Today

Who knows? Not me! We never lost control
The 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 rules - to give an honest account of my 'eloma, not indulge in publishing a diary of my life. So I will say just 2 things about the last couple of months backpacking, with the kids, through Costa Rica, Nicaragua, El Salvador and Ecuador.

The first is that I am profoundly grateful that we have the ability (financial and logistical) to be able to take such opportunities.

The second, from the perspective of one who no longer takes life for granted, is how important it is to live in the moment. Our lives - mine, yours - are too short to fritter away, toiling endlessly for the delayed gratification of all the things we might do in the future. There is only today. I learned recently that a client of mine - a few years younger than me - has died, tragically, in a car accident. So I'll say it again: there is only today. It is up to us to make today count.

It has been well over 4 months since I last knew my light chain levels. I set off travelling without the most recent score because the lab results had been delayed. The news today? Meh. My light chain levels are increasing linearly, more or less, from 135 in September, to 160 in November, to 195 today. My consultant now defines it as "biochemical progression" but not yet "clinical progression".

So the only question is how long that distinction holds. Apart from a brief infection and a lot of self induced rib pain after one too many Costa Rican "superman cables" (like this - but that's not me in the video), I've been feeling fine. And it is possible that my light chains could get right back up to 500, where they were before my stem cell transplant, without me feeling ill. Last time round, I recall I felt pretty crap at those levels, but it is difficult to tell, because last time round I had a lot of bone damage to contend with, as well as the legacy of 6 months chemo. Who knows (not me).

My neutrophils are ominously low, but they seesaw all the time. Still, 1.4 is not really good enough. Much lower than this and I would be clinically neutropenic. And I'm a bit anaemic too. So, we're upping my blood test frequency, to keep an eye on things. And if it doesn't improve, I have the usual threat of a BoMB to look forward to, to check that we're not being fooled by my myeloma having mutated into a form that no longer secretes so many light chains.

The process of getting appointments and blood tests to coincide seems to be getting no easier. Much to-ing and fro-ing today. We've booked in an appointment in 5 weeks time. But the system will only accept even numbers of weeks. (Why?) So right now the appointment exists in my diary and the doctor's, but not on the hospital's computer system. Blood test requests have to be posted against an appointment. I now have (future) March blood test requests posted against my (previous) February appointment. I suspect this will not work out smoothly when I attend the phlebotomoy department. I point out to the doctor, again, that the system is broken. He agrees, but then adds:
"Of course, the most important thing is that I get your bloody results"
I can concur with that.

* Ben has been studying the solar system at school, and his class did a quite brilliant assembly on the subject, as part of which they played and sang "Star man". I was concerned that 10 year olds don't know the difference between David Bowie and David Walliams, so I have enjoyed the excuse to play some of my favourite Bowie songs at the breakfast table. (I don't have any favourite Walliams songs.) It is rare indeed for me to feel genuinely affected by the death of a musician. But the world is a slightly drabber place, without David Bowie.

Ausente

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.

Priorities

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 fall
One Way To Go - The Verve

Checkup... KFLC=75 

Wish I'd kept my ticket *

My clinic appointment clashes this month, with dropping Lyndon at nursery (somewhat tearfully, he's still getting used to the separation) and then watching Gyles' class assembly. (Did you know that around 13,000 houses, and 89 churches, were destroyed in the Great Fire of London? Gyles does.) I break it to Gyles over the breakfast table that I can't come to assembly. He is crestfallen.

And then I think about why I go through all the hoops and loops of MM in the first place. My priorities. So, I go to nursery and then assembly. And then I am very late for clinic, and in a hurry because I must get back to nursery by 12:30. After waiting for a while, I ask the myeloma nurse to help me jump the queue.

My light chains are just a little higher. Rationally, I know this is still meaningless, and even if it is an established trend, it means nothing of itself. My light chains could rise at the rate, of a few points a month, almost indefinitely without becoming problematic. It will be the point where increase accelerates that counts. And the numbers now give no indication of that. Still, emotionally, I'd love it if next time round the score hasn't gone up again. Here's hoping it is still less than 80, come January.

I'm sure the consultant could say all these sorts of things to me, along with a thousand other platitudes, but I'm in a hurry, so I don't wait to find out. 75. Yeah whatever. See you in 8 weeks.

On the way out I ask the receptionist to change my regular appointment time so I don't have to hurry up the hill from nursery. 10am would be good.

"I haven't got 10am", she says, "how about 9:55".

Anyone who has regular hospital appointments will understand why I struggle to stifle a giggle at that.

* Seeing The Verve at The Astoria (RIP), in 1995, was one of the greatest gig experiences I ever had. As it turns out, it was only weeks before they split up (and then reformed 2 years later, and promptly made it big). If I'm passing the Crossrail building site on Charing Cross Road, where the Astoria once stood, I'm always reminded of that night. Their sound was so all encompassing and cool, the lighting was fantastic and the crowd was totally wrapped up in it. I'm glad I gigged so much in my 20s, because there were so many amazing experiences - such as Thom Yorke, in 1994, sitting on stage playing acoustically some of the songs that would later appear on Radiohead's breakthrough album (The Bends). There was a lot of crap too, but we thought it was good at the time.

If you think that you're strong enough. If you think you belong enough. Nice dream
(Nice Dream) - Radiohead

Slowloaded

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 time
Loaded - Primal Scream (feat. Peter Fonda)

Checkup... KFLC=69...

Summer en Sussex. I spent a lot more time with the children than I did working, apart from two trips to New York. It was very good. We braved the sea. We visited local fairs and festivals. We ate a lot of pub lunches. We walked some truly beautiful woodland and countryside. East Sussex is a gem. We are so lucky to have a piece of it. Only when the blue skies turned to grey did we head back to London.

Now autumn is coming, I'm overseeing the building work on the house. It will, eventually, be amazing. I get to have some very Grand Designs conversations with glass suppliers and kitchen designers. And standing on our roof, surrounded by scaffolding and power tools is exhilarating - as is the steel frame in the garden, which currently resembles some kind of industrial homage to a minor Greek temple. In the short term though, it is quite messy, and occasionally stressful.

It's not exactly a routine, but maybe I'm destined never to have a routine any more. It is only natural to crave routine, though I suspect life is actually more fun without one.

I don't go to myelomaville much, right now. I'd like to say I never visit, but that would be a lie. I still go online and read stuff. Maybe I should stop? But occasionally, I stumble across something pertinent. Recently I read something which shed a little light on a contradiction that has puzzled me for some time. The conundrum is this: cytogenetic tests classify my myeloma as high risk (del17p). Simultaneously, my beta-2 microglobulin levels classify it as low risk. What does that mean? I now understand a little better (if you are interested...)

The specific high risk chromosome damage in my myeloma's DNA means it is missing the gene (TP53) for a protein that provides an error-checking function in cell division (when it finds errors it triggers the cell to die). DNA replication is complex and prone to errors. Cells with faulty DNA are liable to go rogue (be cancerous). Over time, cancer cell colonies get more mutations and so become more problematic. With the error-checker out of action, each replication is more risky. My myeloma dice are more loaded than average.

Meanwhile, beta-2 microglobulin indicates for speed of replication. My low levels show my myeloma grows slowly (right now). My dice may be loaded, but they get thrown relatively infrequently. So I really am simultaneously at high and low risk. I may, with luck, get very long remissions. When I relapse, it probably won't be very pleasantly (but then, we kind of knew that much already).

This month's light chain score is up to 69. That is higher than for most of the last year, but still within the parameters of meaninglessness. So we will continue to monitor it, as we must always do. Rational-Alex understands that. Emotional-Alex finds it a little more tricky. Fortunately I am, on balance, quite a rational person. Though I worry that I'm gradually suppressing Emotional-Alex, and I don't know if that changes who I am.

I wait 4 days between having my blood taken and getting the test result. Tick tock. Some people describe feeling quite anxious in the days before clinic. I can usually ignore it... But then I have to sit with the doctor and answer all the questions. Have I had any fever? Am I losing my sense of touch? Am I in pain? Are my bowels ok? Am I coping mentally? No/no/no/yes/ and "I guess so". Much of the rest of the time, I am a happy, grounded, person. But at these moments I yearn, viscerally, to be free.