Pipes

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.

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Roadhouse

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.

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Tests

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.

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Pre-SCT

Bet he feels like an elephant, shaking his big grey trunk for the hell of it
Elephant – Tame Impala

Welcome to Dial M. This won’t be a blog of the minutiae of my life. Just a record of my experience with myeloma. If you want the rest, you’ll have to take me out for a drink. And we can both promise, on those occasions, not to mention myeloma at all.

In 9 days time (if all goes to plan), I will have a stem cell transplant. One friend has already pointed out that this sounds quite “whizz bang”. In fact, it will just be a bag of blood, attached to a drip. I’ve even seen the bag before, because it’s my blood, and I was there when they took it out. Actually, in fairness, the apheresis machine they used to do so was quite whizzy. You don’t often come across centrifuge jokes. So that one was a technical novelty, even if it’s not very funny. Hmm. I’m getting distracted here. Focus. Where was I? Oh, yes. Cancer. How could I forget.

In 8 days time (if all goes to plan), I will have a massive dose of chemotherapy, which will destroy all my bone marrow. And hopefully, with it, most (though sadly not all) of my myeloma. I’ll need the stem cells in order to grow new bone marrow. I’ll need the bone marrow to produce new blood cells. Simple really. I’m going to be laid up in a hospital ward for 3 or 4 weeks, and probably laid up at home for a couple of months after that. I thought it might be useful to keep people up to date on what’s going on. Saves you phoning Marisa and asking her.
Do phone Marisa though, but talk about other stuff instead.

I’ve put some backstory on here about the last few months of my life (the months leading up to diagnosis, followed by front line treatment). I’ll be updating on here while I’m in hospital, when I’m bored, which might be quite often. Leave me comments!

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Vertebroplasty

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

No-one can really understand what myeloma is like unless they have it. But some of those near me now have a pretty good idea. Sorry about that – one piece of insight we could all do without. So here’s an unmitigated good news story.
Since I broke my back I have become increasingly debilitated. It was at its worst when I was in the midst of treatment – full of tumours and chemicals. But even as things have calmed down considerably, I’m left with difficulty standing straight, pain if I stand up for any significant period of time and problems sleeping. I’m also still getting through quite a lot of painkillers (oxycodone these days, a synthetic opiate, and a controlled drug.) Much of this is due to the many fractured vertebrae in the middle section of my spine.
Tonight it feels like I’ve been released from one of my cages. I’ve had vertebroplasty on my spine today – acrylic cement to fill in some of the worst holes and (hopefully) alleviate some of the pain. It’s done as key hole surgery. I spent only one night in hospital and was able to come home the same day as the operation. Amazing. I can’t say how grateful I am for the awesome things modern medicine can do. And for the NHS, which does them all for me.
It struck me this morning quite how much I had invested in today. How down I would feel if nothing had changed tonight, or not enough. How I’d feel if I thought that it was never going to be better than this. But the good news is that, right now, I feel like I’ve got something back that I didn’t know I’d get, and I can believe that I really can be fit and healthy again.
I read something online which suggested that the benefits of vertebraplasty might all just be a placebo effect. I don’t think that’s true, but even if it is, I’ll settle for that.
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Harvest

Dream up, dream up, let me fill your cup
Harvest – Neil Young

Ever wondered what a “stem cell harvest” consists of? Neither had I.
The purpose of the exercise is to collect stem cells which an be frozen until I need them. It goes like this. First, a nice big tasty bag of cyclophosphamide to shake things up inside. Hopefully kill off some myeloma and make more space in my bones for the good stuff. It seems to work – it certainly did for all my hair.
That made for an interesting Monday morning in the classroom.
“Early morning work: think of the craziest reason for what happened to Mr Bicknell’s hair”
“Yes but, Mr Bicknell, what did happen to your hair?”
“I had a fight with a badger”
“Did you really?”
“It’s a crazy reason, isn’t it? Have you ever had a fight with a badger?”
Then a week of growth factor injections. These are OK really, now I’ve got over the initial horror at having to inject myself. They give me pulsating bone pain – like my pulse is going right through my skeleton – which isn’t spectacularly painful, but is remarkably distracting.
And then 5 hours hooked up to an apheresis machine, a needle in each arm. With the machine spinning samples of my blood and separating out the crucial fractions. And giving me the rest back. It was simply boring – couldn’t even move my arms or all the alarms went off. Left me a bit tired and with one very sore arm.
And then home – to await the phone call. Have we got enough? If not it means at least one more growth factor injection and another day in hospital. The standard units for stem cells are “million per kilogram of body weight”. They want to harvest around 7 – which is enough for two transplants. That’s over half a billion stem cells for a slightly underweight gent such as myself.
The phone rings.
“We got a good harvest”
“How many?”
“13.8”
I allow myself a moment to smugly enjoy my own virility.More than a billion cells. It’s not often these days that my body impresses me.
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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?”
“Gold”
“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.
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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.
Drugs:
  • 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.
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Me

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.
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