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…