Janus *

Look at my hopes, look at my dreams
Rent – Pet Shop Boys

The rest of my 100 days passed uneventfully. More focus on family and the kids than on me, which is progress in itself. And we had a happy Christmas and a peaceful new year (as, I hope, did you.)

Here endeth the good news.

Sadly my light chain levels are not what anyone might have hoped. They were 200 in November, 250 in December, only a little lower than before the transplant. It’s certainly not remission. My consultant calls it “stable”, but she is just being polite. It is not stable. It’s no better than where we were a year ago. This news triggers a number of quite intense feelings, with which I’ve grappled over the festive period. Disappointment. Trepidation. Frustration.
(1) All that, for this? The shitting and puking seemed more worthwhile when I imagined we were achieving something.
(2) I don’t relish the next line of treatment. I’ve been promised my next regime will be not dissimilar to the one that caused me platelet problems last year (pomalidomide instead of lenalidomide, plus cyclo and dex). And I can take it continuously until it stops working. So that’s something to look forward to.
But most of all, (3) is the endless perpetual unknowing. Remission would have at least promised a measurable, meaningful period of time when I could be confident I’d be treatment free. Now I don’t know if I’ll need to restart next year, or next month. I’m in the same interminable situation I have been in for ages. The transplant really hasn’t achieved anything.
All of that has been tough to face up to.

I had another BoMB, as inconclusive as ever. Not least because it was obvious that it wasn’t the first time they’d dug a hole in that location. Pepper pot pelvis, the consultant calls it, cheerily, and suggests they try the other side next time. I don’t anticipate it will be any more productive, as I’m just as battle scarred the other side too. I’m not brave enough to tell them I refuse to have any more biopsies – the doctors want, and deserve, all the information they can get. But the outcome is always unreliable, so it’s pain for no gain. How many more times is it worth bothering? (I once read that if it’s not possible to biopsy the sacrum, sometimes people have biopsies in their sternum instead… I’m trying to forget I read it. I really really don’t want to go there, but I won’t be surprised if I have to.)

I’m booked in for another whole body MRI to see if there’s been more bone damage in the last 6 months. If there is any sign at all, I think I’ll be straight back on the chemo. If not, we’ll wait a bit, though it is slightly like Russian roulette, in that by waiting we merely increase the likelihood that more bone damage will happen. My consultant says we should be “on the front foot”, given that (irreversible) bone damage is my main symptom – i.e. treat sooner, rather than later to try to minimise the incremental deterioration. She also says that, given recent experience, we should be looking for “a new approach”, as evidence suggests traditional regimes (imids / proteasome inhibitors / auto-sct) only work, at best, briefly. I’m not sure what all the possible new approaches are, though CAR-T is clearly the front-runner.

In the mean time, I have taken possession of my new spinal brace. It certainly helps in specific situations – when I need to stand around for any length of time, or when I need to sit in crappy chairs (of which the world is surprisingly full, let me tell you). It doesn’t make any problems go away, but it makes them more bearable. It’s a bit like wearing a corset. Though for the sake of my manliness I’m referring to it, instead, as my stab-vest.

I’ve had lots of people tell me, lately, how well I look. Which is nice. Really. Thank you. I feel a bit of a shit not responding very enthusiastically. But it’s complicated. And I know what I’m dealing with. Looks can be deceiving. I know everyone wants a happy ending. But it’s not that kind of story.

We’re a long way through the looking glass by now. Front line treatment, all those years ago, was about recovering and reclaiming normality. And for a while, I did. 2 years ago the hope was that we could repeat the trick. But it hasn’t worked out like that. The consultant describes my situation as “a concern”. I can see by the looks on the medics’ faces that I’m in a different position; different prognosis, frankly. I’m not saying my time is up – we’ll probably get on to the long discussed CAR-T therapy at some point, and any outcome is possible (including, potentially, cure). But I’m no longer imagining a return to the years of worry-free(ish) remission. Future years are likely, at best, to be a mix of what I’ve gone through in the last 3: a good one, a bad one, a mixed one…

A form arrives from the DWP, to assess my fitness to work. As I give it to the doctor, the residual voice in my head that still tells me I’m exaggerating my predicament makes me attempt to justify myself:
“I would work if I could, but I never know what’s coming”.
Sometimes, one can understand more by people‘s expressions than by what they actually say. The look on her face tells me I was deluded to even be worrying about work. She says something about quality of life. The subtext is about quantity though, as much as quality. She signs me off as unable to work, and unlikely to be able to work in the future.

This week, with Marisa back at work and the kids at school, the house is very empty. I know in my head that I need to be creating a schedule that works for this me. It’s easy enough, in principle, to draft:

Mondays – community centre trustee stuff
Tuesdays – go swimming
Wednesdays – write my book
Thursdays – a.n.other local charity project tbc
Fridays – go to an exhibition

It doesn’t sound too bad, does it? Except it is a schedule based on keeping myself occupied, rather than being productive. And all around me everyone I know is doing what people in their 40s do: knuckling down to pay the mortgage and feed the kids. How often, in the past, I might have dreamt of escaping from the grind. Now, faced with it through no choice of my own, I’m really struggling with motivation. Arguably the greatest challenge I face, right now, is to answer another of the voices in my head, the one that asks me:
“Why bother?”

I’d pep this all up a bit for you. Sweeten the pill. Soften the blow. Make it a little more fun to read. Except, however ugly and unwelcome, it’s the truth.

* Janus: the Roman god of…
     beginnings;
     gates;
     transitions;
     time;
     duality;
     doorways;
     passages; and
     endings.
I’m not sure where I am, but I think Janus covers all the possibilities.

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Recuperation

We’ve got to hold on to what we’ve got
Living on a prayer – Bon Jovi *

Day +50ish

It’s been a while since I sat at my desk. I have decided that, as of this week, some element of normality must return. So I’ve turned on the pc, and just waded through several months of unopened email. Nearly 1,000 messages. (Why does junk mail come in waves? A lot of spam about nail fungus.) So, while I’m here, an update for you.
I’m doing ok. I’m very bored, but that’s a minor complaint really. My blood counts are alright – could do with a bit more red in my blood; hopefully that will come with time. But I’ve avoided any nasty infections (so far). And I’m regaining strength, though it comes slowly. Overall, I think my recovery has been easier this time than last, which is a pleasant surprise. Will be nice when my hair starts growing again, and I’m looking forward to having some actual energy.
My relationship with this blog is a bit conflicted at the moment. I know it serves a purpose, but I prefer, mostly, to face the other way. I have a stash of topics that, at some point, I will write up. On the transplant process. On medicine that makes you feel ill. On pain. On mortality. I’m not sure when I’ll feel sufficient enthusiasm to commit these to binary. For many of you, though, who only check in here to see how I’m doing… don’t expect too frequent updates. I’m 50 days in to a 100 day recovery programme. I’ve no evidence yet of how well (if!) it has all worked. I’m intending to progressively return to “normal”, and see how it goes.
One ongoing issue worth a mention, is my poor old back. I’m posting a recent MRI image of my spine. You can see just how many of my vertebrae are crushed, and how curved it is as a consequence. It has definitely got worse, these last 2 years, which is a little scary. What will happen next time I relapse? I’ve been told that I should expect that the damage is progressive – i.e. it will continue to deteriorate. I find this quite difficult to face up to (I find the picture hard to look at). No matter what treatment I endure and what remission I achieve, I’m left with this creeping disability. Even if they “cured” me, I’d live forever with this. I’ve recently been in front of the neurologist and an orthotics doctor. We discussed every possibility – from surgery to doing nothing. There aren’t any great answers. Surgery really isn’t a credible option: it’s quite likely that, were we to fix part of my back up (by injecting cement to rebuild vertebrae, or by adding some metalwork), all that would happen is it would fail (break) at the weakest point. I’d be worse off after that. I am fearful enough of ending up in a wheelchair, without doing something that might accelerate the problem.
But otherwise, I’m on to a loser. My back lacks the strength to hold itself upright, and even a small amount of curve means the weight of my head (heads are quite heavy) is pulling the whole thing forward. It was comforting to hear the doctor acknowledge what I already know: that standing still is worse than walking; that I need to spend quite a lot of time lying flat on my back if I want to maintain any kind of posture; that it’s unlikely my back will ever be free from pain. Our plan for now is that I am to be fitted with a brace, and see if/ how that might help. The risk is that using a brace leads to loss of muscle tone, making me increasingly dependent on wearing it. But I’m hoping if I moderate how often I put it on, I might be able to mitigate that. It’s got to be worth a try.
I didn’t understand, when I got my myeloma diagnosis, that disability was part of the prognosis. But I know now that similar problems affect lots of people with mm. It really is a bastard.

* This choice of lyric is somewhat deceptive. The song came in to my head for the more obvious reason that 50 is ½ of 100.(Woah, we’re half way there!) I’m pretty sure I used the same bit of Bon Jovi, 15 years ago, when writing about crossing the equator, while travelling overland (mostly by bus) from Antarctica to the Arctic. If you’re paying that much attention, I salute you. I liked Bon Jovi when I was a teenager, but only really because I liked a girl who liked Bon Jovi. (She’ll probably read this.)

I like a bit of lateral-ness in music trivia. If anyone ever asked me to write trivia quiz questions (if they’ve any sense they won’t), then one of them would be the names of songs that do not feature on the eponymous album. Some classic examples are “Houses of the Holy” by Led Zeppelin (song ended off on the subsequent album, Physical Graffiti), “Waiting for the Sun” by The Doors (ended off 2 albums later, on Morrison Hotel) and “Sheer Heart Attack” by Queen (3 albums later, on News of the World). There’s a few good examples from 90s indie: “Bring it On” by Gomez  was on their 2nd album, Liquid Skin. Meanwhile “His’n’Hers” by Pulp, “Screamadelica” by Primal Scream, and “Going Blank Again” by Ride, were all only released on EPs or as b-sides.  Are you with me? Too obscure? If you know any more, show off in the comments!

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Release

I’ve got to stand and fight
Release the pressure – Leftfield

I’m out!

I was so surprised, on Thursday, when the doctor suggested I might be ready to go home, that I had to ask twice what my blood counts were. I thought I’d got at least another four or five days to wait to get to the magic Neutros > 0.5 threshold. But by Thursday, I had already passed it. So, on Friday afternoon, they discharged me.

Obviously, I’m delighted, though still a little nervous that fever might yet drag me back inside. But let’s not dwell on the fears, and just be grateful for a pretty smooth transplant experience.

I’m at home. It will take a bit of time to work out exactly my recuperation trajectory. But my own bed, home cooked food… all good. Even being able to have a proper shower, now they’ve taken my PICC line out… I’m happy. And, of course, being with my family.

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Alone

Faces look ugly when you’re alone
People are strange – The Doors

Isolated. Neutropenic. Enduring

While I feel good enough to write, here’s an update. I’ve been in “protective isolation” for 3 days now. The upside is that I’ve already seen 3 World Cup rugby matches. They tend to wake me a little before 6 to do blood tests and the games (because of the time difference between London and Japan) are all between 5am and 1pm. Perfect. Telly is about the extent of my ambition. I even enjoyed an episode of Top of the Pops from 1988, on some random channel-hop (and indulged my inner nerd by watching the proroguement case from the Supreme Court).

The downsides are best glossed over: a lot of nausea, a very fluid relationship with the bathroom, a temperature  spike…

But I knew before I got here what this part of the process entails. The aim is simply to be alive at the end, and rely on the fact that horror dims in the memory. Prior experience is proving unhelpful – I have another perspective, when maybe less awareness would be better. At one point, sitting on the toilet, my brain volunteered that, at the current rate, I could have 1,000 toilet trips, before they let me out. That thought didn’t make anything better. (Things have calmed down since… maybe I’ll only sit on the throne 200 times!) So, I’m trying hard not to overthink. Just to let the time pass.

My neutrophils are at zero, so the next milestone will be when there’s any evidence of them returning. That will be “engraftment”, and indicate that I am beginning to recover. That’s probably a few days away yet, but hopefully not as much as a week.

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The point of no return

Fight like a brave. Don’t be a slave. No one can tell you you’ve got to be afraid
Fight like a brave – Red Hot Chili Peppers

Day +1 … and into the twilight zone …

I had my melphalan on Wednesday. I was glad to get beyond the point of no return. Until the melphalan was actually going in, I half expected the whole thing to get cancelled again. I’m pleased to report that, as promised by the pharmacist, the anti-vom meds are indeed much improved on last time (specifically: Aprepitant), and I haven’t been sick once. A little part of me thinks it can’t possibly be working because it isn’t bad enough (chemo-heads reading this will understand). But I’m sure I’ll be disabused of that idea, soon enough.

When I harvested stem cells back in 2013, we got three times as many as we needed. Two thirds of them have been in the freezer ever since. However, my doctors aren’t confident of the viability of cells that have been stored that long, and so we did another harvest last year. This time, no matter how much cajoling and pumping with expensive drugs, I barely produced enough for a single transplant (my bone marrow is a bit knackered). The decision was taken to use a portion of old cells, plus all the new ones. So many cells, in fact, that they divided the transplant over two days. So that gave me something to do on Thursday and Friday!

Oddly, then, some of the oldest cells in my body right now are also the newest.

Here’s my cells (looking suspiciously like a side of smoked salmon), coming out of the deep freeze. Then they get a precise few minutes in a 37.5C bath, before being dripped back in to me. All over surprisingly quickly. In total we transplanted nine bags of the fellas.

So far, I’m feeling really much better than I had anticipated. And being at home, instead of sleeping in the hospital, is much better, for mind and body. But the trajectory, and the plan, is unchanged:. By the middle of the week I’ll be without immunity, feeling crappy, and in protective isolation. This strange twilight will not last. Better to focus now on the middle distance: each day now is one closer to feeling better, even if I’ve got to go downhill now, before I can start going back up.

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Plumbcentre

I got two strong arms. Blessings of Babylon. Time to carry on
The Riddle – Nik Kershaw *

Day -2

I had a “PICC line” (catheter inserted via a vein) 7 years ago for my front line chemo. But in those days King’s insisted on a “Hickman line” (port inserted directly into the jugular) for transplant. Medicine progresses. Today I need only a PICC for the transplant, which is a lot less unpleasant (a hole in the upper arm, rather than one each in the chest and neck). Even the PICC insertion procedure itself is improved, since the location of the tip of the catheter is now monitored with ultrasound, instead of x-ray, making the process quicker and meaning it doesn’t have to take place in theatre.

I had a weird experience during today’s insertion when I could suddenly hear a whooshing sound in my ear and a sensation like water was coming out of my ear hole. Apparently, this is what happens if the tip of the PICC is close to the jugular. It was a surprise to me, but not to the medics. Once the PICC was fully inserted, it stopped.

Hurrah for medical advances. I’m glad to be getting today’s medical technology. Stem cell transplants have only been around for c.40 years. Before then, it wasn’t possible to take stem cells from, and return them to, the blood. The preceding procedure was a bone marrow transplant, where the cells were taken from and returned to, the bone marrow itself. I can’t imagine bone marrow transplant would be much fun. Comparatively, stem cell transplant is a breeze.

So, plumbing now in place. One obvious improvement to human beings would be if we came with a port already built in. So that’s something I might ask God for, for Christmas.

The countdown: Tomorrow = “day -1” = chemo. I just referred to it, speaking to a myeloma friend, as “poisoning”. He suggested “cleansing” as an alternative description. I’ll go with that. The pharmacist tells me the anti-nausea meds have improved since my last transplant. So maybe tomorrow, too, will be easier than my memory tells me? After all these delays, I won’t quite believe it’s happening until the chemo goes in. My nurse compared it to sitting on a plane waiting to take off. Not a bad analogy – there’s always the possibility for delay or cancellation, until the moment the wheels leave the ground.

* I used a lyric from “Knock three times” for this post, but then I realised I’d used it before. And that will never do. So, I’ve edited, with an alternative. Not that Nik Kershaw should be a stand-in for anyone else. I loved this album in 1985 …

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Lviving

There are no lions in England
Lions – Ian Brown

… Stop Press … Transplant next week !!! …

I had another biopsy a couple of weeks ago. (I’ve lost count of how many that is now. 8? 9?) The good news is it was much better than before: a mere 10% plasma, as opposed to 80% a few months ago. (Normal is <5%.) Either things have improved dramatically, or the previous result was an outlier, or a bit of both. The somewhat perverse consequence, though, is I’ve been told I should proceed urgently to transplant.

Next week!

This brings dialm full circle. It is not easy to see where myeloma begins or ends;  with ups and downs often only definable in hindsight. And I deliberately masked some of that in the blog, by reconstructing a diary stretching back long before I knew I had anything to record. But there are precise dates, within the blur. One of those was that I first posted this blog the week before my last transplant – 6½ years ago. Not being a “noob” (as my sons would put it) means I have a fairly good understanding of what to expect, second time around. Lucky me! The running order is I’ll have melphalan (poison) on Wednesday 11th; stem cells (salvation) on Thursday 12th; puking and shitting on those days and subsequently. Hopefully, I can spend the nights at home until the beginning of the following week. After that its the isolation room for 2 or 3 weeks. And then a couple of months slowly getting back on my feet. I’ll keep the updates reasonably regular on here.

This new plan came as something of a surprise. Perennial uncertainty is one of the hardest symptoms of all, and its impact is quite difficult to convey, even to those who know me best and love me most. Can anyone, who doesn’t live it, really appreciate quite what its like, never knowing what the next week holds? Less than two months ago, the outlook seemed very different. Our summer was just a question mark. I wrote on dialm:
“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.”

I’m amused, I guess, to have been proved right. And thankful that we decided to ignore the medics’ caution. We made the call that there might not be a better time than the present.

First up we rescheduled the weekend break that had to be abandoned earlier in the year (when an absence of platelets stopped me flying). People who don’t know me well will wonder why I was so keen to visit Lviv in Ukraine. Those who know me better won’t be at all surprised. I’ve wanted to go there for a long time, having read ages ago about its well preserved old town. It’s one of those places with tortuous history – it has at various times been the 2nd/ 3rd/ 4th biggest city in Ukraine/ Poland/ Austria/ Sweden … and so on. Until last year it was tricky to get to, but now there are direct flights. It’s not an expensive place to be, so we booked ourselves a suite at the Grand Hotel, and spent a weekend wandering the lanes, stopping for coffee, cocktails and food.

While sitting outside a Lvivian cafe, we got a guidebook out, and put together a really rather crazy plan. The week before, we had been puzzling over exactly where to go this summer, now we’d decided we would travel, regardless of the doctors.
“It’s the right time of year to go to Namibia”, said Marisa.
“As if we could possibly get a flight, at this short notice”, I replied, flicking open an app on my phone to prove my point.
Much to my surprise, flights were available, for a price. And so we spent the next few days working out an itinerary. Three weeks later, we were there. Namibia has been “on the list” for a very long time, but a bit of forced spontaneity added to the thrill.

It turned out to be an amazing trip. Thousands of miles of dirt roads, beautiful scenery, stunning wildlife, great food and accommodation. Even when you’ve travelled a lot, you can still find places that are new and wonderful. We were mulling it all over, trying to compare it to some of the best trips we’ve ever taken, and best places we’ve ever been. It’s right up there. And to top it all, it was hugely reminiscent of Zimbabwe, which was lovely for me (if not a little trying for everyone else!).

We have a map of the world on the dining room wall. Each time the kids go somewhere new, they stick another pin in the map. I don’t want to collect passport stamps for the sake of it, but nine times out of ten I’d rather go somewhere new than revisit somewhere I’ve already been. Having myeloma has, if anything, added a little urgency.

I’m not unaware (or ungrateful) of the privilege in my life. I had access to an excellent education. I am supported by a world class medical system. I have some money. I have a passport that enables me to travel where I please… Living with myeloma has maybe made me less reticent about letting it show – anyone who wants to be envious of me can go right ahead. I hope I’ve (mostly) made the best of what was available to me – I’ve worked hard (after a bit of slacking when I started university), and Marisa and I have been adventurous – taking career breaks to travel, using our holidays to go to unusual places, and trying to give our children some experience of the world’s diversity. Travel and work have always been two things that sustained me. One of the biggest impacts. for me, of illness and uncertainty, is when it stops me making travel plans, or hinders my ability to work. Which it does, a lot.

I was talking to a friend, in the park, a couple of months ago. I asked about her summer plans. She asked about mine. I explained I hadn’t any, and why. She said she was sorry to hear that. A couple of weeks later, we were talking again, only this time I had just booked flights to Windhoek. It’s difficult, when things change so suddenly, not to feel a fraud. I relayed this anecdote to my counsellor *.

“I know my friends don’t think I’m making it all up, but I do feel like I’m being melodramatic.”
“But it is a melodrama, Alex. That’s the reality.”
Yes, it is. We really did go from nothing to Namibia in less than 3 weeks. That is the bald truth. I’m lucky to get to go at all, of course. But that doesn’t negate the challenges of living with myeloma.

And I really did just scope out and plan for a sizeable work project, only to have to send my client an email today, giving my apologies that I won’t even be able to start it. A clear demonstration of the futility of planning. I’ve avoided making big commitments for so long, and when I feel it might be safe to do so, I get knocked back. It’s incredibly frustrating.

So, I’m not looking forward to the transplant, and I can think of a hundred other things I’d rather be doing… but if it releases me, even for just a short time, from the unpredictability, I’ll be happy. Let’s say, on balance, that I’m ambivalent about it all. That would seem the most fitting response. One thing I will take away from the last 2 years is a greater understanding that living for now means having the confidence to take a risk, and not worry too much about the consequences. I’ve certainly learned something about living in the moment. We spent the last week of the holidays in Sussex, and packing up around the house – the garden littered with bikes, cricket bats, footballs, paddling pool, hammocks, deck chairs, a kayak – I was able to literally count our blessings. Today the new school year starts, Gyles has changed schools, and Lyndon moves up to the junior playground. He is exactly where Ben was, 6½ years ago – which is progress I wasn’t even sure I’d witness.

Yes, on balance, the puking and shitting that lies ahead will be, in the end, well worth it.

“Lviv” is Ukrainian for lion. But we didn’t see any lions in Namibia (or Ukraine). I have told the kids this is a good thing: gives them a reason one day to go to Africa again. We were privileged enough to see almost everything else, including wild leopards, and both species of rhinoceros. Lviv while you can, people. Take the opportunities as they come. Tomorrow, who knows.

* For a long time, I only ever had counselling occasionally, when things were really bad. After the depths of last year, I decided it would be wiser to incorporate counselling as a regular part of my treatment – through good as well as bad. Even when things are good, I find unpacking it and talking about it helps me to gain better perspective. At times like now, I’m almost euphoric, because I am aware that I’m managing to live. I guess my counsellor has seen it all before, but I feel almost bipolar, reflecting back on conversations she and I had, less than 6 months ago, when I was needing transfusions several times a week.

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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.

<short>
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.
</short>

<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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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).

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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.

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