Rhythm

Drums keep pounding a rhythm to the brain. La de da de dee. La de da de dah. And the beat goes on
Beat Goes On - The All Seeing I

Day 52 : In search of rhythm.

Eric Morecambe famously played Andre Previn "all the right notes..." If you don't know the end of that line, and even if you do, click here to watch it on YouTube. (A contender, surely, for the funniest piece of TV ever.) Personally, I'm not worried so much about melody as rhythm. I'm feeling distinctly syncopated. I'm half way to the fabled "Day 100", when we'll (I hope) be able to formally declare my recovery complete. But right now I'm feeling a little unstructured and lacking in meter. I'm not quite sure how much to take on, neither wanting to overdo it nor underdo it. 100 days is a long time, and I'm getting a little bored. Rest is not in my character. (Let's face it, I'm normally known for having too many things on the go at once.) Plus a number of the things I had thought I might do to occupy my time involve sitting in front of a PC, and now I think I'd rather be elsewhere (and my back would certainly thank me for that decision). So... I need to find things to do. My task for the next week is to put on a few new beats.

I'm doing well physically. I even cycled with Ben to his cycle club yesterday. This used to be our designated weekly Ben & Daddy activity after Lyndon was born, and we were both gutted when I could no longer do it. I asked my doctor last year if I was OK to cycle and he said
"as long as you don't fall off".
That seemed impossible for me to guarantee, on Lambeth's streets, so I decided I was safer to stick the bike in the shed for a while. But I'm feeling less frail, now. It's nice to be back in the saddle (not often one can deploy such a cliched metaphor and mean it literally).

I made the walk to church today for the first time in 2 months. And I've spent several hours on several recent afternoons with the children in the park, including pushing Lyndon on a swing - an activity involving standing still which, simple as it sounds, I find challenging to do for any length of time.

In one word: progress.

Sure, my legs still ache in the morning and evening, but after discussion with my physio, who thinks it is just weak muscles building up lactic acid too quickly, I've increased the number and strenuousness of me stretching exercises, and that seems to be helping. And I'm still getting bouts of fatigue, but bearably so, for now.

I was disconcerted yesterday afternoon to lie on the lawn and discover that my belief that I can lie flat on my back is a complete myth. I can lie "flat" in bed, but if I lie on a completely hard surface my shoulders are suspended a surprisingly long way up in the air. This is just another reminder that my back is not straight, which I am not happy about AT ALL. So I have spent a chunk of the last two days trying to change that reality - first on the lawn, and then, when the April showers began, on the living room floor. Given some time lying still, my muscles gradually relax, enabling my spine to straighten and my body to get a bit flatter. I think I need to do this more frequently, if I want to really regain my posture, even though afterwards I feel very stiff. My physio has told me to exercise to the point of stretch but not pain. It is very difficult to distinguish between the two, when stretching triggers stiffness which leaves me struggling to stand up. It is possible, in my experience, to be disabled by stiffness, without it being overtly painful. I've had this debilitating problem for months, and before my transplant I had decided that if it required strong painkillers to relax my muscles, then that was a price easily worth paying. Since my transplant I haven't suffered to the same degree, and I've been avoiding painkillers completely, as well as avoiding anything that might cause me to need them. I'm nervous about becoming dependent on painkillers - I don't want to end up addicted. When I say "strong painkillers" I have in mind oxycodone, a synthetic opiate, and a Class A drug, unless you possess the right prescription. It is very good stuff, but that's why I'm nervous about it. But now I'm wondering if a different tack is required. I think I'm going to spend a bit of time each day lying flat on the floor, to straighten my back. And if I'm stiff afterwards, and need a painkiller in order to get to bed, then I'm going to consider that the lesser of the two evils.

A number of people have asked about or commented on the fact that I begin each post on Dial M with a song lyric. It's just the way my head works (la de da de dee). And a bit of fun (la de da de dah). Someone who knows me very well accused me of showing off. There's usually a link (though sometimes tangential) between the lyric and the subject matter. Anyway, in response to requests I have put a couple of Spotify playlists together of the songs from which I've quoted. Enjoy.
Dial M playlist part 1
Dial M playlist part 2

Unplugged

Come as you are, as you were, as I want you to be
Come As You Are - Nirvana

Day 46 : Goodbye to the horrid Hickman line.

A quick trip to hospital to have my line removed. We have a faff about with my blood first, unsurprisingly. I only have to walk in to the hospital and they want to take my blood, these days. This morning one of the nurses decides she needs to do all my blood tests, before we can proceed. The rationale for this precaution is simple - if they took my line out while my platelets were low, I might bleed uncontrollably. Except... we did check all this just last week, and the only reason we're taking the line out is we're confident my blood count is fine. And after today no-one will even be monitoring my blood count, from one week to the next. But I'm beyond arguing about these things, so I just let her take the blood, and then wait while the samples go off to the lab. It's only another hour of my life. Fortunately, the registrar appears a few minutes later and says that he isn't going to wait for the results anyway. So we crack on. I wonder if the blood test people know how much of their time is wasted, too?

It doesn't take long to get the line out. And it is a lot less unpleasant than the process of putting it in. So I am unplugged! I'm also free of hospital (bar my weekly exercise group). I don't need to go to the haematology dept for ages. I can just get on with getting on.

I guess I'll inevitably be blogging a little less frequently here on Dial M, with less to report. I promised this was a myeloma blog, not a "minutiae of Alex's life" blog, so while I'm getting back to other stuff, I'm less likely to be writing it up. For the time being I'll continue to update periodically, as my recovery continues. Longer term, I'll post my test results, as and when. I'm looking forward to a decade of "no evidence of disease" updates...

If you want to ensure you are plugged in to those updates (and I'd understand entirely if some of you don't!), without having to check in on the blog, there are numerous ways to do so:

• Subscribe to "Updates by email" at the top right of the blog. You'll just need to provide an email address. Your email will only go on Dial M's circulation list. It WILL NOT be used to send you messages about how to get a bigger penis/ make money working from home/ buy prescription drugs/ get rich quick by investing in stocks (etc.).
• Subscribe to receive updates by RSS, if you are in to that. (If you don't know what that means, it's not for you!)
• Follow @alexlondon on Twitter.
• Keep an eye on my Facebook or Google+ status, if we're connected that way.
• Get updates via networkedblogs, which you can access via Facebook. There's a link in my status updates.

Dial M has two purposes. One is to keep my friends and family in the loop with my treatment. The other is to raise issues associated with myeloma, for people who are affected, and more broadly too. So if you come across anyone who might be interested, please mention Dial M. Thanks.

The Wall

I gave myself to sin. I gave myself to providence. And I've been there and back again, the state that I am in
The State I'm In - Belle and Sebastian

Day 45 : Almost normal. Which, in the context of the recent past, is quite abnormal.

Well done Nathan King for completing the marathon today. And raising over £1,600 for Myeloma UK. He describes it pretty succinctly:
"a brilliant experience with first 13 miles going well, the second set not so well but got round [due] in no small part to the amazing crowds"

I wonder if Nath had the sensation, as many marathon runners report, (having never run anything like that far myself, I wouldn't know) of "hitting the wall"?

It seems a good metaphor for me, right now. I'm grappling with fatigue. I guess family life is just more active by nature, than what I've been used to. My fatigue is not like tiredness. It doesn't come on slowly. It doesn't appear to directly relate to activity. Oh no. Instead, I'll be running along quite happily when abruptly, with little warning, I hit the wall, and find myself completely devoid of energy reserves. Suddenly even sitting in a chair seems exhausting, and I make heavy weather of shuffling upstairs and onto the bed. I really hope this is a passing phase in my recovery, because it rather ruins the end of each day.

But overall, fatigue notwithstanding, things here have been very good this week. Being a family again is making us all very happy. And I keep finding myself doing things and then being surprised at the normalness of it all. The school run. Shopping. Family meal times. Card games. A touch of gardening. The boys (all 3) went for a sleepover last night (thank you, lovely friends, for having them) and Marisa and I went out for dinner. I don't think I've been out for dinner since Christmas. (Mind you, we were in the restaurant just after 6:30pm. I wasn't sure I'd cope later on. Things aren't completely normal, just yet.)

So we're getting extraordinary pleasure out of ordinary things. Hurrah for not taking things for granted. Long may that continue.

Family

I'll be your bello bambino, your man on the moon. I'll be your little boy running with that egg on his spoon. I'll be your soul survivor, your worst wicked friend. I'll be your piggy in the middle, stick with you till the end. When you wake up with me, I'll be your glass of water
Italian Plastic - Crowded House

Day 41 : ... Haemoglobin 9.1 ... Neutrophils 1.02 ... Platelets 90 ...

First today, the medical bit. I see the doc and all's well. My scores are stable (my neutrophils are down, but he doesn't think we need to worry - it's been ages since they had any stimulation, so the current level is evidence of my marrow functioning independently). I book an appointment to have my line removed next week, and I don't need another blood test for a month! Hard to imagine, but true.

And Marisa and Lyndon finally make it home, so we get a family reunion, and he gets a birthday cake (much of which he smears in his hair). Feels like a massive reward, after a massive ordeal.

I've said before what a debt I owe Marisa, without whom I'd never have got through any of this. And I owe a debt also to Ben, Gyles and Lyndon, who are my continual inspiration. Today is a good day - when we've finally been able to let them escape to their own home - for Marisa and me to say thanks to my parents. I'm not sure how we'd have coped without you. And I'm well aware of what the last 9 months have cost you: numerous trips in and out of town, many nights in a flat you have rented solely in order to be near when we need you, lots of nappy changing, two cancelled holidays, endless cooking, hospital visiting, finding yourselves trapped in awkward moments while we've grappled with the shitty complexity and uncertainty of our lives... the list goes on. We may not have been able to acknowledge all of what you have done for us, but we have noticed.

Most of all, you have understood perfectly the cardinal rule of trauma support, and never once let us feel a moment of the stress and strain this experience has put on you. As a parent too, I understand that you wouldn't want anything more than to support us. As a parent too, I also understand that you have been on an emotional journey as well. Thank you, Mum and Dad, for dealing with everything so calmly, and for letting us be strong or weak, positive or negative, evasive or blunt, as we have needed to. Thanks also, to the people who have been there to support you, when you have needed to unload. I know some of those people will be reading this.

Disintegration

Nobody said it was easy. It's such a shame for us to part. Nobody said it was easy. No one ever said it would be this hard. Oh, take me back to the start.
The Scientist - Coldplay

Day 40 : An anecdote, some prosaic stuff, and a goodly dose of separation anxiety.

Last night something I have been fearing finally happened. As I was on my way to bed, my line dressing simply fell apart (too many steamy showers, I suppose). In the absence of Marisa, who is highly trained in the elaborate rituals of line care, I was left with three unattractive choices. I could (1) just ignore it, and hope it doesn't get infected. But free of the dressing, the lines swing a bit looser, and the ends hang a bit lower (maybe I need a bra), and it all gets tangled up in my clothes. Or I could (2) summon my Dad - but that really does seem a cruel and unusual punishment to inflict on him. Or, reluctantly, I could (3) try to redress it myself, despite the fact that I haven't done this before, and it's hard to see what I'm doing, when it's located on my own chest. So it is that I find myself stood in front of the bathroom mirror, with my sterile kit all laid out, doing a DIY Hickman line dressing. I clean it with the squidgy thing. I keep the sterile stuff sterile. I manage to get the sterile gloves on without getting unsterile fingers all over the outside of them. I manage to put the little blue sterile pad in place, without dropping it on the unsterile floor. And I get a new dressing on, with the line looped up tidily behind it. I am very proud of the result. I think I earned a sticker.

A round up of the days other stories...
(Skip this if you're bored of hearing about my legs/ back/ sleep patterns/ bladder)
a) Today I attend an exercise group at the hospital. I will be fit! And when I am, it will be worth so much more, because I will know exactly how hard I have had to work to achieve it. My achy legs are getting much less so. I think this particular issue is disappearing.
b) My back is getting better too. Easier to stand up straight, and I'm less aware of fighting to be vertical while walking. That said, I just checked in the mirror, and there's a long way still to go.
c) Last night, for the first time in months, I slept without waking in the night. Big thanks to Ben and Gyles for helping me be so tired! And thank you too, boys, for all the fun and laughter we are having together this week. I've missed you both so much.
d) Because I didn't wake, I didn't go to the bathroom - a nasty habit I acquired during my transplant (when they kept pumping IV fluids into me) and which I am very keen to break. I want to go camping in the summer, and happy campers DO NOT have to pee during the night.

And finally (but importantly)...
The family reunion has been set back another 24 hours. Get well soon, Marisa. We really miss you. It's Lyndon's first birthday today. Happy birthday, my baby boy. You have carried my spirit through the last year. You are the reason.
I promised you, before I went in to hospital, that I would be home for your birthday. I am, but I wish you were here too! Fortunately, being only 1, you won't notice at all if your birthday celebrations are a few days late. And they'll be all the more special, for being so long looked forward to.

VGER

And even if the morning never comes, my hands are blessed to have touched the sun. And when I can feel with my sun hands, I promise not to lose her again
Sun Hands - Local Natives

Day 39 : Very Good Emotional Response

I got a letter today with my light chain score.

And now for the science bit... (as they say in shampoo ads, before going on into some pseudo gobbledegook that bears as much resemblance to science as I do to Usain Bolt). Light chains are a component of our immune system. It's normal to have around 20mg/L swilling around in your blood, but not much more. Excess is a sign that myeloma cells are at work, producing paraproteins (proteins you don't need or want). Light chains can also be a problem in their own right since they cause kidney damage. In my case, kappa light chains are the only accurate way to measure my myeloma. At diagnosis my light chains were almost 1,500mg/L. That's actually not particularly high, by myeloma standards. My myeloma clearly doesn't secrete many light chains, in proportion to the amount of trouble it causes. (Some people have myeloma that produces almost no light chains at all. Good news for their kidneys, but a real problem for disease monitoring.) Before my transplant, my light chains were down to 500mg/L, which counts as Partial Response (PR).

Two weeks ago (drum roll) they were at 59mg/L. This counts as Very Good Partial Response (VGPR). It is a good prognostic for the future. It also means my transplant has checked the second success criterion (Criterion 1: Still alive. Check. Criterion 2: Deeper remission. Check. Criterion 3: Long remission. tbc.) There's every possibility that the score will continue to fall over the next 12 months. I may yet achieve Complete Response (CR) with no detectable disease (not the same, unfortunately, as no disease).

Hip hip hooray.

This somewhat makes up for the farce of the last 24 hours. Marisa and the boys were due home last night. Today was to be our family hang-out day, before school again tomorrow. The 5 of us getting reacquainted and enjoying each other's company. Not a lot to ask, after 6 weeks apart. Instead of which, Marisa spent the preceding night, and most of yesterday being violently ill. So she and Lyndon (who isn't 100% either), have had to go for R&R at my parents' house, with Granny (far away from me and my still-recovering immune system). Just the older boys and I are here, with the support of Grandad. It is lovely to spend time with my children again. Being apart from your kids for weeks on end sucks. But it feels like our family reunion will never come. In reality, I sincerely hope it will come tomorrow.

Here, for your delectation, is today's letter...

Marathon man

Every hair on your head is counted. You are worth hundreds of sparrows
Hundreds of Sparrows - Sparklehorse

In 1 week's time, my friend Nathan King is running in the London Marathon. I've known Nathan since the day we both started work (18 years ago), and I am very appreciative indeed (flattered, frankly) that he has chosen to use his run to raise money for Myeloma UK.

I love running. It was one of my favourite ways of letting off steam, letting go, switching off, working out, getting air and fighting middle age spread, until myeloma got in the way. Indeed, it was while out running that I broke my back (the none-too-subtle clue that something was seriously wrong). I hope that soon, I will be able to run again. In the mean time... Go Nath!

Myeloma is easily lost in the crowd. Even among blood cancers it is much less well known than leukaemia or lymphoma. Yet while it shares many things in common with those diseases, it is also very different. Myeloma UK is the only organisation in Britain focusing specifically on myeloma. It provides information and support to people affected by myeloma, and works with doctors, researchers and pharmaceutical companies to help improve myeloma treatment.

It's hard to imagine how much worse things were just a few years ago. People diagnosed with myeloma as recently as 20 years ago not only faced all the issues I do, but did so in an environment where the available treatments were not very effective and there was little research going into new ones. They would also have struggled to find any information about the practicalities of living with myeloma. To be blunt, no-one expected them to live with myeloma for very long.

The situation has changed profoundly for the better. Myeloma UK has played an important role in that change.

If you would like to sponsor Nathan here's a link to his fundraising page

Guilt

I don't know what's right and what's real, any more. And I don't know how I'm meant to feel, any more
The Fear - Lily Allen

Day 37 : Things are going well, but I'm going to moan anyway.

I hate what myeloma does to bodies. But even more, I hate what it does to minds. Here I am, recovering well, and improving day by day, and imagining all the things I will be able to do in the coming months. And how do I feel today? Guilty.

Maybe I need a break from Myelomaville. Right now I'm aware of all the bad myeloma experiences out there - I should know, I've had my share - and I'm feeling guilty because I'm not having one of them right now. Other people are. How insane is that? If I'm not suppressing jealousy of people who are having it easier than me, then I'm feeling guilty about how well I'm doing myself. Stupid, stupid, stupid. By that logic, I can't win. And I want to win. I intend to win. I'm really quite good at winning.

Myeloma has my body (or bits of it). I refuse to let it have my mind. So I'm going to consign jealousy and guilt (along with stress and worry) to the bin of emotions I no longer do.

So I'm not feeling guilty any more. So there.

Now, for a moment, on to matters corporeal, because your day probably isn't complete without an instalment of The Eternal Saga of Alex's Legs and Back©. Very achy legs today, though I manage a good walk round Nunhead Cemetery in the rain and mud. (More uplifting than it sounds, for those who don't know the place.) I also attempt a few (rather half hearted) press ups this morning (by few, I mean 3). I decided to try this in order to see if I can arch my back, rather than particularly to exercise my arms. I am surprised to discover that I can indeed flex my back very slightly backwards. I didn't really think I'd be able to do that. #iwillbedoingsummersaultssoon (not).

Good tests

Laura, can't you give me some time. I got to give myself one more chance to be the man that I know I am
Laura - Scissor Sisters

Day 34 : ... Haemoglobin 10.3 ... Neutrophils 1.5 (approx*) ... Platelets 59 ...

My weekly blood tests. The process is crap - three hours, it takes them. At the end I wait 20 minutes for a doctor's blessing, regardless of the fact that I have the numbers in front of me and even I can see that all is well, despite my utter absence of medical training.

But I will forgive the NHS it's appalling timewasting on this occasion, because all the news is good. My neutrophils are up from last week, with only minimal "stimulation". Meaning my immune system is getting stronger.

My haemoglobin is up too, of it's own accord. Still low compared to "normal", but that will take time. It's not much lower now than when I went in to hospital. And my platelets have doubled, also of their own accord, which is really good, because they have been a problem for a while. Not, it appears, any more.

All in all, my body is doing what a body should. No transfusions required. On track, I firmly believe, to be declared "transfusion independent" next week, and be permitted to get my line taken out. Yay!

* For some reason my results came back with a total white blood count (2.3) but not split by types of -phil. I couldn't face waiting even longer until the detailed version appeared on the system, so I'm taking an educated guess of my neutrophils. Number may be wrong. Direction of travel is not.

Thatcher

Holes, dug by little moles. Angry jealous spies, got telephones for eyes. They come to you as friends. All those endless ends that can't be tied. Oh they make me laugh, and always make me cry, until they drop like flies
Holes - Mercury Rev

Day 33 : A jolly good sleep

This blog is strictly about myeloma. Not my other hobbies or hangups. (Not that myeloma is much of a hobby, but you know what I mean.) So let me say just this. This morning I can thank Margaret Thatcher for a very pleasant lie in.

I once sat next to Lord St.John of Fawsley at dinner (a Cambridge thing) and he told me that he used the epithets "the blessed Margaret" and "the beloved Margaret" to signify Thatcher and the Queen's sister, respectively. I kept my counsel, though I had other names in mind.

Today I wake up as usual, somewhere around 7. I switch on the radio. They are droning on again about The Blessed Margaret aka That Bloody Woman. I think
"Not more, surely. I had more than my fill of this last night. I can't cope with any more."
I switch off, and roll over. And sleep 'til well past 9. And when I wake, my legs hardly even ache.

Walking

I know all this and more. So take your hat off boy, when you're talking to me, and be there when I feed the tree
Feed the Tree - Belly

Day 32 : Spring is sprung, in my step

I was tempted to call this post "Weak legs", but that would have diminished, by association, my last ("Strong arms") post. And that's something I sincerely don't want to do. But weak legs is what I have. I wake every morning and lie flat, stretching my calf and thigh muscles, which are stiff and achy like I've done some serious exercise I haven't done. For the first few minutes after I get up I feel pin legged and awkward, walking to the bathroom on unbending wooden limbs.

I love the moment when the hot water hits me as I step into the shower. Except that I'm always a little nervous the steam will unstick the dressing over the catheter in my chest. Last week when I went for my tests, I casually flicked the ends of the tubes out of my shirt and the entire dressing collapsed. Fortunately, the nurse was there to put it all back together. I really don't want that to happen at home as I'd have to go through a whole palaver of sterilising the skin before I could redress it. I don't know for certain that the steam of the shower is responsible, but I have enough suspicion to make me nervous. The other underwhelming feature of the shower is the sensation of water on bald head, which is not as good as water on hair. I don't know when my hair is going to come back. No sign yet. If anything, there are parts of my body (without going into too much detail - though by saying that I kind of already have) where I'm still losing it. Too much information?

The upside of the shower though, which outweighs all the negatives, is that the heat unlocks my leg muscles.

I'm trying to strengthen my legs every day, loosen my back, gently push my stamina, and by so doing keep fatigue at bay. I thoroughly intend to return to the physical condition I was in before this insane charade started. Today, I walk right round the park. That's about a mile and a half. The blossom is coming out on the trees, and the daffodils are opening up. It's quite lovely, though I still have to wear my hat. The downhills are easier than the uphills, but the whole experience is more liberation than tribulation. During the walk, my legs feel fine, but I'm conscious of other muscles - those which are still learning to relax and let my spine be straight. This is a progressive experience. My back locked up badly again the last few nights I spent in hospital (because I felt crap and didn't get out of bed). A week ago I was loosening up the muscles around my shoulders. A few days ago it was the muscles around my abdomen. Today, it is the muscles across the front of my pelvis. My muscles are clearly used to me walking more apelike, and less manlike.

Day by day, I'm going through my very own ascent of man:

I don't think I'm quite ready for the spear yet. Maybe next week.

By the evening my lil ol' legs are tired and achy again, having mistook a mile for a marathon. I know I'll sleep well. Sleeping is one of the things I'm getting quite good at. I typically wake up only once (around 2am), and I no longer start the morning lying bolt rigid in the position I went to sleep in the night before. I have regained the ability to move (painlessly) in my sleep. Vertebroplasty really is a remarkable thing. I recommend it.

Another day in my life. I wish me many more like this.

Strong arms

Between two lungs it was released. The breath that passed from you to me. It flew between us as we slept. It slipped from your mouth into mine
Between Two Lungs - Florence and the Machine

Day 30 : Having myeloma is much more than just a one man job

Anther good day. I manage to walk right round (most of) the park. Finally, the weather is warming. And two friends drop in for lunch. We talk about trivia and holidays, and the future. And not about myeloma.

Marisa, who is away with the boys (because it's the Easter holiday, and I'm not fit for active Dad duty), calls. Lyndon has a fever. I can hear in her voice the natural, but urgent, motherly concern, while we discuss the situation. We agree he should have some paracetamol, and that we'll review the situation in an hour. An hour later his temperature is down a bit. We discuss again, and decide that she will endeavour to put him to bed, maybe waking him later for a dose of ibuprofen. Hopefully, that way, he'll sleep soundly 'til the morning. I'm painfully aware that she is single-handedly caring for three children right now, while I sit here recuperating. It gets me thinking about the strong arms I have needed, to hold me, with my myeloma.

Strong enough to be two parents in one. Strong enough to take care of all the children, day in, day out. To make sure their life continues as normally as possible, despite all the crazy chaos that is thrust on us, despite all the unpredictability and all the days when Daddy just isn't up to it.

Strong enough to be all the muscles. Strong enough to get the bike rack on and off the car, to get things out of the loft or put them in, to empty all the bins, to carry all the bags, to do all the packing and unpacking, to carry the baby, to do all the gardening, to do all the shopping, to change all the light bulbs, to hang all the washing, to carry all the laundry baskets, to do all the cooking, to do all the washing up, to always load and unload the dishwasher, to do all those random bits of DIY. Strong enough to do every single physical thing that needs doing, because in the depths of bone pain and chemo, myeloma reduced me to a point where I could hardly carry the weight of my own clothes.

Strong enough to be beside me. Strong enough to lie quietly while I groan my way in and out of bed. Strong enough not complain when I wake up endlessly and perform a slow elaborate ritual of trying to get comfortable. Strong enough to help me when I need physical assistance in order to stand up. Strong enough change my socks. Strong enough to ignore me when I wince and moan as I move about the house. Strong enough to pretend it's OK that I have to sit down while I brush my teeth. Strong enough to run up or down stairs to get things for me because I can't face getting out of my chair. Strong enough to bring me dinner in bed, and sit with me while I eat it (while I grumble about not being able to get my legs comfortable and not having any appetite). And strong enough, through the (2, or was it 3?) months when this was the crude truth of our existence, to never once have pointed out to me how bad it was.

Strong enough to love me. Strong enough to accept me whether I'm high on steroids, or monged on morphine. Strong enough to still love me when I'm pale and bald and hunched and shuffling. Strong enough to be a Mum all day and a hospital visitor all evening, taking care of me in much the same way she takes care of the children.

Strong enough to wait. To wait, so patiently, for the days that I'm just beginning to believe are coming, when all of those things will be behind us, and our family can be normal again. (How I'm looking forward to those days, and how we will treasure them.) And strong enough (I hope!) to stick with me, even though we both know it could all happen again.

I'm fortunate to have lots of support. My parents, in particular, have helped us enormously, and shared the load. But without any shadow of a doubt, I wouldn't be here if it wasn't for Marisa.

Thanks honey.

Triv

Hello. I'm sorry, I lost myself. I think I thought you were someone else. Should we talk about the weather?
Pop Song 89 - REM

Day 29 : Jus' checkin' in. Nowt to report

When I went off line for 5 days last week, I received a few slightly nervous "Where are you?" messages. Today's update is really just to allay those concerns.

I get up (quite late). I eat my breakfast. I read the paper. We do some sudokus and crosswords. My Mum has a book of crosswords which claim to be "for the internationally inclined". They're pretty taxing, unless you happen to already know the names of uninhabited Caribbean islands, the capital of Moldova, and the ancient cities of the Euphrates. Which we don't.

I have some lunch. I go for a walk - a little further each day. I'm even managing a bit of the hill now. I do wish it wasn't quite so cold. Get it together, weather! SOME OF US DON'T HAVE ANY HAIR.

I do my exercises. I watch Pointless. We drink sherry. We have supper. Exciting stuff. It's a good routine.

Both my parents are here now, and I'm not doing any of the work. No complaints. I am in recovery. (Wonder how long I can cling to that excuse?)

I'm still feeling quite weak. Most of the time my legs feel like I've just finished a brisk 3 hour hike. And a few minutes of household chores gets me puffing. But it's much better than it was a few days ago, which is all I can ask. Step by step, day by day, mile by mile. (That's Whitney Houston, by the way, but she ain't never gettin' no formal credit in my pantheon of song lyrics, I'm tellin' ya.)

And I'm not in hospital, which is worth a lot in itself. Tomorrow I will have been home for a whole week. Maybe I deserve a cake?

Prognosis

Everybody knows the prognosis is discosis. So don't step on my ghepettos. Pinocchio's got a broken nose
Discosis - Bran Van 3000 (feat. Big Daddy Kane and Dimitri From Paris)

Day 27 : ... Haemoglobin 9.9 ... Neutrophils 1.25 ... Platelets 30 ...

Back to the hospital for my tests. The woman opposite me in the waiting room is coughing and spluttering. I'm not taking any chances, after last week, so I put my mask on. I wonder if she realises I'm protecting myself from her? All my counts are good. I don't need any transfusions. My neutrophils are holding up ok, considering I'm no longer taking my "stimulating factor" injections to pump them up. All good. They stand me down to weekly tests (instead of biweekly). If things progress like this, I may be able to have my line (the pipes) out in a couple more weeks. Most importantly, no temperature, so I am in my own bed again, tonight. (I inevitably worry, each time I visit the hospital, that they might not let me out!)

Part of the purpose of this blog is to address frequently asked questions. There have been a few recently, as I've begun to recuperate. What happens next? When will I be fully recovered from myeloma? I thought it might help to explain a bit, because myeloma (quelle surprise) is a bit more complicated than that.

There are three horizons to determining if the transplant (SCT) has been successful. The first measure of success is if it hasn't killed me. Looking good so far! People do get infections and die, even months after their SCT, though that is rare, for SCTs like mine, where you are your own donor.
Second is if it has achieved better remission than I was in before: less myeloma in my marrow, as measured through fewer light chains in my blood. We won't really be able to tell for a few months exactly what level of myeloma grows back with my bone marrow. I expect they'll measure my light chains monthly, for now, and I'll have another bone marrow biopsy (yippee) around day 100.
Third is if it achieves a long remission: how long without the myeloma increasing. Myeloma is so "individual" (the politically correct term for unpredictable and poorly understood) that there's little indication of how long the remission off my SCT will be. On "average" (median) I can expect about 4 years. Some lucky souls get 10 or more. As an absolute minimum, if it lasts more than about 18 months we might consider it worth repeating, if we needed to, whereas if it lasts less, we probably would not.
So I'll continue to have blood tests regularly to check all's well and to see if anything is changing in my light chains. I will almost certainly live with regular tests, and the nervous wait for the results (is my myeloma relapsing?), for the rest of my life. The chances are (highly likely), that one day, it will relapse. At that point I might need another SCT, maybe from a donor. I might need more chemo. I might need "maintenance" therapy - i.e. low dose chemo taken indefinitely. We don't know, until it happens. Hopefully, when the time comes, it responds to treatment again.

But we'll also be keeping a look out for other things. Myeloma can sometimes cause plasmacytomas (soft tumours of myeloma outside the bone marrow) or amyloidosis (deposits of light chain proteins in the blood and beyond). It can also progress into leukaemia. There's no way of knowing what my "individual" myeloma will do. Let's hope it does none of these things.

Most of those who die quickly from myeloma were diagnosed in their 70s (most myeloma is diagnosed in the over 70s). Still, we can't hide from the fact that myeloma is pretty vicious. I have a support group of "under 50s", whose friendship matters to me enormously. Every now and then, someone in that group dies, and I have to recite my little mantra
"That wasn't my myeloma. It wasn't me".
But, equally, there are people out there who have lived a very long time with myeloma. Some docs think a subset of myeloma sufferers are already being cured. My consultant does not, but he does think we're getting to the stage where we may have a group of people who live long enough to die of something else. Think of that as a functional cure, or myeloma as a chronic disease. And there are a lot of new drugs being developed, tipping the balance further in my favour.

So that's how it goes from here. Never an all clear. But I intend to be fit and healthy and not thinking about myeloma. Or at least, not much.

On Saturdays I took her out to the supermarket. Food is in the trolley and roses in the basket. I remember when I used to walk it. It's impossible to carry water in a basket
Go Shopping - Bran Van 3000 (feat. Eek-A-Mouse)

Repeat

Back once again for the renegade master. D4 damager. Power to the people... Back once again, with the ill behaviour
Renegade Master - Wildchild

Day 25 : Finally at home again, and beginning to believe I can stay here

The week proved to be an experience in repetition. First I had a repeat of the fevers, just when I thought I'd got over them. Not as bad, second time, but I could have well done without it. And it kiboshed any dream of going home by Friday.

Then I had yet another platelets transfusion. These are all very well, but they have to pump me so full of antihistimine first, that I feel mighty drowsy, and the new platelets make haste for the lining inside of my nose, which turns into one great big clot for the next 24 hours.

In the mean time they got very worried about my potassium levels and were about to pump three great big bags of the stuff into me, until they repeated the blood test and concluded the first result was wrong, by a factor of half. Fills one with confidence.

Then I had to have another (red) blood transfusion. This took up all of Saturday. Having had my blood tests at 6am, they made the decision to transfuse just before midday, but didn't bring the blood until 5:30pm, and then it takes 4 hours for the transfusion to run.

Which meant my last (and best) repeat: going home, happened at 10:30 on Saturday night. Which is ridiculous, but I'm not complaining. Still, it was always my expectation that I would be discharged this weekend. I'm on track, even despite the setback that just cost me another 5 nights in hospital.

And very nice it is here too. The children are away for the holidays (with Marisa), so I have peace and tranquillity. My Mum is here with me. And I'm slowly beginning to get back on my feet. I don't feel as exhausted as I did last time, though every activity knocks it out of me. I can spend about 5 minutes on my feet, doing stuff, before I need to sit down again.