Monday 24 December 2012

Front line

When they kick out your front door, how you gonna come?
Guns of Brixton - The Clash

My "front line" therapy consisted of 5 months of chemotherapy. My myeloma was active, and I was getting increasingly ill. The drugs are powerful and knock you about a bit. And my head was spinning. Here's a flavour of the first two months.

August 2nd
A call with the myeloma nurse. I'm trying to work out which treatment programme to sign up for. Do I have the thalidomide based treatment on the NHS, followed up with a stem cell transplant? Or do I have the velcade/bortezomib based treatment in the PADIMAC trial? But if I do this and get a complete or very good partial response, they will want me to delay having a stem cell transplant.

There’s still so much I don’t understand. What’s “Very Good Partial Remission”? And what’s the prognosis if you get one? She can’t answer the second half of that. Because they don’t know (she doesn’t say that, she always finds sets of words about how difficult it is to generalize). What she does say is there’s plenty of evidence to lead most doctors in Europe to reckon front-line use of velcade is beneficial, and it’ll probably be licensed soon, and when it is, that’s what they’ll probably recommend for people like me.

And as for the stem cell transplant, I'm worried about signing up to a trial where I might not have one, when everyone seems to think they are the most important part of front line treatment. When I push her she confirms that were I to start the trial and then opt out, I’d not have lost any of my entitlements. I could then ask for an SCT. So the choice right now I reason, is about the velcade, not the transplant. And that’s much more straightforward. I’m beginning to realise that myeloma is full of “right now” decisions, only constrained by considerations of how one type of treatment might influence (preclude) other treatments later.
So PADIMAC it is!!

When can I start? She says either w/c 13 or w/c 20. I say that’s not precise enough – I need to plan my family’s summer. She eventually says she’s 70% confident we can start w/c 13th. I ask her why the 30%. This is basically because she hasn’t got me an appointment to have a PICC line catheter put in my arm, and I need that to have the treatment. So all we need now is to get the PICC booked in. But 70% will have to do – and so we book a week away at the end of the month, and for the older boys to go to Disneyland with my parents from 13th. The rest of our summer plans are in shreds.

I’ve received a few – very tasteful – mails from family, so I reply to them as a group. Thanks for your thoughts, here’s a bit more about myeloma, and here’s where I am today. I feel compelled to explain myeloma to people, otherwise they’ll just read all the awfulness online. The reality is pretty tough, but it isn’t as bleak and grim as all the “3-4 years” stuff one is presented with if one looks in unsympathetic places like Wikipedia.

August 3rd
Marisa tells me she’s decided she’s going to have a whole week off thinking about myeloma next week. In my heart I think this is a good thing – she’s been dwelling on it. But instead, rather unkindly, I say its all very well, but I can’t have “a week off”, and give the example of the need to cancel all our holiday travel plans. As it happens, I’d just had an email from one of the places we’re due to stay. Enough impetus to write a few depth-charge emails to cancel our bookings. While I’m at it I phone my course coordinator at university and let them know, and reach out to someone at church, so they know too. Then I feel I’ve told everyone I need to.

I feel bad about my response to Marisa. I’m worried she’s pogoing between despair and denial, and ultimately, needs to get to another place. We both do.

The nurse has promised to call me before she leaves for the day – and 2 weeks holiday – at 2pm, with a plan for my remaining tests so we can get started w/c 13th. At 2:15 I’m staring at my phone wondering whether to call her. Then she rings. She’s stayed late to try to sort one specific thing out for me. She has a plan worked out. I tell her I was staring at the phone.
“Alex, you can rely on me”, she says.
I start to cry and mumble back
“I know, I can”.
Only I don’t know, actually, because I’ve only met her twice, and there are so many other people I’ve met and I know I absolutely can’t rely on some of them. But I need to rely on someone, so I’m going to choose to rely on her. That’s a hell of a responsibility. I hope she really understands it. Of course, I don’t manage to say any of this, I just about manage to end the conversation in a dignified way and wish her well for her holiday.

August 4th
A day in town with friends, to watch Olympics on the big screens. All OK as long as I am very careful about how much walking, and take a chair so I can always sit down. Lovely friends, and a lovely day out. Not for the first time it's hard not to be resentful of strangers – swanning around like life’s easy; or, worse, standing on station platforms moaning about things that aren’t remotely big deals (when you know what a big deal really is).
“They didn’t have any in my size" So unfair!
“We only went to see the Beach Volleyball so we’ll never get to go to the Olympic Park" Shucks, you really missed out in life!
Even worse than that, being beastly to their children (this is a common one in Camberwell)
“Didn’t I tell you to shut up! [smack]”
It’s hard to know what to do with these feelings – after all the rest of the world hasn’t changed, only me. Why can’t some of these people have the serious issues to deal with? Why do the lives of my children – who get mostly loving parenting – have to be blighted? Fortunately, I guess, I don’t feel jealous or resentful of my friends, long may that last. But I don’t like angry and misanthropic feelings at all, and I hope they are a transient part of this experience.

August 6th
To the Olympics. A diversion (well needed). But first I have to negotiate the mobility transport to get in. The door keeper on the first leg gives me a highly suspicious look – I am after all a fit looking 6’4” male with no walking aid. On the other hand, I have a broken back and rampant bone pain, all of which gets worse with walking. I have to demand my rights – I do need transport, thank you very muchly. Fortunately, it gets easier after that, though being on a golf buggy full of oldies, beeping through the crowds, is an experience requiring a sense of humour, and every start and stop is really painful anyway, so it is only a partial solution to life’s problems.
On the way home the tube station is heaving. Rather than get on the first train, we head for the second, which is standing empty on the opposite platform, so I can get a seat. Once it has filled up and set off I find myself with a woman stood in front of me – probably in her 60s, but youngish for it, and dressed like someone from west London who wouldn’t normally take the tube. I can see her casting dirty looks at those of us in seats, and calling out to her husband something about
“... don’t realise how old I am!”
When the tube finally empties a bit, the couple sat down opposite us. She turns to him and says – clearly deliberately loudly for us to hear – that it was awful how some people hogged the seats. Marisa says to me
“Did you hear that, I’m really angry”,
and I reply – loud enough to be heard – something basically to the effect that she could
“f*** off”.
Not very elegant of me. What I wanted to have said (later, when I’d got my script in my head) was.

“(1) Please don’t take this as a compliment, because you don’t deserve one, but frankly you don’t look as though you need a seat. You should bear that in mind – you can’t always tell who needs a seat, just by looking. (2) These seats are reserved for those who need one, they aren’t an entitlement of age. (3) If you wanted a seat, you could have simply waited for the next train, which is what I did, because even if I sit all the way home I probably won’t be able to walk tomorrow, which I suspect isn’t a problem that will face you. And (4) if you really do need a seat, it would be more effective, and more polite, simply to say to someone, ‘Excuse me but I really need a seat, would it be possible if I could sit here’. That, after all, is what I would have to do, if I were in your position.”

I don’t know whether saying that would have helped. I understand that people don’t look at me and think ‘invalid’ – in fact I’m glad they don’t, but it's not nice feeling the need to continually justify oneself, either.

August 7th
Too much standing up and sitting down for national anthems yesterday? Feel like shit.
In to sign the PADIMAC consents. Yet more people! I know my nurse is on holiday, but I’d at least hoped to see the consultant. But we make do with what we’re given. I can’t help laugh when I'm told I’ll need to spend 24hrs peeing in a big bottle, and then she adds
“There are instructions, on the side of the bottle, how to do it”.
And I get quite frustrated when the registrar tells me – when I asked about infection risks and my family – that it would be best to avoid contact with children while I’m being treated. This just seems ignorant and insensitive. Even the suggestion to use it as a “good excuse” to avoid changing nappies fails to take account of quite how much burden is already falling on Marisa running around after me when I just need to sit, worrying about my diet, fending off callers, doing all the fetching and carrying I can’t.
They take me to visit the chemo ward. Like a tour of a new workplace
“There’s the coffee machine”.
The whole place looks like some ghastly hospice full of listless pale people on drips. Will that be me? Another bone marrow biopsy. Yet again they have to do it twice. The doctor says it is because my samples come up quite crumbly – i.e. the region of my sacrum is affected significantly by myeloma. This is glum news, which I mention gently to Marisa, but don’t share further. It suggests the bone damage extends from ribs and spine to pelvis. I know it’s visible in my skull too because the consultant showed me the pictures, but I’ve never had any pain up there (and hope I never do).

August 8th
Counselling. The counsellor is really nice, prepared to listen to me ramble on, and give me a chance to say things I daren’t say to anyone else. Of course, he couldn’t actually do anything. But I’ll go see him again. People suggest one might be reluctant to seek counselling, as though it might be a sign you were losing your mind. Frankly, given quite how much you have to deal with, I think you’d be mad not to at least try. It was nice to share a few unsharable thoughts.
The kids are being really hard work. Marisa says she doesn’t know how she’d cope on her own. And then we both say some unrepeatable things to each other. In the end I explain (clumsily) that if the worst happens, I won’t even be here to see how the “story” of our family plays out. I need the reassurance that they’d all cope and ultimately thrive, without me.

August 10th
Have decided today is the day to tell the children (not the baby, obviously). I have rehearsed another of my scripts!

“The doctors have been trying to work out why Daddy’s bones are so sore. They’ve found out that Daddy’s bones are ill deep inside. They are going to give Daddy medicine deep inside. This will mean Daddy has a tube fitted into his arm that goes right inside to his heart. It also means that Daddy might feel better some days, and worse on others. We all have to remember, at all times, not to jump on Daddy. And if we ever find any of Daddy’s medicine in the house, we must not eat it, we must give it to Daddy. And if we ever feel worried or have a question, or someone says something to us that we don’t like or understand we can always, always, come ask Daddy. Do we all understand? Are there any questions?”
“What colour will the tube be?”  asks Gyles.
“I don’t know, what colour would you like?”
“I’ll see what I can find at the hospital”.

It seems too cruel that they have to know any of this. And the sudden change in the way they hug me in the evenings is quite hard to deal with. They look nervous just coming near me.

Sadly, on the day, all the tubes are white.

August 11th
More emails, and cards and letters now the news has got out. I hope none of the emailers are really under any misapprehension that I’m going to be writing them regular updates, because I’m not. Some people write better than others. Some are easy to read. Some make you cry, in a nice way. Some make you cry in a slightly less nice way. One or two are actually slightly annoying to be honest. I guess one has to accept that everyone is simply trying to deal with it as best they can.

August 13th
PICC this morning. While doing all the consent blah they explain that if my veins were to spasm then sometimes it’s impossible to proceed, and best to try again another day. I explain my treatment starts tomorrow, so I’d rather not be in that situation. And then I lie there thinking “don’t spasm, don’t spasm”. Let’s face it I spasm frequently every day. But this morning, all is OK.

August 14th
Cycle 1 Day 1
After a last minute cock-up I end off having to start day 1 with a trip to Tommy’s for a PET scan. So suddenly I have a congested agenda, and have to bring Marisa (and Lyndon) as my taxi service. We start well, but then there’s some kind of delay and I lose my cool with the staff (the first time I’ve done so during all of this saga). This whole process is so awful and so frustrating and I just want to get on with it to get this horrible disease under control and get rid of the pain and not have my children’s summer completely obliterated. In the end it’s all OK. I write to them afterwards to apologise. They no doubt work really hard in a really stressful environment and get plenty of grumpy gits like me. Which they don’t deserve. And I wonder how many bother to apologise afterwards.
To my slight surprise Marisa is the embodiment of calm and composure – I thoughts she’d be worse than me, but she’s brilliant. Talking afterwards, I think she had her moment, but she got it together, which is what counts. The receptionist (whose husband has cancer – so this is a qualified comment) says you have to get used to this kind of situation. But I’m not sure she’s always right. If it was only me, I’d go with the flow – keeping my stress level down is actually an important element. But it’s not only me.

The first day’s treatment is fine but wow what a lot of pills. I have to find quite a big tin to keep them in (one of those dishwasher tablet refill tins is just about big enough) and write myself a detailed itinerary of what I have and why, and then a daily timetable to make sure I take them all as I should. The upside today is no immediate side affects at all.
They take my height and weight. I’m only 6’2”. So along with my summer, my health and all my dreams, this dreadful disease has already taken 2 inches off my height.
I get more supportive texts and mails today. The news is spreading among our friends. All very good messages and I’m glad to get them. Still makes you sad though, realising there are so many other people out there worrying. Some people communicate so beautifully, but sometimes we're simply being bombarded with too many messages. I know it’s well-meant, but it very irritating. We need to dictate how much myeloma dominates the conversation: Make a date to see a friend. Tell them in advance that it will be an occasion for talking about life as normal: the summer, the children. I think we have a right to choose when we do, and don’t, deal with myeloma, as far as we possibly can control it.

August 15th
Day 2
Treatment only takes an hour. How pleasant and efficient. I actually enjoy it. And the DEX appears to have solved most of my pain, so I’m skipping around like a new person. Let’s hope there are more days like today.
A headache this afternoon and then hiccups that felt they could turn, at any moment, into vomits. A bit anxious about whether, by tomorrow, I’ll be dealing with “side effects”.
Marisa has to go next door to collect a parcel that had been dropped off with our neighbour, who is in her 80s and very dear to us. I told her I was ill a couple of weeks ago – because I knew she’d care and because I knew she’d notice our comings and goings (and our lack of big summer holiday). But to be honest, we’ve been avoiding the conversation since then. Bound to ask if we see her, and we're not up to talking about it, right now. Tricky stuff. Who to talk to, when to talk. I guess it will get easier in time. At the moment, Marisa would prefer to talk to nobody. But that’s not possible. We are fortunate to have a few friends who are the absolute masters of discretion. Very valuable attributes indeed.

August 16th
I’m officially a DEXamanaic. full of steroids. Marisa says it’s impossible to get me to stop talking, and I’m in a constant frenzy of doing things. It reminds me of misspent moments of my youth. I fear what the comedown will feel like, at the weekend.

August 17th-23rd
The first week of my cycle finishes with a horrible down which I think is a combination of withdrawal from the steroids and side effects from my first bisphosphonate injection. It leaves me in a total heap – hardly able to get out of bed, shaky, miserable and in huge amounts of pain. I get a gentle ticking off at the hospital, for not having even bothered to check my temperature or referred to any of my paperwork to consider whether this is something that should trigger a call to the doctor. The experience certainly makes me take the whole process a bit more seriously.
The pain gets too bad and I have a complete change of pain management recommended – using morphine and a small amount of antidepressant to, between them, reduce the bone pain and overcome the muscle spasms.
By the second week of the cycle I’m really short of breath, which presumably reflects the 20% fall in my blood count, and is a direct consequence of the chemo. Even walking through the hospital is hard work.

August 24th-31st
The third week of the cycle involves no treatment, except steroid pills, so all that stops us leaving the clutches of the hospital is the need to change my PICC line dressing. Marisa bravely agrees to learn how to do it – first under supervision in hospital, and the following week “in the field”, while we stay at Center Parcs. I’m reduced to not much activity – dependent on mobility transport for much of the week, which is a mental challenge, if not a physical one. I’m also taking a lot of morphine. But I enjoy the escape – it’s a good week, and I feel my first cycle has been accomplished. I’d be lying if I said I wasn’t scared at the thought of going through this numerous times.

September 1st
My hair is falling out in great clumps. Strangely this (like the loss of height) matters to me more than I'd expected – just another thing the disease is taking away: my right to look healthy. A buzz cut is required. But even very short, my hair simply continues to come out. It won’t be long before it has to go completely – and this has to be accompanied by a conversation with the children that I could well do without.

September 3rd
Cycle 2 Day 1
I go into hospital to start my second cycle and there’s confusion all round. They have me down for tomorrow and though I point out that we’ve discussed for weeks why I want cycles that start on Mondays, I’m left unsure whether I’ll get treated. Eventually, it’s OK.
Then I stop in the pharmacy to pick up my painkillers on the way home only to discover the registrar has cancelled my prescription because she’s worried about my liver function. I’m left in a panic – even though I’ve been taking less painkillers in the last few days (they made me so groggy), I’m fully aware how out of control my pain was 2 weeks ago. Why can’t they talk to me as these decisions are made?
I take to the wine bottle tonight – in hindsight, a mistake. Gonna have to stop drinking.

September 4th
While sitting in the waiting area watching the Paralympics there’s an ad about Bowel Cancer. How much I hate the c-word, I just don’t want to hear about it. And the ad implies that late diagnosis of cancer is the patient’s fault for not getting checked out soon enough. How untrue some of us know that to be!
On the ward I meet another man in my own position – on PADIMAC, aged 40. It’s really comforting to see a real person.
I have a good day, but a bad evening – which I think is my own fault for being late taking my anti-emetic. Not a mistake I’ll repeat.

September 5th
Ben returns to school, and so I have to work out how to explain our circumstances to the staff. Myeloma involves a lot of explanations, but I’m frightened of what playground gossip might bring, and so the teachers need some understanding. It’s just one of many – this week I also write to my current university class, who I will see imminently, and to a range of previous university friends with whom I’m due for a reunion. People will know something’s up when they see me – bald and tea-total, so there’s no sense in which I can hide. My mother says the concerns about people feeling pity/sorry will only be shortlived, but I’m not sure that’s the point. It’s intense in the process and anyway it’s as much about the barrier, and the intrusion into my privacy and self-image that bothers me.
Before schools starts we have a meal-time conversation about illness, and I encourage the boys to ask questions. So we talk about PICC lines and pissing in bottles. It’s funny what they pick up on. I nervously introduce the c-word in to conversation – they may not need to hear it, but if they do they need to know its OK to repeat it in my presence. How I hate dumping this on such young minds. Why should they have to be aware of any of this?

September 6th
My liver function tests have been causing concern all week. Today the decision is taken – beyond my control, of course – that I should stop treatment for a week to allow it to recover. This frustrates me enormously, but the wonderful nurse talks me down. The aim is remission, and the drugs are a means. The doses are (frankly) best guess (those aren’t quite her words) and missing a treatment or two is not the end of the world. It’s a journey.
On the upside, I get my first cycle’s light-chain score. My numbers have halved. So something is working. The first piece of good news I’ve had since the whole charade started in July. I take the positivity home with me, and find some quiet work to do as I wait for the steroids to wear off, and the likely feeling of being weaker over the next few days than the last. My myeloma is, for the first time, retreating. Long may that continue.

September 7th & 8th
I have 2 whole days at university – which I was expecting to miss, but now I can attend. I’ve emailed my class to warn them, and actually its OK – a few questions, but nothing too hard to deal with. It’s extremely nice just to play at “normal” for the day. My back hurts pretty badly by the end though.

September 10th
My first break from steroids in a month. How nice to feel vaguely sober.

September 14th
Back into hospital for liver tests – will I have the last velcade shot of the cycle. Its apparent that this was highly unlikely anyway, and my results aren’t good enough. Frustrating again – not just that I can’t have treatment, but also at the waste of time – ½ a day in hospital for nothing.

September 15th & 16th
Manage a good walk in Sydenham Woods. I seem to be getting much more mobile. And then a half day at Lambeth Country Show. The limit for me is too much standing about – that really doesn’t do my back any good. Taking a chair with me helps – as long as I have domestic staff to carry it!

September 21st
I decide to keep a longstanding engagement and attend a college reunion (20 years since we matriculated). I’m feeling well enough after the week off, and I’ve either got many of these ahead of me (in which case why worry), or not (in which case why miss opportunities). Again, I’ve prepared the ground with a few warnings. Only one muppet comes up to me and (drunk and socially inept) starts a conversation by asking about my hair. In hindsight I could have let him off with a multiple choice answer
“Either (a) it’s just a meaningless haircut, or (b) it’s a statement of sexual identity, or (c) it’s a product of chemotherapy, or (d) it’s because I’m going bald. Next question!”
Instead I just reply “chemotherapy”, which leaves him suitably stumped. Tit. Actually, this incident reminds me how much better at these things most people are – and thank goodness for that. Staying up until midnight in the college bar stone cold sober is a novel experience.

September 24th
Another week off – this time because of low white blood cells. I find myself being taught how to self-inject G-CSF. A couple of months ago that would have been a real nightmare, now it’s just another little hurdle – yeah, whatever. I’m much more calm about the week off too – que sera, sera. The last 2 weeks have done me a lot of psychological good. I reckon it has taken me about 10 weeks to get my head round myeloma. Obviously, things are far from good but at least I have got some perspective, can think about things without descending to tears, and can be a bit more patient about treatment. I usually think I’m a pretty rational soul – I’m surprised this has taken me so long, really. Says something about what a big adjustment it is, I guess.

September 26th – 28th
I manage 3 days consecutively in university lectures. Feeling so much better. However, I also feel bone pain creeping back into my ribs and pelvis – which makes me worried what’s going on down there, while I’m not being treated.

October 1st
Cycle 3 Day 1
All blood tests normal, so back on the drugs. Hurrah, though I feel a bit pukey.

October - December
Once I am back on the treatment, I manage to complete 6 three week cycles. My light-chain scores had indeed gone back up during the break, and they fall back to around 50% of where they started, but then stubbornly stay there. During cycles 3 and 4 I feel pretty grim, increasingly suffering from abdominal pain and bone pain which I conclude is a side effect of the velcade. It's a bit like being repeatedly beaten up. Cycles 5 and 6 are a little less arduous, but I'm very very glad to stop, just in time for Christmas.
As the drugs wash out of my system, I'm feeling the best I have for many months.
Overall we've got my myeloma into what the doctors call "partial remission" - which appears good enough to stop me having too many symptoms, but is not enough to leave it alone, so I must begin the preparations for stem cell transplant.

So, that was my introduction to chemo. On the up-side, I don't think it will ever be this tough again - the emotional component must have exacerbated things, and it wasn't until several weeks in that I began to feel I was in control of myself. On the down-side, I'm almost certain to have to take some or all of these drugs, and others, in the future. I better just get used to handling the side effects.

Saturday 1 September 2012

Myeloma WTF?!

You're not easy to love, no. Why is everything with you so complicated?
Complicated - Rihanna

It doesn't help, when you're told what's wrong, if you haven't even heard of it. I did a bit of research. Here's what I found.

The immune system

Antibodies enable the body to fight infection. They are produced by blood cells called B-cells, which are found in blood plasma, inside your bone marrow. Each antibody is in 2 halves, and each half consists of a heavy-chain and a light-chain connected together. The two halves sit side by side and the whole thing makes a “Y” shape.
There are 5 types of heavy-chain immunoglobulins: IgG, IgA, IgM, IgD, IgE
There are 2 types of light-chain: kappa (κ) and lamda (λ).
Each antibody contains just one type of heavy chain and one type of light chain, but your total immune system contains many different antibodies - with different specialised ends to the molecules so that each can detect a different kind of infection.

If you want to know anything else about how antibodies work and what they are supposed to do, you’ll have to read it elsewhere, because that's not the point of this post (and I'm no biologist).

What is myeloma?

We all produce defective cells all the time. Most of them don't reproduce, so they die out pretty quickly. A few are self replicating - cancerous. Most of these will fail to establish, or be detected and destroyed by the immune system. But if it is a particularly virulent cancer, and/or your immune system is low and/or you are just plain unlucky, a colony of cancer cells can become established.

Myeloma is just a story of what happens when things go wrong, where one rogue antibody-producing B-cell has become cancerous and multiplies uncontrollably. It starts to fill up the bone marrow, leaving less and less room for all the other cells that should be producing blood cells - red cells, white cells, antibodies and platelets.

In most cases (c.80%, but not mine) the myeloma cells produce antibodies. So myeloma can usually be detected by looking for immunoglobulins, where it will show up as a “spike” on the graph – indicating a huge number of monoclonal (i.e. identical) paraproteins (i.e. proteins that aren’t really supposed to be there). The cancer will produce a single type of immunoglobulin. IgG-myeloma is most common. IgA- is also relatively common, while IgM- is much less common, and IgD- and IgE- are very rare.

Myeloma can usually also be detected in light-chains, and in around 20% of cases (that’s me) the cancer cells only produce light-chains. The normal ratio for κ:λ light-chains in the blood is around 2:1 and any major deviation is a strong sign of some kind of neoplasm (i.e. some kind of abnormal proliferation). Myeloma is more common in the kappa chains (which includes me).

In a small percentage of cases the myeloma doesn’t secrete even light-chains beyond the bone marrow. This is called non-secretary myeloma and obviously makes detection and monitoring even more difficult.

How is myeloma detected?

Myeloma is diagnosed through a combination of
(a) symptoms (of which more below)
(b) immunoglobulin and light-chain detection in blood or urine, and
(c) bone marrow biopsy.

The actual level of paraprotein produced, in relation to the damage the myeloma is doing in the bones, varies from person to person. For me a light chain score of 1,500 was debilitating and life threatening. Some people present with scores of 15,000... or even more. Every case of myeloma is unique.

Its worth noting, as an example of how the science of myeloma is changing, that light-chain detection used to have to be done in urine, which is less than ideal because this is after they’ve passed through the kidneys, which will have removed a lot of them. This would mean later detection, and more risk of kidney damage. It is now possible to detect light-chains from blood (which is the test that effectively proved my myeloma diagnosis).

It’s also worth noting that the less said about bone marrow biopsy, the better.

What are the symptoms?

Because the body is producing large quantities of myeloma cells the ability to carry out other key functions in the bone marrow is crowded out. So in active myeloma there are reductions to red and white blood cell counts. So it causes anaemia, and a weak immune system.

Myeloma cells also disrupt the process of bone regeneration. Bones are living parts of the body and constantly being regenerated - old bone is broken down by cells called osteoclasts and replaced by new bone, formed by cells called osteoblasts.  Myeloma disrupts the osteoblasts, leading to bone failure. This typically takes the form of “holes”, though exactly what form depends on how bad the damage has become. My skeleton shows “latencies” from skull to pelvis under an MRI/PET scan, but these areas of lower bone density are not as severe as the lytic lesions located in my spine and ribs, which show up clearly on a bone scan. In particular, my spine lesions are bad enough that a number of my vertebrae fractured (when I stumbled off a kerb). Fractures are not uncommon – indeed it’s a very typical symptom leading to the process ending in myeloma diagnosis. As it happens, I have suffered previous rib fractures over several years, which remained undiagnosed until later. Sadly, in my experience of talking to others, that’s not unusual either. Unfortunately there is a massive job to be done in educating GPs about myeloma.

Bone breakdown can result in hypercalcemia, where there is excess calcium in the blood. Hypercalcemia is associated with “Stones, Bones, Groans, Thrones and Psychiatric Overtones”: just to add to the long list of things to think about if you have myeloma (kidney stones/ bone pain/ abdominal pain and nausea/ excessive urination/ and unsurprisingly, all else being considered, depression and anxiety).

As well as this, the increased pressure within the bones, along with the damage to bone surfaces, (usually in the spine, pelvis, skull and ribs, because this is where most of an adult’s blood plasma is contained, though there’s also some in the long bones of upper arms and legs) can be extremely painful. At first I didn’t know what “bone pain” meant. I’m quite sure now.

The excess protein chains in the blood put strain on the kidneys – this is especially true of the light-chains which are small enough to pass through the initial part of the kidney’s filtration system and clog things up elsewhere. So myeloma can cause kidney damage, and ultimately kidney failure. Again, this can be the symptom which triggers the process of diagnosis. Fortunately for me, at diagnosis my kidneys were still fine.

What's the prognosis?

The majority of myeloma diagnoses are in older people (median age at diagnosis is 70). It’s a rare condition anyway (<4/100,000 people per year, 1% of total cancer, 10% of blood cancers, much less common than leukemia or lymphoma), but even rarer among the “young”. Only 2% of myeloma diagnoses are under 40.

So it’s very difficult to describe the prognosis of a young myeloma patient. Typically around ¼ of myeloma diagnoses proceed downhill fast and die within a year, and another ¼ will die within 3-5 years. For the rest (let’s hope that’s me!) who are young... well, quite simply no-one knows. There are a number of even rarer conditions associated with myeloma –and there’s always the risk that myeloma will lead to something else – such as light-chain amyloidosis (which will probably kill you), or plasma cell leukemia (which will surely kill you). But myeloma is a systemic condition in its own right: it doesn’t move (metastesize) from one organ to another like an organ cancer might “spread”.

It usually relapses from remission. Subsequent periods of remission become shorter each time. Over time it becomes resistant to the currently available treatments.

How is it treated?

Myeloma can be treated through drugs and through stem cell transplants. Most people with myeloma also need treatment for bone damage.


  • Chemotherapy drugs, such as cyclophosphamide, doxorubicin and melphalan slow/stop cell growth. Because cancer cells are growing and multiplying disproportionately fast, they get hit hard by chemotherapy. Other fast changing/dividing cells (such as hair follicles and the surface inside your mouth) also get affected. Chemotherapy drugs make you feel pretty grim.
  • Other “novel agent” drugs target more specifically some of the cell functions particularly associated with myeloma. Thalidomide – despite its infamy – is a key myeloma drug. More recent discoveries include bortezomib, which is a part of a new family of drugs called protoeasome inhibitors. There are other drugs in trial, including monoclonal antibodies, that may re-activate the immune system to fight the myeloma. All these drugs have potential side effects. Peripheral neuropathy is a particular issue.
  • Steroids, such as dexamethasone and prednisone help multiply the effect of chemotherapy and other novel agent drugs, so they are quite often given at the same time. Steroids are also known to have positive effects in myeloma on their own. Steroids tend to create ups (high energy, sleeplessness) and downs (low energy, low mood) as you come on and off them. I do a lot of writing when I’m on steroids (I’m on them now!) They can also cause water retention.
Most initial treatment will involve all three drug types. Mine is “PAD” – which means bortezomib (PS-341), doxorubicin (Adriamycin), Dexamethasone. If successful, the drugs will put myeloma into remission – the levels of paraprotein will drop away and the body will appear to be relatively “normal” apart from the longer lasting consequences of bone and kidney damage. However, myeloma almost certainly relapses in time. It may be successfully treated by the same drugs, or it may become resistant to one drug regime, and have to be treated with another one. Eventually, it may become resistant to all drug regimes (refractory).

  • This is where the body is treated to kill off as much of the blood plasma as possible. Depending on how intensively the blood plasma is attacked – either through chemotherapy (usually using high does of a drug called melphalan) or through body irradiation – it may or may not be possible to completely remove the myeloma from the body.  But in most cases, the answer is not.
  • The body must then be re-infused with blood plasma. This can come from one of two sources: your own (autograft SCT), which would have been harvested in advance, or a donor (allograft SCT). The benefit of using donor cells is that they will potentially attack any residual myeloma cells ("graft versus tumour effect") leading to a complete cure. The benefit of using your own cells is that it is much, much less dangerous. Stem cell donation causes the reverse of the problem encountered in organ donation. Normally the “body” (i.e. the immune system) needs to accept the donated organ, but in a stem cell transplant, the new stem cells – which contain the immune system – need to accept the “body” (i.e. all the organs). If they don't then you get "graft versus host" disease.
  • Even a relatively “gentle” autograft SCT is a major procedure, meaning weeks in hospital and months in recovery. Older people may not be strong enough to withstand any SCT. Younger people may be able to have more than one in their lifetime.
But, aside from the prospect of allograft SCT, and the potential for a cure in the future (there’s a vaccine in trial in Israel, for example but it will be years before it is clear whether or not it might work), myeloma is not currently curable.

There are two ends of the spectrum when it comes to treating myeloma
a) The "throw everything at it at once and hope to cure it" approach. This can involve quite incredible cocktails of drugs, taken over several years, interspersed with multiple SCTs
b) The "use the available treatments one at a time and hope to string it out indefinitely" approach. For better or worse, this is where I'm heading.

Managing bone disease

Because myeloma leads to skeletal issues treatment involves things to directly address the bones too. In most cases – as is common for other conditions like osteoporosis – people with myeloma have monthly doses of bisphosphonates, which help coat the bone surface and reduce bone breakdown. This is normally continued for 2 years. This too can have side effects, such as osteonecrosis of the jaw.

Where there have been fractures, these can be treated too. In some instances this might mean pins in hips, for example. In mine it will mean vertrbroplasty, which is where acrylic cement is  either injected directly into compressed vertebrae to strengthen them, or injected between them after balloons have been used to recreate some of the space that has been lost due to bone compression. Unfortunately, although bones regenerate, they do so slowly – over the same timeframe as myeloma is likely to relapse. So while bone condition can be improved, it can’t be completely restored. And any areas that have suffered fractures are inevitably irreversibly weaker, anyway.

Wednesday 1 August 2012


Warning lights are flashing down at quality control
Industrial disease - Dire Straits

Myeloma is very rare in people under the age of 40. One consequence is that doctors aren't looking for it, and it often isn't diagnosed until it has caused a lot of damage.  This is what that experience was like for me.

It starts, somewhere, here. I'm on a bus with Gyles when the driver applies the brakes and I bang my chest on a seat rest. Something inside me pops. I have severe chest pain that won’t go away, way out of proportion to such a trivial knock. And it moves around - from one location to another. Even from one side of my body to the other. The doctor treats me like a hyperchondriac. I learn about the wonders of diclofenac - my first foray into what will become a long relationship with painkillers. After complaining to the doc that he isn't taking me seriously, I get referred for a chest x-ray. It shows nothing. I take this to mean there's no evidence of bone fractures (in fact, it wasn't the right kind of x-ray, but I didn't know that until much later).

So many dots I don’t join...
I have bouts of back pain, and intermittent chest problems – always with completely trivial “cause”s. For example: our car has an electrical fault and has taken to running its battery flat. With no power I can't release the boot to get at the jump leads. So I have several experiences reaching over the seats to get into the boot (and so putting my weight on my chest). Each time is agony, for days afterwards.
Increasingly I come to expect that any heavy lifting will cause me problems – even stuff that I know a fit man of my age should cope with: carrying boxes up stairs; getting the tent in/out of the loft; gardening. I harbour ambitions to buy land in the country, build a house, set up a hobby farm. But inside I wonder if I can really do this - I seem so frail. Many times I have to tell my children not to jump on me.
But the x-ray was clear. I am a fit healthy 36/7/8 year old. There's nothing wrong. I'm being feeble. So I do my best to ignore it all. But it won't go away. Am I imagining it? I wonder if I have some weird somatoform disorder - sensations of pain with no physical basis.

March 8th 2012
I get up really early to go for a run. Like 4am. This is because I’m in Stanford, California, teaching on a course. Night-time running when away on business is one of my secret pleasures. It means I can get a good 10km in before breakfast, keep my body clock a little more attuned to London time, and feel spectacular, and smug, all day.
I’ve been looking forward to this for weeks, England’s winter has been so cold, and my schedule so hectic, that I’ve hardly had a decent run since New Year. To be honest, this run is the best thing about the whole trip. The clocks in California are already on “Summer Time”, so at 4am it's dark. And this week there’s no moon. Where Campus Drive is unlit, it’s pitch black.
Towards the end of my run, I run off the edge of a kerb. It can only be 9 inches high, and I don’t fall over, but I come down with a real crunch. It already hasn’t been a good week for my back – a bit of inappropriate lifting, and a long flight. I know at once that I’ve upset things badly. The following morning I go out running again. I achieve another full circuit, but decide at the end that my back needs a rest. As it turns out, this is the last time I go running.

A lot happens in the next couple of months. Lyndon is born on April 16th and I begin a full time teaching placement two weeks later. Frankly, I haven’t got time for a bad back, so I ignore it. The pain is not getting much worse. I take a lot of ibuprofen. But slowly, the pain is increasing, and it’s different from previous back problems. In particular, there are weird muscle spasms all round my abdomen. My acupuncturist (a dear friend too) is amazed how stiff I am and says she’s not used to seeing muscle spasms like this. I have a couple of treatments with her, but I know this is really a job for a physio. When life calms down – I have one more overseas business trip to complete before June – then I’ll go to the doctor.

June 1st – 8th
We escape the jubilee (not my cup of tea at all) to a glorious Landmark Trust house in Dorset. Wolveton Gatehouse: spiral stairs, arrow-slit windows, oak beams and no TV. All week I realise I am really quite debilitated. The pain is getting worse, and after 3 months my back should, surely, be on the mend? Marisa tells me I must go to the doctor – she’s struggling with me not being any use for doing anything. I can’t even carry luggage up and down the spiral stairs.
On the way home we stop for lunch and I take the boys out in the beer garden to burn off energy. They play “It” around the picnic tables. I realise I simply can’t run – not even a couple of paces - due to the pain. I have to stand and watch while Grandad plays with them. He doesn’t mind, and they don’t notice. I feel terrible.

June 19th
I go to see the doctor (a different one, fortunately). She asks me the usual questions.
“Where does it hurt?” “Can you bend this way?” “Can you bend that way?”
I can’t give clear answers – it doesn’t really respond to bending, and it actually feels OK right now. And anyway, the pain moves about of its own volition. The most consistent (but not today) component is massive muscle spasms, which come from behind my shoulders all the way round to the front of my abdomen. In hindsight, I don't know why the fact that the pain was so difficult to pin down didn’t trigger any links in my mind at this stage to my recurring chest problems. Because they were always evasive like that too. (They still are.) She refers me to a physio, and gives me a load more diclofenac.

June 29th
The physio recommends a precautionary x-ray because it’s been 4 months since this flared up. He's sure its nothing – will just be mechanical. We plan some physio sessions anyway, starting next week.

July 3rd
During the back x-ray, I overhear the staff saying
“Does that look like compression?”
They do more x-rays. Someone asks me
“Have you been involved in an accident?”
When I say no I get to see the consultant. He says the report will be referred back and I should see someone in the next few days.
“Maybe an old injury is giving you some problems.”
I can do the two-and-two... I figure I’ve got vertebrae fractures. I begin for the first time to wonder if it’s the same problem as my chest. It can't be an old injury - my only possible “trauma” was in 1992 when I fell off the roof of NatWest Bank after a student party. But I went rowing the next morning after that. Even alcohol couldn't have acted as sufficient anaesthetic if I'd just broken my back! No, it must be new – must be the kerb in Stanford. I start googling “vertebrae fractures”. Have I got osteoporosis?

July 6th
Back to the physio. I have 3 vertebrae fractures T7, T8, T9 (actually, I have several more, we find out later). I can't have any physiotherapy until we’ve investigated. We discuss possible causes. He says
“It might just turn out to be left over from a drunken accident 20 years ago.”
He’s giving me optimism, I guess, and anyway, he doesn’t know. So I'm referred back to the doc. I’m worried, but only slightly more. 3 vertebrae sounds quite a lot, doesn't it. I google the vertebrae. The T- section stands for thoracic. These are the ones connected to ribs. T1-7 connect directly to ribs; T8-10 are aligned to floating ribs. Too much for a coincidence. My back and rib problems must be associated, I figure.

July 7th & 8th
Lots of googling. Could this really be a result of 20 year old trauma? Theoretically, it's possible, but I don’t believe it. I'm convinced that back and ribs are related, and that I have been breaking my ribs all these years (subsequent tests show up several rib fractures). If so the superficial causes of my injuries are as trivial and meaningless as a braking bus and a 9 inch kerb. Do I have osteoporosis? Or a similar condition? I decide it must be one of these. It can’t be anything worse, because everything worse is terrifying. Cancer? Necrotic infections? I google all the weird necrotic conditions. They’re all hideous, and frankly none of them sound any better.

Except they’re not  C  A  N  C  E  R.

To be honest, I can see that my symptoms don’t match any of them, expect myeloma, but I manage to hide that from myself. Marisa thinks I’ve got cancer. I tell her I haven’t, I’ve got osteoporosis.

July 9th
I go to see the doc. He says
"We need to take a broad approach” to find the cause.
So he orders a range of blood tests and a bone scan (what’s that?!) He doesn’t exactly ooze bedside manner. Professional and friendly – but I’m beginning to be worried, and he doesn’t do much to allay or manage my worry.

July 11th
Blood tests. I hate needles! (I get over this hang up pretty quickly, once I become a regular in the haematology dept. I still hate them, really, but I have bigger things to worry about, these days.)

July 12th
I have a bone scan. I’ve looked this up. It's nuclear medicine and measures bone metabolism. I notice this isn’t a DEXA scan, which would measure bone density. DEXA would be a good test for osteoporosis, whereas a bone scan will show up more ominous symptoms. It suggests the doctor is thinking of different things from what I'm still clinging on to. Ever the optimist, I managed to avoid getting myself too concerned.

July 13th
I get a letter from the surgery. My blood test results are back, and I should make a telephone appointment. Presumably that's a good sign, right? I arrange one for July 18th.

July 17th
I’m working in the study when the doctor calls. She says
“Holes in bones”. "Lytic lesions". “Might be myeloma”.
I should come in for a face-to-face appointment urgently.
“Sorry this probably comes as a horrible shock”.
I start frantically googling. Holes? Hotspots? Cold spots? What do bone scans detect, exactly? Pretty likely this is bad shit.
You can simulate this experience if you like. Type "lytic lesion" into google, and see where it takes you.
I cry. A lot. Mostly into my PC. I google, too much, telling myself to stop.
After about an hour I pick myself up, walk downstairs and relay everything to Marisa  – one of the most painful things I have ever had to do in my life. Lots of crying and holding each other. Mostly crying and holding each other, really, what else can we do? But we have a house full of children, so have to pull ourselves together to face them.
In the evening I try to call my Mum. She’s out. Probably a good thing. Later, I go out for beer with one of my oldest friends. It's the first time I talk to a friend about any of this. He is typically optimistic. Is this because he’s being nice, or because he doesn’t understand how serious this all is? (A bit of both, probably.)

July 18th
I see the doctor again. He thinks this is myeloma, I can tell from his attitude. I ask about the “holes”. He shows me the report. It uses the words “widespread lytic lesions”. He says we need to do more tests – he’s going to set up 3 blood tests and then call the haematologist at King's. He tells me myeloma is treatable, which isn’t remotely reassuring because I’ve already read that it's incurable, and seen life expectancy figures which are frankly terrifying.
He says the results might take a week. Why? If I’ve got myeloma – and I think I have – then I want a referral to a specialist. It’s quite obvious the doctor is at the boundary of his own expertise. But he knows a bit about the tests – he thinks there’s a new one which can be done from blood but used to be done from urine, and the blood one is better. He looks it up. At the latest when all the results are in, he’ll call me on Wednesday 25th. I'm not sure I can wait that long, any more.
I go straight down the hospital to do the blood tests, googling them on the way in the car.
1) "Creatinine" – kidney function – kidney damage is another likely consequence of undiagnosed myeloma
2) “Serum protein electrophoresis” – finds spikes of proteins – i.e paraproteins. Good for spotting cancers. Myeloma typically produces an “M-spike”
3) “Serum-free light chain analysis” – specifically finds myeloma paraproteins. Relatively new test. Previously needed a urine test but this only detected levels above a threshold when the kidneys couldn’t cope.
I come home and google “widespread lytic lesions”. It’s either (a) myeloma or (b) so weird and unusual that people write research papers about individual cases of people who manage to have this level of bone damage without myeloma. So, we’re only looking for 1 thing now. This is no longer “broad”.
I'm going have to tell my family. We’re off to Legoland on Saturday and (a) they’ll ask about my back, (b) I won’t be able to go on the rides (and I’m a famous lover of rides), and (c) I’m limping and not sure how far I can walk without stopping to rest. So I write a script. I have a text message conversation with Mum. Dad’s away tonight. I don't want to drop this on her alone. So we have a chat, but I don’t touch the script. That will have to wait another day.

July 19th
Realising that my brother Matt is not always easy to catch by telephone, I figure I better try him today, too.
First, I go to a the management meeting at the local Community Centre, where I've just joined the committee. I'm not really interested in any of the agenda, or much fun to be around. I can only think about one thing. We keep discussing jobs that need doing. Could I do them? I say no without offering a reason. It all feels really uncomfortable. The meeting runs late. I want to make my phone call. Eventually I excuse myself. I try to call Matt, but he’s out. So I leave a message with the babysitter that I need to talk with him before the weekend.

July 20th
I phone my parents at 9am. Dad answers the phone, thereby drawing the short straw. I try to gently explain the situation without too much alarm. I just about keep it together. I tell them the chronology, and about the lesions, omitting the words “widespread lytic” to make it harder for them to scare themselves to bits on google. I tell them it could be benign, but it could be worse, and that I’m awaiting test results. In the end I don’t mention “myeloma” – what’s the point? I had carefully written it into my script, but I can’t bring myself to go that far, in the end.
And then Matt calls. So even though he’s standing in the corridor at work, I go through it again with him. I have no idea how he dealt with that.
What a truly horrible experience. Knowing I’m going to be the cause of sadness in other people is the hardest thing to deal with.
I go out for lunch with another old friend and decide not to tell him anything. It’s liberating and I have a lovely couple of hours. Even the awkward points – summer holiday plans, emigration to NZ plans – I manage to pass off by replying as I would have done 2 weeks ago. I don’t even feel like I’m deceiving myself much.
At 4pm I get curious and phone the doctors. The receptionist lets slip that 2 of my results are in and they’re both normal. I demand that a doctor calls me back, which she does. My kidney function is normal, and there’s no M-spike. A couple of my protein levels are a bit low – but she doesn’t know what this means. She says we can’t really draw any conclusions until we have all 3 results. I explain to her that a bit of good news is nice, even if it’s transient. She offers to call again on Monday. I say I thought they’d call me as soon as the light-chain result was in. She says all that had been put on put on the file so far was to call me on the 25th. The thought that I’d have been made to wait for all of this information until next Wednesday is horrible, and I get quite upset with her about the overall level of patient care. But the doctor on the phone is nice, and promises to call on Monday. She also offers to be my only point of call from now on, and tells me from now on to call reception and insist on getting a call from her, or an appointment with her, even if they try to fob me off. When I've subsequently had to take her up on this advice, you certainly feel like you are digging your heels in. Why are doctors’ receptionists so rude? But the process does work. And having some stable points of contact is invaluable.
I phone my parents again, and then Matt, to share the love and the glimpses of good news. At this point – because it’s necessary to explain what we do and don’t know – I mention the word myeloma.

July 21st
Legoland. Actually, it’s better than it could be. I feel OK. I can walk. The children don’t really notice quite how many rides I miss – and there’s always the excuse of the baby to look after. My parents don’t mother me too oppressively, there’s a few more questions but its all OK. I see both my Dad and my sister-in-law Fi taking time to talk with Marisa. I’m increasingly worried about her, so that’s good. The strain on her is as bad as the strain on me.
Another old friend comes to stay tonight. I tell Marisa we’re operating a “don’t talk about it” rule for the evening. She's been bottling it up until now but has recently found it helpful to talk to people about it - a lot. We're living it 24/7, and I'm struggling with that. As we'll both learn, again and again, having differing rhythms in our coping mechanisms is yet another of the challenges we face. Late in the evening, I can’t help open out the sofa bed. He asks why and so I tell him. Oh to be the bringer of good news.

July 22nd
I feel absolutely awful today. I am 100% certain it must be myeloma, M-spike or no (I might have a bit of a hangover too, but I can tell the difference). There is aching all over my back, ribs and pelvis. Ineffectively I try to hide it from Marisa. She’s still full of the good news from 2 days ago. This is the first time I’ve seen her so optimistic, I can’t bear to burst the bubble.
My friend is playing in the garden with the boys. Relay race practice (Olympics inspired!) and then football. I decline to join the running at all, and do a pretty lame effort of joining in the football. I feel like an failure who can’t fulfil my functions as a Dad.

July 23rd
The doctor calls. My light-chain results are abnormally high. She wants to submit a form to the haematologists at King's (At last!). It’s a “14-day-response” meaning they must see me in 14 days, but she’s sure it’ll be quicker, indeed that this will really begin to accelerate things. 14 days!! I don’t think I could bear it. She’s spoken to the haematologist since we last spoke and so got a bit more understanding. She thinks they’ll want to do a bone marrow biopsy and maybe more scans. I google “bone marrow biopsy”, it doesn’t sound much fun.

July 24th
The haematology department calls. Thank goodness it didn’t take 14 days. An appointment for tomorrow.
“Will that be for both scan and biopsy?” I ask.
No, just to see the consultant. Not a bad thing – I’ve been wanting to see the consultant for what seems like ages.

July 25th
I go in to King's alone. Marisa and I have a coffee together first at Love Walk Cafe. We’re both apprehensive, but also being practical. Maybe today I’m only 95% certain, and she’s probably more optimistic than that. But any which way, I feel we’re beginning to get ready for what’s coming.
The haematology waiting room is full of ill looking old people. And many of them seem to be regulars – I realise for the first time that I’m probably going to be a regular too. And I’m probably going to look ill. And there’s some question about whether I’ll ever be old.
The initial consultation is a bit confusing – there’re 3 people in the room plus me and I don’t know who they are, except my consultant, who I’ve looked up. He tells me he thinks I have myeloma. He tells me we can only make a definitive diagnosis on the basis of symptoms, plus protein scores, plus biopsy. So I need to have a biopsy to get a diagnosis. I ask
“If it isn’t myeloma, what could it be?”
He says
“I think it’s myeloma.”
So that's that, then. I ask a few more badly constructed questions. I’m not sure what answers I’m looking for. And I can’t remember any of his replies! Then one of the nurses takes over. This conversation takes place inside the haematology treatment centre which is intimidating – comfy hospital chairs, partition curtains, drips, machines and so on. She’s a myeloma specialist care nurse, which is simultaneously reassuring and utterly damning. I'm doomed. This is real. Her badge also says “MacMillan” on it, which is somehow very hard to accept, because it puts me in the general category of cancer sufferers, which I haven’t really thought about yet. She helps explain a lot, though again I struggle to take much in. She asks me outright if I’ve googled myeloma.
“Enough to scare the shit out of myself” I say.
I can’t keep back the tears now. She tells me that it’s normal to google, and hard to deal with that, and it will take time to comprehend. I tell her about the boys – somehow I feel like it's all particularly unfair because I have such young children. She tells me there are others like me. She’s nice and I believe her. But it doesn’t make it any better.
I walk home writing a mental script and then slowly talk this all through with Marisa. She deals with it better this time. I can see her reaction is like mine – we’re both in denial and doing a bit of bargaining, if you know your Kubler-Ross.

July 26th
Bone marrow biopsy. Wow that hurts.

July 27th
The older boys have been at my parents for the week. I’ve suggested they bring them home this evening – quite late because they need to avoid the Olympic Opening Ceremony traffic. I’ve written another script and we go through it slowly. Dad is immediately in compassionate and practical modes
“If I could swap blood and bones with you...” “Whatever we can do...”
Mum just sits there. She’s not known for being quiet. Her eyes are red but she doesn’t really cry. I know this must be tough for her – especially as she’s still dealing with my Granny’s slow recovery from a stroke, and my aunt's chemotherapy for peritoneal cancer. But I’m beginning to accept that I am not responsible for other people’s sadness, and I’ve got a lot of things to worry about myself.
I agree that my parents will talk to the rest of the family – I don’t want that responsibility. On the condition that I do not want “Get Well Soon” cards. And somehow, it still matters a lot to me for them to make clear to anyone that it hasn’t actually been diagnosed yet, it just looks very likely. (In hindsight, I have no idea why this mattered at the time. Had there been a miracle, was I worried I'd end off looking foolish? But if there had been a miracle, would I really have cared about looking foolish?)

July 28th
I bump into some cousins in the park. Small-talk. Marisa & I are both standing there haunted by the unspoken subject, more potently because one of my cousins has slipped a disc and is on crutches. Shall I drop the bomb? On the spot I make the decision that it's better to have the confidence to tell people (those who I want to know). These are my family, they will find out soon enough and I wouldn’t want them to think I was ashamed/embarrassed/scared. My cousin is a nurse and her husband is a doctor and both Marisa and I observe the looks they can't hide on their faces when they hear the word “myeloma”. We'll come to learn a lot about how to cope with other people's reactions - in their many and unpredictable forms.

It get's me thinking about the process of telling people. I don't have the strength to set out to tell everyone in my life. The mums at the school gate can all learn by grapevine as far as I care. And gossip about it. And if any of them come up to me with a badly-considered comment, I reserve the right to say what I feel. And if they do the same to Marisa, I reserve the right to... well, whatever happens.

July 29th
We're out for the day visiting friends, who know where we're at. These are the kinds of friends we are lucky to have. Ones who will be sensitive, and stick around with us. I think Marisa finds the occasion harder than me, because it involves yet more talking about it. I struggle only with the well meant advice.
“Lying down is good.”
“Yes, but when I lie down and then try to sit up I’m immediately in so much pain.”
No-one else knows what it's like, and frankly, right now I'm quite sure I wouldn't want them to.

I know the weeks ahead will bring all sorts of uninvited, but well intentioned advice of the “my grandpa once had xxx...” variety, and that won’t help me at all.

What I find difficult is having to resort to sitting in a comfy chair for half the day. I feel like an invalid.

A text message has been haunting me for the last 2 days.
“What was the result of the tests?” I pluck up the courage to reply
“Not good, unfortunately. Been having lots more tests. I’ll get a formal diagnosis this week. But realistically I already know what it will be. Think they’ll give me a treatment plan this week too.”
“Oh shit :-(“
And then, nothing. He's probably got no idea what to say next.

July 30th & 31st
Somewhere in the week Marisa has a complete disintegration on me and tells me
“I wish I was dead.”
I snap back
“You wouldn’t say that if you thought you soon might be.”
How I regret saying that. She is dealing with all the same issues I am. On the other hand, I’m simply not going to be strong enough to carry her through this.
Twice recently she’s told me through gritted teeth that “We’re going to fight this”. I know why she’s saying it – she doesn’t want me to fade away. But at the same time I find it quite hard to hear. How am I supposed to fight this? It’s not a “Get up and walk!” situation. It's happening deep inside me, in my plasma. If only it were a tumour in an organ, I'd have something to focus my energy on. We could cut it out! But it's not like that at all. Obviously, I’m going to do what the doctors tell me. I’m not about to start emulating some of the deranged ideas I've read in other people's blogs, where they quit their chemo and try herbal remedies, and are then surprised when they relapse.

But the only way I can “fight” it myself is through belief – not letting it destroy my life, my outlook, my view of the world and of others. To the extent that my mind can contribute to my treatment, that’s the best I can offer. I guess that's my synopsis of the story of Jesus Christ. You can’t make the world a nice place. You can’t guarantee your own destiny – no matter how rich or powerful you are. All you can do is be a positive influence. Love others. Look for the good. That's my faith. I'm going to have to see if I can live up to it.

More prosaically, I’m beginning to get a bit of succour from fellow travellers. I’ve discovered Myeloma UK, and the helpful reassuring forums there. And I’ve discovered an “Under 50s” group and a few kindred souls. From now on, when I’m online, I’ll spend more time there – better information, from more sympathetic sources.

August 1st
D-day. Diagnosis. Marisa comes with me. In some ways that’s wonderful – support for me, and also I think it will help her come to terms with this. In others, it’s awful – she’s making all the same assessments of the waiting room that I was last week. Marisa points out afterwards that
“he still didn’t say it’s definitely myeloma”.
But he did. He just said it gently. Denial is a perfectly normal response: don’t hear what you don’t want to.
I’m presented with yet more people – from the clinical trials team this time – and come away with 2 packs of information on the NHS prescribed therapy "CTD", or a clinical trial "PADIMAC". They’re not recommending the trial to me, because they're not allowed to. So in fact they aren’t really steering me one way or the other. I'll have to decide for myself whether I'd rather take thalidomide (yes, you've heard of it, huh?) or bortezomib (which you haven't heard of, and nor have I). That's a big decision to put in the hands of someone who last studied biology when they were 12 years old. I spend the evening researching loads of complex drugs, clinical trials, types of stem cell transplant and so on. It’s crazy – I’m expected to make the choice, and I’m no medic. But then every dimension of myeloma is crazy.

Crazy dimensions of shit.

Since diagnosis I've had plenty of time to reflect, and I've retained both my sanity and my sense of humour. But it has not been without its dark moments. I don't think any of this can be made any easier for anyone involved. It's just something you have to go through. If you are going through it too, know at least that you are not alone.

Tuesday 17 July 2012


Just nod if you can hear me
Comfortably numb - Pink Floyd

I started this blog to keep my friends and family up to date with my treatment progress. But I know from my own experience that, faced with a myeloma diagnosis, I googled endlessly for information, and found other people's diaries very helpful. Maybe you've found me the same way.

My name’s Alex Bicknell. In June 2012 I had it all. I’d just turned 39. My wonderful wife Marisa, who had worked hard for 10 years to study, at the same time as bringing up children, had graduated from university and was beginning to set up her own business. For the first time in her life she was doing the jobs she wanted to. I had 3 beautiful children, Ben aged 6 and full of spirit, Gyles aged 4 and full of mischief, and Lyndon, 2 months old and with the world’s most mesmerising eyes.

I had my own successful consultancy and was earning great money. I was part way through training as a primary school teacher in my “spare time”. I had plans and aspiration in the short term for a summer’s retreat to France and in the longer term to move “home” to my wife’s native New Zealand. I’d even appointed a local lawyer, and got a local bank account there. I was literally days away from buying a piece of land by the sea in Golden Bay.

On July 17th myeloma entered my life, abruptly, confusingly, frighteningly. It changed everything.

They tell us myeloma is “individual” which is a euphemism for lots of things. Every myeloma journey is different. In those confusing early days I felt more alone than I'd ever felt before. A young man afflicted by an old man's disease I'd never even heard of. Too often the information online about myeloma is horrific – dealing with information is actually one part of the problem. And inevitably (because few of us feel like talking about it all openly at the time) a lot of myeloma blogs start several chapters into the journey, rather than dwell on the initial decisions and emotions. So I'm going to start right at the beginning. I hope you find this helpful.