Thursday, 11 July 2019

Faithless

I'm nervous. Cos I'm the left eye, you're the right. Would it not be madness to fight?
We Come 1 - Faithless

I do wanna write. And I don't. A lot to say. And nothing. I'll try to avoid a long screed of whateversinmyhead, though it isn’t easy to get it in any better shape, right now.

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Start with the easy bit: the facts. After dropping dramatically in the first month on daratumumab, my light chains then went up, and up again in the second. Just when it seemed clear things weren't working, the count dropped again a couple of weeks ago, which may not be enough to class as good news, but certainly isn’t bad news. Honestly, no-one knows what this means. But alongside a bad bone marrow sample, the doctors tell me they think my 'eloma is "static", which is different from, and not as good as a "plateau" (but better than "progression"). We're awaiting the result of another whole body MRI, which should show up exactly what's there. It’s really going to have to serve as the “definitive” measure of where I am. Prepare for the outcome to be as equivocal as possible. In my experience, it usually is. Meanwhile, I feel really rather good, and my blood counts are almost normal. I'm not getting much fatigue (some acupuncture seems to have really helped). And the pain is OK, though it notably gets worse when my results are worse... and then better again when the results improve.

Depending on the severity uncovered by the MRI, we could be urgently seeking a new treatment... or not. And overall, I could still be heading for stem cell transplant or CAR-T. Indeed, one of the questions right now is whether having one has any bearing on whether I can subsequently have the other! Though unless we can get my disease under control, I may not be fit for any of them. Working my way through the drugs is not a good prognostic, lets be honest. I have never had - and do not want - any numerical estimate of my life expectancy. I always work on the basis that, at any moment, I've about a 50:50 change of still being here 5 years from now. But being in treatment, and the treatment not working well, must heighten the risks.

That’s the status update. One consequence is that, just when we thought we could make plans for the summer, we had to stop. The latest medical advice for travel plans is “wait a couple of weeks”, and “the timing might be better in 2 or 3 months”. I’ve been living with that, pretty much continuously, for years now. We wait a couple of weeks, but a couple of weeks never comes. As for the better times coming… I could be in the midst of a stem cell transplant in 3 months, for all any of us knows. It’s not easy.
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<long>
What follows may or may not be helpful. Feel free to ignore me.

When I relapsed, I imagined a year of treatment, culminating in a transplant, and then a return to (relative) normal. But 18 months on, I'm not sure I'm any nearer to that. It’s forcing me to unpack a lot of my assumptions, which have been all jam-tomorrow, when I need jam-today. A string of failed treatments does a lot to focus the mind (and sap your faith). I’ve lived in this state of perpetual uncertainty for a long time now, and it’s not easy to convey what that’s like, to those who haven’t been there. If you have an hour and a half to spare, I’d recommend watching the BBC documentary “War in the blood”, (on iplayer until end of July - may not be accessible outside the UK). It gives a good introduction to “CAR-T” therapy – which is potentially where I’m headed. But more than that, the experiences of both the patients featured, and their nearests/dearests are much like mine. I found myself reading subtext in pretty much everything they said. Not easy watching though.

I am very grateful to a few people who give me the opportunity to talk while they listen, unencumbered by knowing me socially; notably my nurse, my counsellor and my Alexander teacher. I’m discovering some of my ways of rationalising are a long way from rational, not even healthy. One of my friends in myelomaville, Deb Gasgoyne recently wrote a piece on her feelings of Survivor Guilt. Reading it, I was reassured that I’m not the only one who has some rather perverse responses to my own predicament. What she wrote did a lot to jolt me in to facing up to some of my demons; to explore, explain and sort out some of what goes on in my head. I’m on a bit of a mission now to dump some of the unhealthy things I think. It’s not an easy process, but a constructive one.

I’m going to write some of it down, for the reasons I always do: I find it therapeutic (sunlight as antiseptic); it may help others in similar circumstances; and it might help people who know me understand me better. If you don’t want to read it, don’t!

A lot of it begins with contradictory thoughts: I might still be here in 10 years; but it might all be over by Christmas. Both these things are true, and I’ve struggled to deal with the constant stress. I accuse myself of making up a melodrama. And if I talk about it, I feel like I’m attention-seeking. After all, I might still be talking about it for years to come! I’ve been quite intolerant of myself. It’s become more and more of an issue as I’ve worked my way through treatment after treatment. I project my self-critical thoughts onto other people, which is neither helpful, nor fair. Do I really believe anyone else actually thinks I’m making it all up? Not really. The only real critic is me; beating myself up for being honest.

Plus I have a tendency to denigrate my own experience. My bones get measurably worse after a couple of bad light chain scores, and then I get a better result and the pain fades. I’ve always interpreted that as insincerity: psychosomatic, not real. But this presupposes an underlying objective level of pain, and pain simply isn’t like that. I’m going to write a separate piece specifically addressing pain. In terms of the sorting out of what’s in my head, the point is that I’m endeavouring to stop denying my own experience. Yes, it hurts more when times are tough. Pain is physical and psychological.

I hurt a rib a couple of weeks ago, playing football with the boys. I mentioned it to my Alexander teacher, adding some qualification the gist of which was that I wasn't doing anything too dramatic when it happened. Her reaction made me question what I had said. Just what, exactly, in a bit of gentle father-son football would make me responsible for hurting my ribs? I know full well that if I threw myself heedlessly across the pitch, that'd be asking for trouble. I know I have limits. When we took the boys indoor skydiving, and indoor surfing, last weekend, I did not participate. But having limits isn’t the same as knowing where they are. I could try to steer well clear of my limits, but that would basically mean spending the rest of my life in an armchair. If I attempt to live any more than that I’m inevitably going to overshoot sometimes, and suffer for it in pain or fatigue. What I don’t need to be doing, when that happens, is carrying blame. I suspect the only person who really blames me, is me. But that's enough. It needs to stop.

Another area where I need to cease blaming myself, is the impact that my illness has on anyone else. I’m not responsible for it. I can be sad, but I’m not sorry. It’s not my fault. Why does this matter? Well because it's a short distance from being sorry to thinking people would be better off without me, or if I'd never been here. There have certainly been times, this last year, when I have felt like that. Those are the darkest thoughts of all.

The other day I told my counsellor something to the effect that I've always felt like myeloma was sort of appropriate to me - complicated, a bit cryptic, heavy on the numbers. She gave me a very odd look. So much so that I’m already finding it hard to think I even believed what I said – but I know I did. I’ve always thought of my myeloma in those terms. As long ago as 2013 I wrote in dialm: “It is very in character, for me, to get a rare, complicated disease”. Of course, that’s nonsense. My experience of myeloma is filtered through the fact that it is happening to me. It is as it is because it is my experience (and other people experience their disease their own way). One quizzical look burst the bubble in my head. This “myeloma” thing is no more meaningful than random chance. It doesn’t have a personality. It is nothing more than a profoundly shitty software bug. I don’t think I’ve been mythologizing it, but any residual interest I had in it, beyond the practicalities for me, disappeared on the spot.

I don’t know how helpful any of that is for you as reader - its been difficult for me to articulate as writer. My physical condition is like the proverbial swimming duck: it might look calm on the surface, but it’s more turbulent underneath. My mental condition is similar. I’m grateful for feeling good and looking well, really I am, but I’m not deceived by it.
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Wednesday, 8 May 2019

Dara

When I fall from the wagon, hiding from the businessmen, won't you find a way for me somehow?
Syrups - Foals

... KFLC (29/4) = 272 ... That's a 1/3 drop, after 3 weeks of daratumumab ... Currently on week 5 ...

It’s been a while. Much has changed. (Though the underlying predicament, has not.) I guess I’m bringing dialm back out of cold storage.

Having completed 4 cycles of RCD (lenalidomide based regimen), I had to stop treatment due to a collapse in my platelet counts. We’re still not 100% clear why this happened - could be treatment toxicity, could be autoimmune (chronic ITP)... who knows. Whatever the cause, for more than a month I needed platelet transfusions several times a week. We attempted to treat the problem with pulses of high dose steroids, and by putting me on a drug called eltrombopag that should stimulate platelet production/retention. Eltrombopag is a bit hard on the liver, so I’m not allowed to consume dairy products (or anything containing calcium) for large parts of the day. As a cheese lover, that’s a bit of an issue. My calcium levels are often low and I’m always being instructed to take calcium supplements. But since the calcium seems to collect as stones in my kidneys, I’m a bit reluctant. Finally, three weeks ago, my platelet levels began to recover. A relief - it’s unnerving to know one is being kept functional/ alive by blood donations. And it’s very restrictive having to spend so much time in hospital. I’m fed up of looking like a junky with track marks and bruises everywhere. To top it all, we were supposed to be going away for the weekend, and were forced to cancel the trip at the very last minute, as I was advised it wasn’t safe for me to fly. Instead, a weekend in Sussex, with regular messages on our phones prompting us to check in for abandoned flights and hotels... We do our best to keep cheery and positive, despite events, but it’s not always easy. Having a platelets crisis has been yet another crappy unpleasant disruption I could have done without. Add it to the long list of challenges I have had to overcome, this last year.

I had an inconclusive bone marrow biopsy two months ago, which didn’t explain my platelet problem or my apparently recurring disease. We decided we’d have to do it again to see if we could get a better sample. Every biopsy is an ordeal; it always takes repeated attempts to get a solid sample out - inject, stab, dig, hammer, pull, wince, repeat. In total, we have dug our 5 solid samples - of various qualities - in the last few weeks. My pelvis must resemble Emmenthal. Submitting to it repeatedly, in the knowledge that it may well be futile (there may not be enough good marrow to get a decent sample) requires a certain kind of resignation and acceptance. The doctor was as troubled by the process as I was, by the time we were repeating it for the 5th and final time: the first occasion I’ve observed my predicament cause visible distress in the person treating me. I’m deeply grateful to the professionalism, and the dignity, of my medical team. Perseverance paid off. The 5th sample was “good”, though the payoff was bad news. My marrow  was 80% plasma, when it should be <5%. Most of my marrow is myeloma - and the good marrow is squeezed into just a fifth of the space. This result would count, on its own, as active/progressive disease. And in the time off treatment, my light chains jumped from 150 to 410. The conclusion was that the lenalidomide hasn’t worked.

So, that means we’ve tried two different lines of treatment, both unsuccessfully. It appears my ‘eloma is refractory to proteasome inhibitors (bortezomib and ixazomib) and to imids (thalidomide and lenalidomide). According to The NHS, the next drug to try is daratumumab, a monoclonal antibody. This is a completely different approach to attacking the myeloma. I need to hope that we are successful, 3rd time lucky. Dara works by bonding to a surface protein (CD38) which is present on plasma cells but not much else. The dara triggers immune destruction of plasma cells - hopefully very specifically my myeloma, though it is likely to leave me immune suppressed too. Dara is a different kind of proposition. It’s much less likely to trigger normal chemo side effects (nausea, hair loss, neuropathy etc). But much more likely to cause infusion reactions. So the first time I take it, they put it in really slowly over the course of 10 hours, with all of us watching out for any reaction. It turns out to be very uneventful - I avoid any of the infusion reactions I had been warned to expect. But it still makes for a very long day in the ward. I am grateful to have a visitor to while away the time with chat (and frothy coffee, once we are >4hrs from my daily dose of eltrombopag).

For the time being, the plan involves weekly daratumumab infusions. Hopefully, they will continue to be uneventful. Though they will also be slow. I’m also needing to make a second trip to the hospital each week, to check in for support and, as necessary, to drop up my platelets, or administer G-CSF, or get ticked off for my poor electrolyte levels. For at least the next couple of months, that’s my routine. It will be a while (I don’t know how long) before we have any robust indication whether this approach is truly working. The initial response seems very positive - KFLCs dropped from 410 to 272 in the first 3 weeks. And the side effects are not too bad. Nothing at all as the drug goes in. Only limited amounts of drowsiness from the antihistamines or insomnia from the steroids (a different steroid - methylprednisolone, which is much less potent than dex). I’ve felt ”flu like” symptoms at the end of the week, but even those seem to be waning with each succeeding dose (#5 yesterday).

It’s easy to forget that all the treatment - 3 different protocols over more than a year - has been directed to a single destination: to have another stem cell transplant. We harvested new stem cells for this purpose; and in November we came within a week of doing it. The stop-start experience, and never quite knowing what time horizon I can hope to be “recovering” over, has been difficult to process mentally. But despite the frustration, I accept that we can only make plans on the basis of the circumstances. Statistically, a stem cell transplant is likely to be more beneficial if carried out when my myeloma is in remission. And that just hasn’t happened. If we had carried on regardless, the prognosis would not have been great - we’d likely have “wasted” the potential benefit. And we won’t get another chance: realistically, I will only be young enough and strong enough to undergo that kind of procedure once more.

However, another worry has grown, as we’ve struggled to find a drug regimen that works. Even assuming we get my myeloma into remission, we know it won’t stay there forever. I could continue on daratumumab for along time, if it works, but ultimately, it will fail. Similarly, another transplant might last many years,  yet not forever. And actually, the likelihood is that it will last less than the last one - so I’m looking at another relapse in 3 or 4 years, if I’m lucky. Given how difficult this relapse has been - how long it has taken, how much bone damage I sustained again, how many treatments we have tried and failed, and all the complications - I’m prepared to admit to being a little frightened at the prospect of the next one. Likelihood is it will be even rougher. I don’t really fancy my chances.

So, the doctors’ most recent suggestion is that we might head in a different direction, and they have put my name on their list for the CAR-T trial which has recently opened at Kings (so far they are treating 3 or 4 lymphomas/leukaemias this way and due to begin for myeloma imminently). CAR-T therapy harvests T-cells, modifies them to become myeloma antibody producing cells, and then reintroduces them, hopefully making one immune to one’s own disease. It has the potential to be curative, though it’s too new to be sure - there hasn’t been enough time to show whether the modified T-cells persist, or whether the myeloma eventually mutates to avoid them. I have assumed for a while now that this is the treatment I should ultimately be heading for. But there’s always an advantage in letting other people do the early trials, and following on when there’s more established experience. People have died in early CAR-T trials. It’s not without risk. However, I’m increasingly thinking that the biggest risk, for me, might be the next conventional relapse, by which point it may prove impossible to get my myeloma back in to remission, and where I might be too frail to withstand the CAR-T process. My best option may be to take my chances while I can. I’m lucky that the trial is available at Kings, and I am eligible (at least, I will be once I’ve had a course of daratumumab). That’s “the plan” as it stands - some combination of ongoing Dara, SCT and/or CAR-T. My hunch is that the docs will want me to have them all, if I can hack it. I have no idea how soon we’ll be ready. I guess it depends on my response to the daratumumab.

So... 2019 is proving a lot better than 2018... I’m sick of having my life put on hold by endless dramas... a period of relative peace would be invaluable. I think there’s a chance we might be able to book a last minute holiday for half term. I’ve even provisionally rebooked the recently abandoned weekend break. Maybe this summer, I’ll actually enjoy instead of merely endure.

The thing about myeloma, is it's relentless. There's never a day off. Never 5 minutes off, really. And when things get really hard, it's like being dropped down a deep hole. Sometimes (often) good and bad days alternate. But one wakes on the good mornings at the bottom of the hole, and sometimes can't be bothered to drag oneself out. Especially if tomorrow is likely to involve being pushed back in. Which is all to say that though there have been plenty of respite days, these last 18 months, it has been impossible for me to commit to anything, or achieve much against any set of tasks I might set myself. So many things I want to do and be, but can't. I'm hoping that, at last, treatment becomes sufficiently uneventful to let the rest of my life begin to regrow.

Thanks, as always, to those who have propped us up, in the last few months. Our needs are sometimes invisible, from the outside, but up close, the intensity and unpredictability of this whole journey is quite debilitating for all 5 of us. We’re grateful for the support: flattered that people care and haven’t succumbed to compassion fatigue by now. Our needs probably won’t diminish much over the coming months. Thanks for sticking with us. It’s all a lot better than it was, but still quite challenging. Lyndon turned 7 a few weeks ago. Back in the early days, when I was pretty much bedridden and he was a bouncing baby, I used to take much solace in his smile. “You’re the reason” I would remind myself: hope and potential, to incentivise me; sustain my willingness to succumb to whatever treatment is proposed; and to live through whatever sickness and pain the myeloma doles out. 7 years later, my kids are still smiling (Marisa and I must be doing something right!) I’ll try to match them. “Garde ta foy” as my college motto goes ( = “keep the faith”, though we used to mistranslate it as “look after your liver”. We were so droll).

Monday, 4 March 2019

Clotless

One reason I am reluctant to write here more, or more frequently, than I have to, is because it perpetuates the sense that this is some kind of soap opera. But although it has some soapy characteristics, and endless plot twists, I certainly don’t find it entertaining. However, if I don’t post, it’s hard for anyone else to have any awareness of what’s going on. Those who have seen me recently will know I look well enough. But looks can be deceiving. (Though if I showed you the track marks up my arms, you’d get more of an idea of what’s been going on.)

There was a glimmer of good news last week, with my light chains down for the second month in a row. That is positive, important, and rare. Only the second time, since I started treatment, that I’ve had 2 consecutive “good” months. Worthy of celebration.

Unfortunately, at the same time, we have a new drama: abruptly, I have very few platelets in my blood. (Over the last month, my platelet count dropped from 195 to just 8, and it is stubbornly staying that low, despite several transfusions to top it up.) These are the cells that enable blood to clot: being without is frankly dangerous. After some investigation (including an emergency bone marrow biopsy - yippee), the Drs believe that the cause is “treatment toxicity” - ie the drugs are to blame. So, I’m off treatment (even though it was working) and awaiting a decision on whether we’ll attempt to restart, or try to move on to transplant.

In the meantime I’m tied to the hospital. I spent half of last week in the treatment room, and I am there again now awaiting yet another blood transfusion. For the time being, I think that’s how it will be. My nurse asked me this morning how I’m coping. If I’m honest, I’ve stopped worrying about the bigger picture and the long term. It’s so endless, relentless and unaccommodating that I’ve given up bothering to try to interpret what each twist and turn might “mean”for my prognosis. Whatever we’re fretting about today, it will probably be something wholly different in a few days time. There’s no point trying to read the runes. I’m pretty much beyond caring.

The short term is where it’s at. In the short term, I’m doing my best to accept my circumstances. I cannot make a plan from one week to the next - and that’s been true largely without exception for well over a year now. I waved my kids off to school today, not even knowing whether I will be able to pick them up this afternoon. I make plans and appointments... and then cancel most of them. I have moments of lucidity when I can think ahead, imagining projects I might undertake or participate in. And then I have the rug pulled from under me again, and am humbled by the realisation that I have absolutely no control over my life from one day to the next. I don’t know which days this week I will spend in the hospital. I don’t know if I will restart chemo next week, or not. I still believe that I will, eventually, have my transplant, but whether that is going to happen this month, or next, or whether it won’t be for another six months, I haven’t a clue. I will be out of circulation for several months, but I don’t know which ones. You can probably appreciate how difficult it is to process that kind of information. But unless you’ve been there, I don’t expect you to be able to comprehend what it feels like. I don’t know whose birthday I will miss. I don’t know whether I will be able to witness any particular performance or milestone. Will I be there for your class assembly? Will I watch your next match? Will I speak to your violin teacher? I don’t know. Will we go away for the school holiday, and if we do, will I come too? I don’t know. Right now, I’m waiting for my platelets, and that’s my horizon.

And all the time, we’re heading for this mythical time, post transplant, when I will be in remission and living a “normal” life. But I find it hard to form a mental picture of that phase of my life-to-come. It seems almost implausible. Certainly it isn’t sufficiently compelling for me to use as a mental anchor through the storm. I must navigate the now, accepting simply that it is what it is, and that what will be will be.

So... that’s where I am... There’s not much anyone can “do” - I have the NHS by my side, and they will keep propping me up. Spare a moment for Marisa and the boys, though: they too have to live my uncertainty.

Thursday, 31 January 2019

A corner?

I think, at last, things have turned a corner. So it seems appropriate to bring you up to date.

Treatment

I was on ixazomib & thalidomide from January until September last year. At the end of treatment we thought it had worked, if not amazingly, at least adequately. But in October the doctors decided that the response wasn't good enough and we needed to do something else. Looking back now, it is clear from my results that the treatment worked for a brief while. But having reduced my light chains by 50% after the first 4 months, it stopped having any effect, and by the end they were going up again.

I started on lenalidomide & cyclophosphamide in November. After three months, this seems to be working, though my myeloma insists on making it a two steps forward one step back experience (only once in the last year have I had 2 consecutive "good" months). At the end of cycle #2 my numbers were going the wrong way again, and my nurse was forewarning me that the likely third line of attack would be to switch to a regime called DT-PACE. Chemo is never easy, but I'm terrified of "intensified" protocols like DT-PACE, which consists of 6 drugs, continuous infusions over multiple days, and requires hospitalisation for part of each month. And anyway, there is a negative prognostic implication every time my myeloma it resistant to another drug. Especially so for lenalidomide, which is one of the real workhorses of myeloma treatment. So I was intensely relieved, yesterday, to find another big drop after cycle #3. Two steps forward, I hope.

I know it is entirely possible that cycle #4 will go the other way again - my myeloma's most distinctive feature is utter unpredictability - but I'm cautiously optimistic. My light chains (199 @ 24th Jan) and k/l ratio (24 @ 24th Jan) are now the best they've been since early 2016. And, although I know my subjective experience doesn't always align with the numbers, I have been feeling so much better, the last few months (pretty much since I started on the new regime), that I am inclined to believe that these drugs have now knocked out areas of myeloma that had until recently stubbornly refused to succumb.

My current expectation - though this changes all the time - is that I will continue on this regime until the end of April, and finally be ready for stem cell transplant in May.

A couple of months ago I found myself doubled over in pain that turned out to be a kidney stone. I'm pretty certain that this is the third time I've had kidney stones since my myeloma diagnosis. There's some disagreement between my medics about how likely myeloma is to cause kidney stones, but I believe this stone was calcite, and I live in a permanent state of calcium supplements and with a disease that deposits calcium in the blood... it seems reasonable, to me, to point the finger at the myeloma. One facet of myeloma is its ability to cause such a wide range of knock-on issues. One has the sensation of making incremental visits to more and more corners of the hospital. So, off I go to the awkward and embarrassing men's problems clinic. On previous occasions, I must have passed my stones. But this one was too big (8mm): I had to have it operated on this week. It's best not to think too much about the operating process, and just be grateful for the general anaesthetic. Suffice to say they gain access without making any incisions. When I woke up they told me they'd left a "stent" in the tube between my kidney and bladder, with a string to enable its removal. I'll admit to not feeling quite right while I had this string hanging out, and I was glad to go get it removed yesterday. I was shocked to see the stent: I hadn't imagined it would be about 30cm long. Having that pulled out of... well, it's done now. 

Life (quality or lack thereof)

I won't dress it up: last year was awful. My time on ixa/thal was grim. I was hospitalised twice with flu and pleurisy. I had a lot of physical symptoms and side effects: a bunch of new rib fractures (including my sternum), a lot of bone pain, posture problems, shortness of breath and generally feeling unwell. I had no energy. If anything, the mental side effects were worse. It was only after I stopped taking the drugs that I realised quite what they had been doing to my head. I was, I’m certain now, suffering treatment-induced depression, to the point of being suicidal. (It’s not hard to be suicidal with myeloma. The train of thought goes something like “You have no quality of life. The only reason to go through treatment is to be around for your family. But when you feel so bad, what good are you to them? So... what are you going to do about it?”) It was only when I came off the drugs that I gained any perspective on what had just happened to me. I'm sure plenty of people observed, during the course of the year, that I wasn't in a good place. But, one inevitably bottles a lot of it up. I can recall thinking that the only useful function I could serve in my family was to carry my burden quietly, so that Marisa and the boys didn't have to share it with me. So... that added loneliness to the symptoms. It was just horrible.

The good news is that the current drugs don't seem to give me any serious side effects. I've had some problems with neutropenia, which is pretty common on lenalidomide, and could be dangerous if not managed (I'm taking G-CSF several times a week to counter it). And I still get the ups and downs from steroids, which is no fun for me or those around me. But these are minor things in the broader scheme. I have energy. I have motivation. I am largely pain free. I no longer crack ribs every time I stretch out my arm. And now the kidney stone is gone, too.

It has been nearly 18 months now since I was able to work, and I am very, very bored. One consequence of my myeloma's zig-zag response to treatment is that I never know what's coming. I started treatment thinking I'd have a transplant in summer 2018. As recently as October, I thought it was imminent - in which case I'd have been back on my feet (with a following wind) by now. Now it seems that it will be 2019. But only last week, I was steeling myself for yet another change of treatment and prognosis. It's impossible, with all that going on, to commit to anything. Just when one gets to the point of making any kind of plan, or pledge to oneself, something unanticipated (and usually awful) comes along to wreck everything. When you think you're trapped in an endless cycle of miserable, painful experiences, you lose all your willpower.

I'm certainly not robust enough that another knock back wouldn't have exactly the same effect as has happened to me repeatedly during the last year. So, if this proves to be false hope - if the last downward zig were to be offset by an upward zag next month, and I were to fall back into despondency (which I most certainly would do), then you can read all of this as a cry for help - not just from me, but on behalf of the people who have to live with me.

But maybe, just maybe, I have finally turned enough of a corner to put this particular phase behind me. I feel I can tentatively begin to imagine doing things. Living. Which is, after all, the point.

Friday, 26 October 2018

Brexshit

Like brexit, myeloma doesn't go away just because you're fed up talking about it. I'm conscious that plenty of my friends deserve an update - so I'm posting "from beyond the grave" of the blog. I'll try to keep it brief.

I've spent the last 2 months doing all the prep for transplant, which was scheduled to go ahead on Monday. However, this week, my doctors have reviewed my position again and decided on a different course. My response to treatment has hovered, since about June, on the borderline between what they would call "partial response" or "minimal response", making the decision of what to do next a marginal one. Their advice - this week - is that it would be better to change my treatment and try for a better response, before transplanting. So I am about to begin on a new regime - cyclophosphamide, lenalidomide and dex - for at least 4x 28 day cycles. (In the process, they are taking me off the clinical trial I have been on. But given the patchy impact of the drugs, it doesn't much matter to me whether I'm on the trial or not.)

Aside from the awfulness of having this all sprung on me in the last days before transplant (and that has been a pretty horrendous experience), it means a few other blunt truths have to be faced:

  • We are basically back to square 1 (though in a slightly healthier position); beginning chemo with the intention of transplanting in 4 or 6 or 8 months time. The last year and all the side effects have been, if not "for nothing", then certainly for "not enough".
  • If myeloma treatment is a matter of firing a succession of bullets, each representing one line of treatment, with the aim of firing the fewest bullets over the longest time, and so prolonging treatment options, then we just fired another bullet.
  • Rather than imagining myself surmounting the "final hurdle" before easier times, I must face up to the fact that I may well be on chemo now forever. My doctor talked explicitly today about how we might ensure I am able to continue my chemo after my transplant (as and when that actually happens).
  • I had already written 2018 off to treatment, now I must assign 2019 the same way. I'm not overly optimistic that some future year might miraculously not be dominated by treatment of one form or another.

All pretty grim. I begin my new regime in a week's time. I'm hoping the side effects will be a lot less severe than the last treatment.

Thanks to everyone who has committed time to supporting us in the weeks ahead. We will need different support from what we had anticipated. I will need to work out how much I am capable of, in the next phase, and then get my head round what kind of "life" exists, beyond popping the pills. I can't see that far, just yet.

Friday, 21 September 2018

Epilogue eleven

This is the end, beautiful friend
The End - The Doors

And that’s it. Fin. (There may be a role for some brief updates in the future - we’ll see.)

Last year, in Japan, we visited a theme park in the city of Beppu, in Kyushu, It boasted of being one of the region's “Top 31” attractions. We had a good laugh about that. Presumably not in the Top 30, we figured.

I had been lent a book about Japan by a friend. Serendipitously, the book turned out to have been written by my anthropology supervisor from university (Professor Alan Macfarlane). So I was delighting (!) the rest of my family by infusing our adventure with ethnography.

It transpires that Japanese people actively avoid "Top 10" type lists. The round number implies, to them, that the length of the list was defined first, and then populated afterwards. What to Western eyes looks tidy, to Japanese eyes looks contrived. Where we might use the number of places on the list as a proxy criterion for judging candidates, Japanese would have to determine some other criteria for inclusion/exclusion. If a Japanese person were compiling a list, (s)he’d even be inclined to nudge the threshold for inclusion slightly in order to avoid ending off with a round number of entries.

For similar reasons, they tend not to sell things in tidy sets of 4 or 6, preferring odd and awkward numbers. (I bought a lovely set of 5 pairs of chopsticks - perfect for our family.)

There's no way I'd finish this blog, were I Japanese, with ten epilogues. And in this, they have a point. So, I’m respecting Japanese tradition, for a moment here. Because there's no defined moment when it should all cease. But somewhere, it has to.

That moment, I've decided, is here. It doesn’t really matter how. Even if it’s in the middle of a

Thursday, 20 September 2018

Epilogue ten

I think I have the best of me inside my head. No one else competes with me, I think I'm great
Eat My Dust You Insensitive Fuck - The Catherine Wheel

Enough of all this chit, Alex, how are you, exactly?

If you've waded through this far, you really must be keen to know how I am?

I finished my chemo two weeks ago and am feeling better by the day. Though my back is still sore a lot of the time.

My light chains were, last seen, around 300, which is a partial response, not a fantastic one. But good enough.

This treatment regime has been hard. As I have emerged from it, since I stopped taking the drugs, I’ve been surprised by the change. I didn’t realise quite how much it was affecting me. In particular I think the thalidomide has been really gruelling for me and I am glad I will not have to take it again. It has made pretty much everything more challenging/draining and less rewarding/enjoyable.

Unless there's a real change of plan, I am due to start the stem cell harvest mobilisation process on 28th Sept, and complete the harvest apheresis by 9th Oct. The transplant itself is provisionally due to begin on 29th Oct. Depending on the regime (which arm of the clinical trial I am randomised in to), the transplant process will take 3 or 6 days from end to end. And then there’s just the recovery; which is the difficult bit (!); and which will take months.

I will be fitted with a PICC line in preparation for the transplant (though the actual stem cells will not be administered that way). My hospital no longer routinely fits Hickman lines for SCT, as they did previously.

(Plans could change if I were deemed not sufficiently healthy to transplant, or if a significant area of stubbornly refractory myeloma was identified such that we could not class my situation as remission. But neither of those circumstances is likely.)

After the transplant, I will be out of action for most of the rest of the year - for a good chunk of it isolated either in hospital or at home. I may begin the transplant process as an “ambulatory” patient; spending my days in hospital but my nights at home. Once my immune system has been completely surpressed, I will certainly spend the subsequent two weeks isolated in hospital. After that, I will be recuperating again at home.

We are continuing to investigate the condition of my rib cage, to try to explain why I have such recurrences of pain there.

TImage result for that's all folks

Wednesday, 19 September 2018

Epilogue nine

I'm the type of guy to boost your self esteem. We party all night cos it's you, you, you everyday. Self obsessed and sexxee all the way
Self Obsessed and Sexxee - Sonic Youth

Relationship under construction

I don't feel I've been able to be a good dad, husband, son, brother, friend or neighbour, this year. A number of people have been very supportive to us, and I've been very grateful for that, with no sense that I've any ability to give anything back. Sometimes it is easier to withdraw - to read the newspaper on my phone, or stick my headphones on - than engage with other people when I don't have much to say, and when I feel as though all I "contribute" is to drain away life and energy.

There's a lot of relationships I want to rebuild.

In particular, Marisa has to put up with every single up and down of my "journey". When my myeloma is being intensely physical, it becomes a very solitary experience. But even though Marisa isn't a physical participant in it, she still has to put up with it, and me, every single day.

Relationships often don't survive massive trauma. When one reads stories, for example, of couples who have lost a child, one isn't at all surprised if the couple subsequently separated. Trauma is isolating and disruptive. From the very beginning I found my myeloma pulled us into different rhythms.

We recently passed the milestone of 20 years since we met and started going out. We are both significantly different people than we were back then. There have been many times, these last few years, when I have worried and lamented what myeloma has done to us. I'm sure I will worry about that again.

But I will also cling to another insight. Everybody grows. Everybody changes. A strong relationship means continually building a new relationship together. So, I've stopped worrying about what we've been through. The next 20 years will, inevitably, be different from the last. And it's our job to create it.

As always, I owe a massive debt of thanks to you, Marisa. For sticking by me when I don't always deserve it. For carrying all the weight that I am unable to. I'm so proud of you for the person that you have become, the career you have built, and for being such a conscientious, devoted mother.

I will always be sorry for what myeloma has done, because even though I know it is not my fault, they are still my cells. It is part of me.

But... None of us knows what tomorrow holds. And everyone has to navigate the complexities of being in their 40s. It's really not all about the myeloma.

When I'm done with this SCT, let's paint the town red. Love you.

Tuesday, 18 September 2018

Epilogue eight

Do you realize that you have the most beautiful face? Do you realize we're floating in space?
Do You Realize?? - The Flaming Lips

A sense of purpose

This year - if I haven't mentioned it already - has been pretty rough. One consequence of being permanently doped up on drugs that make you feel unwell and prevent you working, is that you lose any sense of narrative of what you are actually doing. I started to find that any social occasion was increasingly awkward, as I didn't have anything to say. Other people talk about work, or family life or the amusements and trivia that come with city living. In response, who wants me to divulge how dreary it is, sitting at home feeling like shit? It doesn't take long before one is actively avoiding social interaction.

We're all well aware that we are often judged by our work.
"What do you do?"
Being ill is not much substitute for a career.
"Er. Thalidomide? Pneumonia? Groaning?"

I was dwelling, on a beach lounger, what it would take for me to address this. I came to two realisations.

1) There must be more to me than being a guy-with-cancer. And that requires me to define some roles for myself and then work to grow into them. Having purpose matters. A friend has recently had a book published. As well as being inspired by her writing, I've also observed how she has established her identity as an author. I would like to hope that writing could be a defining role for me too, among other things. But I'm not going to run before I can walk here... the first step is to invest meaningful time in meaningful projects, in order to establish a new purpose for me. I need some reinventions.

In the past, I've tended to shrug - knowing the most lucrative thing I can do is to continue my consultancy business. And many of the side projects have faded away. However, if it is, first and foremost about identity, then the money hardly matters.

2) If a second SCT demands some reinvention of me, then that will need to involve some things ending, as well as some beginning. To an extent, that explains why I've chosen now to wrap up this blog. At the same time, I have taken myself off social media. And I'm in the process of re-inventing, re-articulating and re-launching my business. Because I need some space. I need some news, that isn't myeloma related.

I'm not sure yet what all the beginnings are. I've been having fun writing bits for a novel (I've harboured pretensions in that direction for a long time... at least now I have some actual output to show for it). My recently-published friend is being very supportive and pushing me along. Who knows where this will lead.

I would like to spend a bit of time supporting local enterprises and organisation in South London. Having lived here for more than twenty years, I am passionately in love with the diverse community I live in. (Brexit, these last two years, has served to reinforce that in my mind. Half the country appears scared of precisely what makes my community great.)

And I'd like to put some energy back in to a cause that matters, in particular, into Sub-Saharan African development, being the area that is closest to my heart. When I am through this SCT, I will be seeking a way to do that.

Writer, South London community worker, Africa promoter.

Or something like that.

Monday, 17 September 2018

Epilogue seven

Money, it's a hit. Don't give me that do goody good bullshit
Money - Pink Floyd

Financial disservices

I arrived at university enrolled on a course that I didn't enjoy. I had taken a "gap year", during which I had lived in rural Zimbabwe, teaching (very badly) in a local school. It had opened my eyes and changed my outlook. Now I was unsure what I was doing, or where I was going. Physics no longer held much appeal. Fortunately the university supported me, and helped me switch subjects. (They could easily have just kicked me out for being useless.) I ended up with a degree in anthropology, which suited me very well.

I had no greater vision of what work I wanted to do, either. When the vacations came, I sought a job. At first I worked in a kitchen, and then I got some admin/assistant work in an office. It happened to be a Marketing Department. It was fun. So, as graduation approached I applied for sales and marketing roles. I spent a season selling pop to corner shops on the south coast, 18 months with franchises and acquisitions in newly-capitalist Eastern Europe, a couple of years building relationships with supermarket head offices on behalf of a brewery, and a year creating wild and exciting ideas for a campaign that, in the end, never happened.

In 1999, I knew I needed a new challenge. The internet was spawning lots of dot-com start ups. I guess the atmosphere gave me courage (I wasn't daft enough to actually join a dot-com). I was offered a job by a guy with a razor sharp mind and ruthless drive. The work was exciting, and he had a fabulous list of customers and contacts. So I swapped the relative security of a company employing 40,000 people, for one employing just 2: my new boss and me. We promised to create compelling ideas and strategies for whoever would hire us. We got ourselves t-shirts printed with "corporate whore" written on the front (all lower case, sans serif, no punctuation), much to the disgust of our neighbours in our somewhat genteel shared office space in Primrose Hill. We worked very, very hard. In our own little way, we made waves and shook things up. Lots of advertising agencies hated us, because we stepped on their toes; endeavouring to do the smart thinking which they had previously considered part of their fiefdom. It was fun. The work was great. Career-wise, it proved very astute.

Six years on, my boss' ambition and mine had diverged. At the same time, work and home were becoming increasingly incompatible. In the autumn of 2006, as Ben's first birthday was approaching, my schedule said I should be on a plane to somewhere (mostly Asia and Latin America), every single week. Knowing I needed a change, but unsure what on earth to do, I shut myself in my office and spent a few days working out what my proposition was. Alarmingly, I found I'd written something that I could only attempt to bring to life if I were completely independent... So... I set up shop on my own. (I think my Dad thought I was mad; at least reckless.) I articulated my pitch on a few sheets of paper, phoned up everyone I'd ever met, invited them for coffee, and attempted to set out my stall. Two coffee-conversations rapidly opened up opportunities. I wrote project proposals, and secured some work. By this stage, Marisa was pregnant again. I had quite a lot to prove. I've never looked back.

I had read several of those "Start your own business" books. Most of them were absolute dross, but they did encourage you to have a tangible goal. I set a financial target (after all, I had children to feed), and expressed it in the form of a beautiful view of New Zealand's South Island, where Marisa and I concocted a plan to buy some land.

I endeavoured to be a ruthlessly low cost operator. (Back then most companies would have boasted about the size of their budgets. These days there's far more recognition of the power of "zero".) I decided to pursue the work rather than the vanity of trying to build an empire. So no fancy office, and no PA. When the financial crisis erupted, in my second year, some of the bread-and-butter projects dried up. To compensate, I pitched for things that might, in the past, have been contracted to monolithic management consultancies, and I was lean enough and hungry enough to win more work that way.

A substantial dose of circumstance and good fortune have been involved in my "self made" story. My comfortable middle class upbringing, for starters. But plenty of graft and cunning has gone in to it too. There has been something very satisfying about each invoice, representing the client's confidence that my contribution has added substantially more value than it cost. My old boss believed people divide into "hunters and farmers". He was proud that we were hunters: pursuing and catching. To be good at that, you have to be effective at building relationships, and persuasive in creating mental pictures of what you might achieve together. I've been equally proud, subsequently, to be a farmer: nurturing and growing. That requires a different kind of relationship building, and utter consistency in delivering quality. And much of my business has come from outside the UK - from the EU and beyond. The UK doesn't have enough exporters.

Five years in, I developed myeloma. Fortunately, I had several very kind and generous clients, who enabled me to adjust my workload to fit my physical capabilities. I was able to carry on working, through my initial treatment, my SCT and the remission that followed, for another six years. This year is the first time I've stopped.

What relevance is this?

It means I've been largely spared the financial challenges that myeloma often brings. I couldn't get any sick pay, but neither did I have to face up to whether or not my workplace wanted me back, or the potential for discrimination. Nor have I had to fight through the "hostile environment" for benefits.

It's like a whole missing thread in dialm.

Sadly, to the limited extent that I do have experience of these issues, the outlook is pretty bleak. I have, where possible, avoided telling people I work with about my illness. On the occasions when I have been forced to, I have typically found myself discriminated against as a consequence....
... The school (I was training to be a teacher, too, when my myeloma erupted), that  simply terminated my placement, rather than even take the time discuss with me whether or how to make things work together ...
... The "mentor" who made all sorts of verbal promises, and then spent the rest of our relationship doing her best to actively undermine me and deliberately removed any support I might have hoped for ...
... The potential clients who stopped returning my calls ...
I'd love to say it was anything different from this, but that's the truth. Mostly, in workplaces, in my experience, people behave pretty badly towards someone with health issues. Not everyone - I have had a few very considerate and understanding clients. But mostly.

This year, for the first time, I'm engaging with the benefits system. It will come as no news to anyone when I report that it is miserly. Or that the applications processes are a bureaucratic shambles. Or that there's a very unpleasant amount of thinly veiled cynicism about whether or not one is really capable of working - an insinuation that one is lying and trying to cheat the system. It's demoralising and demeaning.

Financial insecurity is typically one of the biggest issues facing younger myeloma patients - and no doubt also all sorts of other diagnoses. I'm not sure I consider myself "lucky", but in this respect, I guess I have been.

Sunday, 16 September 2018

Epilogue six

I used to be a little boy, so old in my shoes. What I choose is my voice. What's a boy supposed to do?
Disarm - Smashing Pumpkins

Angry man syndrome

This blog has elicited a range of responses. Not so long ago, I was told it is "angry". How to respond to that?

There's a shouty little manikin inside me who could enthusiastically reply.
"ANGRY. WHY THE FUCK NOT?"

But... I think, that isn't really me. I'm not angry, for the simple reason that in order to be angry I'd need to feel something unfair had happened, and that would assume my situation is special, which it is not.

The papers are full, daily, of worse: of the extreme and shocking.

And anyway, half the world lives with no decent healthcare. If I were one of the rural Zimbabweans I lived among in 1991-92, then I'd be dead by now. I would probably never even have got a diagnosis, just a crescendo of pain which drove me to my bed until pneumonia finished me off. Indeed, many of the people I lived among then will be dead by now for sure, since life expectancy in Zimbabwe dipped to just 43 a decade ago. (It's nearer to 60, now, simply because a lot of the people with HIV have died.)

Closer to home, I've witnessed family and friends grapple with other illnesses, with bereavement, with executing their parents’ wills, with children’s special needs at school, with redundancy, with divorce…

So, it's not just me.

A decade ago I didn’t recognise those pains in other people. Myeloma has given me an emotional sensitivity I don’t think I had, made me less of a dick. I don't think I was a very empathetic friend, back then.

I've always cared deeply about human development and social justice - especially for Sub-Saharan Africa. But from a position of personal invincibility, my motives were charity for the less fortunate. Changing the world as an act of condescension.

What I have to offer now would be, I hope, more meaningful, even if smaller. The doorway to empathy is the one aspect of my experience of myeloma that I would not wish away.

Saturday, 15 September 2018

Epilogue five

Have you come here for forgiveness? Have you come to raise the dead? Have you come here to play Jesus to the lepers in your head?
One - U2

Body in a box

Gyles and I were recently discussing grisly deaths (as you do! Children make sure that conversation topics are varied and surprising. It's one of the - very many - ways they enliven the world). We'd got as far as being buried alive. I said that surely being trapped for hours/days knowing you were going to die would be the worst way to go. I'd rather a lot pain in the short term, than hours/days waiting.

And now that I've raised the subject, I'm guessing most of you would agree? Because, who cares how long you live, if you're miserable. What's quantity, without quality?

Seems straightforward.

That myeloma is a threat to quantity, is old news. And when the disease is bad, or the treatment is rough, it impacts quality too. What to do?

I've learned it is important not to act like a body in a box. One mustn't just lie there, waiting to die.

When the disease is in "remission" (or whatever name we wish to grace those periods with when the myeloma is not proliferating), then the quality - in the short term - is fine. Then I want to live rather than exist. To embrace today. To make it count.

And when it is not remitting, when it is out of control, or when the rigours of hospitals and drug regimes are beating down. Then, the quality is gone. But that's a short term experience too (every time until the last time). Then, I want to submit gracefully. To let the tide wash past.

I'm reminded of the prayer by Reinhold Niebuhr
"God, grant me the serenity to accept the things I cannot change, the courage to change the things I can, and the wisdom to know the difference."

I learned through bitter experience not to fight the worst of fatigue or infection, for it simply builds up until it is impossible to resist. Far better to recognise it earlier. Increasingly, I treat lows of mood and energy in much the same way - rolling with it, not resisting it. A better day will come. (In the mean time, there's always Netflix.)

I guess there's a danger that this mutates into permission to give up. But given the ridiculous quantity of imposter syndrome I still feel about my symptoms, and how suspicious I often am of my own motives, I think there's little danger of that.

Friday, 14 September 2018

Epilogue four

I’ve been feeling down. I’ve been looking round the town for somebody just like me, but the only ones I see are the dummies in the windows
Family Tree - Belle & Sebastian

Specific relativity

It is difficult to get an objective sense of one’s own experience. I often find, as I recover from a period of being unwell, that I surprise myself with how good "good" can be.
"I must have been really ill - worse than I thought", I declare, as the clouds scatter.

There is no objective measure. When the hospital give me (as they so often do) a form to fill in that asks me to rate my health from 1-10, or my pain, it is impossible to respond. I sometimes write "STUPID QUESTION" in frustrated scratchy caps across the page. I don't know if that helps.

The last 6 months have been dire. I can hear my inner 6 year old asking which was worse - this time, or the first time. (I think all children start life with a desire to rank and classify everything, don't they?) There's no answer to that. It was, well, different.

So, I'll still be moaning about my pain, for a good long time yet, and you'll have no reference point, I'm afraid, to ascertain how bad it really is. Only Marisa, who has to listen to me sleep, will really know.

What on earth to learn from this? Only that I have to interrogate myself when the clouds gather. Sometimes (often) it is easiest, and wisest, to submit: the storm passes so much quicker if one is not busy battling it. But equally, it’s worth keeping an eye out for some semblance of objectivity. If I define April 2018 as a 10 (or at least, a 9.5) of displeasure, then it somewhat helps put things in context.

Thursday, 13 September 2018

Epilogue three

You're taking the fun out of everything
There's no other way - Blur

Pain in the head

One’s body has three types of pain receptor (mechanical, thermal and chemical), but the pain itself is a construct of the mind. Acute pain serves a specific purpose, to act as a warning. Chronic pain (pain which goes on for months and doesn’t end), which doesn’t serve a useful purpose, is really a failure of the brain to reset, to accept things for how they are.

It is no surprise at all, when I look back at the most recent months of my life, to note that my mood tracks my physical experience pretty closely. It is hard to be upbeat, when one is in endless pain. Even last week, when I was suddenly feeling a bunch better, and making a series of plans, I was knocked back by one of my, not infrequent, bouts of acute rib pain. It was much harder to be upbeat the next morning, with my rib screaming. Mind is dependent on body.

I said to Marisa, some time ago, that I yearned for the day when I could do something as nonchalant as to flop down onto my bed. For a long time now my body has been so stiff, and sudden movements so (acutely) painful, that I have been forced to make every move a controlled, deliberate one. But just this week, for the first time in a long time, I achieved something approaching a flop. My whole body tingled for about 10 minutes afterwards, with the physical shock of what I had done. But there was no pain. It is no surprise then, that I am also finding more positive mood, a sense that there is light ahead of me. The physical and mental are entwined.

So… chronic pain is a big problem. Chronic pain brings almost inevitable loss of drive, and is highly correlated with depression, anxiety and sleep disturbance. Myeloma is painful, there’s no way around that, and some of that pain may even be “useful”. But the majority of it, especially the fact that it lingers so long, is not.

Having just finished six cycles of chemo, and with my light chain levels back where they were a long time ago, I’m keen to shake off the pain I’m in. I have experimented a few times recently with what happens if I stop taking my (opioid) pain meds. At the moment the results are mixed. It is not immediately painful, and that’s a big improvement on the last few months. But after a few hours I find the accumulation of aches creeping up on me, my body hunching over.

DrC was laughing to me, last week, as he wrote me a new painkiller prescription about the paperwork and procedures involved, because these are controlled drugs. He has classically illegible doctor’s handwriting and is fairly informal with his terminology. The pharmacy like to read the words “prolonged release...” in the description, and I have been sent back to get the prescription amended when it says “slow…” or “extended…” Plus we regularly disagree about how many pills I need, with him writing 60 while I say (for the umpteenth time)
“Write 56, it’s much easier”.
Finally, this week, we at least resolved the last of these issues.
“Why is 56 so important?”
“Because they come in boxes of 56. So if you prescribe 56 they just give me a box. Whereas if you prescribe 60, they have to make up a special little extra box for the last 4 tablets. It wastes about another 30 minutes.”
He seemed genuinely surprised by that. You would have thought it would get covered in medical school. There’s a reason for knowing your 7 times table.

Anyway, asides aside, he was laughing about the need for long hand prescription and whether this is assumed to act as some kind of disincentive to overprescribing. I responded with my anecdote about being given my opioid meds in hospital and the nurse standing over me until he has seen me swallow it, in case, I assume, I’m saving them up to give to a friend. But then, I say to DrC, I do understand what all the worry is about, with the alarming stories one reads of people becoming addicted to prescription opioid drugs.

He tells me, there is no evidence at all of addiction occurring among cancer patients. One consequence of all of the fear, he says, is that doctors – particularly GPs – often under-prescribe the dose of painkillers for the people who need them most. Far more important to have enough to ease the pain. Which is not to say these things are consequence free, even without worrying about getting hooked. I recognise a certain fuzziness of the head, when I’m on too much morphine. And I am so much enjoying being clean and sober now I’ve stopped taking my chemo for the time being. I do hope to be able to stop the painkillers too.

So, I will persevere with reducing my dose, and endeavour to reset my brain’s pain perceptions.

Maybe the broader lesson is one about recognising pain in other people. I know how hard I find it to smile, be upbeat, when I’m full of aches. Worth bearing in mind.

Wednesday, 12 September 2018

Epilogue two

It's four o'clock and all's not well in my private circle of hell
Through a Long and Sleepless Night - The Divine Comedy

Middle age spread

Myeloma typically interrupts jobs and careers. Being self employed, that was a little different for me. But it has had significant effect on my work none the less. Firstly it has caused long gaps when I have been unable to work at all. I haven’t worked since September last year, and I don’t think I’ll be ready for anything until somewhere in the spring, so this time round it has cost me 18 months. Secondly, maybe more importantly, it has made me think again about the work I want to do.

Our holiday this summer gave me plenty of time sitting on the terrace of a hotel, beside the beach, under a blue sky. It reminded me of so many places I have worked in the past; running training courses, or facilitating workshops. Those jobs I loved at the time, and I like to think I was pretty good at them too. But it is 10 years since that was the bread and butter of my work, and I cannot imagine going back to a time when that would be the core of what I did. In fact, I’m old enough to look at my career and see a progression of things I have done and moved on from. What matters more than anything is having a sense of where one is now, and where one is going. When I set up my business, I wrote on my website that “Yesterday is history… Largely irrelevant.” Partly, that was aimed at offending a few history grads, but it also expressed a truth. We have only today, and our hopes for tomorrow.

It’s not just work. Up until the point of starting a family, life’s goals seem obvious. Somewhere after all the nappies, once the children are at school and emerging as people in their own right, one faces the realisation that there’s still living to be done, but you’ve reached the edge of the map. It’s the stuff of midlife crises, I guess.

Our holiday resort this summer ran a regular series of cycling events, in order to attract a specific demographic of holidaymakers. As a result there were quite a few MAMILs (middle aged men in lycra) around. I don’t think I’d have been in any danger of becoming one of those, even without myeloma, and it would be easy to mock the tendency to overdevelop hobbies. But I do recognise that it is one way people find of resolving the riddle.

I don’t have a solution to offer. I’m working on it for myself. But certainly not going to pretend I have achieved any kind of life-guru enlightenment where I think I have anything much to tell anyone else about how to grow old, if not gracefully, then at least interestingly.

What I can say though, is that I’ve learned that it’s no good blaming everything that befalls me, in particular the search for meaning, on my myeloma. It is a thing, admittedly a big thing, but still just one thing, in my life. Many of the questions I find myself facing, would have been asked of me anyway. To credit any disease with complete influence over one’s life would be to give it far too much power. It helps, often, to remember that, and put the cancer in its place.