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.

Reality bites

Can you feel it, see it, hear it today? If you can't then it doesn't matter anyway
Epic - Faith No More

Check up ... KFLC = 135 ...

I was more apprehensive than normal about this month's visit to the haematology clinic. Either my results would have returned to "normal", or they would not.

I was right to be worried, unfortunately. My light chains are rising. My consultant warns me that I should expect that my next appointment will formally mark "progression". As recently as July I was predicting that
"my myeloma will probably be back somewhere between 1 and 3 years from now".
It appears that it will be very much at the early end of that estimate.

Progression will not immediately mean treatment. For that, I get the joy of waiting for symptoms (bone pain, most likely, or anaemia). But I'm now assuming that I will be back in treatment during 2016. This will likely take the form of either ongoing (indefinite) chemo, or another stem cell transplant. I absorb all this information feeling very glum, and walk home feeling incredibly alone.

Then I have the task of passing on the news - first to my Dad, who is looking after Lyndon for the day, and then to Marisa. As always, sharing the news is my least favourite job of all. The lowest and worst part of the whole experience, when I face up to the fact that my illness impacts many people. Writing it down for you is comparatively easy - though it has taken me 10 days to pluck up the courage.

Irrational

This dog got bit on a leg. He got a really big chip on a leg. Don't want to get out of bed. Unless he feels like it's justified
Mr Noah - Panda Bear

Checkup... KFLC = 96 ... κ/λ = 15.2 ...

My most recent check up was simultaneous with the massacre in Tunisia. This fact makes me feel a little uncomfortable dwelling on myself. And I know others, too, much closer to home, are dealing with challenges no less daunting than mine. I've hesitated to write this post. But I want DialM to be a faithful transcript of my myeloma, and regardless of what else is happening, my hospital appointments don't stop. So, take or leave what follows. I can't promise you'll learn much! And sorry if it is a little complicated.

On this Friday morning, for the first time in a long time, the consultant doesn't just tell me that my blood test results are all good. For the last few months, even as my kappa light chains (KFLC) have crept up, he's considered it no real cause for alarm, because the ratio (κ/λ) has been static. At low levels, this is significant because there are reasons other than myeloma which could result in raised light chains (particularly, kidney function). But my myeloma only produces one type of light chain (kappas, κ), whereas any other cause would affect both types (kappas and lambdas, κ and λ). While the ratio is static (even though it is abnormal) that is indicative that not much is happening myelomawise. This time, though, the ratio (for which normal would be 0.26 < κ/λ < 1.65) has jumped from 6.5 to 15.2. I'm not sure what this means - and nor is the consultant - because it is largely due to my lambda levels dropping. Active myeloma would certainly cause that by crowding lambda producing cells out, but I'd expect to see things like anaemia and neutropenia developing simultaneously, which hasn't happened (yet). And anyway my kappa levels haven't spiked.

In fact, with a few days hindsight, I think it is highly likely this is just an erratic result, but I don't reach that conclusion until after the consultant has told me
"on its own, this isn't sufficient to be considered disease progression"
Which triggers a conversation about what would be considered progression. The answer, in a nutshell, will be when the difference between my kappa and lambda counts has increased by +100 from the minimum I achieved after SCT, and that will be when my KFLC = c.160. Some way to go. However, for the first time the consultant acknowledges that, with occasional exceptions, my KFLC score has been increasing slowly for some months. I face the reality, again, that it is a matter of when, not if, my myeloma progresses. How long might that be? He doesn't think it will come in a jump. I can't help making mental estimates of how fast the KFLC score is moving. My most negative estimate is about +10 each two months, of late. At that rate, I have a year. Or, taking a more optimistic view, it has increased +40 in the two and a bit years since my SCT. At that rate, I have 3 years.

So... hold the front page... my myeloma will probably be back somewhere between 1 and 3 years from now. But then, ever since we knew my SCT had been successful, we knew that, really. Can't say I've enjoyed being reminded, though.

It's a burden, being responsible for making good on remission. How can I ever live up to it? How much must I make, of every moment? And if I have a mundane day, an unproductive day, a miserable day, what kind of betrayal is that? These thoughts can be quite debilitating. Knowing life is finite, and hard earned, and yet still being miserable. That's a toxic combination. For a while, last year, I was really very down.

Rare opportunity for a maths joke...

So it is good that the other thing that is creeping up, is the frequency with which people tell me how well I look. In part, this is a consequence, I think, of adopting a somewhat cavalier attitude, to life, to responsibilities, to myeloma. I've excused myself, for now, from the responsibility to take it all seriously. I'm not trying too hard to make the most of it. I live under the shadow of a ratio. I'm permitting myself to be a little more irrational, while I can.

Tres meses

No me has llamado, estoy desesperado. Son muchas lunas las que te he llorado *
Rayando el sol - Maná

Check up... KFLC 82 ... Hb 13.7 ... Neutros 2.06 ... PLT 212 ... Corrected calcium 2.14 ...

12 weeks between hospital visits! (Not strictly true: I had an abortive wait in the phlebotomy dept for a set of blood tests that hadn't been properly ordered on the computer system. And I had an afternoon in A&E with Ben after a football accident.)

I deliberately left DialM quiet for the whole period, so you could share the experience. (I had to restrain myself a little.) I don't know if you've noticed the absence? Were you wondering about me? Or had you stopped thinking about it? I'd like to say I stopped thinking about it myself, but that would be a fat lie. My spine always reminds me, as does my ongoing calcium deficiency. And there was a wobble a couple of weeks ago when I caught the tail end of a child's infection and had several days of fatigue (and presumably anaemia) as a consequence. However, these are but small grievances.

My light chain score is up a little today. I do wish it would go down again a bit next time! It's not really a trend though since the κ/λ ratio is steady at around 6.5. I can't be bothered to explain that to you. If you have mm, you'll know what this means. If not, you'll have to do your own research! Or just let me paraphrase for you: "This result is suggestive of a summer holiday".

I'm signed off for another 2 months. I'm realising, as time goes by, that these check-ups form planning horizons in my life. I can just about make plans 2 appointments ahead, but that is really all. It is looking pretty promising, given my results today, that things will still be OK at the end of June. In which case I get to have a summer holiday. But I can't make firm plans further out than that. I'd really like to take the kids travelling for a bit at the end of the year, but I won't know if that's an option until after check-ups somewhere in early September and early November, or thereabouts.

It is strange to have to plan all my choices around my light chains. But such is my lot. If things are still good in February, then I want to get a puppy!

What it actually says on my results print out...

* You haven't called; I'm getting desperate. Many moons I've been missing you

Reaching for the sun - Maná

Learning and teaching

So just be gentle with me. I'm not as young as I was. And I'll be gentle with you
Be gentle with me - The boy least likely to

Two updates, only one of them strictly about myeloma

I was unwell a few weeks ago. I developed pain in my hip - which I'm pretty confident is a pulled muscle, maybe as a consequence of overdoing my back stretching routine. Simultaneously, I got an "upper respiratory tract infection" - i.e. sinusitis. I took to my bed for 2 days, and then, as my temperature passed 38C, I found myself on the predictable, lamentable, journey into hospital . The usual drill was followed: concern, tests, inconclusive results, antibiotics, home. That was followed by a few days of terrible fatigue. In combination - viral fever, skeletal pain and exhaustion - it was, frankly, a bit like having myeloma.

As a precaution, I had an MRI of my pelvis and lower spine, to check the hip pain really isn't a symptom of something more serious. The good news is my pelvis is in better nick than it was 2 years ago. The bad news is that somewhere in that time (presumably in late 2012 when I was really ill), several more of my vertebrae collapsed. The damage goes down all the way from my ribs ("T7", T for thoracic, the last vertebra directly attached to a rib), to just above my pelvis ("L4", L for lumbar, the second from last vertebra above the fused section called the sacrum). In total, that spans 10 vertebrae, out of a total of 24 from neck to bum. Nearly half of my back is bust. A sobering thought to reflect on.

On all other directly myeloma related themes, news is good. My blood counts are normal, and my light chains are still stable.

I have a self imposed rule: DialM is only about myeloma. This is largely to stop myself from writing a trivia blog: posts about my holidays, or what I had for lunch, or what I did last night. I can't see why anyone would want to read that stuff, and if you do, you can go elsewhere - the internet is full of it. But the rule creates its own issues. Do I have to interpret every part of my life through the prism of myeloma? Do I have to compartmentalise everything into the bit that is myeloma, and the bit that is not?

For now, I don't want to do that. So... here's something that is part of a life that has myeloma in it...

Those of you who have been paying attention will remember that I was part way through a PGCE (the UK's teaching qualification, for non-British readers) when I got ill, and reluctantly deferred my final teaching placement last year. Well, in May I restarted, and last week I completed it! It has been such a drawn out story (3 years), and finished under such different circumstances from when I started. The teachers I work with all assume I will be trying to find a (newly qualified "NQT") teaching job, which was never the intention, and certainly is not now. The final phase has consisted of 2 months full-time teaching to a class of 8 and 9 year olds. And unlike most of my peers, who have been preparing continuously over the 9 months before this placement, I hadn't been in a classroom since Feb 2013, having been somewhat otherwise preoccupied.

There's an extent to which teacher training is an endurance trial - with unreasonable expectations placed on one's time and energy levels. Having myeloma makes it difficult to respond to that. I knew I couldn't just double-down, do excess hours, survive on adrenaline and cortisone. My body simply won't let me do that, any more. When I got sick (which I'm sure was triggered by school, and perpetuated by school) I seriously considered simply abandoning the whole charade.

Sadly, one cannot expect much consideration for illness or disability, in the workplace. My school said all the right things, but words are cheap. In reality, they made no allowances, and they would justify that on the basis that "it's what the job entails". I absolutely want to be judged on merit, but a little understanding would go a long way, and that is nigh impossible for people who haven't been where I have been (or, like you, ridden pillion with me).

Because of myeloma, I had a very long break in my studies. I had to relearn a lot. I feel as though I completed an entire year's training in two months. And those two months were structured as assessment/examination, rather than as training/learning. I had, in name, a "mentor", but she was ultimately tasked with judging me. I knew her assessment could easily be that:

"With so much lost ground to make up, Alex simply isn't going to get to the finishing line in time."
or
"Teacher training is an ordeal, and Alex doesn't put his back into it enough" (my back! the irony!)
or

"Even if Alex can be a good teacher, he isn't resilient enough to be a full time teacher."

Any of those conclusions would be understandable, but hurt nonetheless. And the thought of them was enough to put me to the point of walking away. I've lost a lot of control and a lot of dignity, these last two years. I could have retained a little of each by not subjecting myself to others' judgement.

If I don't want pity (which I don't), then I must choose to put myself in situations where people are ignorant and unsympathetic. And if I want to feel fulfilled (which I do), then I must be willing to invest energy, pain and time for (uncertain) future pay-off, even though myeloma has taught me a lot about the importance of living for now. As ever, it is me alone who must reconcile all these irreconcilables.

If I had decided not to finish the course, the last two months would have been easier for me (and for Marisa). And really, would it have made any difference if I hadn't got the certificate? On the other hand, having completed it, I have proved to myself that while myeloma hobbles me, it hasn't stopped me, which is important. So I'm happy. It's been a gruelling experience. But I have had far worse.