Friday 9 December 2016


My body's made of crushed little stars and I'm not doing anything
My body's made of crushed little stars - Mitski

Check up ... KFLC = 381 ...

I'll keep this brief, jumbled and confusing - in honour of today's appointment.

When I arrive, at 11:15, DrC is clearly in a rush. The first thing he asks me is about changing our appointment times.
"This clinic is crashing! I have too many patients! Can you come early morning?"
"Can you come earlier? I start at 8:30!"
"It suits me much better to come early. If I drop the kids off at school and come straight on, I'm here by 9. I only came later today because that is the appointment I was given"
DrC rolls his eyes.
"Ignore that! Come early! OK, so we can continue!"

By this stage he has already opened my file and interjected:
"Your light chains are plateauing!"
Plateauing equals no news, which is very good news. Which definitely wasn't what I was expecting; partly because gloom always consumes me in the days before clinic; partly because this week coincides with my first virus of the season - a minor grey-out - which always makes me feel pathetic; and partly because my rib pain is noticeably worse, these last few weeks.

As anticipated, my MRI report is not yet complete. DrC flicks it open. Glancing at the screen it looks to me as though the spine report is in, but the whole body one - which would include my ribs - is not. He says we need to discuss some possible damage, but he'd like to wait until the whole report is there before doing so. He clicks it shut again. Anyone would think he is in a hurry. But I've already seen a little of it, and I'm not going to be fobbed off too quickly:
"I see the report mentions damage to T1-T3. That's certainly not something we've ever discussed before".
T1-T3 would correspond to the vertebrae behind the top of my ribs. Until now I've always understood my problems start from T7 downwards. DrC offers one of his peculiar metaphors:
"If your tyre has a hole, it may go down. That is progress for the car, but not for the hole"
By which - I think - he means that my vertebrae may still be deteriorating from old lesions. That could explain me having new pain symptoms, while the myeloma itself is not going anywhere.

I guess that's good news of a sort. Though I'd prefer my skeleton to stop crumbling, I'm happy enough to not be booking in for chemo. I'll get a better understanding when we can see the report for my ribs, or indeed stop long enough to have a proper conversation. There are obvious questions. The most prominent being: Can we do anything to stop my bones breaking? and: Are we sure my myeloma is plateauing, and not just secreting less light chains?

These answers will have to wait until January. I go to the reception to get my next appointment.
"The only time I have available is 10:45" she tells me.

Wednesday 7 December 2016


Nothing else matters; I don't care what I miss. Company's okay; solitude is bliss. There's a party in my head and no one is invited. And you will never come close to how I feel
Solitude is bliss - Tame Impala

Fate clearly couldn't resist my claim that "one can’t really have too many MRIs"

I am booked in for a "whole spine" followed by a "whole body". These sound like spa treatments, but sadly are not. They are MRI scans.

The drainpipe, Goatchurch
For the spine one, I have to have my neck restricted with a clamp across my throat. It takes a few goes to get my back flat enough to actually fit in the clamp so that it can lock in to place. It's not a lot of fun lying on the gurney with one's head clamped in place. I'm not prone to panic or to claustrophobia, which is a good thing because the inside of an MRI scanner is pretty close. It always reminds me of the "drainpipe" one has to wriggle through at the bottom of Goatchurch Cavern in the Mendips (I can't quite believe I used to think that was fun!).

The MRI is noisy, so inside my head clamp, I'm wearing headphones, through which I can also hear the technician. Because there can't be any metal bits, the headphones are pneumatic - consisting of hollow rubbery hoses rather than wires - like one used to get on aeroplanes, long ago. The same is true of the panic button they place in my right hand - a squeezable rubber ball attached to a rubber hose. They offer me music, but previous experience tells me that's a bad choice. For a start the machine is so noisy one can hardly hear the song well enough to enjoy it. But worse than that, there's the risk I find myself being subjected to James Blunt, or something. Would it be OK to press the panic button because I wanted them to change the tune? I've never squeezed the panic button before, but I do so today almost immediately, before we're really started, when I realise that the cold I have come down with, combined with the head clamp, means I am in danger of drowning in snot. To be honest, blowing my nose doesn't help much (Rib pain means I'm not so good at vigorous nose blowing anyway - or sneezing, or coughing, or laughing). In the end I resign myself to mouth breathing. My throat was pretty sore before we start; by the time we finish it is raw.

Whole body MRI apparatus (with person inside)
The whole body scan requires bits of kit all over me, meaning that I am now effectively tied to the gurney at chest, wrists, thighs and ankles with all sorts of pads and bits of stuff on and around me. I've also got another bit added to the top of my head clamp so my head is basically encased. This scan is going to take around 45 minutes. As the gurney slides into the scanner, the panic button hose catches on something and I feel it "pop" out of the button. I better not panic then, because I can't move, and no-one can hear me.

This MRI is particularly noisy. It has repetitive cycles of beeping, backed up with low jolting bass that is so powerful it physically shakes my body. It reminds me of the techno room at Ministry of Sound (c.1996). As one entered the room, emerging from an almost pitch dark corridor, one was met by minimal white and strobe lighting, and pulsing techno that went beyond any sense of melody to just an all encompassing vibrating, thumping sound. This MRI seems a bit like that. But maybe it's just because I am wrapped in this peculiar head gear, and drowning in snot. 45 mins passes. But I'm glad when it's all over. Relaxing it is not. With myeloma, even lying still can be hard work.

Did I mention that I also have to have some marker dye injected, so I have a canula in my right forearm? Or that I periodically have to hold my breath for various intervals while the machine scans my ribs?

I have at least learnt from experience to arrive wearing trousers with no metal - no zip, no metal fly buttons, no rivets - which means I can go through the procedure clothed, rather than in one of those bum-hanging-out-the-back gowns hospitals have to offer. Small mercies.

I'm back in clinic on Friday. I suspect the full MRI report won't be available. But given the amount of problems I have been having with my ribs these last few weeks, I'm not overly optimistic about how this clinic appointment is going to go. I'll let you know!

Wednesday 9 November 2016


You're here, and you're mine. I haven't seen you in a long time
Longtime - EMF

Check up ... KFLC = 376 ...

I went to my most recent clinic appointment in a little trepidation. I have been getting an increasing amount of pain in my ribs, and I wondered if this would be the month when, against all my instincts, my blood counts jumped abruptly in the wrong direction. Fortunately, it was not. Things continue on their steady course. Worse, but only in line with expectations <like>.

If only the rest of the world were the same. Sometimes, the world’s problems seem greater than mine <sad>.

DialM has not seemed much of a priority, of late. However, I owe you and update. I have realised that, assuming the numbers don’t give me away, my doctor’s perception of my health, and so my need of treatment, will come down to how much I complain. I find myeloma pain difficult to describe. Actually my ribs are more uncomfortable and annoying than actually hurting. How bad is it, really? But if one frames the question as “Is it bad enough to make you want chemo?” then the answer is clearer. No. It is not. I did consider, therefore, telling the doc that everything is fine.
But honesty won out, and the net result is that another full body MRI is now booked in, and I have another clinic appointment in 6 weeks, rather than the 8 weeks I’ve been operating on recently.

I went to the Science Museum with Gyles the other day. There’s a great new area of hands-on stuff. We had fun with a display consisting of a rope tied between two revolving wheels. As the wheels spin at different speeds (which you can control) the rope between them forms into standing waves. I wonder if my experience forms into emotional waves – highs post-clinic, lows pre-clinic with clinic appointments serving as nodes. Certainly I felt better after this appointment than before. Though my ribs still cause me trouble, which suggests that is an “objective” sensation (there is of course no such thing) rather than purely psychosomatic. Let’s see what the MRI says. From a patient’s point of view, one can’t really have too many MRIs.


And of course, I am lucky that I have had well over 3½ years treatment-free. One of my mm friends (I won’t credit her here by name because she is a more modest soul than me, but this is her metaphor not mine) recently described myeloma as an awful night hike, where you’re feeling your way, hands outstretched in the dark, negotiating rocks and ravines, carrying a massive backpack. In front in the blackness, you can hear comforting voices “I stood on a snake, but I’m OK”, “I just had a fight with a grizzly bear”. I think that captures the experience very well indeed. I am grateful to those on the path in front of me, for their candour and support <love>.

And also happy that my walking has been uneventful for such a long time <laughing>.


Those of you connected to me on facebook will know that mostly right now I just bang on about politics. This is not the place for that, save to say 2 things. Firstly I had the odd experience of posting something the other day which “went viral” <wow>.

A comment on a newspaper website, backed up with a rude joke, amused more people than I could possibly have anticipated. It rapidly appeared all over facebook and twitter, garnering tens of thousands of shares and retweets. For 24 hours my phone buzzed and beeped as my own comment bounced around in cyber space. I think I just had my 15 minutes of fame. So at least I can cross that off the bucket list.

Secondly, and a lot more seriously, people say many stupid, naïve and reckless things these days, stated as though they are facts, and as though they have extra gravitas for the specific reason that the person talking doesn’t have any experience or evidence to back themselves up. One of the claims is that the UK is going to grow more doctors, and be able to boot out all those horrid foreign ones. My consultant is Hungarian. I don’t know how long he has been training to get to where he is, but I’m guessing it's basically been his whole career and he’s as old as I am. I value him very much. I don’t want to live in a country governed by such stupidity that we’d make people like him feel unwelcome. The NHS will be poorer, and people will die, because of brexit. I’m sure there are already medics who have decided to leave, or not to come here, since June, and we can’t simply replace them because their skills are the product of many years of work <angry>.

Sunday 4 September 2016

Wildly unsurprising

Big boss, big time, business. Make me your mark and I’ll take you one by one *
Big Boss Big Time Business - Santigold

Checkup ... KFLC 341 ...

Are you bored of hearing about my slowlapse? The heavens know I am. Here's another instalment. All so very portentous, and yet not much new in the news. My light chains are up again. The absolute figure is somewhat alarming, being more than half way back to where I was before my transplant. But the trend is continuous and gradual - increasing about +50 per month now. It was +10 per month 2 years ago; +30 per month one year ago. I ask DrC whether I should be expecting the linear trend to continue until I find myself complaining of symptoms, or if we're waiting for some exponential acceleration. His answer is that cancer is abnormal by nature,
"Like a wild man".
Its progression cannot be predicted.

My own hunch, though, is that the onset will be gradual. And I'd rather have slow myeloma than fast myeloma, even though it may mean I have to return to properly symptomatic illness - bone pain and all - as the cue to treatment. What fun! As for when I can expect this joy? DrC says, again, that he reckons I probably won't need treatment for at least 6 months. But at the outside, at the current rate, it will only be another year until my light chains are >1,000 and I'm fairly confident I'll be symptomatic by then. So back on chemo somewhere between March and Sept 2017, and another SCT somewhere towards the end of 2017 or early 2018. Somehow I have dodged the bullet in 2016. There's no realistic prospect of doing so much longer.

None of this is really news. And right now, I feel fine. Whatever.

Nor does the report from my most recent spine MRI shed much light. My back is wrecked, but it's not about to collapse. My thoracic and lumbar regions are a mess of vertebra compressions and fractures, and there's visible infiltration in my bone marrow, but there's no evidence of imminent likelihood of cord compression. I'll have to hope that the neuropathy in my thigh eventually resolves.

I've been in this waiting loop for a year now. It doesn't half disrupt plan making. Decisions about work, travel, even whether or when to get a puppy, are all stuck somewhere between provisional and impossible. I really don't know. Cannot know. Right now, with the kids going back to school this week, I'm going to invest a bit of time in home making, to which I'm quite looking forward. Next week Lyndon starts school: a day I once feared I would not see. For that I'm grateful. So much so that I can avoid dwelling on the rest.

* The lyric is fatuous. But Santigold puts on a great live show.
Being able to stand up in a gig is another thing I'm grateful for

Friday 29 July 2016

Killing time

You're a water sign, I'm an air sign. Pumped up with Valium, could you get me some?
Sleeping pills - Suede

A nothing-to-report report

Half way through today's consultation, DrC says that he thinks this appointment is a little pointless. Far be it from me to say so myself. But we did know, when we booked it, that we would be meeting without any test results at all to discuss. It could only ever be a chat. And we get enough chats already. But don't let that reality stop the NHS clogging up its own diary, or dragging me back from Sunny Sussex. And I'm not complaining: they only treat me like this because they care.

Still, it sort of bridges the otherwise gaping chasm between appointments that would be the result of me going on holiday next week. I don't think they'd choose to sign me off for months at a time, right now. But I don't ask permission. As I promise DrC this morning:
"Look, if it gets to the point where I can't walk, I'll get someone to bring me in here straight away whether I have an appointment or not."
He looks askance, but signs me off for another 5 weeks. What else can he do.

"So is it even worth me going to get my bloods taken today?" I ask.
Capitalizing on his momentary hesitation, I quickly answer for him
"No? OK,"
But he's not falling for that, and wrestles back control of the conversation. I am to get my bloods taken today. And again in 4 weeks time. At least we will have lots to talk about when we next meet.

I had my spine MRIed yesterday*. It was quite soporific, apart from all the noise.
I wouldn't mind the noise if it was a little more predictable. But it seems to follow no pattern. And I much prefer patterns. Still, I was in there about an hour and managed to defocus my mind quite considerably. Not unpleasant.

The justification of the MRI was that the numbness in my leg may be due to a nerve in my back, This is most likely around the L2 and L3 region **, which previous imaging has shown are fractured.
The images have not yet been reviewed, and DrC declines, quite reasonably, to look at them and
"just make a serious face"
as he explains it to me. We need a radiographer's report. Yet more to talk about next time. Can't wait.

His view is that if there is an identifiable problem here it is probably the result of previous damage, rather than newly active myeloma (that was my assumption too). He also tells me that if there's a nerve pinch due to a compressed vertebra, then he could potentially refer me for more vertebroplasty. I'm in favour of that: it made a massive difference last time. The numbness in my leg is definitely getting worse, not better. It is a stinging sensation now, and quite annoying if I stand for too long.

So for now we can add 'dodgy leg' to the list of 'things which don't count as progression from the point of view of starting treatment', along with 'occasionally achy ribs' and, of course, my light chains. I wonder how long this list can get.

Sighisoara, neither Italy nor Switzerland
DrC asks where I am going on holiday. When I say I am going to Romania, he looks a little surprised, and asks why. I don't think my 'places I haven't been' explanation convinces him much.
"I mean, have you been to Tuscany?" he asks
"Tuscany is very nice", he adds, encouragingly.
"Not just Florence", he clarifies.
"Yes. Like Siena and little places like San Gimignano"
"Well, have you been to Switzerland?" he asks
"The Alps?", he adds, hopefully.
At this point he has the good sense to give up on this line of questioning.

* I'm more than happy to have had another MRI, because if we are making inaccurate assumptions about my progression, the best way to find out is a scan. And unlike CT or PET scans, MRI is harmless. For comparison: a chest x-ray is equivalent to about 10 days of background radiation exposure; a CT scan of the spine is equivalent to about 2 years; and a PET-CT to about 8 years. You really don't want to have too many CT or PET scans. Whereas aside from the cost, and the time, there are no known negative consequences of MRI. From the myeloma patient's perspective, the more MRI scans you get during the process of relapse, the better.

** The human spine is divided into 5 regions. The top 3 regions contain 24 vertebrae: Cervical spine (your neck) 7 vertebrae C1 - C7; Thoracic spine (behind your ribs) 12 vertebrae T1-T12; Lumbar spine (at the bottom) 5 vertebrae L1-L5. The final 2 regions of the spine - sacrum and coccyx - are all fused together. I know my spine is damaged from T7 to L4 - which is basically half the vertebrae. When I get the new MRI results. I'll endeavour to get a complete breakdown (for want of a better word!)

Friday 8 July 2016


Slow down. Slow down. You're taking me over
The Drowners - Suede

Check up: ... KFLCs 264 ... Hb 13.0 ... Neutros 1.6 ...

My slowlapse continues. If anything the increase in my light chains is marginally decelerating of late. I don't think I'll be lucky enough to see it actually plateau, but who knows. And apart from numbness in one leg (another MRI beckons, I would imagine), I have no symptoms to report. All in all, pretty unremarkable.

I get chatting to a fella in the waiting room, who looks amazingly well for only 3 weeks out of his SCT. I recognise the lilt of his accent. He is Zimbabwean and so we drift into conversation. In no time I have his number and an invite to stay in his place in the Highlands. Which is a tempting proposition indeed.

Zimbabwean people really are the world's friendliest, even though their country is a basket case. I wish I could say the same for my own. The last few weeks feels like we are drifting in the direction of unfriendly-basket case. Still, it is nice to have things to worry about other than my 'eloma! I had the pleasure of meeting up with a myeloma-buddy to go marching on Whitehall last week. We had something to talk about, other than ourselves, which is a blessing of sorts.

Friday 27 May 2016

Arithmetic meaning

Sometimes I feel like I'm going down south. Sometimes I feel like I'm over and out
Little Arithmetics - dEUS

Check up ... KFLC = 253 ... Hb = 12.6 ... Neutros = 1.6 ...

Just a little update on the numbers, at today's clinic. My light chains are still increasing without accelerating. The rest of my blood counts are recovering compared to two months ago. We - DrC and I - conclude that the dip was, as suspected, the result of an infection. While my blood counts improve, and I have nothing significant to report ("I got a cold last week. ¡Stop the press!"), I can't really class myself as ill. There's so much worse around me in today's waiting room, and outside. In comparison to some of the experiences I have witnessed in my social circle recently, I can seriously count my blessings.

So I am relapsing, but oh so very slowly. Which is the very best way to relapse, and I think I've got my head round that now. ("Falling, with style"?) After some anxious months, I'm regaining my "Whatever!". Ironic that today I am offered a place in a "fear of relapse" course. Not sure I'll attend. To be honest, I can't be bothered counting the score, let alone doing the analysis, right now.

We - DrC and I - permit ourselves a bit of philosophical chat and crystal ball gazing. I'm increasingly optimistic that it will be early 2017 before I end off back in treatment.

I'm beginning to wonder if DrC has had some kind of bedside manner transplant (a different BMT, rather than a bone marrow transplant?) He says, again, that he is optimistic for me; that there are many options for me. Then he spoils it slightly with a joke about
"standing in the graveyard saying 'oh, we were wrong'"
and finishes off with a statement of the most clumsy profundity
"Of course, not having the myeloma is better".
But I feel he is progressing on his own journey with myeloma, in parallel with mine.

One reason I may be feeling healthier is that I haven't done much work in the last few weeks - a coinciding of natural pauses in my various jobs and responsibilities. I don't feel very much urgency about this. As long as this intermission continues I wish only to enjoy living.

So while the days are long, even if life is short, you'll find me basking in the southern Sussex sun.

Friday 15 April 2016


The river's edge; you jump right in. The current's strong; it makes you spin your arms in a wild rotation
Swim - Madder Rose

Check up ... KFLC = 220 ... Hb = 11.8 ... Neutros = 0.72 ...

Previously, on Dial M...

Chapter one: The dramatic bit (All those fractures! Becoming a hospital VIP! Transplant!)

Chapter two: The heroic bit (Recovery! Set backs! Perseverance!)

Chapter three: The euphoric bit ("Normality"! The wonders of living!)

We pick up the plot...

Chapter four: The confusing bit.

Foggy on the beach (Camber Sands)
Since I started to relapse, late last year, its been hard to work out where I'm at. I've suffered a range of pains and symptoms which could be myeloma, or as much my own imagination. Two weeks ago I had what I can only describe as a grey-out. I guess the cause was viral, and it left me feeling lethargic, weak, despondent. Recovered now, I can at least be certain the experience was real - I genuinely do feel so much better. But of whether it was myeloma, or man-flu, I'm less sure. It's no fun for me - and none for Marisa either - to keep lurching, like this, towards the precipice. I'm increasingly daunted by the thought of going back in to treatment - reminded of what it will entail, and of how crippling it is for me, and my entire family, when I cannot function fully.

Sure enough my light chains are creeping up. But we knew that, and DrC doesn't think that's even very meaningful, because we don't know what number we're waiting for. My κ/λ has dropped again - because the lambda number is back up. DrC says he thinks the κ/λ is not worth worrying about. We're simply waiting for symptoms. I ask him to hazard a guess how long we've got to wait. Among all the usual "could be tomorrow" caveats, he suggests at least 6 months. Which is quite a long time.

Last week (when the blood tests were taken) I was really quite neutropenic. We're repeating the tests today, working on the presumption that last week's result reflected the aftermath of my infection, in which case they should be going back up again by now. He'll let me know, and I'll let you know, if this week's result is going even further down, in which case we have a problem. But I'd be surprised if that's where the story is going.

So I'm going to take my neutropenia as evidence that when I felt grey, I was not imagining it. And that instead of disparaging myself with "man-flu" I should rename these episodes as simply "m-flu", and just accept them as a plot device.

DrC says something nice this morning (I don't think it was intentional). He says
"You are only at the beginning of your myeloma journey"
Which I find quite a compelling thought.
When I was diagnosed, I read that median life expectancy is 4 years. Which was sobering. Of course that number is bogus for two reasons. Firstly because it is out of date. All the drugs from velcade onwards have improved things enormously. And secondly because the myeloma cohort is mostly aged 70+. It is not news that some people die in their 70s.

Maybe we're not on chapter four at all. Maybe this is all just the prologue?

Wednesday 16 March 2016


I wish I could be like a bird in the sky. How sweet it would be if I found I could fly. I’d soar to the sun and look down at the sea, and I’d sing 'cos I’d know how it feels to be free
I wish I knew how it would feel to be free - Nina Simone (composed by Billy Taylor and Dick Dallas)

Check up... KFLC 196 ... κ/λ = 30.6 ... Hb = 13.3 ... Neutros = 1.52 ...

I have spent the last five weeks trying not to focus on my next clinic appointment. The trend in my light chains seems all too predictable, and the aching in my ribs more persistent.

This week's appointment was never going to be straightforward. Dr Crapulous had booked it on an off-week, and my blood tests had been posted to a previous appointment. The phlebotomy department ace their part of the test. But sure enough, when I arrive in the clinic, my name appears on no appointment list. My clinical trial coordinator comes to speak with me. I explain that DrC was insistent, last time, that today would be OK.
"'I'm always here', he said," says I.
She gives me one of those NHS-sympathetic looks.
"He's on annual leave", she tells me.

So they put me on the end of someone else's appointments list. A doctor I've never seen before. And then I wait. After two hours, my myeloma clinical nurse specialist walks past me.
"You've been waiting a very long time", he says.
I grimace.
"Yes, and I have to go in ten minutes to collect my son from nursery", I reply. (Gyles' violin lesson, the other regular fixture in my Friday morning calendar, has long ago been missed.)
"Could you at least print out my blood results?"

So that's what we do, and I don't see the doctor at all.

The print out comes as a bit of a surprise. My neutrophils, while still low, are up a little - certainly no greater cause for concern. My haemoglobin is normal. And much to my surprise, my light chain levels are completely unmoved from five weeks previous. Though the κ/λ has deteriorated, because the λ figure has dropped, which could be ominous, or could be meaningless.

I'd expected my light chains to be up quite a bit, and for DrC (I do so hope he is having a nice holiday) to start further "investigations". I've been steeling myself to resist being sent for a BoMB, and to demand an MRI and/or CAT of my ribs. Suddenly I'm unsure if I should do either, and have no doctor to guide me. And with no doctor to say if I should come back in 4 weeks or 8 (well, 5 or 7 actually, since I clearly need to get back into the fortnightly clinic pattern), I  leave the clinic without another appointment set up, which is frankly wierd (and completely unprecedented - in 4 years I have never not had a follow up appointment booked.)

The Sword of Damocles* swings filipendulously above my head.

* In the original Greek telling, the Sword of Damocles represents the ever present peril facing those in positiongs of power. It is something of a subtle shift that it has come to symbolize, in a modern setting, the sense of foreboding caused by any precarious situation.

Thursday 3 March 2016


Seeking fame and fortune, we walk the streets of London, looking for the crossroads everywhere
Fame and Fortune - The Libertines

Inbloodyvisible *

I've complained before about the lack of awareness of blood cancer; all the euphemisms; the complicated names; the fragmentation. So I should be - indeed I am - delighted that Leukaemia & Lymphoma Research has rebranded as Bloodwise. Not least because it is now inclusive of myeloma in a way it wasn't before.

A bit late now!
However, I'm less impressed that I only discovered this today (while googling for something I knew would be on the Leukaemia & Lymphoma Research website). Apparently, the rebrand happened in September, as part of "blood cancer awareness month". I wasn't even aware of blood cancer awareness month. And I've got bloody blood cancer. So the likelihood that anyone else has heard of any of this is approximately the square root of bloody bugger all.

Oh the irony. If only it wasn't a matter of life and death. Gotta laugh, or you'd cry.

Still, you know now. Spread the word.

* Expletive tmesis. Isn't English glorious?

Friday 5 February 2016


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.