Wednesday 27 March 2013


Sun lights up the day time. Moon lights up the night. I light up when you call my name and you know I'm gonna treat you right
Fever - Otis Blackwell

Day 20 : ... Haemoglobin 8.1 ... Neutrophils 1.33 ... Platelets 18 ...

A short biology lesson about fever. Our bodies regulate their temperature to keep it at a level set by our brains - in our hypothalamus, which effectively acts like a thermostat. If our actual temperature is different from the thermostat, we feel hot or cold, and our bodies do things to cool or heat themselves. When we get an infection, our brain turns up the thermostat, our body responds and our temperature increases. This helps our immune system function. In the process, our actual temperature is below the thermostat - so we feel cold (not hot). If our fever is high, it may trigger shivering, where muscles twitch in an attempt to warm rapidly. Fever is part of our response to infection - not part of the infection itself - and not normally dangerous. The only reason to treat fever is because it is not a very pleasant experience. Paracetamol and ibuprofen effectively turn down the brain's thermostat.

If your immune system is not working properly, this can all go a bit awry. The brain turns up the heat, but this doesn't enable the immune system to be effective, so the brain turns the heat up some more. You get extreme chills - feeling cold and shivering/shaking.

I've just had 24 hours of this. My temperature spiked and I took paracetamol to bring it down. Each time the paracetamol wore off, my temperature spiked again, higher each time. At 1am it reached 39.6C (over 103F, for our older readers). It was a little frightening because even as they wired me up to the paracetamol drip, I was wondering how high it would spike next time. Fortunately, when I woke up this morning, my immune system had finally got to grips with the situation. My temperature was raised a little, but not alarmingly. By lunchtime it is almost back to normal.

In absolute quantity, my immune system is well on the way to recovery. But unfortunately, it will take a while for the quality to come through - all the antibodies acquired through 40 years of fighting infections. Until it does, I'm going to be susceptible to bugs. Nice.

The docs say, as long as I don't have any more fevers, they'll let me go home again on Friday.

Monday 25 March 2013

One step back

Have you seen her? Have you heard the way she plays? There are no words to describe the way I feel
She Bangs the Drum - The Stone Roses

Day 18 : ... Haemoglobin 8.9 ... Neutrophils 0.72 ... Platelets 6 ...

Feeling a little less exhausted this morning, but not a lot, I make my way down to hospital for blood tests. I persuade them to let me go home while they wait for the results - they'll call me with the scores. When they do, my neutrophils are well up (hurrah) but my platelets are well down. No real surprise, but it means I need to come back down to the hospital for another platelet transfusion.

When I get here, my temperature has gone up to 38.2C. This is above the magic threshold so... I'm put back on the (yucky) antibiotics, and admitted back on to a hospital ward for tonight.

Bugger, bugger, bugger.

This is rubbish. Rubbish for me, because I am so over hospital; rubbish for Marisa, who was doing a valiant job of nursing me at home; and rubbish for the boys, who are left - not for the first time - not knowing if I'm coming or going.

I'd be amazed if they let me out tomorrow. I bet I'm here for 2 or 3 days, even if my temperature stabilises and nothing shows up in my blood cultures.

Bugger, bugger, bugger.

Sunday 24 March 2013


I watch the ice melt on the glass, while the eloquent young pilgrims pass, and leave behind their trail, imploring us all not to fail
Young Pilgrims - The Shins

Day 17 : recuperating chez moi
There's lots of good things about being home. I have Marisa as my nurse. The children have just arrived back from a weekend away - and the older 2 have elected to sit at the foot of my bed, playing their DSs and singing Olly Murs, which is more lovely than it sounds. And on practical matters... My mattress is infinitely more comfortable. I have a duvet, after weeks of thin blankets. I can potter about, among my own things. I can look out of the window, over the frosty gardens. I can even go outdoors. I tried to think of anything that was better in hospital, and could come up with just one: if you want to sit up in a hospital bed you can just press a button. If you want to do so at home you have to put some effort in. Honestly, that's the only thing I miss.

Of course, at home I don't have blood tests, so I don't know my counts, though I'm sure they're progressing. I'm due back in hospital tomorrow, so I will get a status update then. In the mean time we're taking my temperature every few hours to keep an eye out for anything that might go wrong. All fine, so far. And I'm still on a wide selection of drugs - six types of pills and a course of self administered injections.

Coming home has made me feel quite spectacularly exhausted. I don't know if this is just because a familiar environment changes my benchmarks of what energy levels I could have. Or maybe the lower temperature (my hospital room was a sweat box) is sucking energy from me. Or maybe my ambient activity levels have increased - after all I haven't been up and down stairs for a while. Whatever the cause, I am utterly physically spent. Like nothing I have ever experienced, and certainly beyond my powers of description. I am well aware that the recovery period for SCT is at least 3 months, and I have only had 2 weeks. So this is all to be expected, but the sensation is quite extraordinary.

The physical regime that will get me back on my feet must be a balanced one. Too little activity will lead to a slow recovery. Too much exertion will be counterproductive. Today I went for a 10 minute walk, sticking to the top of the hill (most directions from our front door go steeply downhill, and I don't think I'd be able to get back up!) Until now, the fight with my myeloma has largely been beyond my control. But the battle to regain my physical fitness - after all my poor battered body has endured in the last year - is well within my control. That is an important milestone in itself. From here on in I can take responsibility, pleasure, and credit, for my own progress.

Friday 22 March 2013


You can go where you wanna go. People talk but they don't know
Light love - Free Energy

Day 15 : ... Haemoglobin 9.6 ... Neutrophils 0.23 ... Platelets 14 ...

All my blood counts are moving in the right direction. The consultant says I can go. I'm still neutropenic, but my immune system is busy rebooting itself. I should be ok at home, as long as I take sensible precautions and call the hospital if I get even the slightest temperature.

It's amazing how quickly one gets institutionalised. Home? Me? Is it safe? Will I cope? I had expected to be in hospital for at least three weeks. In the end it was just two and a half. Still, the timing is good - the boys have gone away for the weekend, so I have two days to acclimatise in a quiet house. I'll be a nice surprise for them on Sunday evening.

The quick turnaround is a symptom of the fact that my journey has been a reasonably smooth one. The day of the chemo was tough, and then there were about six rough days last week as everything died. But I didn't get a major infection. I didn't get severe mucositis. One doctor told me today that I had had the best response to transplant that she'd ever seen. I am grateful (of the fact, not the compliment).

My journey to full recovery is only just beginning, but I will enjoy it more from the comfort of my home and in the company of my family.

Thursday 21 March 2013


So I'll continue to continue to pretend, my life will never end, and flowers never bend with the rainfall
Flowers Never Bend With the Rainfall - Simon and Garfunkel

Day 14 : ... Haemoglobin 9.3 ... Neutrophils 0.18 ... Platelets 19 ...

Sustained progress, and hallelujah to that. I'm desperate to get home. Desperate for life to return to normal, and to forget about myeloma. Except, of course, I can't and won't. It's surprising how much work I need to put in to rebuild my physical condition, after a year of inactivity. I'm working hard, with my physiotherapist (though she doesn't seem to pull her weight; she just stands around talking), to gain a bit of stamina, tone a few muscles, and stretch my back, which has been locked in spasmed muscles for so long.

It will take similar effort to rebuild my mind and unlock my mental spasms.

Myeloma is a dream stealer. We live in the present, but in the context of assumptions about the future. I used to take the future for granted. Marisa and I decided, before we married, that we'd take a year out to go travelling. We put in place a saving plan (not an overly arduous one because we still wanted ample social and holiday budgets in the mean time). It took us 5 years to save enough money and to find an appropriate moment in our working/studying. All that time we had a clear picture of where we were going. While we were backpacking, we had a new view ahead: this time of settling down and starting a family. Since then, we've planned the whats and whens of our current family lifestyle, and dreamed of moving our boys on to an idyllic rural/outdoorsy older childhood. Further ahead, I have joked about seeing out our old age on a beach in Thailand. Always a plan. You may not be a planner like me, but we all have those future memories: when we picture our children grown up, or look forward to a holiday, or when we imagine looking back on our current experiences as part of the narrative of our past. All these, perfectly normal, thought processes are dependent on a cloak of immortality - an underlying assumption that the future exists. Last summer, my future - and Marisa's too - evaporated.

We're all going to die, you and me. We all know that - it's no surprise for you to read it, or me to write it, except that we don't talk much about it. But we are. Indeed, it's quite possible that you will die before me. However, knowing rationally and knowing emotionally are very different things. Faced abruptly with the rude fact of my mortality, all my dreams disappeared overnight. Suddenly, there was no plan, no memories being stored up, just existence. It is hard - hopeless - to live without any dreams. It has taken me almost a year, but I am just beginning to get glimpses through the fog. This week we were talking about Lyndon and I suddenly imagined explaining to him, as a grown up, the circumstances of his infancy. Why he spent so much time with his grandparents (a privilege, I should add). Why, unlike his brothers, no-one took him on any foreign holidays as a baby (a pretty trivial example of sibling rivalry, but I can imagine being forced to explain this). Why Dad (for in this vision I was no longer a Daddy) forgot, for a year, to complete his NZ citizenship papers (evidence, were he seeking it, that Dad's focus was elsewhere than it should have been). In this vision, not only was I alive, but myeloma was something that had happened to me, not the defining interruption of my life. It was a view from a viewpoint I have not been able to access, until now. I'm not naive enough to think that there aren't plenty of less optimistic futures for me - I will never again be able to wear the cloak of immortality. But I need to be able to have positive dreams, and I know it will take mental physiotherapy to stretch my mind to do so. I'm working on it.

I'm aware this is all a bit heavy going, after the last few days' lightheartedness, but this myeloma business is complicated stuff.

Wednesday 20 March 2013


If I could do it again, I'd make more mistakes, I'd not be so scared of falling. If I could do it again, I'd climb more trees, I'd pick and eat more wild blackberries
Waiting for the 7:18 - Bloc Party

Day 13 : ... Haemoglobin 7.7 ... Neutrophils 0.10 ... Platelets 20 ...

As I hoped yesterday, my neutrophil count is increasing more quickly - it has doubled in the last 24 hours. If they continue to multiply (and they very well might) then I'll reach the magic threshold of 1.0 this weekend, at which point I could go home. I might even hit 0.5 as early as Friday, at which point I'd be allowed out of my room - I've been out just once (to go for an x-ray) in the last 8 days. For now, though, I continue to have very little immunity, and no freedom.

The fact that I can produce blood cells means that my clever little stem cells have successfully crossed from my blood back in to my bones, where they are recolonising as new bone marrow and starting work. (All their predecessors, along with my myeloma, having been bleached by the chemo.) It's not bad really, 2 weeks for a body to begin to regenerate some of its deepest functions. We're pretty amazing, you and me.

Other good things are happening. We've stopped worrying about my fluid intake/output - so I can use the toilet like a normal person. And my appetite is returning, though I look forward to them stopping my antibiotics, which continue to ruin my sense of taste. (They had promised we might stop today, but my temperature went up to a dizzying 37.8C last night, which is apparently enough to condemn me to another day or two of metal-mouth.) I'm even regaining body odour - which you might not think you'd miss, but I can report from experience, it's unsettling to be without it.

There's still plenty to deal with, though. I feel very lightheaded and feeble. I receive a couple of units of blood today to tide me over. The photo I'd rather have shown you - but I didn't think it fair to ask the nurse to pose for my blog - is of the machine they use to act as second checker. (Without it we would need two nurses to confirm everything is in order before we get started.) It has a handheld scanner with which the nurse scans their own ID, my wristband and the 2 barcodes on the blood bag. The scanner is attached to a machine on a shoulder strap that links wirelessly into the computer network to check we're all correct, and also prints out a receipt to confirm what we've done. The whole ensemble is reminiscent of either a door-to-door utilities salesperson, or a railways ticket inspector. I take the mickey out of the nurses, accordingly.

My hair is coming out. All of it. This includes 10 days worth of facial stubble, which is a really irritating sensation, and which will, left untended, look patchy and unsightly. But of course, with so few platelets I'm not even allowed to shave it off.

I'm not sure whether to feel really pleased with myself (keeping clean enough to avoid serious infection/ eating enough to maintain my weight/ keeping active) or whether to feel very lucky (haven't been dangerously ill/ haven't had uncontrollable diarrhoea and vomiting/ haven't been bed bound). Is this all a product of determination, good routines and physical resilience? Or good fortune? I ask the nurse. She says I should claim it as both. I reckon that's a good rule of thumb for all our successes in life.

Tuesday 19 March 2013


I was lost, now I'm found. I believe in you, I got no bounds. I'm movin' on up now, getting out of the darkness. My light shines on
Movin' On Up - Primal Scream

Day 12 : ... Haemoglobin 8.1 ... Neutrophils 0.05 ... Platelets 34 ...

What a joyous day. After a skin reaction to my platelet transfusion last night - came over all itchy like I'd been bitten by a swarm of mosquitoes - I was given some strong antihistamine and so I slept very soundly indeed. This morning I am up at 6, showered by 7, and sitting in a chair reading a book by 8, having already done my daily exercises. I feel great.

When today's results come in, my neutrophils are unquestionably moving upward. Not much yet, but up, and they should accelerate exponentially. (Good, at the current rate I'd be here until May.) Crucially, we know my stem cells have definitely grafted. It should just be a matter of time from here.

Looks likely I'll need a blood transfusion tomorrow, but who cares.

Monday 18 March 2013


You thought you'd set the bar, I never tried to work it out. We just lit the fire and now you want to put it out. You gave it all you got, and what you got is not a lot
Default - Django Django

Day 11 : ... Haemoglobin 8.3 ... Neutrophils 0.03 ... Platelets 8 ...

Despite the title of this post, I'm feeling pretty good. I can hardly sit up without feeling dizzy, but I continue to feel the chemo recede - I even successfully order and eat a curry this evening. They ply me with meds, and a platelet transfusion this evening. Sometimes there's so much stuff - at the rate they're giving it to me they must think I'm applying anti-fungal cream to my groin with a dessert spoon.

When they tell me my scores I comment that my neutrophils have gone up. They laugh. 0.01 and 0.03 are two shades of zero. Still, I'm optimistic they will be up more tangibly tomorrow. There's talk of me being home next week.

Marisa reminded me today to go on my email - I'd forgotten for several days - and I am stunned (and delighted) by all the messages. There were a lot of responses to when, the other day, I said that "things could always be worse". Let me explain what I meant, because I meant it literally.

At the time I had two people's stories going through my mind. One, a friend of a friend, is dying of bone cancer. The other, a myeloma sufferer who is younger than me, has had her stem cell transplant delayed because her cancer has relapsed. (They both write wonderful honest blogs, though they don't pull any punches.) I also had in mind the drama I am occasionally aware of around me in the ward as the medics attend to someone who has "crashed". People die in haematology wards.

Do other people's trials make mine any lesser? No. But I'm not vain enough to pretend that my trials are anything special. I've been a little morbidly fixated, these past months, by hideous turns of fate: being killed by a falling helicopter while on the way to work or being beheaded by a lunatic while out shopping, to pick two recent examples from the media. I'm not talking probabilities here, because these are all very rare events, but I am talking possibilities, because they are all real. Helicopter crashes, and bone cancer, and deranged beheadings, and myeloma, are all real.

And I'm not using the word "worse" as a euphemism for dying, because there are worse things than death or bereavement. Or at least, their are worse forms of death and bereavement. Go read "First they killed my father" by Luong Ung, a child in 1970s Cambodia, or "Wave" by Sonali Deraniyagala, who lost her parents, her husband and both her children in the tsunami in Sri Lanka.

So when I said "things could always be worse" I wasn't being stoic. I was stating a fact. And to be honest, I wasn't thinking so much of me, as of you. There are a lot more of you than there are of me. All our lives are full of challenges, and we all have times when we feel sick, or down, or stressed, or angry, or frustrated, or unappreciated, or lonely, or tired, or persecuted, or bored, or just simply pissed off. And the only thing we can do, is pick ourselves up, dust ourselves down and just get on with it. Because it could be worse. A lot worse.

Sunday 17 March 2013

Better (relatively speaking)

Yes, I do feel better. Yes, I feel alright. I feel well enough to tell you what you can do with what you got to offer
Yes - McAlmont and Butler

Day 10 : ... Haemoglobin 8.6 ... Neutrophils 0.01 ... Platelets 17 ...

Today I wake up feeling better than I have for the last week. Better because my intestines are not pleading to get out. And better because my mouth tastes less metallic. I guess the chemo (or to be precise, some of the physiological effect of the chemo) is leaving me. Its always a surprise to me when I emerge from chemo.

"Oh, that's what normal feels like. In hindsight, then, I really was feeling pretty crap."

It's hard to explain, to those who haven't experienced it, how loathsome chemotherapy is. Necessary, of course, I understand that. Put it this way, they worry about people using painkillers recreationally. I've never heard any such concern about chemo.

My counts are all right down - I avoid any transfusions today, but I'll be surprised if I don't need one tomorrow. In the meantime, while I feel ok sitting or lying down, when I stand up I promptly lose my hearing, feel giddy and have to lie down again to recover. That, presumably, is due to my severe anaemia and low blood pressure. Obviously, the easy solution is to stay sitting down. For the last few days I haven't felt like doing anything more than channel hopping the TV. Because I'm feeling so much better today I decide to have a TV free day, and catch up on some reading instead.

Friday 15 March 2013


Your powa, inside. It rocks me like a lullaby.
Powa - Tune Yards

Day 8 : ... Haemoglobin 9.5 ... Neutrophils 0.03 ... Platelets 63 ...

It's not so easy to be lighthearted and witty about things when you feel grim. The docs ask me (very very frequently) for any pains and symptoms, but when I list the mix of abdominal cramps, nausea, lightheadedness and shivers that between them make up most of my experience, they just shrug. This is all, afterall, par for the course.

My temperature has been periodically spiking over the magic threshold of 38C - the point at which the medical system kicks in. So I have no end of tests. Blood culture tests. Another trip to x-ray, wearing a mask. Being required to poo in a cardboard dish. Swabs of all my intimate places. The doctor comes to see me, at 1am, and go through the endless questions, and then I am given intravenous antibiotics at 2am, so I don't get a great night's sleep.

Still, they really are very chirpy about me, and I think that really is because things could be a lot worse. Whatever happens, things could always be worse. We should all remember that when we're feeling sorry for ourselves.

Wednesday 13 March 2013


She makes the sound, the sound the sea makes to calm me down. She makes the sound, the sound the sea makes, I am tired now.
Dissolve me - Alt-J

Day 6 : ... Haemoglobin 11.4 ... Neutrophils 0.16 ... Platelets 131 ...

Not much immune system left, and I think the lining of my digestive tract is deteriorating. Feeling pretty groggy today. Not even sure what TV I'm watching. My mouth tastes metallic. Food is unappealing. I moan to the nurse.
"Could you rate your pain from 1 to 10?"
Ah, that old chestnut. Presuming that 10 is cutting-your-own-arm-off-with-a-rusty-saw (127 Hours style) then this is certainly no more than a 4. But it's enough to make me happy to just lie in bed and shut my eyes. The nurse offers me pain control, and brings me... paracetamol. Woohoo!

Tuesday 12 March 2013


So tired in the morning, so tired in the morning. The clouds are spread out against the sky. I sit at my desk looking out of the window. I watch the world, passing by
So Tired in the Morning - Erland and the Carnival

Day 5 : ... Haemoglobin 11.2 ... Neutrophils 0.60 ... Platelets 164 ...

As soon as my blood test results come back today the nurse tells me I am confined to my room. Shall I show you round?

My room. A bed, a chair, a TV and lots of windows. What more could I ask for?

The business end of the room, in case you forget this is a hospital.

Part of my wonderful art collection. A couple of local young artists. I love the vibrancy of their work.

My view. I am well aware that there are little boys all over the country who would be very jealous.

Monday 11 March 2013


A little less conversation, a little more action please... A little more bite and a little less bark, a little less fight and a little more spark
A Little Less Conversation - Elvis Presley

Day 4 : ... Haemoglobin 12.0 ... Neutrophils 1.30 ... Platelets 200 ...

My scores are heading south, but oh so slowly. I feel a little less buoyant, a little more tired, but maybe that's all in my head? After nearly a week here, I'm just keen to get on with it. Though I reserve the right to change my mind about that, when things finally kick off. My consultant says I am the healthiest man on the ward, but he promises this will no longer be the case by the end of the week. What a charmer.

Sunday 10 March 2013


Been here before. Been here forever. Moving up slowly. Inertia keeps, moving up slowly.
Inertia Creeps - Massive Attack

Day 3 : ... Haemoglobin 11.0 ... Neutrophils 1.58 ... Platelets 220 ...

Little to report. Today's activity is much like yesterday's (except the TV schedule is different). Those following the ticker will do well to observe the small print that "counts may go up as well as down", and the trader's tip that "the hot money is going short on neutrophils right now". (Not sure I like the mental image I've just created, of Blood Count Traders. But the idea is out now, I can't unmake it. I could choose to not share it, but I don't.) What I mean is, my scores are basically unmoved today, but that can't last much longer. The test was at 6am - anything may have happened in the last 15 hours.

My wife and my mother (and no man can argue successfully against both simultaneously) have told me that my last mugshot was a poor representation of my condition. In my defence I should point out that at the time I had a bad rash caused by the fact that I'd just had a stem cell transplant (did I mention that?) and a great big dressing over the place where someone had hacked a hole in my neck (did I mention that too?)

But anyway, here's an alternative pic. I hope you like it. I had to take it several times to get one with only one chin. I'm doing fine here, and those who have visited will have seen that this is a bit like living in a hotel, with endless room service and new bed sheets every day. Except in hotels it is my custom to pee directly in the toilet. And if hotel chamber maids insisted on giving me injections, I'd probably check out.

Thanks for all the comments and messages - both on the blog and via fb. I'm not going to attempt to respond to them all. But I've appreciated the thoughts (from 6 continents! People of Antarctica, your indifference has been noted. No Christmas card for you). There is nothing more important in life than having the support of friends and family. Also, some messages from others living with myeloma, which are always a source of solace.

(Anyone interested in a wider view of the myeloma world? Check out

Saturday 9 March 2013


Watchin' windows. Do they know what I know? Silently. I’m away, I’m away.
Watchin' Windows - Roni Size

Day 2 : ... Haemoglobin 10.7 ... Neutrophils 1.41 ... Platelets 232 ...

Today's only event is to move from my shared room to one on my own. I think this is better - it will certainly bring more peace of mind as my neutrophils go down. The NHS has its own peculiar concept of time - they decided the best time to move me was 5:45am.

Apart from that... I have my blood tests. I have my 'obs' (blood pressure, pulse and temperature) checked. I pee in my jug and record it. I take my pills. I eat my breakfast. I brush my teeth and use both my mouthwashes. I pee in my jug and record it. I get up and shower (removing my anti-embolism socks, making sure not to get my pipes wet as I wash, and then putting the anti-embolism socks back on). I have my 'obs' checked. I do my exercises, as instructed. I talk to the boys on the phone. I watch a bit of Top Gear on Dave. I pee in my jug and record it. I open my laptop and do a few minutes of work. I eat my lunch. I take my pills. I brush my teeth and use both my mouthwashes. I go for a walk to the front door of the hospital, in order to see the (grey) sky, buy a decent coffee and prove I can still manage to climb the stairs. I play crib with my brother. I have my 'obs' checked. I watch some pretty poor rugby between Ireland and France. I pee in my jug and record it. I eat my supper. I brush my teeth and use both my mouthwashes. I take my pills and have my injection. I chat with a friend (I am lucky, and grateful, to have visitors). I have my 'obs' checked, and my weight. I pee in my jug and record it. I spend an hour catching up with Marisa. I take my pills. I brush my teeth and use both my mouthwashes. I watch a bit of "Made in Dagenham" on TV. I pee in my jug and record it. I go to bed.

It's a funny existence - sitting in hospital waiting to be ill. I feel fine. But my neutrophils have more than halved in the last 24hrs - evidence my bone marrow has been suppressed, and an indication that I will feel different soon.

Friday 8 March 2013


Now you may try to subtract it, but it just won't go away. Three times one? What is it? One, two, three! That's the magic number
The Magic Number - De La Soul

Day 1 : ... Haemoglobin 10.8 ... Neutrophils 3.84 ... Platelets 303 ...

A couple of people made fun of my mathematical aside yesterday - perfectly reasonably. I am part maths-nerd (amongst everything else). Myeloma is a lot about numbers. Because it's so damned complicated.

The earliest organisms to develop differentiated cells, some 700 million years ago, included early sponges. They developed cells with a specific function, which scientists call archaeocytes. Before that, all the cells of a multicellular life form were the same - like slimes and moulds still are. Archaeocytes specialised in transporting energy from one cell to another, and possibly also immunity. They were the prototype of blood (hence the name). They continued to evolve, some becoming the first stem cells - capable of creating specialised cells for many different roles. That is the basis for the evolution of organs, and organisms as we recognise them. I don't know if we evolved from these sponges, or in parallel but it seems to me that our organs and our bones have evolved out of our blood. It explains why blood cancers are so complicated - they are within very old genetic code.

Our blood stem cells live in our bone marrow. And myeloma is rogue immune system cells, caused by a defective stem cell. Bone marrow is pretty inaccessible, so the best way to monitor what's going on is to see what's in the blood - what are the stem cells producing. I have lots of daily blood tests. My 'eloma produces "kappa light chains", so that's the proxy measure for my tumour load. Your kappa-FLC score is probably about 20. Mine is 500. At diagnosis, I was at 1,300. So we'll be watching to see if that comes down further in the next few months. (The actual numbers are somewhat arbitrary, each case of myeloma can produce different quantities of light chains.)

In the mean time, we'll be watching the rest of my blood because with my bone marrow nuked, I'm inevitably going to have a few problems in the weeks ahead.

Haemoglobin: 10.8
Red blood cells carry oxygen round the body, using haemoglobin. A normal haemoglobin count is >14. So mine is already low, but that's been true for ages (and explains why I suffer fatigue). This will probably drop from now on. If it gets to 8 then I'll need a transfusion (pretty likely).

Neutrophils: 3.84
Various types of white blood cells control immunity. We'll just follow neutrophils as an indicator. Normal is >2.5. So I'm doing fine so far. In fact, I feel a bit of a fraud even being here. This will drop soon. I can't have a transfusion of white blood, so we just have to wait until my stem cells get to work. If your neutrophils were <1 you'd be told you were neutropenic, but we won't pay much attention until mine are <0.5 and we won't get really excited until they reach zero - which will mean I have no immunity. When they start to come up again, we will know my stem cells have grafted.

Platelets: 303
Platelets control blood clotting. Normal is >150. So I have plenty (my nurse says I have enough for the whole ward). I'll need a transfusion if these fall below 20. But even before that I'll have to be careful not to cut myself. So, while I'm still ok, I decided today was a good day for a clean shave - by the time it all starts falling out (which it is certain to do) I will probably not be allowed to use a razor.

Thursday 7 March 2013


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

Day 0 : Stem Cell Transplant

Here's a strange place to be. In between. The short term reactions to the melphalan (all carefully documented - but I'll spare you the tally) have worn off. Deep inside me things are changing. (Dying, I hope! Die, myeloma, die!). But I can't feel any difference. There has to be a 24 hour gap twixt chemo and stem cells, so we are simply counting time. I feel stir crazy in my room. (This is in part because I'm sharing a room - bring on the day when I'm too weak and they have to isolate me.)

The stem cells are the main event. Have to have all sorts of people in attendance, and the usual roll call of name, date of birth and hospital number. I'm having exactly one third of my harvested cells back - that's 4.6m/kg - or 360 million cells in total. I have to have some meds in advance, to prevent reactions to the stuff my cells have been preserved in. And then the cells themselves go in pretty quickly. You can actually see the cells working their way down the tube. I smell of sweetcorn, apparently (can hardly smell it myself) from the preservative, but apart from that, all is well.

Go to work, boys! Recolonise my bones! Grow new marrow, and make me reborn. Stem cell transplantees often talk about having a new birthday (how regal). My SCT birthday will be 07/03. (An equivalent fraction of 14/06, by pleasing mathematical coincidence.)

But most importantly, I'm on the road to recovery. I've always loved travelling. I wonder what the potholes will be like, and if the bus has comfy seats?

Wednesday 6 March 2013


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

Day -1 : melphalan chemotherapy

My morning starts very early with blood tests. I discover that the new plumbing means I can just flop all my tubes out and lie there, half asleep. How very civilised. I must look about as interested as a sow sleeping while her piglets suckle, but I don't care. Once the blood test results are confirmed, the melphalan prescription goes down to the pharmacy. Melphalan is a "nitrogen mustard" - the same family of chemicals as mustard gas. It's pretty indiscriminate about which cells it kills. So in preparation, to flush my kidneys, I'm given a litre of fluids and a diuretic. Within 30 mins I'm wheeling my drip in and out of the toilet - where I have to pee in a measuring jug and record the quantity each time. At the same time I'm also chewing my way through a large jug of ice, to reduce the blood circulation in my mouth and hopefully reduce the damage there too. I must look pretty bizarre.

As I had anticipated, the actual experience of treatment is relatively underwhelming. It only lasts about 20 mins. But hopefully, that will do for most of my myeloma. Tastes and smells funny, but hasn't made me feel sick yet. Tomorrow I'll need my stem cells, to salvage the damage.

To while away the time, I've been given this form to complete. I have to record the volume of fluid drunk, and of urine produced. I wonder if they'd like me to puke in my measuring jug too?

Tuesday 5 March 2013


Bless my heart, bless my mind. I got so much to do, I ain't got much time.
Hold on - Alabama Shakes

Much to my surprise, I'm in hospital tonight.

Have my patience tested today. My flesh wounds from yesterday are stinging - I've had little sleep. I have breakfast with the children, then skulk back to bed. Needless to say, the hospital doesn't call. When I phone in at 2pm things don't sound promising. But my new pipework needs cleaning, so I check in as an outpatient and get myself flushed. Then back home. (At least it's so close by. 10 minutes walk.)

Waiting. Call them again. They'll call me back. Waiting. They call me. No bed. So I tell the boys I'm home another night. Then finally, at 6:30 (the witching hour, as we prepare for three consecutive children's bedtimes) I get another call. A bed.

Needless to say that goes down like a bucket of the proverbial with two tired boys. (Lyndon, bless his heart, just smiles when I say goodnight.) This is all tough on them as it is. So it's frustrating when the system clumsily makes it worse. Our goodbyes yesterday morning at the school gate were nonchalant. Tonight's are tearful. Gyles can't articulate his emotions - he just cries and clings. Ben doesn't want to get in to his bed and goes to sleep in ours. A few minutes later he appears downstairs with my special pillow.

Still, I'm in. Here's my view.

Monday 4 March 2013


Knock three times on the ceiling if you want me. Twice on the pipe if the answer is no
Knock three times - Tony Orlando

No bed available today.

So I have to wait another day. I'm not frustrated - I know it just means some other soul is not quite ready to be discharged yet. Soon enough it may be me delaying others. Patience is something else I've learned a bit about lately. And I get another night in my own bed, with my wife. And another breakfast with my boys.

But I did go into hospital during the day and I'm delighted to be able to show you my new plumbing.

Think what you like.

At least you don't need to move the dishwasher, cut the worktop and demolish some cupboards to get access to it, which is more than can be said for our boiler.

Mind you, I didn't have to lie on my back for an hour with a plastic sheet sellotaped over my face when they fitted the boiler.

Swings and roundabouts.

Sunday 3 March 2013


Keep your eyes on the road, your hands upon the wheel. We're going to the Roadhouse. We're gonna have a real good time
Roadhouse Blues - The Doors

My fingers have been prised, reluctantly, from the controls

I'm used to being in control. In the (nearly) 22 years since I left home, I've always considered myself thoroughly independent. I'm also used to having (or thinking I have) nearly boundless inner reserves to draw on to get stuff done. I'm the guy who lived with no electricity or running water. I'm the guy who trekked 5,000m mountain passes in Peru. I'm the guy who set up a business in the teeth of the financial crisis. And started a family at the same time. Dammit, I'm the guy who swam with alligators/ survived by eating lip protector/ negotiated (alright paid) to be released from being held hostage by Tigrayan villagers/ and smooth talked his way out of trouble with the customs men in Mali and the policemen in Pune. I'm not quite Ernest Shackleton, I grant you, but I'm the guy who can run a business, train to teach and be a Dad to three young children, all at once.

Only I can't do all these things, and fight myeloma.

My medics, my tutor, and most of all Marisa, have spent the last few weeks cajoling and commanding me to let go. I find it incredibly hard. I'm frightened of the boredom that might ensue, and more of the loss of control. Keep your hands on the wheel, Alex. Maybe the last 6 months, when I've continued my business, and my teaching, in the teeth of treatment, have been testament to my strength. Maybe they have just been testament to my stubbornness. Right now, I'm not sure I know.

I've always prided myself on keeping control, whatever might be going on inside. Twice in my life that has been hard to do. Jump back to 1995. I switched degree courses mid-stream in my third year. A great decision, but it gave me a lot of catching up to do. The workload got to me. For a month or two I used to hide when I couldn't cope - climb over the fence and spend the night sat under a tree in the college sports ground, where no-one would find me. Maybe my girlfriend knew something was up. I doubt anyone else did. Forward to 2002. I was working in a small consultancy, rapidly taking on responsibilities. Never underestimate the toxic powers of stress. There were times I couldn't disconnect my mind from work at all. I broke out in boils on my arms and legs. But I hope only Marisa and a few of my friends noticed things weren't right.

It's impossible to carry on the same pretence when you are being assaulted by myeloma. The impact on my mobility, my energy, my focus are undisguisable, not to mention the hair loss. The facade of invincibility tumbles down.

So, for the next month I will focus only on me, and the journey I must go through. And when I have sufficient energy, I will focus it on Marisa, Ben, Gyles and Lyndon. When I have more to give than that, I will review my life, and see just what and where deserves me. I refuse to be grateful to myeloma for anything, but I have learnt a lot, lately, about what really matters.

Inevitably, sticking the blog up last week generated quite a lot of messages (thank you all). Several people discussed issues associated with bravery, strength and determination. I'll let you into a secret. I'm not brave or strong - but I have no other choice. If it was just for me, I'd probably have given up already, but (to steal a thought from my friend and fellow traveller Sean Murray) I'm not battling for me. I'm just doing all I can for Ben, Gyles & Lyndon's Daddy, and for Marisa's husband. They're worth everything I've got.

Saturday 2 March 2013


They wanna get my gold on the ceiling. I ain’t blind; just a matter of time before you steal it. It’s alright; ain’t no guard in my house
Gold on the ceiling - Black Keys

So many tests. I was back to hospital for more on Wednesday - took from 9 'til 4. Since August I guess I've spent on average two days per week in this hospital, either being treated, or tested.

Lung function test - check. Except I don't seem to be able to follow the instructions. Breath in. Breath out. Hold it. Slow breaths. Fast breaths. It's all very complicated. And the machine means I have to hold my head at a slightly uncomfortable angle. My ribcage takes this as an opportunity to go all achy and weird and distracting. I use up my 5 allotted goes on the machine (I think its giving you a little dose of carbon monoxide each time, so you can only have maximum 5 attempts). The lung unit waiting room is a bit grim. Smells of stale cigarettes from other people's breath, and everyone is a bit wheezy and puffy-skinned. Thank goodness I'm not ill, like these people, I think. I wonder what they'd make of the haematology department?

Bone marrow biopsy - check. This is always a good opportunity for doctors to practice their small talk, a game I'm willing to join in if trying to keep talking can serve as any kind of distraction. Today's doctor chooses a slightly unusual topic.
"So how did you find the PADIMAC treatment?"
"Well, I'm still here"
"But did you get any side effects?"
Try it some time - when you are in pain: distract yourself by recalling previous unpleasant experiences. Let me know how you get on. Didn't really work that well for me.
As always, she has to do the bony bit of the procedure twice because the first sample is no good.
"Your bones are unusual, some places are very hard, some places very soft"
"I know, that's why I'm here, really"

Chest x-ray - check. Why oh why did he have to adjust the chin rest the final two centimetres upward? Now my ribcage has another opportunity to go off on one.
"You need to stand still"
I can remember the days when x-rays were things to be used sparingly. We've stopped worrying about little things like that.

Kidney function test - check. This involves returning to the nuclear medicine unit. Down in the basement. Radioactive symbols everywhere. Injection of something radioactive, and then hourly blood tests for 4 hours. This is where I had my first bone scan. Memories.

All done and home we go. I don't want to know any of the results, thanks. As long as we're good to go for next week.

Phone call late on Friday afternoon - everything is OK. I'm expected back in the hospital 12:30 on Monday.