Wednesday, 1 August 2012

Diagnosis

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.

2008
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).


2009-2011
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.

March-May
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.

2 comments:

  1. Hi Alex
    Saw your blog for the first time today. I was diagnosed in May 2010 at a relatively young age according to the docs. Based near Oxford I have the privilege to be treated at the Churchill Hospital with a fantastic team of professionals keeping an eye on me. I had CDT and then SCT in November 2010. Three weeks in hospital, 2 months building strength and resistance. Then 2 years in complete remission. I been and worked in Korea and Moscow and even Manchester and still doing fine. So just look after those mood swings, don't worry about weight loss do exactly what the medical team tell you and you'll get there. Steve Haysham

    ReplyDelete
  2. I've been and worked.... sorry

    ReplyDelete