Friday, 16 February 2018


We are the boys who'll drape you in jewels, cut off your hair and throw out your shoes, ‘cause baby, you won't need them, where you'll be
All the king’s men - Wild Beasts *

I figure some of you reading this do not want or need long essays from me. If you’re following simply to know I am ok,  I'm grateful - thanks for caring. For you, a short read...


Cycle 1 is going ok. The lack of side effects, combined with the simplicity of taking pills, rather than intravenous drips, injections, picc line etc, is leading to something of a reverse placebo effect. The drugs had better work, because I find it hard to believe in them, having been conditioned to old school chemo. It’s a bit disconcerting to find myself taking what appears to be medicine.

That said, the steroids are not very nice - making a mess of my Thursdays and Fridays. But more about that another day. And I’ve been having quite a bit of trouble with pain and spasms in my lower back. My mobility is rubbish, and it hurts a lot. Very frustrating. Still, I'm optimistic the pain will be quelled after a couple of cycles, and if the next few months is like this, it’s not so bad.



Still reading? How nice! Even so, I guess you don’t want or need a blow by blow of my days and weeks. Instead, I thought it might be of interest to give a bit of a summary of the drugs I’m on, seeing as I’m in a drug-taking phase of my myeloma. I’m going to start from the top, with the ixazomib. I take one 4mg pill of ixazomib each week, 3 weeks on 1 week off. And if I am selected in the clinical trial to receive "augmented" or "maintenance" treatment, it will be with ixazomib.

Ixazomib is a proteasome inhibitor, which means it disrupts the cell's mechanism for breaking down unwanted proteins. Without functional proteasomes, a cell chokes on its own waste, and dies. All cells need proteasomes, but myeloma cells need them more, as they produce excess quantities of paraproteins. So proteasome inhibitors are particularly bad news for myeloma cells.

The first proteasome inhibitor developed was bortezomib. I took this last time. It was only developed from 2003 so it’s a very new branch of medicine. Before it came on the scene, myeloma had very short life expectancy, and the main drugs prescribed were unsophisticated, generic “chemo”. Proteasome inhibitors are the reason I’m still here.

Ixazomib is even newer - it was only registered as a potential treatment in 2011. When I was newly diagnosed (2012) I kept a list of innovative treatments when I heard about them - part of my armoury towards becoming an engaged patient. (I’ve stopped keeping this list because it got too long - I realised that merely knowing the names of possible medicines was not what would empower me.) At the time I wrote of ixazomib simply
“Ixazomib (MLN9708) (can be taken orally) FDA approval projected 2015."
In fact, approval came a little later, in 2017 in Europe. NICE only consented for the NHS to pay for it as of November - 3 months ago! UK funding so far is for people who’ve had more treatment than me - I wouldn’t be eligible yet, so I’m only getting it as part of a clinical trial. The drug company is providing the drugs. Saving the NHS some money. And a good thing too, as the wholesale price is otherwise £2,000 per pill. (Indeed, that’s how I got my drugs last time round, too - thrifty me.)

Proteasome inhibitors don’t have the potential to be a cure, but they do have the potential to improve responses. The trial is, in part, to investigate whether proteasome inhibitors can improve the outcome of stem cell transplant. It’s part of the transition from chemo to medicine. It seems weird now to believe that in future myeloma treatment may actually make one feel better, rather than worse. Something I look forward to getting used to. Though that is not to discount the one very real and very horrid potential side effect of these drugs, which is peripheral neuropathy - the sometimes permanent loss of feeling in hands and feet. I’m lucky not to have suffered much of this. And ixazomib, taken orally, is less likely to cause neuropathy than bortezomib.

These drugs are miracles, really. I am so very grateful they existed by the time I developed myeloma. The story, otherwise, would probably have been shorter.

The exotic names are striking. There is a nomenclature such that you can tell something about a drug from the end of its name. A “...mib” is a proteasome inhibitor. Other classes of drugs have their own suffixes. For example, a “...mab” is a monoclonal antibody. The syllable before that tells you if it is human (u), humanised (zu) or chimeric (xi). (Chimeric meaning of mixed human and animal origin). The syllable before that, in some drugs, tells you if it acts directly on the tumour (li) or on the whole system (zum). So a “...zumumab” is a systemic, human origin monoclonal antibody. And a “...zomib” is a humanised proteasome inhibitor. So now you know!

So far there are three “...zomib”s in use. The two I’ve had act on the same part of the proteasome - they are functionally the same. Whereas the third - carfilzomib - works slightly differently, meaning it is another potential treatment for me, when I need it. There are several more ”...zomib”s currently in trial, including marizomib and oprozomib. Things to try, one day, if I'm lucky!


* I'm off to a gig, tomorrow! Pragmatism dictates we’ll be in the seated area. Wild Beasts are a band I’ve loved for a long time, now sadly split. Tomorrow is the last time they’ll play. If this lyric is contorted into a dialm metaphor, then the drugs are the boys (and I am the girl from Hounslow. Hatch me! Hatch me!)...

Wednesday, 31 January 2018


In through a doorway she brings me white gold and pearls stolen from the sea
Running To Stand Still - U2

Baseline ... KFLC = 750 ... κ/λ = 141 ... Hb = 10.0 ... Neutros = 1.3 ... Plasma = 60% ... 

So, two trips to hospital today. First to get stabbed. Second to get poisoned. (i.e. blood tests and prescriptions.)

My blood counts have deteriorated. Light chains and κ/λ ratio are both up, and my haemoglobin is down. My anaemia is getting more severe (and I don't expect the drugs to help, in the short term).

I'm pretty alarmed to find that in my bone marrow biopsy 60% of the cells are plasma. If I didn't have myeloma, it should be <5%. More than half of my bone marrow is myeloma. Yuk. No wonder my bones ache, my blood counts are lousy and I don't feel great. (It's also a substantially worse state of affairs than when I was first diagnosed, and this result would be a sufficient reason, in and of itself, to trigger treatment.)

But regardless of the blood counts and level of plasma infiltration, my bone pain is getting worse by the day. I've had to increase my doses of both oxycodone and codeine, to try to keep it at bay.

It's pretty clear we need to get started.

Today is Cycle 1, Day 1. I've passed all the tests. Get set. And, we're off. The finishing line, for this first part of the treatment will be late May, or mid July, depending on how I get on.

Here's my typical weekly medication (I made a chart so I don't forget to take things!)

And here, in 3D ...

I've already taken my first load of DEX ... a long night beckons ...

Wednesday, 24 January 2018


I guess there is no one to blame. We're leaving ground. Will things ever be the same again?
The Final Countdown - Europe *

T minus 10, 9, 8,  7, ignition system started ...

I've had a fair torrent of messages, recently, which has been lovely. Tough too, sometimes, because talking about it makes it real. But lovely, mostly, because I know so many wonderful people. Thank you all, for all your kind words and thoughts. Of course it is real every day, mostly in my ribs, but it is real in a more profound way when I realise how many other people are affected by my lil' ol' 'eloma an' me.

I don't want to overload you with updates every time anyone sticks a needle in me. But right now, if I leave it long, things get out of hand. Questions get asked. So, here it is. I'll keep this reasonably brief.

The BoMB is done. Yes it hurt. Yes, I feel the need to gross you out with a couple of photos. Most importantly, it is done, and I don't have to face that experience again until somewhere much later in the year.

Also done, this Monday, is an echo-cardiogram. That's the one that is disturbingly like having a pregnancy ultrasound scan. (I've had all these tests before. I'm a seasoned pro NHS consumer. Might as well get your money's worth.) I didn't see whether my 'eloma is a boy or a girl. I could call it crude (genital) names of either gender, so maybe it doesn't matter.

And yesterday, a PET/CT scan. Down in the basement. They stick something radioactive in. Then I lie in a darkened room for an hour while it spreads round my veins. I try to alleviate the boredom by reading, but apparently that would cause all the radioactive stuff to congregate in the eye muscles. Presumably it would lead to cool-looking-but-useless images on the scanner. I am admonished by a nurse, and so I have to shut my eyes instead. (Lie back and think of Europe.) Then, before the scan, I am required to pee. I guess this avoids a great big glowing bladder image ruining everything. There's a special designated radioactive toilet. Have you ever peed in a room with a radioactivity symbol on the door? I'm padding this anecdote out with the amusing details because the scan itself is dull.

Finally, today a lung function test. Puffing in a tube. Not much to report. Lung medicine is one of the many disciplines in which King's is world class. But the waiting room in the chest unit is forlorn. A smell of stale smoky breath. Lung disease is treated by society as a consequence of behaviour: a punishment. Blood cancer, by contrast, is romanticised: clean, innocent. **

"What can you say about a twenty-five-year-old girl who died? That she was beautiful. And Brilliant. That she loved Mozart and Bach. And the Beatles. And me." 
Love Story - Erich Segal 

There's not much fair about that distinction. It's all disease. And we're none of us blameless. Still, the chest unit always makes me grateful that I am not required to shoulder the burden of responsibility for my predicament. It's bad enough living with the disease, without the guilt.

"Cycle 1 Day 1" is set for next Wednesday. Then the real pill popping begins. Those who see me out and about should anticipate that I might not be at my best on Thursdays, for the foreseeable future.

The little red sausage is a c.1cm piece of my spine,
removed with a "trephine" (like a surgical apple corer).
The other outputs of the BoMB.
Sucked right out from my deep inside
Before you play 'spot the willy', I'll remind you this is an image of a heart.
And actually not mine, but one I found online.
I'm not supple enough to have snapped any screenshots during my scan
The exciting stuff enters the room
The exciting stuff going in
The exciting stuff going out

* This song fails many of the normal criteria for inclusion in Radio M. It's frankly crass. It qualifies on nostalgia grounds alone, reminding me vividly of the train trip to Paris, when I was 13, on a school exchange. Bad Swedish pop/rock is a dirty secret of mine. One of these days, I'll find a space here for Ace of Base. Maybe Roxette. Probably not Abba.

** For more on the culture surrounding disease, read 'Illness as Metaphor', by Susan Sontag. She observes leukaemia's role as the ultimately blameless disease (a position previously held by tuberculosis, until tb was re-evaluated once it had been discovered to be infectious). All disease is tainted by some assumption that disease, behaviour and character are intertwined. It's easier to perceive illness as consequent on behaviour - risk taking, lifestyle, choices. And implicitly it enables us to take credit for wellness, to distance ourselves by something more than chance. Victim blaming is very persuasive. Sontag also coined the term "Kingdom of the Sick": an expression beloved by me, and also by my friend Wendy, who died last year, and whom I miss sorely.

Friday, 12 January 2018


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

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.


Thursday, 11 January 2018


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, hypnotizers; 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

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


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


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


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


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


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.


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: