Saturday 28 November 2015


Welcome to Tijuana. Con el coyote no hay aduana *
Welcome to Tijuana - Manu Chao

(con permiso)

We've packed our bags, and ordered our affairs. Today we  five sling our backpacks over our shoulders and take off on an adventure for a couple of months. To do so, aside from the travel planning itself, we've had to negotiate our way out of work and school, and make surprisingly many practical arrangements for our own absence. Getting to this point of almost-readiness has been somewhat frantic, because we only made the decision at short notice. With who-knows-what looming, our focus is sharp on living the life we have.

We're not going travelling because of myeloma. We're going because of wonderlust, our decades-old fixation with exploring the new. We're going because we want the boys to share in our passion, and to grow up responsible, globally aware, young people. We're going because we believe that time spent together, and diverse experiences and stimuli, are an education in their own right. We're going because it's fun.

Sure, we're going right now because of myeloma - because we've learned to take our chances when we can. We're acting in good faith, trusting that the next 2 months is still safe travel time for us.

I had my bloods taken this week, and an appointment in clinic on Friday. I've been unsure what to expect. My last set of (rubbish) results were the trigger to planning this trip, but as soon as we'd made the decision, I had self-doubts. Maybe my next test results will be better than expected! Maybe there's no rush! (A warped variant of impostor syndrome?) This has been followed by increasing sensations, over the ensuing weeks, of achy ribs and shortness of breath. Maybe things are accelerating! Maybe it's too late!

In clinic, I report my symptoms.
"When did you start feeling these symptoms?" asks Dr Crapulous.
"Just after you told me my myeloma is probably coming back", I reply.

In a clear demonstration that the relentless advance of science does not apply to Kings' phlebotomy department, it transpires that they can no longer get light chain assay results back within the week. Asking too much, of course, to expect anyone to have notified me of this at a relevant juncture. So I'm in the silly situation of a clinic appointment without the crucial results. We smile at each other slightly pointlessly across the desk. I ask DrC for a definitive answer of how long the test does take so I can schedule my visits accordingly in future. He calls the labs, only to be told he has dialled the wrong number because light chain assays are not part of haematology. Which is news to both DrC and me: have we all been in the wrong clinic all these years?

Sometimes it is all rather Kafkaesque in the NHS. They've now defined a process whereby I must make my clinic appointment via the receptionist, but get my blood tests ordered directly by the consultant. I leave the consultation to go to the front desk, while my highly qualified clinical trial oncologist sits waiting until I can return with a consultation date, upon which he can book the blood tests to precede it, at an arbitrary interval because the labs can't confirm what branch of medicine we are in let alone when they might be able to get the results back to us. I observe to DrC that there appear to be some inefficiencies inherent in the way things are currently set up.

In the meantime, we have to read the tea leaves of my blood count, for clues to my health. Nothing much to report. Notably I am not anaemic: the shortness of breath is either hypochondria or lack of fitness. With nothing more to go on, my ribs remain an enigma. It seems likely that, even if my light chains are creeping up, they are still a long way from being problematic. And therefore my next appointment can wait 'til Feb, and the trip is on. I can look forward to learning my light chain score, by email, somewhere on the road.

¡Nos vamos! ¡Hasta la proxima!

* "Con el coyote no hay aduana" = lit. "With the coyote, there's no customs"; "coyote" being Central American slang for people smuggler. We're not going to Tijuana: done that before; certainly not somewhere you need to go twice. And our paperwork is thoroughly in order.

My abiding memory of crossing the border from Tijuana to San Diego was having a large bag of fresh cherries confiscated from us by a US customs official. We'd lovingly picked them (cherry-picked them, indeed), only minutes before, so we were a little loth to see them go. My sister asked if we could eat a few, before proceeding. "It's too late for that" came the reply, with all the friendliness one is accustomed to from US border staff, as our beautiful cherries dropped into the bin.

Thursday 12 November 2015


You shut your mouth. How can you say I go about things the wrong way. I am human and I need to be loved, just like everybody else does
How Soon Is Now? - The Smiths


I am minding my own business when facebook offers me:

15 Tips For Living With A Chronic Illness Like Multiple Myeloma

I scan it idly (you don't need to) until I reach #4:

"This illness is in your life to teach you something. There is a reason you are here. There is something that this experience can teach you that you apparently need to learn."

Stop the tape. Quick trip to foot of stairs. Channel my inner Tim Minchin:
"Wow. That's a good point. Let me think for a bit. Oh wait, my mistake, that's absolute bullshit." *

It's the same as when people say (and believe me, they do) that getting ill is all part of "God's plan". What kind of God, and what kind of plan, exactly, that might leave my children fatherless? And just what is it, in which I was so deficient, that I needed myeloma, in order to learn?

When someone gets knocked down and killed, is that "God's plan"? When someone is born into abject poverty, is that "God's plan"? If you smoke 30 a day and live to 110, is that "God's plan", or is it because you were so wise and wonderful you really had nothing you needed to learn through adversity? I'm guessing its easier to see these plans of God's from the vantage point of affluent good health.

Or... "God only gives you what you can handle". ** Ah, so it's my fortitude that is to blame. Other people think "I don't think I could bear it, if I had cancer". But that's OK, because if they can't handle it, they won't get it, right?

No it doesn't.
My beef here is not with God (we're on quite good terms right now, I think), but with the stupid, egotistical ways people frame illness. Really, these kind of sentiments are the self centred indulgences of the healthy and inconsiderate.

Yes; I've learnt a lot since I got mm. In some peculiar ways, the experience has added to me. But that does not justify it, or legitimise it. It doesn't explain why it happened to me. Yes; I have found amazing reserves of strength over the last few years. But that was because I had to, not because I was any better prepared for this than anyone else would be.

I cannot convey, strongly enough, how much I hate this kind of comment: this thoughtless narcissism that permits people to believe that the difference between us - the sick and the healthy - is of some significance; that there's a reason I'm ill, and by implication, a reason they're not.


* If you've never heard Tim Minchin's "Storm", I cannot recommend it highly enough. (Some strong language.)

** "God only gives you..." comes, indirectly, from 1 Corinthians 10:13, where Paul is talking about temptation: specifically idolatory. But people glibly change the context.