and they tell me this one is ten times as potent as the last one was!).

Being in hospital is always bad enough. It’s worse now than ever, with the NHS made derelict by callous tory bastards. It’s frightening and humiliating. You end off having to accept a lot you really shouldn’t have to, because the alternative would be not getting the treatment you need at all. I was discharged yesterday, and I’m taking it easy at home. I’m hoping I can at least be present with my family, with pain sufficiently managed that I have the mental bandwidth to enjoy their normal life around me. It’s not a big aspiration, but it’s as far as I dare dream. The last few weeks, looking back now, were too much. But in the moment it’s sometimes hard to know when to shout; how long to ignore/ put up with/ live with/ escalating symptoms.

All pretty shitty. I’m not at all happy about it. There’s no sugar coating, no upside, no way to brush it all off. From one treatment immediately on to the next, attempting to keep a step or two ahead of the disease. That’s how it will be. It would be nice to be able to make those transitions without experiencing it each time in the form of emergency and crisis. But that’s probably not a realistic expectation. It certainly isn’t how it panned out this time.

—-

* If you’ve followed this blog long enough you’ll have been used to me quoting light chain numbers as my default disease marker. And you might have noticed I’ve stopped doing so. Paraproteins and light chains are only ever a convenient proxy for myeloma - the easiest thing to monitor. They’re a bi-product of disease not the actual disease. How much of them you produce is individual to your own disease and so there’s no absolute meaning for any particular level. My rule of thumb has always been that, for me, KFLC = 500+ is the threshold that indicates imminent problems. But this time round we’d only got as far as KFLC = 120. The warning lights were only flashing. We thought we’d got more time.

My disease has always been “low-secreting”, in the spectrum of myelomas. It’s not unusual for people to have light chain scores in the 10,000s. And in 90% of cases, myeloma produces whole antibodies (paraproteins - PPs) as well, which mine has never done. It is perfectly possible to have “non-secretory” myeloma that doesn’t even produce any light chains, and mine is clearly heading in that direction. This becomes a problem for disease monitoring. I suspect I will in future need regular PET scans as part of my surveillance regime. Maybe if we’d scanned before Christmas, I could have been spared the worst of what has just happened. We might have seen the plasmacytomas before they got so bad. Maybe.

Yawn

My job is very boring I’m an office clerk
Echo Beach - Martha And The Muffins

Can’t escape the feeling this is frankly boring. Routine. 9-5. Yawn. I still have to talk about it. Up to you whether you still need to hear it! (Please don’t tell me you don’t find it boring… that would be weird)

I haven’t felt like writing this for months. (I’ve distracted myself with poetry. A proper website will follow during 2024, but here’s a temporary blog on which I’ve posted some poems - PolemicAlex.blogspot.com). I’m bored of the same old updates. As, I’m sure, are you. I decided I couldn’t live forever in the shadow of “recovering from” last winter. So I made a somewhat conscious decision to be “recovered”. Cut my hair. Tried to raise my outlook. I’m in a better place for seeing it that way.

The myeloma story beneath doesn’t change quickly. My post-ICU issues are made better by physio (which I have resorted to paying for since September, having eventually accepted that the NHS would just never come good), and by acupuncture, which continues with my lovely friend Lola. Took a couple of sessions before I could even bear to let her stick needles in my numb toes, but perseverance has made a real difference - notably the regaining of normal sensation in the balls of my feet, which makes me steadier and less prone to stumbles.

I’m bored of retelling my endless set of gripes. Rather than repetitively post up about individual issues * maybe the more useful reflection is one observed on a higher plane, about not just today’s aches. For I live with these kinds of issues ongoing, all of the last 12 years. I easily pick up knocks and injuries to my spine, pelvis, ribs, shoulders, which then take a couple of months to recover. Doing stuff that could be regarded as very normal, in particular doing anything as physical as picking something up, reaching for something, moving too fast… They’re a large component of what I’ve referred to before as mye’luggage - the endlessly accreting pile of stuff my’eloma requires me to travel around with. Marisa could cite many occasions where I have reported feeling a distinct signal (usually some kind of “pop”) which I have learnt indicates a serious risk of pain that will likely intensify for a month or so before calming down again (assuming it doesn’t turn out worse than that). Viewed at that altitude, I have nothing new to report. Still carrying mye’luggage but not significantly more than usual.

My chemo continues - I think I’ve had a longer run of appointments going to plan than at any previous point in this treatment **. The side effects are not too bad. But they’re still there and some months hit me harder than others. Our plan is to continue for now, but even the wonder drug no longer prevents my cancer markers deteriorating ***. I’m about half way now to formal relapse. So, 4 or 5 months from here maybe - though it could come on faster. If it’s much slower, I’ll be pleasantly surprised. That moment will trigger more tests, uncertainty, having to begin a new treatment, pain… it’s never much to look forward to. But again, it’s not news. My remissions are always contingent and transitory. 

A year ago I was comatose in Florida, quite an unwelcome anniversary for all of us in this house. “This time last year” sounds like the past, but it is still very much a present event in many ways. I’m not as physically independent as I was. And while I don’t feel haunted by the experience it doesn’t completely disappear and it adds to the list of things that could easily happen again ****.

And - as I was quick to point out at the time - “last Christmas” was itself already merely a continuation of a decade of shit caused by myeloma.

Things right now are still, despite all that, fairly good. I am physically better than I have been, and just hoping I can continue to improve for a while yet, and not get struck down too quickly by relapse. And mentally, I’m doing my best to stay robust. The last month or so has been better than the month before. We had a good Christmas which I enjoyed spending with my family. I’m enjoying watching the kids grow, and trying to be grateful for the experiences we have had that I never believed we would, and not worry about the future experiences we might miss out on. That list - the things we won’t do - gets, by definition, smaller every single day. 

I’m more and more conscious of what living with my’eloma means for Marisa. Again, I’m talking about that in the context of 12 years not just 12 months. Her journey is as hard as mine. It’s also her own. Not a by-product of mine. The combination of facing the future in all its uncertainty; living with the disruption and practical demands of trying to run a house while caring for me and still having a life of her own; and having to watch myeloma happening to me… it’s a lot. (And it’s equally so for our boys, too.) I’m learning to have compassion for that completely separate from my own experience. Not to let my own bad times drown her reality out. And not to demand her mood matches mine in my good times. 

So… that’s where we’re at. I’ll update you when it substantively changes. Not the next test result, or the next time I hurt myself.

It’s a lot to ask that people might even still be reading this stuff, after so many years. I’m very conscious that lots of my friends have challenging lives too. The average age of my social world must be tipping 50 by now: exactly the age for career dilemmas, marriage difficulties, challenges from your kids, worries about your parents, and your own health problems. I know some of my friends are dealing with situations I don’t envy at all. So we’re incredibly appreciative of those who have found time to look out for us and check in on us. We know who are truest friends are. We’re very grateful even if we’re not able to offer any more in return than just hoping that 2024 is easier on us than 2023 was!

I’ll sign off by wishing you all a Happy New Year. I mean that entirely sincerely. Please don’t read any cynicism or sarcasm into it, because there’s honestly none. To me New Year always represents opportunity.

—-

* For example I have a load of mobility problems at the moment that may prove to be a musculoskeletal - in which case they’ll recover in time; or may prove to be symptoms of a recurring plasmacytoma - awaiting another load of PET scans to try to work out which. 

** Last month I ended off having my chemo administered in a corridor with my health team forming a human curtain. I won’t say more because it would rapidly descend into my views on the state of King’s College Hospital; the NHS in general; and those bastards in government. Dangerous; ruined; and evil, respectively. The perverse thing about health politics is that the real problem of socialised healthcare isn’t inefficiency or waste, it’s (tory) politicians not funding or staffing it properly. Maybe the funding decision could be taken away from them? Made objective? A peer-benchmarked share of GDP? Hopefully they won’t actually carry out their threat to cut migration numbers by limiting worker’s dependents visas, when the system hasn’t yet finished recruiting new nurses and doctors from the Philippines, India and Nigeria to fill all the vacancies left by Europeans departing post brexit. I reckon for the rest - delivery of healthcare in the context of funding available and adequate staff - our system really is second to none.

*** We’re using a different measure from the light chain scores some of you might recognise or understand, so I’m not bothering to post numbers here

**** If possible I need surgery to repair a hernia. This is more an aging thing than a myeloma thing except that myeloma contributes to physical aging (my chronological age is 50. My physical age must be 70+ I reckon). But myeloma makes it harder to find a time when surgery would be safe or practicable. And it will involve general anaesthetic. The last 2 times I had a general, I woke up in ICU with a ventilator in. Knowledge of that will make me less at ease being put under again. I’ve had to think hard about whether I could go through all that again, if it were necessary. “Last Christmas” continues very much in the present tense.

Philip Guston at Tate Modern. Great exhibition. Interesting artist. Marisa and I saw ourselves in this self portrait of Guston and his wife, Musa McKim. I’d be holding a pen instead of a paintbrush…

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.

You can also simply subscribe by emailing dialmformyeloma+subscribe@googlegroups.com

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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”