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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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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Live more

I’m on a different kind of high. A rush of blood is not enough. I need my feelings set on fire
I dare you – The xx

You know the rules round here. DialM is about mm, with the rest of me sort of squeezing through uninvited. Usually in the form of music and travel. Because that’s who I am… (oh, and KFLC = 421)

I went to Brixton Academy last week, to see The xx in concert. It was only once I was there that I recalled I had seen them, in the same place, sometime a little over 4 years ago. I know last time round I had to simply stand rigid through the pain until eventually my back went numb. Maybe the morphine had dulled my senses back then, because the gig seemed so much richer and more alive this time round. Echoey guitar; deep rhythmic bass; haunting vocals. Splendid. I love concerts – not least the feeling of having no regard to being the wrong side of 40 (though I take my hat off to the 2 friends who went Sunday afternoon clubbing last weekend. I’m not sure I’d be up for that even if I didn’t have children as an excuse.)

In 2 weeks, Marisa and I are taking the kids to Japan (新幹線温泉寿司). There’s a sense of urgency for us about making adventures, which is definitely a consequence of myeloma. It’s 18 months since we were planning our time in Central America, which really did feel like a snatched opportunity. And yet… time passes and I don’t have a real sense of how long the good times will last, any more. But the longer they do, the more trips we’ll pack in, no doubt, unless something else stops us. Myeloma has made me live more, now, than I suspect I would have otherwise.

Live more, myeloma less. Or something like that.

Having bunked my last hospital appointment, because I was on a business trip (New York, Toronto, Bogota and Mexico City), I had to book this week’s appointment on the phone. The receptionist would only put me in for the end of the Wednesday clinic, which meant 2 hours sitting waiting, and a different doctor. I have to smile my sweetest to get put back on Friday’s appointment list for next time. Friday’s clinic is only for clinical trial patients, a category into which I do fit, technically. But more importantly, if I turn up early on Friday mornings, I’m spared the endless wait.

My light chains are up, but only a little, within the range where variation in results makes the difference insignificant. The κ/λ ratio is pretty much unchanged. All of which suggests nothing much is happening. The κ/λ has moved in a couple of jumps, doubling abruptly in July 2015, and then again in April last year. But since then it has risen only 50%, and been static now for several months. The myeloma is unquestionably there. And unquestionably returning. But beyond that? Pfff. The doctor is happy enough not to see me for another 10 weeks.

We do have a discussion about treatment options. She mentions bortezomib again, possibly in conjunction with a clinical trial drug (venetoclax? – which I hadn’t previous heard of), before another stem cell transplant. (I guess it depends on how long I hold off treatment, as all these trials have recruitment windows. But if not this one, there’ll be another, no doubt.) And after that I’d still be “naive” (her word) to so many drugs – thalidomide and lenalidomide being obvious ones. Which means I’ve potentially 3 lines of what are, by current standards, very conventional treatments, ahead of me. And that could take a number of years to work my way through.

The UK myeloma group on fb, of which I am one of a group of admins, has had a punishing few months. Relapses. Horrid experiences. Deaths. Partly that’s the toll of winter, and many of the patients are older than me (not that this makes things any better, just maybe less relevant to my prognosis). Some of the stories are shocking. Vicious, callous and abrupt. And being young is no guarantee of a better outlook. I am profoundly grateful, and humbled, by my own relatively benign experience of myeloma, and the massive amount of disease free time I have been blessed with.

Myeloma’s horizon seems to be receding, for now, for me. Though it continues to menace. And when it does return it could do so abruptly, I’m under no illusion about that. In the mean time:

今を生きる
後で骨髄腫

Relatively normal

Oh my goodness, how long has it been since I properly wrote anything here? Those of you who are distant strangers may well have feared that I was no longer around. I am! I am still very much around and in remarkably good shape.

I’m one of the lucky ones. Yes, my auto transplant failed very quickly, but since my allo transplant, I’ve had really very few issues. I’ve had very few infections or hospital admissions and certainly nothing too serious. I’ve had some Graft versus Host Disease [GvHD], but it has been only mild to moderate. (Makes it sound like the shipping bulletin.) Nothing life-threatening. And these days it’s all stable and very mild.

I’ve been discharged from Respiratory clinic, now that I’ve passed the milestone of the first two years post-transplant – the peak risk period for lung GvHD. My lungs, while not recovering any function, have not lost any either. In fact they have remained stable since I started treatment. I was sad to say goodbye to the lovely Dr Fogarty.

I still have regular ECP [extracorporeal photopheresis] treatment to keep stable or maybe even further improve the minimal GvHD (lung, scleroderma, mouth, vagina) I have now. The ECP treatments are now only every eight weeks and may well decrease in frequency after my next GvHD clinic appointment. I still attend Transplant clinic, but that is also around 8-12 weekly. It’s all a lot less prominent in my diary and in my life, thus the vagueness.

With my discharge from Respiratory monitoring, I was also able to stop taking Azithromycin and a Becotide (steroid) inhaler. I still take a good old handful of tablets – Aciclovir, Penicillin, Imatinib, Omeprazole and Prednisolone, but this latter is now down to only 4mg a day and I’m on track to reduce it by 1mg each month. So hopefully by November, I won’t be taking any steroids. I also take a supplement of Glucosamine Sulphate and Chondroitin; I went through a period of leg, hand and foot cramps and joint pains, which have fortunately stopped since taking the supplement. I’m hoping to stop taking them soon too.

Strangely, as my clinical needs diminish, attending appointments has changed from being a regular and quite enjoyable part of my weekly/monthly routine to more of an inconvenience or chore, something that gets in the way of the other things I was doing, whereas previously, they WERE the things I was doing. I never thought I’d get to feel like that and I’m not sure I like it. It’s the normalising of my life, which many people would hugely welcome, that I actually find tricky to manage psychologically. I had a role as a patient; I’m not really sure of my purpose now.

Don’t get me wrong… As those of you who know me in real life, or on Facebook, will be aware, I do a lot – volunteering, Playback Theatre, networking, painting and other creative arts, training and workshops, knitting, socialising, travelling. People frequently advise me to slow down and take it easy. But that’s not me, that’s not what I’m drawn to do. I still want to make an impact on the world; make a difference; be creative; see, do and be as much as I can; make the most of my life.

Finding a balance between those desires and the need to relax, rest and ground myself has always been difficult for me. Maybe that’s why ‘returning to normal’ feels so hard, because now I also return to my ‘normal’ (pre-cancer) way of being in the world and have to manage myself in a way that I haven’t needed to do while I was really ill or recovering from treatment. For most of the past four years, I have managed – I know not how – to find a very zen-like state of acceptance without really trying. An acceptance not just of having cancer and facing death, but also of myself, my purpose, the meaning (or lack thereof) of life and the world around me. For most of that time, I was relatively free of anxiety.

I am certain that will sound very bizarre to anyone who has not been in this situation, and maybe for some who have been in a similar place but have reacted differently to me, it may be hard to comprehend. But there you have it! That’s my truth.

And now… In so many ways, I’m ‘back to normal’…

And yet, it’s not quite the same. I can forget to some degree and much of the time what I’ve been through and that the myeloma will likely return. It is still deemed incurable after all. And I don’t spend much mental energy thinking about it, but it is still there. An ever-present fine haze over my life.

But it’s when I do forget that I get caught up again in the day-to-day anxieties of ‘normal’ life; I lose a sense of meaning and purpose in my life. So the haze is really not a bad thing; in fact I appreciate its presence. I appreciate being able to hold on to that potential relapse as a reminder to keep making my life count, to make it mine, to make it worthwhile, to make it something I can look back on and be pleased with how I spent my time, to be able to die knowing I have no regrets.

Phoebe Snow, singing a beautiful version of the Billie Holliday song, ‘No Regrets’. Phoebe Snow died in April 2011, not long after my diagnosis. I hope she died with no regrets either.


Slowloaded

We want to be free. We want to be free to do what we want to do. And we want to get loaded. And we want to have a good time
Loaded – Primal Scream (feat. Peter Fonda)

Checkup… KFLC=69…

Summer en Sussex. I spent a lot more time with the children than I did working, apart from two trips to New York. It was very good. We braved the sea. We visited local fairs and festivals. We ate a lot of pub lunches. We walked some truly beautiful woodland and countryside. East Sussex is a gem. We are so lucky to have a piece of it. Only when the blue skies turned to grey did we head back to London.

Now autumn is coming, I’m overseeing the building work on the house. It will, eventually, be amazing. I get to have some very Grand Designs conversations with glass suppliers and kitchen designers. And standing on our roof, surrounded by scaffolding and power tools is exhilarating – as is the steel frame in the garden, which currently resembles some kind of industrial homage to a minor Greek temple. In the short term though, it is quite messy, and occasionally stressful.

It’s not exactly a routine, but maybe I’m destined never to have a routine any more. It is only natural to crave routine, though I suspect life is actually more fun without one.

I don’t go to myelomaville much, right now. I’d like to say I never visit, but that would be a lie. I still go online and read stuff. Maybe I should stop? But occasionally, I stumble across something pertinent. Recently I read something which shed a little light on a contradiction that has puzzled me for some time. The conundrum is this: cytogenetic tests classify my myeloma as high risk (del17p). Simultaneously, my beta-2 microglobulin levels classify it as low risk. What does that mean? I now understand a little better (if you are interested…)

The specific high risk chromosome damage in my myeloma’s DNA means it is missing the gene (TP53) for a protein that provides an error-checking function in cell division (when it finds errors it triggers the cell to die). DNA replication is complex and prone to errors. Cells with faulty DNA are liable to go rogue (be cancerous). Over time, cancer cell colonies get more mutations and so become more problematic. With the error-checker out of action, each replication is more risky. My myeloma dice are more loaded than average.

Meanwhile, beta-2 microglobulin indicates for speed of replication. My low levels show my myeloma grows slowly (right now). My dice may be loaded, but they get thrown relatively infrequently. So I really am simultaneously at high and low risk. I may, with luck, get very long remissions. When I relapse, it probably won’t be very pleasantly (but then, we kind of knew that much already).

This month’s light chain score is up to 69. That is higher than for most of the last year, but still within the parameters of meaninglessness. So we will continue to monitor it, as we must always do. Rational-Alex understands that. Emotional-Alex finds it a little more tricky. Fortunately I am, on balance, quite a rational person. Though I worry that I’m gradually suppressing Emotional-Alex, and I don’t know if that changes who I am.

I wait 4 days between having my blood taken and getting the test result. Tick tock. Some people describe feeling quite anxious in the days before clinic. I can usually ignore it… But then I have to sit with the doctor and answer all the questions. Have I had any fever? Am I losing my sense of touch? Am I in pain? Are my bowels ok? Am I coping mentally? No/no/no/yes/ and “I guess so”. Much of the rest of the time, I am a happy, grounded, person. But at these moments I yearn, viscerally, to be free.

Amnaesia

I rue the day that I ever met you, and deeply regret you getting close to me. I cannot wait to deeply neglect you, deeply forget you.
Poems – Tricky

About bloody time

Last weekend was spent with dear friends. On Saturday afternoon one of them received a text message wishing them a happy wedding anniversary. It came as a mild surprise to them, as they had both completely forgotten! We all agreed that if you are going to forget your wedding anniversary, much best to do so together. Not normally so good if you do it alone.

Some things are best remembered, others are best forgotten.

I read an email today of a post from a friend’s myeloma blog. (The post, coincidentally, is dated yesterday). She begins
“Five years ago today our life was totally transformed. I clearly remember sitting in the Consultant’s room… with him telling me…”
I don’t think any more of it, until an hour later when I am walking down the street, and it occurs to me that the (2nd) anniversary of my myeloma diagnosis is approaching too. When was the fateful phone call, I wonder?

And then it strikes me. It was July 17th. Yesterday. Yesterday I was busy flying home from New York. Yesterday I was busy writing something for a client. Yesterday I was talking with builders and architects. Yesterday I was out for pizza with my children. Yesterday, I forgot.

Oh rapture. I can’t tell you how good I feel.

FWP 3.2

The peddler now speaks to the countess who’s pretending to care for him, saying “Name me somebody that’s not a parasite and I’ll go out and say a prayer for him”
Visions of Johanna – Bob Dylan

It requires distance, sometimes, to see things in perspective.

I was on Bohol in the Philippines when I heard about the Rutland Earthquake – magnitude 3.2 no less *.
“I thought the house was falling down”, one local woman was quoted saying. Though others were less melodramatic. I particularly liked the use of column inches to tell us all that
“my electric toothbrush fell from the shelf into my sink”.
It made a stark contrast for me since Bohol is recovering from a magnitude 7.2 quake in October (which was just three weeks before the neighbouring island of Leyte was decimated by Typhoon Haiyan). The Bohol quake killed more than 200 people, injured 1,000 and destroyed 15,000 buildings. Damage is visible everywhere. Most of the roads are still being repaired and there are many areas where buildings are sealed off as unsafe.

We had just visited the town of Loboc, where the 500 year old Spanish colonial church was largely distroyed. (A similar fate tragically befell many of Bohol’s historic churches.)

Rutland was, so transparently, a First World Problem #fwp.

In the Philippines, my myeloma too seemed largely an FWP – in contrast to the challenges faced by slum dwellers in Manila. Of course, if I were a slum dweller in Manila, my myeloma would be a very real problem for my family, as it would have killed me by now, and left them destitute. Still, blissfully ungrateful for my “good fortune” at being ill in the right place, I managed to avoid thinking about myeloma much. In a whole month, the mist of fatalism only descended on me once, briefly, and even then, the view from the boat I was travelling on blew it away almost instantly.

I must get away more often! Though I’m not sure of the ethics of a “travel to places where people have it harder than me”, policy.

* The Daily Mail said it was 3.2 “on the Richter Scale”, which has not been used for about 30 years. I think it had magnitude 3.2, which is something subtly different. But then accuracy, especially in science, is not a strength of the Mail. That paper, after all, did more than anyone to whip up alarm about MMR and measles, leading to lower vaccination rates, and ultimately to outbreaks of measles. I didn’t notice the Mail taking responsibility for that when they published a story about someone dying from measles last year. This may be an aside from DialM’s core purpose, except that myeloma is very much a subject of science and health. And (coincidentally) measles vaccine has recently been used to treat myeloma. OK, so it’s off topic, but I loathe the Mail and all it stands for. Especially so today, when some of its readers will no doubt be voting UKIP.

4M

I don’t say my prayers but I pray for you. I might say “Who cares?” but I know you do. You’re the one who knows that my lies aren’t true. When I see you cry I think tears are cool.
Tears are cool – Teenage Fanclub

Check up (from 17th March tests): … Haemoglobin 12.9 … Neutrophils 2.44 … Platelets 225 … Kappa FLCs 60 …

I’m in the midst of trips to Mexico, Moscow and Manila. 3M. It’s a bit like the old days: global strategy consulting; exotic destinations; I’ve begun a new teaching placement, too. And, later on today, Marisa and I will begin another adventure, taking the children backpacking for a few weeks. A lot of fun, and not relevant for DialM. (But don’t worry: when I see you I’ll take every opportunity to tell you all about it.)

Of course, there is always another “M”, with myeloma. My scores are, actually, getting marginally better, month on month. I’ve bandied the word “normal” around rather liberally, but my blood count really is almost unremarkable now. Except the excess light chains, proof that something is still lurking there. I wrote a melancholy blog post, from a hotel room in Moscow, about not being able to move on from myeloma. I didn’t post it. I won’t now. It seems inappropriate, when so many good things are happening. I have really “got my life back”, which was all I could have asked for, 12 months ago. A small dose of amnaesia would be nice now maybe; I’d really like to be able to get it completely out of my mind.

Still, maybe I have my “M”s out of sequence? Myeloma came long before Mexico. The “M” directly ahead of me right now, is Manila. And on that I will focus. I will live to experience more “M”s (we all will), so there’s little purpose obsessing about the future, to the detriment of now.

Off to get the boys from school, and then a taxi to Heathrow.

Tuff

You’re fireproof. Nothing breaks your heart. You’re fireproof. It’s just the way you are. You’re fireproof. That’s what you always say. You’re fireproof. I wish I was that way.
Fireproof – The National

Tuff *. An exhortation on determination

Yesterday I was signed off from the physio I have been seeing since September. I’m going to be referred on to another gym group, so I’m not out of the system just yet, but it’s a major step, nonetheless. Another milestone, just in advance of a string of rather odd anniversaries which are to come over the next few weeks.

Since the musculoskeletal components of myeloma get under-reported in comparison to everything else, I feel it is a personal mission to write this stuff up. So here comes a potted recount of my physiological fitness over the last 2 years. Some of you know much of this all too well.

2012: March: The terrible crunch in my back that stopped me in my tracks. May-June: Increasing problems with walking, and particularly standing. July-Dec: Bone pain and chemo fatigue. I sat as much as I could. And slept propped up on pillows. I was slowly curling up. I avoided the need for a zimmer, mainly by using Lyndon’s buggy as a substitute.
2013: Jan: Couldn’t stand straight, or for long. Lingering pain, despite my myeloma being in partial remission. Feb: Verteborplasty released me from much of my pain, and most of my painkillers. Mar-May: Mostly lying down, really on account of my SCT. I suspect I was getting even more crooked, though I was too crook to care. Jun: Beginning to get a horrid realisation of the kyphosis I had developed. And beginning the fight to overcome it. Back on painkillers in order to begin to push my back back in to shape. Jul-Aug: Out and about, proving to myself that sitting in front of a PC is a major source of problems. Fighting to get flat, often experiencing really quite painful grinding sensations in my lower back as the bones realigned. Sept: Finally (finally!) seeing a specialist physio. She goes up in my personal NHS Hall of Fame for what she has done for me, in the ensuing 4 months. Oct-Dec: Continuing, determined, stretching routines. Measurable progress on every appointment. My head getting further back as I stand against a wall, until eventually I can touch the wall. Though I still need to be able to do so with my chin tipped down not up. My arms getting further down the wall when I stretch each side in turn. This second part is a reflection of me gradually gaining some rotational flexibility.
2014: Jan: Here I am. My upper (cervical) spine kyphosis is not quite corrected, but it is getting there. My mid (thoracic) spine pain is gone. (One’s thoracic spine doesn’t have much movement). My lower (lumber) spine is slowly turning back from kyphosis to lordosis – i.e. going the right way out – and I can begin to tilt my pelvis properly. I’ve got some rotational movement, and it feels like more is coming. My remaining muscular pain is diminishing and confined to my lower abdomen, my groin and the band across my lower back. I have been running, twice, without pain – which is proof, really, that things can move much as they should. I can swim 1km. I can ride a bike. I can walk miles. I can stand for a good hour or two before it gets really painful. I can carry luggage. I can get in a canoe. Though I think riding a horse was a bit much.


Dulwich Hospital, the unlikely scene of my salvation
I’m not quite what I was. I never will be. But then, I’m the wrong side of 40, and a bit of downhill is inevitable. And considering how many fractures there were in my back, I’m pretty delighted with where I am. Plenty of people comment to me right now that I look much more upright than I have for ages. I suspect I have regained a bit of my lost height, though I’m too chicken to find out. I’m certainly more and more mobile. And in less and less pain.

When I thanked my physio for all she has done for me, she told me that my determination has been an essential factor. I’m not saying this to show off (though I do feel quite pleased with myself about this), but because it is so easy to despair with myeloma. It (and its treatment) promises so many symptoms and consequences: pain, fractures, infections, anaemia, thromboses, calcemia, neuropathy, fatigue, kidney failure, memory damage. Oh yeah, and recurrence and death. It’s pretty easy to want to give up. Myeloma isn’t the only vile disease in the world (I have particular loathing for MND and MSA too, having seen what they do to people I love), but it’s right up there.

But, if you recognise my description of my experience as similar to your own, don’t give up. Never give up. Every day is a chance to “Get up. Dress up. Show up.” And Amen to that.

* For a change, instead of a song lyric, here’s a quote from a book, The Outsiders. Those of you not brought up in the 80s probably don’t remember the Brat Pack film adaptation…
“Tough and tuff are two different words. Tough is the same as rough; tuff means cool, sharp–like a tuff-looking Mustang or a tuff record.”

Normalish

I’m wasting my young years. It doesn’t matter. I’m chasing old ideas. It doesn’t matter
Wasting My Young Years – London Grammar

Check up (from 10th Jan tests): … Haemoglobin 12.4 … Neutrophils 2.26 … Platelets 176 … Kappa FLCs 61 …

My scores. Blood count normal, normal and normal. Even my lymphocytes (0.86 and counting) are getting more normal. (The lack of them was what sent me scurrying to hospital when I got a fever last month.)

And my light chains are actually DOWN. I was beginning to get used to them creeping up…. 62… 65… 69 in previous tests. Changes at this level are meaningless (number too volatile, test too sensitive), but even so I imagined a trend where I would very slowly emerge from remission. But no.

I think these are the best results I’ve ever had.

I was so pumped up, I decided today was the day to go for a run. Only a mile and a half. But crucially, I was not in pain. That’s my first run for 98 weeks, since the time I broke my back. A really quite significant mile stone, then and now.

Not normal

Friends, family, acquaintances, fellow cancer patients, the public at large see me running around, having fun, being busy, volunteering, travelling, visiting friends, driving a big fancy new car that I could not afford without a Motability lease, going out to dinner and concerts, speeding around the country, planning a house extension, doing courses, buying clothes and treats. It looks like fun.

Some may even feel envious, resentful. Yes, I have seen it. And I’ve experienced some pretty bad behaviour. What??? Yes, I know!

Don’t get me wrong. It IS fun. A LOT of fun. I’m having a blast. At the moment, a lot of how I’m feeling is down to the euphoric effect of the steroids I’m taking. But even without the steroids, life is good at present.

Good, but definitely NOT normal. Or not the normal-for-me that I used to know.

I don’t feel sorry or sad about it. I don’t mourn for my old life. I am lucky that my character has allowed me to accept how things are relatively easily. Everyone deals with the initial shock and horror of a cancer diagnosis in their own way, but there is usually anger, disbelief, grief, fear, etc. However as time passes, that can change and it has for me. I don’t claim any great enlightenment skills. I pretty much surrendered to it all from the beginning and that has worked well for me.

This is not the case for everyone though. I have met people, even at a similar way down the cancer road to me, who are not at ease, who rail against it all, angry, heartbreakingly sad and resentful that this is not the life they want, that they’re not getting what they think life promised them. I can’t say I don’t judge them for it, but I certainly do not judge them harshly. I wish them ease and acceptance. But each of us has our own journey, so they will hopefully find something they need along their path, a much harder path it seems to me.

I cannot say that I’ve enjoyed the journey, and there have definitely been times that have been really tough, that I can’t explain to someone who hasn’t been through something similar, at least not in a way that they can really ‘get it’.

I am fortunate that I have good care, good loving people around me, access to free-to-me medication from the wonderful National Health Service [NHS], access to both government benefits and financial support from my family that allow me to do all those things above. And that allow me not to live in fear of extreme poverty that I know others face.

BUT it is NOT normal.

I am writing this at 5:45am on a Wednesday morning, in a fresh, modern, very comfortable, hotel-style bedroom at the Penny Brohn Cancer Care Centre, where I’m participating on a Living Well with Cancer 2-day residential course. All free!

I’m wide awake and have been for over an hour. I look to my right, to the bedside table and see the medicinal accoutrements of my life.

This is a list of all the medication I take currently:
Penicillin (antibiotic) as prophylactic
Aciclovir (antiviral) as prophylactic
Fluoxetine (antidepressant)
Imatinib (protein tyrosine kinase inhibitor) for lung GvHD, although usually prescribed for Chronic myeloid leukaemia [CML]
Prednisolone (steroid) for lung and sclerodermatous GvHD
Montelukast (Leukotriene antagonist) for lung GvHD/asthma
Lansoprazole (proton pump inhibitor) to protect my stomach/guts against the other meds
Azithromycin (antibiotic) for lung GvHD
Alendronic acid for bone protection due to osteoporosis
Seretide inhaler (steroid) for lung GvHD, complete with an AeroChamber Plus for administering the drug
Posaconazole (antifungal) to protect against oral thrush
Nystatin (antifungal) to treat oral thrush
Vagifem (oestrogen pessary) for vaginal GvHD
Lacrilube ointment for dry eyes
Systane Ultra eye drops for dry eyes
Omega 7 for dry eyes (not prescribed – food supplement)
Menopace Plus for post-menopausal well-being (not prescribed – food supplement)
Eyebag (a heat pad for the eyes) for dry eyes

In my handbag I always have a supply of the Systane eye drops, Paracetamol and Codeine tablets and boiled sweets or mints (nothing too strong) for my mouth. Yes, I know sugar isn’t good for thrush, but that’s my choice. I can live with the thrush. It won’t kill me and it will go once I’m no longer on the steroids. This conversation is NOT normal. But it is for me these days.

I’m aware of a tightness in my torso and lungs, tingling in my feet and legs, stiffness in my legs and vague aches at my knees and elbows. I know when I get out of bed in an hour or two, that I shall not be nimble, despite the steroids. I huff and puff and cannot bend well to put on underwear, pants, socks, bras. None of this stops me, but it is NOT normal.

I know that later in the day my eyes will become blurry due to the steroids and neither the eye drops nor the eye bag really make much impact, or not for long. This has affected my day-to-day existence. My friend, concerned for me, insisted on driving me to/from Bristol. It was relaxing being chauffeur-driven, but it’s NOT normal.

I have a whole new vocabulary of medical terminology. I have become an expert patient. My immune system may be compromised but my scientific curiosity has been energised. I enjoy learning all about this disease and it’s treatment. This is NOT normal. I was never a scientist.

Many cancer patients and probably others who develop diseases/conditions that are life-shortening, who had a ‘normal’ life previously, talk about “the new normal”. And this is how my life is now.