Friday, 12 January 2018

Talktalk

There are things I want to say, but I don't know if they will be to you
Alcoholiday - Teenage Fanclub

I'm sticking this up here as part of the "complete record" aspect of dialm.

I remember, 5½ years ago, spending a lot of time working out how to talk about myeloma. It is one of the reasons I started this blog. One choice I made was to write to groups of my friends, letting them know the situation. It isn't great subject matter for a letter, but the benefit - for me - of writing it once, rather than saying it endlessly, is huge.

I find myself in the same situation again now. I've just written to a group of my friends. I'm posting it here not so much for posterity, but in the vague awareness that someone else, in a similar position, may find it useful to see how I manage my own situation.

Talking about illness is tricky. I don't believe it is constructive to ignore it. Nor do I want to spend all day every day talking about it. I've learned lots, from other people, about the many different ways people handle it. Some better. Some worse. This is my way. You might find it informative. Or you might think I'm nuts. Either response is fine by me.
Dear friends

This is a bit of an odd letter. Odder for you to read than for me to write because it’s not new news to me.

Some of you know already that I have myeloma - a type of blood cancer. It causes anaemia, poor immunity and damages bones. I was diagnosed nearly six years ago, after I broke quite a few vertebrae in my back while out running. It can be treated, but can’t be cured. I had a lot of treatment six years ago and have been reasonably well since then, but it has been coming back slowly for a while, and I need to have more treatment this year.

I’m not sure how the treatment will affect me (the drugs are ones I haven’t taken before), but I’m assuming I won’t always be at my best! I wanted you all to know so that you understand if I look a bit worse than normal, and if I sometimes can't attend things when I should. (I’ll need to have a stem cell transplant at some point in the summer, which will be a lot more intense.)

I write a blog, which tells the story, for anyone who is interested, but also means people who want to know how I am can find out, without us all having to talk about it. This doesn’t mean it’s a taboo subject, but it’s not anyone’s preferred topic of conversation in the pub either. At least, not all the time.

The blog is at dialmformyeloma.blogspot.com

If you want to get notified of updates, you can either click the link on the blog and give it your email address, or you can follow me on twitter: @alexlondon.

I’ll see you all soon I hope. I’ll take all your good wishes as read, so don’t feel any obligation to reply to this letter, or even to mention it. In my experience, my myeloma gets more than its fair share of airtime anyway.

Alex

Thursday, 11 January 2018

TimeBoMB

Mother, do you think they'll drop the bomb? Mother, do you think they'll like this song? Mother, do you think they'll try to break my balls?
Mother - Pink Floyd

BoMB time

Thought you'd be as delighted as I am to know I'm going to have a bone marrow biopsy on Monday!

Oh the anticipation.

Hopefully, I'll also have a lung function test, another MRI and an echocardiogram. After which, all systems go for treatment!

But only one of those appointments fills me with dread.

They have not offered me any sedation. They never do, though if I insisted on it, they'd have to provide it. But that would require another member of staff, and things are stretched enough as it is. Anyway, there isn't any gas in the little room they use. So if you are to be sedated, it has to happen in the main treatment space, i.e. in public rather than in private. I'm not sure which is worse. At least in private, no-one can hear my screams.

Friday, 5 January 2018

Bad DJ

I got two turntables and a microphone.
Where It's At - Beck

Checkup ... KFLC = 698 ... κ/λ = 116 ... Hb = 10.2 ... Neutros = 1.60 ... 

Lyndon got a set of digital decks for Christmas. They're very cool, though it will take him - and me - a while to get any good at syncing two tunes. I have the same problem more generally.

On one deck, spins Christmas - presents, drinking, going out, staying up. I'm not a fan of novelty records, nor reindeer, nor turkey, but I love the family time, playing games and hanging out. On the B-side, New Year has always been good to me. This year, quietly. And then, spin the next disc, we're into the winter season, kids at school, Marisa back to work. The discs stack up; seasons ahead; 2018 in a playlist.

Meanwhile, on the other turntable, I've found myself returning, more rapidly than I was ready for, to the Kingdom of the Sick. And this one's definitely a long player. Painkillers have gone from occasional to regular. Symptoms I'd largely forgotten have re-emerged - most significantly in interrupted sleep; but also in rib pains and spasms, restricted movement, discomfort going from sitting to standing, fatigue and so on. I'm popping pills merrily: oxycodone, co-codamol, amitriptyline, adcal - up to ten a day. And I'm squaring up to the treatment I now clearly need. Today I sign the consents for "Myeloma XII". Next week I'll have a BoMB, and various other tests. Cycle one day one - my first dose of ixazomib, thalidomide and DEX - is probably just three weeks away. I am the first patient at King's to go on this trial (though there are others, elsewhere, ahead of me.) It's a phase III trial - we know the drugs work. But DrC reminds me today, in no uncertain terms, that he really doesn't know what happens if one takes these drugs in the combinations they plan for me (particularly the "augmented" transplant part, if I end off being randomised for that).

I'm not doing a great job of mixing the two tunes. Their rhythms are too different, their melodies clash.

We hosted a pre-Christmas party, 24 hours after I'd changed my painkillers. Foolishly, I ignored the warnings on the label, forgetting that my tolerance levels would be low. Those who stuck around to the end - and my family who had to share the following day with me - saw how I messed that up. Just one visible demonstration of a deeper ongoing issue for me - I'm leading two quite disharmonious lives.

I've just two new year's resolutions for 2018
1) Stay alive
2) Stop chewing my nails

So far, #2 is proving harder. But it's peculiar - and not easy - to look at the year ahead and know that my doctors' hopes for me, my family's hopes for me, and my ambitions for myself are basically just to get through it. I'll do my best to sync to the other deck, to participate in the lives of those around me, as I can. When I mess up, which I will, I'm sorry.

Pick yourself up off the side of the road, with your elevator bones and your whip-flash tones. Members only, hyponotizers; move through the room like ambulance drivers.
Where It's At - Beck

Friday, 8 December 2017

A plan for 2018

You understand, I got a plan for us. I bet you didn't know that I was dangerous
Dangerous - Big Data

Checkup ... KFLC = 676 ... κ/λ = 122 ... Hb = 11.6 ... Neutros = 1.16 ...

Today, as I expected, I’m told that my next appointment is probably the start point of treatment. I’ve been told this before, but they seem to mean it this time. They’d have started today, but for the practicalities of Christmas: low staff levels for them, domestic priorities for me.

I’ve been experiencing a reasonable amount of rib pain and quite a few muscle spasms, these last two weeks. I’ve had to increase the frequency with which I take painkillers, and I’ve started taking amitriptyline again to defuse the spasms. The doctor seems pretty certain that these symptoms are evidence of progressive disease.

In terms of blood counts my κ/λ ratio is (again) above the threshold which separates smouldering myeloma (no treatment required), from symptomatic (or likely to be symptomatic in the very near future) disease. The change in the ratio is largely because my lambda levels are down - which could itself be a sign of mm crowding other cells out. Also of concern is my low calcium - for which I have been prescribed vitamin d; and low neutrophil level, which puts me at increasing risk of infection. The consultant says it will be easier to treat me - especially in the context of the trial - if I can avoid contracting pneumonia (or something else) at the same time.

So I expect to sign the consent forms on 5th January, and then there’ll be 4 weeks of tests, meaning I will start treatment proper at the beginning of Feb. This would mean SCT somewhere between June and September, depending on how things go. (And I’ll be up on my feet by next Christmas, yay!)

It doesn’t take long, living with rib pain, to remember exactly how bad myeloma symptoms can be. If the symptoms persist, I’ll be keen to just get on with it now.

Sunday, 26 November 2017

Cloudy intervals

Cloudy. The sky is grey and white and cloudy. Sometimes I think it's hanging down on me
Cloudy - Simon & Garfunkel

A follow up on the path ahead, and my state of mind

I thought I'd share a few excerpts from my most recent take home reading matter - the pre-read participant information sheet for the Myeloma XII (ACCoRd) trial I am heading for. It might help give definition to the cloud I'm under.

Firstly, here's the synopsis of the treatment duration. At a minimum it would be 5 months. But, depending on how I respond and how I am "randomised" it could be 7, plus 2 months recovering from the SCT, plus 2 further months "consolidation", which would be 11 months. So, I don't know how soon I'm starting, and I don't know whether I'm in for less than half a year, or a whole year. And that's without considering whether I will end off taking "maintenance" drugs indefinitely. Last time, I was so ill that time hardly mattered. This time, a year is tangible children's milestones, holidays, work schedules. All of which are up in the air while I don't know when treatment will start or end.

Next up, here's an opening salvo on the treatment medications and potential side effects...

"The risks... are not well known". Never forget: you're on a clinical trial, not a tried and tested treatment. No-one knows how this will work out. And, assuming there are no unanticipated interactions to consider, then at a minimum, here are the likely side effects of the three drugs in the protocol. I'm reasonably phlegmatic about all of this. Still, it's hardly a reason to smile in the morning.


That's what's clogging up my head, preventing me making any plans, clouding my future beyond the next few weeks. I guess some of the dialm audience - myeloma survivors and others who've experience of recurrent cancer - will understand this. For others, it might be hard to truly take in.

When I was diagnosed, I was haunted by fears of dying. These days, that bothers me much less. Partly because I've got used to it, and partly because I know that I'm not actually that likely to die, in the short term. It's the process of living with myeloma that I have to reconcile to, now. Like anyone grappling with their own mind, I have experienced troughs of deeper darkness, and periods of greater positivity. Right now, I'm fine - I can put it all in perspective.

I don't know if writing this up will elicit horror, pity, compassion fatigue or what. I'm putting it here for one reason only: that I want dialm to be an honest, unfiltered account.

Friday, 24 November 2017

Sunny intervals

Hey sunshine, I haven't seen you in a long time. Why don't you show your face and bend my mind?
Cloudy - Simon & Garfunkel

Checkup ... KFLC = 641 ... κ/λ = 95 ... Hb = 11.2 ...

I've hesitated to post this. It's 2 weeks now since my last appointment, and more since I wrote much of what follows. It seems bleak to blog negativity, when really I should just be grateful for each month I keep out of the chemo unit. But life is more complex than that.

My 'eloma appears to have plateaued at the most sensitive moment. Yet again I don't quite tip the balance for treatment, despite last month's advice to the contrary. It's hard to complain - the immediate upshot is a chemo-free Christmas for me. And it is looking increasingly as though I may hit five full chemo-free years since my SCT. What's not to like?

Clouds, and also sunshine. Vilnius
Except...

I would love to say I've kept positive, these last few weeks. I'd love to say I can see the purpose, beyond the ordeal. I'd love to boast of maximising the value of my time, of the things I've gone out and done, of the fun I've been to be around. But I would be lying.

I'm conscious, often, not to make special pleading for mm. (There's plenty of other shit dealt out.) But it does have its own exquisite features. Unlike last time, I can see what faces me in its entirety: because I'm not preoccupied with the shock of diagnosis, or the ravages of advanced symptoms. But instead of making it easier, it somehow makes the transaction - the cost, and the benefit - more stark and less appealing.

If the past is any guide, the next few years could be thus:

  • 1 year treatment - chemo and SCT
  • 2(+) years remission - dormant mm accompanied by fatigue and every passing virus
  • 2(+) years relapse - with the clock ticking loudly

And then, with a following wind and a bit of luck, I'll be back where I am now.

I ask myself which of those three phases is the best one to be in.
I guess the answer should be "remission"...
But I've actually felt much better physically in the last couple of years - less fatigued, less jaded...
So I'm tempted to answer "relapse"...
Except I'm haunted by the endless check-ups, discussions, the impending doom...
In some ways "treatment" is the easiest phase...
It's clear what the objective is, and everyone rallies round in support....

But what kind of insanity is that! Am I willing myself into chemo? Everyone knows that being on chemo sucks. If I'm even entertaining the thought that it might make me happier, then I must have lost my mind.

When I first researched myeloma, all those years ago now, one of the things that fixed in my head was the description of hypercalcemia symptoms as "stones, bones, groans, thrones and psychiatric overtones". It didn't seem at all surprising, to me, that the various painful and dignity depriving symptoms would between them tend to impact mental health. (And hypercalcemia is but one component of myeloma.) It's easiest to restrict conversation to talk about the physical indignities, of course. I reckon I'm pretty mentally robust, if I'm honest, but the endless assault of myeloma is still tough.

(Sorry for all the moaning.)

I'll post a follow up, in a couple of days, about the treatment ahead.

Monday, 16 October 2017

Inconclusion

How many times can we put ourselves through this war, like all the lovers that have been here before? How many times can we watch this fade into nothing?
Fade to nothing - Rag'n'Bone Man

Checkup ... KFLC = 679 ... κ/λ = 92 ... Hb = 10.4 ...

Another set of frankly inconclusive blood results. The κ/λ ratio is up, but not (yet?) above the threshold. My light chains are up more significantly - their highest level since 2012 - but this potentially means less than the ratio. My anaemia is a bit worse, but not yet disastrous. It seems my mm doesn’t want to make the choice about when to start treatment.

I can’t help wondering, given my myeloma’s behaviour, how long it was like this before I was diagnosed. As of next month, my "relapse" will have lasted longer than my post transplant "remission" (28 months remission, 27 months relapse... and counting). If my mm is this ponderous, it seems unlikely that it emerged from nothing to nearly kill me in just 2 or 3 years. I think I might have had it for even longer than I’ve previously assumed.

In clinic, yet another doctor. Since I moved from my regular slot with DrC, I’ve not seen the same doctor twice. This is a simple consequence of pressure and stretched budgets - the clinic barely keeps its appointments; trying to match patients to doctors would tip it over the edge. I’m sure tory ministers don’t take this into account as they squeeze out "efficiency". But my dignity is sacrificed by the repetitive need to explain my symptoms, the endless investigations, and the looming treatment decision. My grumblings lead to a visit from the head consultant. And the upshot is this: the preferred treatment for me is a clinical trial (Myeloma XII) that is only just about to begin at Kings. Once it’s ready, they’ll want me on it. No more waiting on my blood results: the cumulative risk of kidney damage meaning it’s not safe to sit indefinitely in the current position. So in the end, it seems, the trigger to treat will be a drug protocol, not my health. Funny thing, life.

The clinical trial could involve as much as 10 months of chemo, sct and more chemo, depending on my response and how I get “randomised”. It’s a big journey to set out on, and will mess up much of 2018. Whether I can string the start date along another 2 or 3 months, who knows.

In a side plot, I’ve been having my kidneys investigated for potential disease or stones. The latest instalment was CT scans, and I’m hoping for the all clear. The pain appears to have passed - along, I’m assuming, with the stones. The consultant here says if the CT is clear, she'll discharge me. If I don’t get an all clear, the next investigation would involve a camera into my bladder, and I don’t like the thought of how they’d get it in there. So, here’s hoping.

The digested read of all this is simple: it is pretty much inevitable I will be back on chemo very soon now. That doesn't exactly fill me with joy. But for now, the watch and wait continues. I'm doing my best not to care or obsess; to live each day; not to waste the time I have; to keep positive. It's hard.

Thursday, 7 September 2017

Pico

I've never felt so good. I've never felt so strong. Nothing can stop us now
Nothing Can Stop Us Now - Saint Etienne

Checkup ... KFLC = 550 ... Hb = 10.6 ... κ/λ = 81 ...

So this weeks instalment is thus:

My light chains have opted to split the difference - 2 more tests both giving results almost precisely in between the previous high and last month's dramatic drop. What that means is not obvious. The hospital Dr sends my GP a letter after each appointment, and I receive a copy. Last month he described me as a "difficult case", which I think means it is unclear how we proceed, rather than that I am a pain in the arse.

I'm not quite triggering any single 'reason to treat' criterion. My κ/λ ratio, which had soared well over the 100 threshold, is back down. And I'm not reporting any symptoms. Indeed, I've just been on a walking holiday in the Spanish Picos de Europa mountains, so I must be in reasonable shape. I did find myself puffing on the uphills, and that may reflect the most significant bad omen for now, which is my relentless anaemia.

My haemoglobin level is moving from normal-for-me (which would not be normal for you), downwards to not-good-for-anyone. If it continues to fall, it will become a reason to treat in its own right. Being consistently significantly anaemic is not much fun. (That's the boundary of my Saint Etienne infused positivity. That and achy hips.)

So, we wait on more and frequent blood tests, and another MRI. Back in the MRI machine, for a whole body scan. The outcome of which can be compared to the one I had last December. This really is the full English breakfast of scans - neck clamp, head clamp, weights and sandbags everywhere. Contrast dye injection, prolonged breath holding, the lot. And so so noisy. Still, better this time without the blocked-nose-sore-throat cold, which made the previous experience that much worse.

I was also booked in for a bone marrow biopsy but the consultant decided that having a BoMB right now is not really worth it. (I can save my anticipation for the ones that will almost certainly be required for the clinical trial I will likely find myself on at some point soon enough.) In itself, cancelling that appointment is something of a result.

In other news, I've been heartened to read several articles about a new treatment called "CAR T-cell therapy". It involves the patient's own immune cells being harvested, modified to attack the cancer cells, and then re-infused. There have been encouraging trials on myeloma patients, and the process has just been licensed to treat one type of leukaemia. It is quite possibly going to become a functional cure for some (many?) people. (Putting the Car-T before the hearse?) I just need to hang on long enough. In that context, my endlessly dithery disease is exactly the right kind to have. Long may the dithering continue.

Saturday, 5 August 2017

Crepuscular

Infinite sunrise (Blelelele-lelelele-leleleleh. Aha ha ha. Ah ha ha. Ooh yeah.)
Perpetual Dawn - The Orb

Checkup ... KFLC = 464 ... Hb = 11.2 ... Neutros = 1.1 ... κ/λ = 82 ...

Every myeloma journey is different. Mine appears to be quite considerably a mind game. I walk down to clinic having steeled myself for the inevitability of restarting treatment, and concerned primarily with when it will begin and what protocol I'll be on.

To be told that my light chains have dropped (by nearly a third) is - to put it mildly - a surprise. This means the treatment conversation can wait a little longer, my κ/λ having dropped well below the 100 threshold. The registrar doesn't have anything to offer on the whys and how-comes, and I'm beyond asking. It just is.

I have no energy, either, for guessing the next instalment. Maybe this result is a blip and next month I'll be preparing for chemo. Maybe the last few months were the blip and my light chains will go up slowly again from here. Maybe this is a new trend and my light chains will fall further. No-one can know, and I don't much care to pretend to have any inkling. We'll find out, soon enough.

The doc signs me up for another MRI and a BoMB in a couple of weeks. (So that's something to look forward to!) I've been feeling intermittently well and not, of late. I'm certain the myeloma is lurking about, but if it chooses to keep its distance, I'm OK with that.

"Sunrise with phone mast" (view from my bedroom window)
My myeloma is challenging to comprehend and process. It leaves me permanently on edge, perpetually a month away from treatment. I've been relapsing now for 2 whole years. But I'm not complaining. It's better than some of the alternatives. With absolute horror I discovered, a few weeks ago, that one of my friends, whose myeloma journey started simultaneously with mine, and who I have always considered to be my 'myeloma twin', has died. I'm horrified for her: she was younger than me; and at the end she endured plasma cell leukaemia - a tough way to go. And I'm horrified as much for myself; one can't have a much more intrusive reminder of one's own mortality. I will miss her companionship. I hope her family and friends can find some peace.

After clinic, we drive to Sussex. I'm just unloading our bags in the rain when a car careens greasily down the mud flecked lane, mounts the verge opposite me, rolls onto its roof and then cartwheels end over end down the hill. It lands on its wheels, but the roof is stove in, and much of the contents of the car - papers, CDs - are strewn across the road among the smashed glass, light fittings and bumpers. I walk towards the steaming wreck, with a sick feeling in my stomach of what I'm about to witness and have to deal with. And then - improbably - the door opens, and the driver just steps out. He is very dazed, and has a lot of superficial lacerations, but he is basically unhurt. As he walks toward me he casually picks his phone up from where it is lying in the road. I take him into our house, to sit down, stop the bleeding, and wait for police and paramedics. It is chaotic: our luggage is all unpacked and underfoot; there's blood on the floor and on the buttons of the telephone. Our very new puppy is somewhat awed by all the high vis jackets of the procession of visitors who proceed to walk in, accompanied by plenty of rain and mud. But as the driver sits and calm returns, I'm reminded that life always has space for miracles (and of the amazing safety specification of modern cars).

I hope he enjoys waking the following morning as much as I do.

Wednesday, 21 June 2017

Psychophysical

Destiny is calling me. Open up my eager eyes
Mr Brightside - The Killers

I decided this week's update should come before my clinic appointment. After all, 99.8% of my life occurs between appointments. I live life merely reaching from one appointment to the next.

It's been a strange - and not always easy - few weeks, accompanied by a sense of foreboding of what is ahead. I've felt increasingly tired, run down and achy. The weird thing about symptoms is that even with many years of self observation I am no closer to being able to separate physical from psychological. I guess it is simply not possible. Consequently, I am unable to tell for certain if I am suffering anaemia or depression. They could both deliver the listlessness; the lack of energy, interest and concentration that I have been feeling.

Then again, I have been feeling much better the last few days, so maybe it was just a virus. Anything is possible. It's not nice feeling watered down. I'm glad its gone again.

Marisa sent me to the GP to get some better painkillers (back on codeine), and to have my repeated complaint of possible kidney stone problems checked out. The Dr gave me the impression that she thought my symptoms were more likely bone pain than anything else. But a urine test showed positive for blood, so maybe I am right. Either way, I will at least get a referral to have my kidneys checked over.

Life feels even more hand to mouth than normal because if this week's appointment is a bad one - another +100 - that's basically the signal for going back in to treatment. I do so want to make it through the summer first. But the waiting is killing me almost more than the myeloma, right now.

As I'm preparing to post this, the hospital calls. This week's clinic is cancelled. I ask for my blood results over the phone. My light chains (KFLC) are 654. That's +50 on last month - just little enough, I would imagine, to tide me over another month. And my Hb level is back up to 12.0, so no dramatic anaemia, either. I'm grateful, really. But if you are hit by a speeding car, you have a lot less time to think about it than if you are flattened by a road roller like Otto in A Fish Called Wanda.

"I'm going to k...k...k...kill you!"


Friday, 26 May 2017

Recidivism

Think of all the roads; think of all their crossings.  Taking steps is easy; standing still is hard. Remember all their faces; remember all their voices. Everything is different, the second time around.
You've Got Time - Regina Spektor (theme from Orange Is The New Black)

KFLC >600 ... Hb = 11.5 ... mood = low

I'll save us all the witty chat. Today's appointment is mercifully punctual and brief. Those are its redeeming features. The little plateau on which I have been resting, precariously, for a while, seems to be at an end. My light chains have jumped 50% in the last 2 months. In theory, this is all irrelevant because clinical symptoms - of which I have none - are the only sure basis on which treatment decisions will be made.

But.

My haemoglobin levels are dropping. Nothing dangerous yet, but there's only one direction of travel. If they continue the way they are going, anaemia will become a clinical symptom in its own right. And anyway, the doctor is increasingly concerned about the light chains themselves and the risk they pose to my kidneys. My kidney function is fine - as it has always been - but it's really not something where you want to wait until the damage has been done.

So, my springtime of skipped appointments and long intervals is abruptly over. I'm back on a 4 week review cycle. If my light chains do again in the next couple of months what they've done in the last couple, it will be time to begin planning my return into chemo. Maybe I'll string it out another month or two. Maybe.

For reasons it's not appropriate to dwell on here, I've spent a bit of time this week revisiting the process of diagnosis, and the terror and confusion that went with it. It's very different second time around. No confusion. Less terror. More dread.

Thursday, 16 March 2017

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

Monday, 6 March 2017

Tasty

The taste just slips away
Taste - Ride

Anyone for high dose gin therapy?

On March 6th 2013, 4 years ago today, I had a drip infusion of "high dose" melphalan; the first part , and really the main event, of my stem cell transplant. (The actual transplant, a day later, was merely a salvage therapy to stop the melphalan from killing me.) Its consequences were physically gruelling, and it was the beginning of a month's forced separation from my family (we weren't finally reunited for 6 long, desolate weeks, during which time I missed Lyndon's first birthday). But it was also the beginning of my recovery from the illness which had consumed me over the previous year.

And much to my amazement, my recovery seems, for now, to continue. I am feeling well. I haven't succumbed to immune-compromised infection at all this winter. The pains in my bones seem all mechanical, rather than myelomal, and not getting noticeably any worse.

For the first time ever, I bunked a hospital appointment, last month. I was overseas, working, and I didn't remember to cancel/reschedule in time. So I'm currently on just about the longest break I think I've ever taken from the haematology waiting room. I'm going back in next week, so I will get an update on the numbers then. But to be honest, up down or level I really do not care, as long as I feel well.

The only drip infusion I've had recently was this gin one, in a dubiously themed bar in Herne Hill. Gin tastes A LOT nicer than melphalan. And gin takes less time to recover from, too, no matter how high the dose.

Wednesday, 11 January 2017

Compassion

I had to phone someone so I picked on you. Hey, that's far out, so you heard him too?
Star man - David Bowie

I'll be sharing this video with my kids. The virtue of being nice, in a metaphor they'll understand. No fun living, if you live on the dark side.

Friday, 6 January 2017

Sitting pretty

Sitting pretty in the prime of life. I'm so tasty and the price is right
Take a slice - Glass Animals

Today's reading is taken from the book of Crapulous, chapter 94

An appointment with a sole purpose: to discuss my MRI results. (No new blood test results to look forward to.) So it is typical of the limitations of the NHS that, when DrC opens up my notes, the full-body MRI report is still not there. We're left - hardly for the first time - to chat on the basis of what little we know. We warm up with small talk about Christmas, the relative merits of Rome and Copenhagen (I've had the pleasure of visits to both, over the holiday season), and international job opportunities for myeloma specialists. We even touch briefly on brexit. When we get on to Putin, we realise it's time to return to the matter in hand.

So... reading the runes. There's new evidence of damage in my upper thoracic spine, and in my lumbar region. But no evidence of progressing myeloma. DrC thinks it is unlikely that the full-body report will show up pockets of mm, given that the spine does not, and I'm happy to accept this as entirely plausible. He describes this as
"Good news"
But I'm a little more sceptical. I explain my concern. Worsening kyphosis? Chronic pain? Is my spine going to keep slowly crumbling? DrC promises we won't let that happen and says that I could go through more vertebroplasty. I don't think my current symptoms are sufficient to begin that process. At the same time, I don't entirely buy the promise. I make a mental note: I must continue to recognise that my spine is weak so... definitely no return to running; avoid heavy lifting or arduous manual activity; and I must do more regular back exercises. That way I hope I can avoid my back getting much worse. At least, slow the process. And maybe I'll go back to my gp and ask for some more strong painkillers - so when I have a bad day, at least it doesn't hurt.

At the risk of getting into crystal ball territory, I ask DrC, in light of last month's KFLCs, whether it is possible for myeloma to plateau after progressing for so long. I'm rewarded with another parable*.
Cancer gang tattoo?
"Cancer, is not one thing, it is a number of gangs. One gang may be stronger than the others, and so that gang grows bigger. But it is possible the father of that gang is not a stem cell, but one level lower than a stem cell..."
(the metaphor has somewhat broken down, I feel, but let's roll with it)
"...in which case it may not be immortal, and after growing, that gang may die. In which case, in a low-malignancy disease, it is possible to see progression stop or even appear to reverse".
It's why, he tells me, it's best to be cautious about treating mm - avoiding treatment that is too early or unnecessary.

Picking up on the 'low-malignancy' reference, I risk a question about prognostic indicators, specifically the contrast between my 'high-risk' genetics (del17p / TP53, for those who know what that means), and my 'low-risk' ISS staging ('stage 1' due to low levels of ß2-M). He rolls his eyes as doctors normally do when faced with evidence of patients who have been mugging up. He taps away and confirms I'm right about the genetics (ha!) and that this is indeed bad. But he says his reference to low-malignancy was about mm generally - for example in comparison to plasma cell leukaemia. He also says that my response to transplant has been very good. Average (median) time to progression ("PFS" - progression free survival) is 29 months and average time to treatment is 3 years. Although I've been relapsing for ages, I am now nearly 4 years treatment free, and I'm beginning to wonder how much longer I will eke this out. It may be longer than I think.

It is weird living with this complex, mysterious, menacing thing. But while it doesn't actually bite it is a mental, not a physical battle. And it does at least spur me to live my life.

I stop at phlebotomy on the way out, to have some blood taken. As I leave I wish the nurse a happy new year.
"2017, they say it may be hard year", she replies.
"But hopefully not for me", says I.
I head home and research flights to Japan.

* I reckon doctors reading patient blogs would be like actors reading reviews: probably inadvisable. But if DrC happened to read DialM, I hope he would recognise that, over the last few years, I've appreciated our exchanges, and his efforts to answer my questions. I quite enjoy the metaphors. (Maybe I could gather all these parables up into a 'Book of Crapulous'). I certainly value his expertise in his subject, and his continuing to see me. He is the hospital's head of clinical trials for myeloma. And I am not even in treatment, let alone on a trial. But one day I will be, and I hope I'm still in his care when that day comes. If I seem facetious, it is a product of the ongoing weirdness of a life in myelomaville.