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.
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.
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.
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
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.
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).
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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?
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.
My first break from steroids in a month. How nice to feel vaguely sober.
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!
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.
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.
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.