Who knows? Not me! We never lost controlThe Man Who Sold The World – David Bowie *Check up… KFLC 195 … Hb 11.7 … Neutros 1.42 ..Living in the moment on Big Corn Island, Nicaragua.This is not a travel blog, and I still endeavour to stick to the ru…
Welcome to Tijuana – Manu Chao
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.
You’ve got to lift yourself up so high, you can’t see the ground, you don’t hear a sound. You’ve got to move it up so slow, you see it all, you’ll probably fallOne Way To Go – The VerveCheckup… KFLC=75 Wish I’d kept my ticket *My clinic app…
We want to be free. We want to be free to do what we want to do. And we want to get loaded. And we want to have a good timeLoaded – Primal Scream (feat. Peter Fonda)Checkup… KFLC=69…Summer en Sussex. I spent a lot more time with the children t…
Phew. When I awoke this morning, I ran (that’s right, ran) to the front door by my coat stand to ensure that my handbag and purse were safely contained in my flat, and what do you know, hidden behind my collection of coats was my beloved Walking Stick standing there like nothing was wrong. Man, […]
When one is younger, they are excited about the bright glow that greats them on a morning after it has snowed the night before. Not me, today, I was excited by the grey, damp day which greeted me this morning. I was excited by the dullness of British weather because I knew that this meant […]
I was born a slave. Sure, I know, I know. Abraham Lincoln and all that… The Emancipation merely took ownership out of the equation, it didn’t abolish slavery, that was just the way that the media and government framed the concept of owning another individual. But slavery was and is alive and well and lives […]