Never free, never me. So I dub thee unforgiven. You labeled me, I'll label you. So I dub thee unforgiven
The Unforgiven - Metallica
I promised you a dose. This is Part Two. Let me know if you’re feeling at all nauseous. We can give you something for that, but it might make you constipated, but we can give you something for that, but it might cause a rash
I’ve been reflecting further on my position in myelomaville. It’s so long now since I started treatment that I’m very distant from the initial fear that came with my deadly diagnosis. But I’m still not cured, and even the treatments only just emerging in research don’t appear, as yet to offer the prospect of a real “all clear”. My myeloma continues to be “Treatable but Incurable”, and aside from the specific physical indignities of my variant of disease, that’s probably the most meaningful classification of my “type” of cancer. It's not curable, it won't go away, but it is treatable, there's stuff we can do, for a while longer yet. Treatable but Incurable Cancer. TBIC (I’m making up my own acronyms now…): a cancer that will always demand attention, and for which it’s nearly impossible to make a meaningful prognosis. You can expect to live with it for a long time. And you can expect it, eventually, to kill you. When I speak to others who live with diseases combining those features, I tend to assume they understand my experience, and vice versa.
That wasn't how I processed it when I first learned about it. At that point the basic outtake was just the one word:
INCURABLE
Which comes with a lot of baggage, let's be honest. But even all these years later, when I've got over the shock, I still find my predicament surprisingly obscure. Culturally obscure that is, but not actually as rare as one might imagine. If I forget, for a moment, the specifics of the fact that my tumour clones derived from plasma B-cells, and focus on the more general impact of treatable but incurable disease, I'm in a different context. Obviously, when I go for treatment I want a myeloma specialist, doing myeloma specific interventions. But the rest of the time, what company do I really keep? TBIC is quite a new categorisation. It's been talked of for a while, if one goes looking for it, but you're not going to bump into it in the street. MacMillan are probably the single most visible source of patient support for cancer in the UK. What do they have to say about it? Um, not much. If one digs into their site to the
diagnosis page you can find the line
"These days, many people are cured of cancer or are able to live with it for many years."
Which kind of nods to the truth, but in a passing sort of way, and only in the context of a consolation prize for not being cured. Oh, and it's buried in the site. It's not - they consider - home page news.
But the TBIC community is increasingly significant, as better treatment prolongs lives. No-one really expected me to get ten plus years. I'm optimistic now that I might get twenty. But actually, optimism isn't really the point. I've come to accept that while mortality is certain, persistence is uncertain. It is a bit pointless making guesses when there are so many unknowns. I don't know what treatments will be available when I need them, to the extent that it's a race between my tumour and science. And I don't know whether I'll be side swiped, as I so nearly was this winter. I could die while "cancer free", but it would still be the myeloma that got me. What is the point of fixating on so many unknowables. Much clearer, and more honest, to begin to think of
cancer as a chronic disease and consign the "Oh Lordy! I might die!" stuff to being just one of the many facets of that disease.
Which brings me back to profile and awareness. Being TBIC is not well understood. “Treatable” is often assumed to mean “will live a long time, with only minor difficulties/inconvenience”. And “incurable”, in the context of cancer, is often assumed synonymous with “terminal”. So “treatable but incurable” seems an oxymoron. But we have both meanings wrong. On the one hand, just because a
treatment can be applied it doesn't mean it is necessarily likely to be successful or prolong the your life. And on the other, incurable isn't the same as dead.
It's difficult to get good data on the incidence of TBIC because no-one tends to categorise diagnoses this way, and some cancers progress from initially (hopefully) curable to later proving (sadly) incurable - either by recurrence, metastasis or just late diagnosis. The UK is better than most for collecting this kind of information, because of the existence of the (single, consolidated) NHS. It's another undersung benefit of our health care system compared to almost anyone else’s. At the narrowest measure we could take of TBIC prevalence, about 130,000 people in the UK are living with cancers which are TBI from every diagnosis. But a wider definition, to include relapsed and secondary cancers from initially curable diseases that weren’t cured, might involve twice as many people. Maybe one in 200 of the adult population. To put this in the context of relatively well known treatable but incurable diseases, that’s a similar prevalence to Multiple Sclerosis, or to Crohns/Colitis. All of which leave me thinking we have a profile problem here.
TBICs have a recognisable pattern. One experiences periods of treatment and periods of remission. One lives with symptoms, side effects and long term irreversible consequences. And one has to swallow and digest profound uncertainty and mortal fear. It’s a mental challenge distinct from (not necessarily harder than) other diseases. A condition in its own right.
My ‘eloma has proved, in the last few months, what I already knew. It could easily kill me in the near future. I had a close near miss in Florida. Closer than I might care to admit. Or I could live a long old time until you're all heartily sick of me banging on about it - if that point hasn't already been passed. Current treatment has my disease undetectable, after all. That’s the construct in which people with TBIC have to live, between death and redemption. It's an unsettling prospect, I admit. So no wonder people would much rather hear a happy ending. I still feel people (who don't know me well) fishing for the positive:
"But now you're going to be OK?" as a way to end conversations. And when that isn’t on offer, people surprisingly often insist on labelling disease “terminal”. I'm not sure why that would be reassuring, except to the extent that uncertainty is the scariest thing. But from my side I'll take uncertainty any day if the alternative it terminality (which, to be clear, actually has a much narrower medical meaning, basically you're not expected to live more than a year. Don't bandy about terms you don't understand). The rest - could be around for ages, but will never be in the clear - is something society doesn’t really want to hear about. I think it's a matter of lack of interest and ignorance, more than active silencing, though there's plenty of taboos, still, of what it's acceptable to say. I've been told my writing about it is horrid. But given that I have Dialm as a platform, my complaints about being gagged would be about as convincing as when John Cleese goes on the BBC to complain that the BBC is silencing him.
I began to wonder about the framework of TBIC. Other than platitudes of the type on offer on MacMillan's website ("you might die later!"), I couldn't find much. It's the mental world I'm interested in here primarily, as the physical problems vary between diseases. And anyway the medical industry is there to focus on researching and delivering treatment. But there's been much less investigation into the TBIC world as a lived experience, as far as I'm aware. I found one
interesting little study trying to map the psychological terrain of myeloma. It only involved six patients, and it was specific to myeloma, (and it was almost twenty years ago), but I was struck by the conclusions - which seemed to put a shape to my own experience. It identified five mental “constructs". I've both reordered and renamed their categories slightly here (and substituted what follows with my own interpretations!):
- Diagnosis and Investigation
- Symptoms and Treatment Impact
- Recuperation
- Social Safety Networks
- Reflection and New Existence
The first three describe the cycle that you've witnessed me go through. Diagnosis deserves a space all of its own because it involves taking on a new, unanticipated, unwelcome challenge, and dealing with the fear. It's the bit that ever prompted me to write, and it is an utterly haunting experience I wouldn't wish on anyone. Maybe a better social awareness of TBIC as a thing - not a consolation prize for not being cured, not a delayed terminality, but just a thing - could help make diagnosis less shocking. But it will always be pretty shocking. And, since TBIC recurs, on whatever timetable it chooses, one is forced to revisit the diagnosis repeatedly. Each relapse is like a repeat of the diagnosis experience. A slap from mortality. Indeed I'm sure in myself that I hadn't fully digested my diagnosis until after my first relapse. Only once I'd "beaten" it twice, do I think I truly got the measure of the beast. When I say it doesn't scare me any more, it's because I've been redipped; last year was my third. I've done "diagnosis" now. I think I get it. Even in remission there's the endless progression of tests and scans; being incessantly measured for flaws. TBIC diagnosis is a living thing. It could quite plausibly turn into something else (probably, something worse). I'm due a BoMB to rule out the possibility that my 'eloma has developed into
MDS. I think this is unlikely, but it's still a conversation I have had to have in the last week. And while writing this, I got a call asking me to come in for a vascular scan of my legs, to check for clots.
The next two - treatment and recuperation - are phases of existence. They're somewhat all encompassing and tend to knock the rest of life entirely out of play. Treatment is easily enough understood; less easily endured. It's the response to the intrusion of progressive disease. It's a routine and an obligation. If I think back to my first illness, it involved being in King's Chemo Day Unit for hours on end, day after day. Or last autumn, it was schlepping to Guy's each day to strip naked and lie under the radiotherapy gun. But it's also all the accompanying crap, like crazy quantities of supportive meds (I took nine different drugs before breakfast this morning). And of course, it is symptoms and side effects. It's hard work. And if - like happened to me in 2018-2019 - it takes ages to get things to go the right direction, then the light can seem to entirely extinguish. Plus it's (no shit *) the most dangerous bit, because you never know if it's going to work out. Quite often, you don't know whether it is working. Sometimes you suspect, with good reason, that it's not working. But you still have to continue popping pills and showing up for whatever indignities have been prescribed. It's a dark place, and it forces you to withdraw from the world. My greatest single regret in the way I handle my illness, is that during illness and treatment I'm not better at keeping close to my family. Especially the boys, for whom time living in the the family home is ultimately transient. Soon enough they'll be gone, and I will always regret the time lost (2012, 2018-2019, 2022), when I wasn't really here.
The last three "constructs" are the payback. They're the reward. If you could tap in to them, without the violence of diagnosis and treatment, you'd want them in your life. Recuperation is a treat reserved for those who've been really ill. And if you're really ill again and again, you might get recuperation and recovery again and again. It's exhilarating. It's where I am right now. It's realising you have got time. You do have energy. You could do something. You could do things you used to take for granted. I just drove the car, for the first time in four months. Sadly, I only drove to the doctor's, but it's still progress. It's waking up, every day thinking
"I feel better than yesterday. And yesterday I remember feeling better than before. I'd forgotten you can feel this good. I must have felt pretty crap not that long ago!"
It's an escalator, an elevator.
It is also confusing. It makes you ask questions about what you want to do. It makes you feel guilty for wasting time. The longer you're well, the harder those emotions intrude, and the more those questions need answering. But for a while, it's possible to just revel in the joy.
The last two are no longer about sequence, but about the changes TBIC causes in your brain and outlook. There is no question that myeloma has unlocked empathy in me that makes me feel the pre-mm Alex was honestly a bit of a dick. I understand stuff about life that I didn't before. I'm loathe to wax too lyrical about this because I suspect it would just make me sound smug. But it's the reason I'd really hesitate to take a pill that would transfer me to a universe where this hadn't happened to me. Now I know better, I don't think I could bear the arrogant ignorance. But the impact on my social world has been so much more than being a bit more nice. I've reached out to find myself a myeloma community for support and in the process learned to be more diverse in my choice of friends. I've learned a lot about my friendships: who's still there when the shit * hits the fan. I've learned to forgive and ignore all sorts of things people say or do when they don't know what to do or say. Sometimes people can be quite spectacularly awful, but I've learned in nearly all instances offence isn't meant. I've learned a lot about what to say, when not to walk away, what help looks like. In a fucked-up * way, I'm even a bit sad that I'm well enough again that the neighbours have decided - quite reasonably and correctly - they no longer need to feed us. Someone coming to your door to bring you dinner is a great way to feel loved. I think, at the crux, it's about being vulnerable. That term is often implicitly pejorative. In my Community Centre Manager role, I wrote safeguarding policies for "vulnerable adults" as though they're a distinct demographic, when - in truth - we're all vulnerable. And now I understand that, I'd rather be consciously vulnerable than imagine I'm invincible.
And finally reflection, new existence. I said a year ago, after a particularly odd week in hospital when I wasn't really ill, but just being observed, and where I basically spent a week alone in a room, twiddling the proverbial thumbs, that it had been a near-religious experience for me. I've learned that each time I go through the mill of myeloma, I come out a different person. Understanding that helps me move on. I knew with certainty, when I got off the ventilator in February, that it was time to quit my job, and I have subsequently done so. There are practical reasons for this, but also the knowledge that I'm just in a new place, and I need a new outlook. Let me explain it through trivia - I think that will be easier on the ear. So, let's evaluate my "existence" in the form of the first few minutes of my day. In previous incarnations - and this is about reincarnation, really, several lives in one - I've prided myself in being pretty practical. Mr Unfussy. My morning routine was a two minute shower, a stiff coffee and some marmite on toast. No frills. For much of my twenties, I skipped the toast bit. Shit. Shower. Shave. Coffee. Done. Well, not any more! I decided, in ICU, that I would take more time to appreciate small things, and I knew that would need to mean, for me, personal care and more observance of food (as pleasure not just fuel). The nurse I watched endlessly applying hand cream will never know what effect she had on me. Now my day begins with a little routine of my pills and my observations, to check I'm OK and remember to breathe, my connection with the reality of my disease. Then I spend a bit more time pratting about with personal care, connecting with myself and the day ahead. I'm moisturising every day like it's a sacrament, to signify the importance of the little things. I bought a trimmer with about ten different heads so I can trim in whatever direction. I'm trying to actually finish aftershave bottles, rather than collect them in a cupboard and/or leave them behind in hotels.
For breakfast today I had multiple sources of protein, two pro-biotics, a shot of ginger, fruit. Oh, and a stiff coffee or two. The point is I'm actually enjoying the fiddliness. I know pro-biotics are pseudo bullshit *, but I'm getting something from the experience. I don't know (I haven't asked) if Marisa can see the difference in me (a little less dismissive in my grumpy-old-man-ness) I hope so.
That's a long anecdotal way of saying the whole of life can be deconstructed and put back together again. None of us has to stay one thing forever, and I certainly do not desire to. If you see me with my long hair right now and wonder why. That's why. It's shorthand for 'I don't give a shit' *. I'm even growing my nails (it took having a ventilator in my face for a month to finally break an awful habit I'd struggled with all my life).
On reflection, there's a lot more to be gained from enjoying now than worrying about tomorrow, or dwelling on yesterday. In my new existence I can shed some of the baggage. I'm done with worrying about jobs. If you ask me, from now on...
"I am a writer"
Not someone trying (particularly) to get published. Just someone enjoying writing as my
thing. I'm beginning to piece together what this existence will be. It'll involve art galleries and daytime cinema (neither of those is new). It will involve a bit more investment in maintaining old friendships. There's a load of people I caught up with 18 months ago (before the latest blip) who I'd love to see again. It will involve trips to Sussex (again, not new). It may (I'm hesitating on this), involve volunteering for someone like
Blood Cancer UK - especially if that were a platform from which I could build awarness of TBIC. I'd like it to involve project work at the
Community Centre, but on my own terms. I'd like to be more involved in the "patients' voice" group at King's. This existence will not involve responsibilities and deadlines because all that happens then is I find myself on a gurney somewhere, attached to a drip, worrying about the Charity Commission submission, or whether anyone's changed the clock on the heating system, when I should be worrying about my health. Most of all, it will involve whatever contortions it takes to be more present at home, to enjoy my family. If that means I have to do nothing all day, merely to preserve enough energy, then I'll stop feeling guilty about making that choice.
I'm lucky, my C has proved T for long enough, despite being I, that I've had the chance to get through the looking glass. Of course it will carry on being difficult. Sometimes it will be an unrelenting pile of shit *. But I know what it is. And I think I understand how to live a life despite it.
That's what I wish someone could have explained to me, years ago. Maybe it could have saved me trying to piece it all together by myself. Somewhere here, there’s the basis to support TBIC as a community in its own right. What I’m saying here - what I’ve been working towards for a decade on Dialm - is to try to describe the TBIC experience. I'm not alone. Much more publicly than me, Deborah James has recently being saying the same, in a different way. I’m in awe of her ability to express it all so eloquently through dance. (
Deborah James: Bowelbabe in Her Own words - well worth watching. On iplayer, so UK only, or use a VPN.) What a treat to have perspectives like hers, even if too briefly.
One thing that needs to be addressed is the absence of terminology. I’m a what? Patient? Survivor? Victim? Fuck off *! I’m disabled, to an extent, but I’d feel a fraud claiming to be a “disabled person” - disability isn’t that big a component of my experience/interaction with the world. I really object to being labelled brave, heroic or inspirational, because I'm just making the most of it, trying to make sense of it, like anyone else would do. I’m a “person with blood cancer”, except, right now my blood cancer is undetectable and even if it never returns I’ll continue to live with physical consequences and with the mental scars. What am I? Today I'm Mr TBIC. But then, I'm also full of dexamethasone. When I come down/ sober up, maybe I'll be something entirely different.
* I hear the siren voice of the participant who raised her hand, during a course I was teaching in America, long ago, to ask me to "use less profanity". Sorry.
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.
