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.

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* 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.

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* 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…