Running

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 ...

Countdown

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.

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

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.

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