Wednesday 12 July 2023


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.

Monday 3 July 2023


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.