Wednesday 7 March 2018


Thank you for the party, but I could never stay. Many things, on my mind. Words, in the way
Thank You (Falettinme Be Mice Elf Agin) - Sly & The Family Stone

Thank you

The last few weeks have been hard. On top of everything else, a virus finally got the better of my immune system at the weekend. In combination with the aches, the anaemia, the endless cycle of drugs, the long time horizon in front of me... it all adds up. I suspect that the relentless bloody anaemia is the real villain. I'm getting by with about a third less blood than my body really needs. I'm heartily sick of the whole thing. No matter how soon now it feels better, it will not be soon enough. I posited an idea to Marisa the other day - conjured out of my imagination - that maybe the sudden death of myeloma cells could be a cause of sickness and pain all of its own. It turns out, with a little research, that this is a real thing - "tumour lysis syndrome". So maybe I'm feeling unwell because there is a lot of dead stuff in my bone marrow, and associated crap swilling in my depleted blood. That's one possible, positive, explanation for where I am. But whatever the reality, I simply have to persevere. It'll be a month or so before we're in any position to review progress.

So... I'm feeling a little better today... my head is above the water... I want to take the opportunity to acknowledge the group of people who are quietly, unobtrusively propping us up, right now.

I'm writing this post to say "Thank You", to you.

You know who you are.

When I'm least well, it actually falls harder on Marisa and the boys, than it does on me. Because they have to keep the normality going. Home life is not the same with a partner/parent who is only half present. One who rarely makes it to the breakfast table. My role, by comparison is straightforward. I just have to take the pills. There's not a lot of point me moaning about it, either. Myeloma looks a lot like laziness - as long as I just lie around doing nothing, I'm normally OK.

So I am very, very grateful to all of you who are doing so many things to make it less arduous for those who have to live with me! You are oiling our wheels by helping the children get to and from their schedules. You are bridging gaps (or papering over cracks) by including them (taking them out sledging, for example, last week). You are ensuring that they get out of the house, and that their lives are not constrained by mine. You are feeding us - heart (cake) and soul (meals). You are there for Marisa to hang out with - whether its a mid-week evening or a last-minute loose-end Sunday. You are making plans with me, and then not caring when I endlessly cancel and reschedule. And a load of other things too.

Taking an interest in us. Checking in on us. Looking out for us.

You are quite a big group of people, which is very flattering. Some of you are further away, from where it isn't always easy to make a hands on practical difference. But it really does make a difference, to us. All of it. Every outstretched hand. I cannot conceive a better definition of friendship. I won't get to thank you all face to face. Anyway, it would undermine the whole interaction if I did. So...

Thank You. All of you. I cannot really express how much it means to me.

Maybe I was naive to imagine that I might sail through this chemo less grimly than last time. Though I suspect, with a little hindsight, this will transpire to have been a relative blip. However it pans out, I know a much more profound "blip" awaits us later in the year when I have to go through another SCT. Only after that will we be able to stand on our own 10 feet again. In the mean time, stick with us, please.

There's some very nice soup in the fridge, which is where I'm going now.

Today is my 5th "birthday" since my SCT in 2013. Almost five years treatment free. Hopefully, that will be the pay off from SCTv2 too. I looked back through 5 years of posts on dialm, wondering about the most important question... which artists get most airtime. Only three have featured three times: Neil Young, David Bowie, and Tame Impala (who are a special case... where dialm started). A few more have appeared twice: Foals, Primal Scream, Ride, Rudimental, Scissor Sisters, Simon & Garfunkel, Teenage Fanclub, The Shins, Smashing Pumpkins. That seems like a fair snapshot of me. My music collection always did have an unexplained overweight to the letters P, R, S and T. Is this relevant? Is it even interesting? I have a feeling the steroids are kicking in again... which will be my subject matter when I next write...

Thursday 1 March 2018


Here he comes, he's all dressed in black. PR shoes [*] and a big straw hat. He's never early, he's always late. First thing you learn is that you always gotta wait. I'm waiting for my man
Waiting for my man - Lou Reed

End of Cycle 1 ... Neutros = 1.4 ... Hb = 9.8 ... (KFLC tbc)


Those who've seen me around - probably walking a bit unsteadily, certainly wincing - will know my last couple of weeks have not been good. This is in part due to back pain and bone pain. I'm not certain what has caused it all to get worse: whether it is my myeloma progressing; or whether I've aggravated it; or whether it is my body becoming resistant to the painkillers; or whether it is the adjustment/accommodation into the start of treatment. Whatever the cause, it hasn't been much fun. On top of this, I'm feeling even more out of breath than before.

(Plus, I have the ups and downs of steroids to contend with. But more on that another time.)

In summary, not great. I have been reminded - as if I needed it - quite how grim myeloma can be. Though it could, of course, all be a lot worse. And I'm optimistic that the worst of the bone pain is coming back under control. Hopefully the next few weeks will be less arduous than the last.

When I arrive to get my new prescription, the doctors take it all quite seriously. My anaemia is becoming a real concern, but there's nothing to suggest the drugs are making it dramatically worse, so no reason not to continue the treatment. We won't have any meaningful feedback on whether the drugs are working, for another month (they took a blood sample today, but it takes a week to get the result, and anyway, one result on its own won't tell us much). So, we continue on the current course.

They suggest to substantially increase the doses of my painkillers. Hopefully I can return to some quality of life that is a little more bearable. Living "in" it, one sometimes lacks the perspective to see what's going on. It is only when the docs ask me the clinical questions - what is the pain like, how has it changed over time - that I appreciate that living as I have done of late is not OK. It's not just part of the process. It's not my lot in life. It's not just something I have to put up with. It's not just something I have to keep quiet about. Actually, I have a right to expect better, to demand better. Better, in the immediate sense, meaning stronger drugs!

One cycle down, 3 or 5 to go.



A little about the second drug in my treatment triad: thalidomide, of which I currently take 100mg each day. I'm intrigued to be taking thalidomide, because its name is so arresting, so shocking. There isn't a medicine on the planet with a worse reputation. Originally marketed as an anti- morning sickness medication in the late 1950s, thalidomide did appalling damage to the unborn children of unsuspecting mothers-to-be, before being taken off the market again in 1961. Having failed patients so badly in the past, the medical profession is understandably making a significant effort to avoid any more unborn children being exposed to thalidomide. This basically means ensuring those of us taking it don't procreate. I'm not aware of any evidence that thalidomide can affect a baby from its father, but no-one should even want to let that risk exist.

My supply comes in rather glamorous packaging - practically gift wrapped - and with extensive instructions and warnings. The hospital checks up on me too, by asking all sorts of very personal questions. If I were female, they would insist on regular pregnancy tests. I can be grateful of being spared that intrusive indignity. Frankly, it is all a little unnecessary: having managed to have only the children I wanted to, these last 30 years, I have no intention of letting my guard down now.

The thalidomide crisis/scandal served to demonstrate the necessity for proper clinical trials, and to show the need for proper processes to manage and monitor drugs. It is also a striking example of the pharmaceutical industry failing to live up to its responsibilities. It is an important story, but it is not my story.

The reason thalidomide proved so devastatingly dangerous was, ultimately, the reason it was considered as a possible cancer treatment. The deformities in unborn children were caused, we know now, by Thalidomide impeding blood vessel formation. But it wasn't until the mid 90s that this property (called "antiangiogenesis"), was recognised and considered as a possible cancer treatment. Surprisingly, it turned out to be most effective in blood cancer - a cancer where one would intuitively imagine blood vessel formation is not a factor. (Do myeloma tumours have blood vessels?) The pharmacology is complex, and the effects of thalidomide are still not entirely explained. It does a number of things, but we don't really know which of them gives it the anti-myeloma properties. As well as stopping new blood vessels from developing, it is known to inhibit the development of the cells in the body tasked with breaking down old bone ("antiosteoclastogenesis" - just rolls off the tongue!). One of the symptoms of myeloma - the biggest single problem, for me - is that it alters the balance between bone destroying and bone building cells, so that bone is destroyed more quickly than it is replaced. Thalidomide appears to act in the opposite way, but it is not clear whether this helps to explain why thalidomide kills myeloma cells. Maybe it is just a bi-product of interfering in the same processes.

Thalidomide and the other drugs that have more recently been developed in the same family (lenalidomide and pomalidomide, which are presumably working on the same pathways), are not completely understood. We know they work, but not exactly how. You'd be surprised how common that is in medicine. This group of drugs are classed as "immunomodulatory", but given that they are used to treat myeloma, a disease of the immune system, the classification really doesn't tell you much!

Thalidomide is often part of people's very first ("front line") treatment. When myeloma relapses, it is normal to move on to different drugs; the general premise being that the disease is likely to become resistant to drugs it has been exposed to before. As it happens, I didn't take it last time round (because it wasn't part of the trial protocol I participated in). If it weren't taking it now (this time round it is part of my trial protocol), then I think it is quite likely I would have ended off missing it out altogether. That it could easily not have featured in my treatment at all, I find remarkable, considering that less than 20 years ago it was the very first available alternative to old school chemo. That shows how quickly the treatment options have changed and are changing. It is quite likely that I will take its siblings - particularly lenalidomide which seems to have the best combination of effectiveness and fewer side effects - at some point later in my journey.

The side effects of thalidomide are basically that it can suppress bone marrow function. So it can cause or exacerbate neutropenia (weakened immune system) and anaemia. Given that these are problems I already have, there's a risk that things get worse before they get better. That's how it feels right now, with me puffing at even the slightest exertion. Still, I haven't been struck down with any infection (yet) and for that I must be grateful.


(* PR shoes = Puerto Rican, i.e. "Fence Climbers". Not, as those of us in the trade might incorrectly surmise, Public Relations shoes. Though in spivviness at least, if not in practical law evasion features, the difference isn't necessarily great.)