Wednesday 26 November 2014


I'm all by myself, as I've always felt. I'll betray myself to anyone
Soma - Smashing Pumpkins

Forgive me while I go off on one, again

Safe to touch?
As my sons could tell you, there are two kinds of nettles, growing along the side of our twitten. One is the well known stinging nettle, which has evolved a nasty eponymous ability. But the other, less well recognised, is the dead nettle, which has simply evolved to look like a stinging nettle, and so gain much of the benefit, without so much effort on its own part. (It's called Batesian mimicry).

As so often, this is a bit like myeloma. No, really, it is. Hang with me for a minute...

I try to keep it together, up top. It's one of my core personality traits, I like to believe. Indeed, my inability to keep it together in 2012, when the sky fell in; the experience of losing control, was like losing part of my identity, for a while. And, since I got my shit back together, I feel sometimes normal, despite myeloma, even if others sometimes find my ability to be caustic and flippant about it unsettling.

But don't be fooled. I have not found coming to terms with myeloma easy. I do not find its lurking presence easy.

Sometimes it feels as though myeloma pollutes every facet of my life. And for that I hate it. So I was letting off steam, to one of the wonderful people the NHS provides for the explicit purpose of giving me an audience to whom to say the unsayable. Something he said put an interesting thought into my head, about the tendency to implicate myeloma in everything. Maybe some things are actually not about myeloma, except to the extent that these days everything is about myeloma.

With myeloma, I'm walking through a field of nettles. Every pain or difficulty (mental, not just physical) appears myeloma-shaped. It is easy to blame everything on myeloma. But some of these woes are not actually myeloma. They are of different origin. They have only grown to look like myeloma. They are fakelomas.

Once you know the difference between a dead nettle and a stinger, you can crash through the former much more easily. So I'm going to hunt out some of my fakelomas, and try to expose them for what they are: mere ordinary trials of life, which I would have faced anyway. Maybe that way I can trample on them a little more courageously.

I won't stamp on the real myeloma stuff though, if I can avoid it, for fear of getting stung.

Wednesday 19 November 2014


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

Tuesday 4 November 2014


Calcium - The Future Sound of London *

Calcium = 2.16. Apparently that does matter. Who knew.

In the melee of figures that go with having regular blood tests, I've learnt to focus on the few that really matter. Normally, that means the indicators of blood cell types, and of course indicators of myeloma. Every now and then, my attention is drawn to something else (I had a crash course in liver function indicators, many moons ago.) One number I have consistently ignored has been my calcium level. Active myeloma can cause hypercalcemia (too much calcium in the blood). But my calcium has been consistently low (hypocalcemia). This is almost certainly a consequence of the bone strengthening drugs I'm still on (though next month may be my last, with a bit of luck).

Every time I go for treatment they tell me my calcium level is low, but treat me anyway. I then take calcium supplements for a few days, before forgetting all about it for another month.

Since the summer, I have been having consistent abdominal muscle pain. This has been a site of much unpleasantness in the early days (spasms due to vertebrae damage in the beginning, and then sporadic flare ups during my initial treatment), so its recurrence has been disconcerting as well as painful (though nothing like the pain of old, when I was unable to stand up without searing agony).

I tried to put the "what if..."s to the back of my mind and focus on addressing the symptoms. After a lot of (yellow) English mustard (turmeric, which is yellow, is good for muscle spasms - among many other things, so English is better than less-yellow-French or more-added-colouring-American!), some amitriptyline** (short term relief), and a bit of stretching exercise (if anything, this made it worse), I seem to have settled on an answer... increased calcium. I've been getting through a lot of chalky calchews.

Sure enough, today's test results shows higher calcium levels than ever - actually in the normal range - and at the same time my muscle pain has gone away. The nurse today agrees the two could easily be connected. Not that anyone volunteered this fact to me until I'd worked it out for myself. Apparently - she fills in the science bit for me - mineral imbalances between in-cell and out-of-cell levels can lead to pressure, and so pain, across stressed muscle areas... so for me to experience it in my abdomen is not really that surprising.

Having myeloma is a bit like switching the body's blood machine from automatic to manual - things which used to auto-correct themselves now have to be actively managed. What a pain. Or not a pain, actually, right now.

* I was unsure whether I am allowed to put an instrumental in as my lyric quote. And then I remembered it is my blog. So I am the arbiter of the rules, as well as good taste, in this space. I can see it will pose a little problem for those of you who don't know it... So here's a link to listen on youtube. And of course, it is today's contribution to RadioM. for those on spotify.  Seminal early 90s ambient techno. And the first album I discovered while at university.

** Google's spellchecker doesn't recognise the word "amitriptyline" and wanted to correct it to "pantyliner", but I haven't tried those, so I can't tell you if they are any good for my muscle cramps, I'm afraid.

Friday 5 September 2014


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.

Friday 18 July 2014


I rue the day that I ever met you, and deeply regret you getting close to me. I cannot wait to deeply neglect you, deeply forget you.
Poems - Tricky

About bloody time

Last weekend was spent with dear friends. On Saturday afternoon one of them received a text message wishing them a happy wedding anniversary. It came as a mild surprise to them, as they had both completely forgotten! We all agreed that if you are going to forget your wedding anniversary, much best to do so together. Not normally so good if you do it alone.

Some things are best remembered, others are best forgotten.

I read an email today of a post from a friend's myeloma blog. (The post, coincidentally, is dated yesterday). She begins
"Five years ago today our life was totally transformed. I clearly remember sitting in the Consultant’s room... with him telling me..."
I don't think any more of it, until an hour later when I am walking down the street, and it occurs to me that the (2nd) anniversary of my myeloma diagnosis is approaching too. When was the fateful phone call, I wonder?

And then it strikes me. It was July 17th. Yesterday. Yesterday I was busy flying home from New York. Yesterday I was busy writing something for a client. Yesterday I was talking with builders and architects. Yesterday I was out for pizza with my children. Yesterday, I forgot.

Oh rapture. I can't tell you how good I feel.

Friday 11 July 2014

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."
"Teacher training is an ordeal, and Alex doesn't put his back into it enough" (my back! the irony!)
"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.

Thursday 22 May 2014

FWP 3.2

The peddler now speaks to the countess who's pretending to care for him, saying "Name me somebody that's not a parasite and I'll go out and say a prayer for him"
Visions of Johanna - Bob Dylan

It requires distance, sometimes, to see things in perspective.

I was on Bohol in the Philippines when I heard about the Rutland Earthquake - magnitude 3.2 no less *.
"I thought the house was falling down", one local woman was quoted saying. Though others were less melodramatic. I particularly liked the use of column inches to tell us all that
"my electric toothbrush fell from the shelf into my sink".
It made a stark contrast for me since Bohol is recovering from a magnitude 7.2 quake in October (which was just three weeks before the neighbouring island of Leyte was decimated by Typhoon Haiyan). The Bohol quake killed more than 200 people, injured 1,000 and destroyed 15,000 buildings. Damage is visible everywhere. Most of the roads are still being repaired and there are many areas where buildings are sealed off as unsafe.

We had just visited the town of Loboc, where the 500 year old Spanish colonial church was largely distroyed. (A similar fate tragically befell many of Bohol's historic churches.)

Rutland was, so transparently, a First World Problem #fwp.

In the Philippines, my myeloma too seemed largely an FWP - in contrast to the challenges faced by slum dwellers in Manila. Of course, if I were a slum dweller in Manila, my myeloma would be a very real problem for my family, as it would have killed me by now, and left them destitute. Still, blissfully ungrateful for my "good fortune" at being ill in the right place, I managed to avoid thinking about myeloma much. In a whole month, the mist of fatalism only descended on me once, briefly, and even then, the view from the boat I was travelling on blew it away almost instantly.

I must get away more often! Though I'm not sure of the ethics of a "travel to places where people have it harder than me", policy.

* The Daily Mail said it was 3.2 "on the Richter Scale", which has not been used for about 30 years. I think it had magnitude 3.2, which is something subtly different. But then accuracy, especially in science, is not a strength of the Mail. That paper, after all, did more than anyone to whip up alarm about MMR and measles, leading to lower vaccination rates, and ultimately to outbreaks of measles. I didn't notice the Mail taking responsibility for that when they published a story about someone dying from measles last year. This may be an aside from DialM's core purpose, except that myeloma is very much a subject of science and health. And (coincidentally) measles vaccine has recently been used to treat myeloma. OK, so it's off topic, but I loathe the Mail and all it stands for. Especially so today, when some of its readers will no doubt be voting UKIP.

Thursday 3 April 2014


I don't say my prayers but I pray for you. I might say "Who cares?" but I know you do. You're the one who knows that my lies aren't true. When I see you cry I think tears are cool.
Tears are cool - Teenage Fanclub

Check up (from 17th March tests): ... Haemoglobin 12.9 ... Neutrophils 2.44 ... Platelets 225 ... Kappa FLCs 60 ...

I'm in the midst of trips to Mexico, Moscow and Manila. 3M. It's a bit like the old days: global strategy consulting; exotic destinations; I've begun a new teaching placement, too. And, later on today, Marisa and I will begin another adventure, taking the children backpacking for a few weeks. A lot of fun, and not relevant for DialM. (But don't worry: when I see you I'll take every opportunity to tell you all about it.)

Of course, there is always another "M", with myeloma. My scores are, actually, getting marginally better, month on month. I've bandied the word "normal" around rather liberally, but my blood count really is almost unremarkable now. Except the excess light chains, proof that something is still lurking there. I wrote a melancholy blog post, from a hotel room in Moscow, about not being able to move on from myeloma. I didn't post it. I won't now. It seems inappropriate, when so many good things are happening. I have really "got my life back", which was all I could have asked for, 12 months ago. A small dose of amnaesia would be nice now maybe; I'd really like to be able to get it completely out of my mind.

Still, maybe I have my "M"s out of sequence? Myeloma came long before Mexico. The "M" directly ahead of me right now, is Manila. And on that I will focus. I will live to experience more "M"s (we all will), so there's little purpose obsessing about the future, to the detriment of now.

Off to get the boys from school, and then a taxi to Heathrow.

Friday 7 March 2014

Anniv 3

I know a place where I can go when I'm low down. To your house, down to your house, I will go when I'm low.
Total life forever - Foals

Anniversary season - part 3: Salvage

A year ago today, I had my stem cell transplant. So underwhelming at the time. But it saved my life. The nurse had a moment's trouble getting the tubes all connected and some of my cells ended off on the floor. Like watching my own life pour away. But there were more than enough left for me. Science and the human body. Amazing things.

I know a face who I can show my true colours. To your arms, into your arms, I will go, when I'm low. 'Cause total life forever, will never be enough
Total life forever - Foals

Thursday 6 March 2014

Anniv 2

I thought I was smart. I thought I was right. I thought it better not to fight. I thought there was a virtue in always being cool.
Fight test - The Flaming Lips

Anniversary season - part 2: Battle

A year ago today, I had high dose melphalan. It didn't feel great. It led to a lot of vomiting. My guts fell out. And my blood turned to water. Still, my myeloma liked it even less than I did. And I have recovered, while my myeloma is still on its back.

I don't know where the sunbeams end and the starlight begins. It's all a mystery. To fight is to defend. If it's not now then tell me when, would be the time that you would stand up and be a man.
Fight test - The Flaming Lips

Wednesday 19 February 2014

Anniv 1

Come and drink it up from my fertility. Blessed with a bucket of lucky mobility
Give it away - Red Hot Chili Peppers

Anniversary season - part 1: Vertebroplasty

A year ago today, I had my back cemented. Pain is definitely the worst thing about myeloma. Vertebroplasty set me free.

What I've got you've got to get it put it in you. Reeling with the feeling. Don't stop. Continue
Give it away - Red Hot Chili Peppers

Saturday 1 February 2014


You're fireproof. Nothing breaks your heart. You're fireproof. It’s just the way you are. You’re fireproof. That’s what you always say. You’re fireproof. I wish I was that way.
Fireproof - The National

Tuff *. An exhortation on determination

Yesterday I was signed off from the physio I have been seeing since September. I'm going to be referred on to another gym group, so I'm not out of the system just yet, but it's a major step, nonetheless. Another milestone, just in advance of a string of rather odd anniversaries which are to come over the next few weeks.

Since the musculoskeletal components of myeloma get under-reported in comparison to everything else, I feel it is a personal mission to write this stuff up. So here comes a potted recount of my physiological fitness over the last 2 years. Some of you know much of this all too well.

2012: March: The terrible crunch in my back that stopped me in my tracks. May-June: Increasing problems with walking, and particularly standing. July-Dec: Bone pain and chemo fatigue. I sat as much as I could. And slept propped up on pillows. I was slowly curling up. I avoided the need for a zimmer, mainly by using Lyndon's buggy as a substitute.
2013: Jan: Couldn't stand straight, or for long. Lingering pain, despite my myeloma being in partial remission. Feb: Verteborplasty released me from much of my pain, and most of my painkillers. Mar-May: Mostly lying down, really on account of my SCT. I suspect I was getting even more crooked, though I was too crook to care. Jun: Beginning to get a horrid realisation of the kyphosis I had developed. And beginning the fight to overcome it. Back on painkillers in order to begin to push my back back in to shape. Jul-Aug: Out and about, proving to myself that sitting in front of a PC is a major source of problems. Fighting to get flat, often experiencing really quite painful grinding sensations in my lower back as the bones realigned. Sept: Finally (finally!) seeing a specialist physio. She goes up in my personal NHS Hall of Fame for what she has done for me, in the ensuing 4 months. Oct-Dec: Continuing, determined, stretching routines. Measurable progress on every appointment. My head getting further back as I stand against a wall, until eventually I can touch the wall. Though I still need to be able to do so with my chin tipped down not up. My arms getting further down the wall when I stretch each side in turn. This second part is a reflection of me gradually gaining some rotational flexibility.
2014: Jan: Here I am. My upper (cervical) spine kyphosis is not quite corrected, but it is getting there. My mid (thoracic) spine pain is gone. (One's thoracic spine doesn't have much movement). My lower (lumber) spine is slowly turning back from kyphosis to lordosis - i.e. going the right way out - and I can begin to tilt my pelvis properly. I've got some rotational movement, and it feels like more is coming. My remaining muscular pain is diminishing and confined to my lower abdomen, my groin and the band across my lower back. I have been running, twice, without pain - which is proof, really, that things can move much as they should. I can swim 1km. I can ride a bike. I can walk miles. I can stand for a good hour or two before it gets really painful. I can carry luggage. I can get in a canoe. Though I think riding a horse was a bit much.

Dulwich Hospital, the unlikely scene of my salvation
I'm not quite what I was. I never will be. But then, I'm the wrong side of 40, and a bit of downhill is inevitable. And considering how many fractures there were in my back, I'm pretty delighted with where I am. Plenty of people comment to me right now that I look much more upright than I have for ages. I suspect I have regained a bit of my lost height, though I'm too chicken to find out. I'm certainly more and more mobile. And in less and less pain.

When I thanked my physio for all she has done for me, she told me that my determination has been an essential factor. I'm not saying this to show off (though I do feel quite pleased with myself about this), but because it is so easy to despair with myeloma. It (and its treatment) promises so many symptoms and consequences: pain, fractures, infections, anaemia, thromboses, calcemia, neuropathy, fatigue, kidney failure, memory damage. Oh yeah, and recurrence and death. It's pretty easy to want to give up. Myeloma isn't the only vile disease in the world (I have particular loathing for MND and MSA too, having seen what they do to people I love), but it's right up there.

But, if you recognise my description of my experience as similar to your own, don't give up. Never give up. Every day is a chance to "Get up. Dress up. Show up." And Amen to that.

* For a change, instead of a song lyric, here's a quote from a book, The Outsiders. Those of you not brought up in the 80s probably don't remember the Brat Pack film adaptation...
"Tough and tuff are two different words. Tough is the same as rough; tuff means cool, sharp--like a tuff-looking Mustang or a tuff record."

Monday 27 January 2014


I've seen the needle and the damage done. A little part of it in everyone. Every junkie's like a setting sun.
The Needle And The Damage Done - Neil Young

A few little jabs that's all

To the GP this week, to get vaccinations up to date for holidays. I have to start from scratch, because there's no way of knowing (without doing loads more tests) which of my immunities have survived my SCT. So I have polio, diphtheria and tetanus today as well as typhoid and hepatitis. The nurse says do I want them in different arms. I can't be bothered to roll my other sleeve up so I say stick them all in one. She says it might hurt. lol.

Friday 24 January 2014


I'm wasting my young years. It doesn't matter. I'm chasing old ideas. It doesn't matter
Wasting My Young Years - London Grammar

Check up (from 10th Jan tests): ... Haemoglobin 12.4 ... Neutrophils 2.26 ... Platelets 176 ... Kappa FLCs 61 ...

My scores. Blood count normal, normal and normal. Even my lymphocytes (0.86 and counting) are getting more normal. (The lack of them was what sent me scurrying to hospital when I got a fever last month.)

And my light chains are actually DOWN. I was beginning to get used to them creeping up.... 62... 65... 69 in previous tests. Changes at this level are meaningless (number too volatile, test too sensitive), but even so I imagined a trend where I would very slowly emerge from remission. But no.

I think these are the best results I've ever had.

I was so pumped up, I decided today was the day to go for a run. Only a mile and a half. But crucially, I was not in pain. That's my first run for 98 weeks, since the time I broke my back. A really quite significant mile stone, then and now.

Tuesday 21 January 2014


There's a world within me that I cannot explain. Many rooms to explore, but the doors look the same. I am lost. I can't even remember my name
Within - Daft Punk

T is for tree, of course

I went to Bedgebury Pinetum on Saturday, with friends. While the children foraged for stick-men, my mind kept drawing me backwards.

I've been there just once before, 74 weeks previously, on 19th August 2012. The previous occasion was at the end of my first week of chemo, and at the height of the symptoms of my myeloma. It was probably the lowest moment of my life.

We had gone for a weekend away taking our bicycles with us. But I was in no fit state to hold a bike, let alone ride one. I could barely walk. Marisa, reading this, will feel bad that we went away that weekend at all. You shouldn't, honey. The intention was right. The children enjoyed it. I'm glad we went. I was destined to feel dreadful, wherever I was.

What surprised me last weekend – apart from an unwelcome sense of "nostalgia" (if it can be called that), was quite how vague my memories of the place were. It was only when I saw it again that I had any real recollections at all. In some respects the summer and autumn of 2012 is still very vivid for me. But in other ways, fortunately, it is remarkably hazy.

Friday 10 January 2014


You're down on your knees, begging us please, praying that we don't exist. We exist.
We exist - Arcade Fire

I decided this topic was better handled as a "pre" rather than a "post"

One of my myeloma buddies asked a question online the other day. She was diagnosed within weeks of when I was, is on the same clinical trial as me, and was one of the first few people who I ever communicated with that also has MM. As fellow travellers, I suggested we catch up for coffee.

This has since morphed into about 10 people, all of whom I know only online, meeting up this afternoon. Pity anyone sitting near us in the pub (we're so English), because the conversation will probably get a bit graphic.

Anyway, I don't think anything they tell me will be stuff I'll want to share with you. So I thought I'd write it up before it happens.

What is more worthy of note on DialM is that I've only ever spoken face to face with 3 people who have MM. And two of those only brief one-off encounters. I spoke to a couple more people on the phone, but that's it. So today will be something of a milestone. And all "under 50s" too. Myeloma at my age is a pretty lonely experience. Less so today.

In other news...

Lots of non-myeloma things have happened. I managed to enjoy the children's school Christmas performance and keep all the awful thoughts of mortality at bay. And not many myeloma things have happened. My most recent bone-drug appointment got delayed (off to the hospital in a few minutes). I've postponed my clinic visit for a few weeks. My brilliant physio is working wonders on me. I can stand with my back against a wall and touch my head against the wall (just).

I had my first haircut for a year and a half (excluding a few head-shaves and one fluff-trim last autumn).

I do realise that me posting a mirror-image selfie puts me in a peer group with Kim Kardashian, but I can't help that. And you wouldn't want to see my arse (you probably don't want to see hers) so at least I've kept it to a head shot. Look at all those neatly trimmed hairs. And not a chemo-wave in sight.