Wednesday, 21 June 2017

Psychophysical

Destiny is calling me. Open up my eager eyes
Mr Brightside - The Killers

I decided this week's update should come before my clinic appointment. After all, 99.8% of my life occurs between appointments. I live life merely reaching from one appointment to the next.

It's been a strange - and not always easy - few weeks, accompanied by a sense of foreboding of what is ahead. I've felt increasingly tired, run down and achy. The weird thing about symptoms is that even with many years of self observation I am no closer to being able to separate physical from psychological. I guess it is simply not possible. Consequently, I am unable to tell for certain if I am suffering anaemia or depression. They could both deliver the listlessness; the lack of energy, interest and concentration that I have been feeling.

Then again, I have been feeling much better the last few days, so maybe it was just a virus. Anything is possible. It's not nice feeling watered down. I'm glad its gone again.

Marisa sent me to the GP to get some better painkillers (back on codeine), and to have my repeated complaint of possible kidney stone problems checked out. The Dr gave me the impression that she thought my symptoms were more likely bone pain than anything else. But a urine test showed positive for blood, so maybe I am right. Either way, I will at least get a referral to have my kidneys checked over.

Life feels even more hand to mouth than normal because if this week's appointment is a bad one - another +100 - that's basically the signal for going back in to treatment. I do so want to make it through the summer first. But the waiting is killing me almost more than the myeloma, right now.

As I'm preparing to post this, the hospital calls. This week's clinic is cancelled. I ask for my blood results over the phone. My light chains (KFLC) are 654. That's +50 on last month - just little enough, I would imagine, to tide me over another month. And my Hb level is back up to 12.0, so no dramatic anaemia, either. I'm grateful, really. But if you are hit by a speeding car, you have a lot less time to think about it than if you are flattened by a road roller like Otto in A Fish Called Wanda.

"I'm going to k...k...k...kill you!"


Friday, 26 May 2017

Recidivism

Think of all the roads; think of all their crossings.  Taking steps is easy; standing still is hard. Remember all their faces; remember all their voices. Everything is different, the second time around.
You've Got Time - Regina Spektor (theme from Orange Is The New Black)

KFLC >600 ... Hb = 11.5 ... mood = low

I'll save us all the witty chat. Today's appointment is mercifully punctual and brief. Those are its redeeming features. The little plateau on which I have been resting, precariously, for a while, seems to be at an end. My light chains have jumped 50% in the last 2 months. In theory, this is all irrelevant because clinical symptoms - of which I have none - are the only sure basis on which treatment decisions will be made.

But.

My haemoglobin levels are dropping. Nothing dangerous yet, but there's only one direction of travel. If they continue the way they are going, anaemia will become a clinical symptom in its own right. And anyway, the doctor is increasingly concerned about the light chains themselves and the risk they pose to my kidneys. My kidney function is fine - as it has always been - but it's really not something where you want to wait until the damage has been done.

So, my springtime of skipped appointments and long intervals is abruptly over. I'm back on a 4 week review cycle. If my light chains do again in the next couple of months what they've done in the last couple, it will be time to begin planning my return into chemo. Maybe I'll string it out another month or two. Maybe.

For reasons it's not appropriate to dwell on here, I've spent a bit of time this week revisiting the process of diagnosis, and the terror and confusion that went with it. It's very different second time around. No confusion. Less terror. More dread.

Thursday, 16 March 2017

Live more

I'm on a different kind of high. A rush of blood is not enough. I need my feelings set on fire
I dare you - The xx

You know the rules round here. DialM is about mm, with the rest of me sort of squeezing through uninvited. Usually in the form of music and travel. Because that's who I am... (oh, and KFLC = 421)

I went to Brixton Academy last week, to see The xx in concert. It was only once I was there that I recalled I had seen them, in the same place, sometime a little over 4 years ago. I know last time round I had to simply stand rigid through the pain until eventually my back went numb. Maybe the morphine had dulled my senses back then, because the gig seemed so much richer and more alive this time round. Echoey guitar; deep rhythmic bass; haunting vocals. Splendid. I love concerts - not least the feeling of having no regard to being the wrong side of 40 (though I take my hat off to the 2 friends who went Sunday afternoon clubbing last weekend. I'm not sure I'd be up for that even if I didn't have children as an excuse.)

In 2 weeks, Marisa and I are taking the kids to Japan (新幹線温泉寿司). There's a sense of urgency for us about making adventures, which is definitely a consequence of myeloma. It's 18 months since we were planning our time in Central America, which really did feel like a snatched opportunity. And yet... time passes and I don't have a real sense of how long the good times will last, any more. But the longer they do, the more trips we'll pack in, no doubt, unless something else stops us. Myeloma has made me live more, now, than I suspect I would have otherwise.

Live more, myeloma less. Or something like that.

Having bunked my last hospital appointment, because I was on a business trip (New York, Toronto, Bogota and Mexico City), I had to book this week's appointment on the phone. The receptionist would only put me in for the end of the Wednesday clinic, which meant 2 hours sitting waiting, and a different doctor. I have to smile my sweetest to get put back on Friday's appointment list for next time. Friday's clinic is only for clinical trial patients, a category into which I do fit, technically. But more importantly, if I turn up early on Friday mornings, I'm spared the endless wait.

My light chains are up, but only a little, within the range where variation in results makes the difference insignificant. The κ/λ ratio is pretty much unchanged. All of which suggests nothing much is happening. The κ/λ has moved in a couple of jumps, doubling abruptly in July 2015, and then again in April last year. But since then it has risen only 50%, and been static now for several months. The myeloma is unquestionably there. And unquestionably returning. But beyond that? Pfff. The doctor is happy enough not to see me for another 10 weeks.

We do have a discussion about treatment options. She mentions bortezomib again, possibly in conjunction with a clinical trial drug (venetoclax? - which I hadn't previous heard of), before another stem cell transplant. (I guess it depends on how long I hold off treatment, as all these trials have recruitment windows. But if not this one, there'll be another, no doubt.) And after that I'd still be "naive" (her word) to so many drugs - thalidomide and lenalidomide being obvious ones. Which means I've potentially 3 lines of what are, by current standards, very conventional treatments, ahead of me. And that could take a number of years to work my way through.

The UK myeloma group on fb, of which I am one of a group of admins, has had a punishing few months. Relapses. Horrid experiences. Deaths. Partly that's the toll of winter, and many of the patients are older than me (not that this makes things any better, just maybe less relevant to my prognosis). Some of the stories are shocking. Vicious, callous and abrupt. And being young is no guarantee of a better outlook. I am profoundly grateful, and humbled, by my own relatively benign experience of myeloma, and the massive amount of disease free time I have been blessed with.

Myeloma's horizon seems to be receding, for now, for me. Though it continues to menace. And when it does return it could do so abruptly, I'm under no illusion about that. In the mean time:

今を生きる
後で骨髄腫

Monday, 6 March 2017

Tasty

The taste just slips away
Taste - Ride

Anyone for high dose gin therapy?

On March 6th 2013, 4 years ago today, I had a drip infusion of "high dose" melphalan; the first part , and really the main event, of my stem cell transplant. (The actual transplant, a day later, was merely a salvage therapy to stop the melphalan from killing me.) Its consequences were physically gruelling, and it was the beginning of a month's forced separation from my family (we weren't finally reunited for 6 long, desolate weeks, during which time I missed Lyndon's first birthday). But it was also the beginning of my recovery from the illness which had consumed me over the previous year.

And much to my amazement, my recovery seems, for now, to continue. I am feeling well. I haven't succumbed to immune-compromised infection at all this winter. The pains in my bones seem all mechanical, rather than myelomal, and not getting noticeably any worse.

For the first time ever, I bunked a hospital appointment, last month. I was overseas, working, and I didn't remember to cancel/reschedule in time. So I'm currently on just about the longest break I think I've ever taken from the haematology waiting room. I'm going back in next week, so I will get an update on the numbers then. But to be honest, up down or level I really do not care, as long as I feel well.

The only drip infusion I've had recently was this gin one, in a dubiously themed bar in Herne Hill. Gin tastes A LOT nicer than melphalan. And gin takes less time to recover from, too, no matter how high the dose.

Wednesday, 11 January 2017

Compassion

I had to phone someone so I picked on you. Hey, that's far out, so you heard him too?
Star man - David Bowie

I'll be sharing this video with my kids. The virtue of being nice, in a metaphor they'll understand. No fun living, if you live on the dark side.

Friday, 6 January 2017

Sitting pretty

Sitting pretty in the prime of life. I'm so tasty and the price is right
Take a slice - Glass Animals

Today's reading is taken from the book of Crapulous, chapter 94

An appointment with a sole purpose: to discuss my MRI results. (No new blood test results to look forward to.) So it is typical of the limitations of the NHS that, when DrC opens up my notes, the full-body MRI report is still not there. We're left - hardly for the first time - to chat on the basis of what little we know. We warm up with small talk about Christmas, the relative merits of Rome and Copenhagen (I've had the pleasure of visits to both, over the holiday season), and international job opportunities for myeloma specialists. We even touch briefly on brexit. When we get on to Putin, we realise it's time to return to the matter in hand.

So... reading the runes. There's new evidence of damage in my upper thoracic spine, and in my lumbar region. But no evidence of progressing myeloma. DrC thinks it is unlikely that the full-body report will show up pockets of mm, given that the spine does not, and I'm happy to accept this as entirely plausible. He describes this as
"Good news"
But I'm a little more sceptical. I explain my concern. Worsening kyphosis? Chronic pain? Is my spine going to keep slowly crumbling? DrC promises we won't let that happen and says that I could go through more vertebroplasty. I don't think my current symptoms are sufficient to begin that process. At the same time, I don't entirely buy the promise. I make a mental note: I must continue to recognise that my spine is weak so... definitely no return to running; avoid heavy lifting or arduous manual activity; and I must do more regular back exercises. That way I hope I can avoid my back getting much worse. At least, slow the process. And maybe I'll go back to my gp and ask for some more strong painkillers - so when I have a bad day, at least it doesn't hurt.

At the risk of getting into crystal ball territory, I ask DrC, in light of last month's KFLCs, whether it is possible for myeloma to plateau after progressing for so long. I'm rewarded with another parable*.
Cancer gang tattoo?
"Cancer, is not one thing, it is a number of gangs. One gang may be stronger than the others, and so that gang grows bigger. But it is possible the father of that gang is not a stem cell, but one level lower than a stem cell..."
(the metaphor has somewhat broken down, I feel, but let's roll with it)
"...in which case it may not be immortal, and after growing, that gang may die. In which case, in a low-malignancy disease, it is possible to see progression stop or even appear to reverse".
It's why, he tells me, it's best to be cautious about treating mm - avoiding treatment that is too early or unnecessary.

Picking up on the 'low-malignancy' reference, I risk a question about prognostic indicators, specifically the contrast between my 'high-risk' genetics (del17p / TP53, for those who know what that means), and my 'low-risk' ISS staging ('stage 1' due to low levels of ß2-M). He rolls his eyes as doctors normally do when faced with evidence of patients who have been mugging up. He taps away and confirms I'm right about the genetics (ha!) and that this is indeed bad. But he says his reference to low-malignancy was about mm generally - for example in comparison to plasma cell leukaemia. He also says that my response to transplant has been very good. Average (median) time to progression ("PFS" - progression free survival) is 29 months and average time to treatment is 3 years. Although I've been relapsing for ages, I am now nearly 4 years treatment free, and I'm beginning to wonder how much longer I will eke this out. It may be longer than I think.

It is weird living with this complex, mysterious, menacing thing. But while it doesn't actually bite it is a mental, not a physical battle. And it does at least spur me to live my life.

I stop at phlebotomy on the way out, to have some blood taken. As I leave I wish the nurse a happy new year.
"2017, they say it may be hard year", she replies.
"But hopefully not for me", says I.
I head home and research flights to Japan.

* I reckon doctors reading patient blogs would be like actors reading reviews: probably inadvisable. But if DrC happened to read DialM, I hope he would recognise that, over the last few years, I've appreciated our exchanges, and his efforts to answer my questions. I quite enjoy the metaphors. (Maybe I could gather all these parables up into a 'Book of Crapulous'). I certainly value his expertise in his subject, and his continuing to see me. He is the hospital's head of clinical trials for myeloma. And I am not even in treatment, let alone on a trial. But one day I will be, and I hope I'm still in his care when that day comes. If I seem facetious, it is a product of the ongoing weirdness of a life in myelomaville.

Wednesday, 4 January 2017

Janus2017

Today is the greatest day I've ever known. Can't wait for tomorrow; I might not have that long
Today - Smashing Pumpkins

And a Happy New Year

By some reckonings, 2016 was a bad, bad year. Brexit. Trump. Syria. Arctic temperature anomaly. Zika. Truck massacres. Celebrity death toll (though I'm a little sceptical about whether more people actually died, or just that it somehow became a meme).

By another reckoning, 2016 was a miracle. Chemo free for me. And most importantly, as one of my myeloma buddies posted on fb on New Year's Day:
"Still here"
The year even finished with my light chains on a plateau.

Who knows what 2017 will bring - for the world or for me. It's hard to be optimistic, but pointless to be pessimistic. Realistic? Apathetic? Pragmatic? Indifferent? Whatever. I'll take my chances.

The world, for all its many many faults, is still a beautiful and inspiring place.

Dawn, this morning. The view from my bedroom. #lovelondon

Friday, 9 December 2016

Plateau

My body's made of crushed little stars and I'm not doing anything
My body's made of crushed little stars - Mitski

Check up ... KFLC = 381 ...

I'll keep this brief, jumbled and confusing - in honour of today's appointment.

When I arrive, at 11:15, DrC is clearly in a rush. The first thing he asks me is about changing our appointment times.
"This clinic is crashing! I have too many patients! Can you come early morning?"
"Eh?"
"Can you come earlier? I start at 8:30!"
"It suits me much better to come early. If I drop the kids off at school and come straight on, I'm here by 9. I only came later today because that is the appointment I was given"
DrC rolls his eyes.
"Ignore that! Come early! OK, so we can continue!"

By this stage he has already opened my file and interjected:
"Your light chains are plateauing!"
Plateauing equals no news, which is very good news. Which definitely wasn't what I was expecting; partly because gloom always consumes me in the days before clinic; partly because this week coincides with my first virus of the season - a minor grey-out - which always makes me feel pathetic; and partly because my rib pain is noticeably worse, these last few weeks.

As anticipated, my MRI report is not yet complete. DrC flicks it open. Glancing at the screen it looks to me as though the spine report is in, but the whole body one - which would include my ribs - is not. He says we need to discuss some possible damage, but he'd like to wait until the whole report is there before doing so. He clicks it shut again. Anyone would think he is in a hurry. But I've already seen a little of it, and I'm not going to be fobbed off too quickly:
"I see the report mentions damage to T1-T3. That's certainly not something we've ever discussed before".
T1-T3 would correspond to the vertebrae behind the top of my ribs. Until now I've always understood my problems start from T7 downwards. DrC offers one of his peculiar metaphors:
"If your tyre has a hole, it may go down. That is progress for the car, but not for the hole"
By which - I think - he means that my vertebrae may still be deteriorating from old lesions. That could explain me having new pain symptoms, while the myeloma itself is not going anywhere.

I guess that's good news of a sort. Though I'd prefer my skeleton to stop crumbling, I'm happy enough to not be booking in for chemo. I'll get a better understanding when we can see the report for my ribs, or indeed stop long enough to have a proper conversation. There are obvious questions. The most prominent being: Can we do anything to stop my bones breaking? and: Are we sure my myeloma is plateauing, and not just secreting less light chains?

These answers will have to wait until January. I go to the reception to get my next appointment.
"The only time I have available is 10:45" she tells me.

Wednesday, 7 December 2016

MRI

Nothing else matters; I don't care what I miss. Company's okay; solitude is bliss. There's a party in my head and no one is invited. And you will never come close to how I feel
Solitude is bliss - Tame Impala

Fate clearly couldn't resist my claim that "one can’t really have too many MRIs"

I am booked in for a "whole spine" followed by a "whole body". These sound like spa treatments, but sadly are not. They are MRI scans.

The drainpipe, Goatchurch
For the spine one, I have to have my neck restricted with a clamp across my throat. It takes a few goes to get my back flat enough to actually fit in the clamp so that it can lock in to place. It's not a lot of fun lying on the gurney with one's head clamped in place. I'm not prone to panic or to claustrophobia, which is a good thing because the inside of an MRI scanner is pretty close. It always reminds me of the "drainpipe" one has to wriggle through at the bottom of Goatchurch Cavern in the Mendips (I can't quite believe I used to think that was fun!).

The MRI is noisy, so inside my head clamp, I'm wearing headphones, through which I can also hear the technician. Because there can't be any metal bits, the headphones are pneumatic - consisting of hollow rubbery hoses rather than wires - like one used to get on aeroplanes, long ago. The same is true of the panic button they place in my right hand - a squeezable rubber ball attached to a rubber hose. They offer me music, but previous experience tells me that's a bad choice. For a start the machine is so noisy one can hardly hear the song well enough to enjoy it. But worse than that, there's the risk I find myself being subjected to James Blunt, or something. Would it be OK to press the panic button because I wanted them to change the tune? I've never squeezed the panic button before, but I do so today almost immediately, before we're really started, when I realise that the cold I have come down with, combined with the head clamp, means I am in danger of drowning in snot. To be honest, blowing my nose doesn't help much (Rib pain means I'm not so good at vigorous nose blowing anyway - or sneezing, or coughing, or laughing). In the end I resign myself to mouth breathing. My throat was pretty sore before we start; by the time we finish it is raw.

Whole body MRI apparatus (with person inside)
The whole body scan requires bits of kit all over me, meaning that I am now effectively tied to the gurney at chest, wrists, thighs and ankles with all sorts of pads and bits of stuff on and around me. I've also got another bit added to the top of my head clamp so my head is basically encased. This scan is going to take around 45 minutes. As the gurney slides into the scanner, the panic button hose catches on something and I feel it "pop" out of the button. I better not panic then, because I can't move, and no-one can hear me.

This MRI is particularly noisy. It has repetitive cycles of beeping, backed up with low jolting bass that is so powerful it physically shakes my body. It reminds me of the techno room at Ministry of Sound (c.1996). As one entered the room, emerging from an almost pitch dark corridor, one was met by minimal white and strobe lighting, and pulsing techno that went beyond any sense of melody to just an all encompassing vibrating, thumping sound. This MRI seems a bit like that. But maybe it's just because I am wrapped in this peculiar head gear, and drowning in snot. 45 mins passes. But I'm glad when it's all over. Relaxing it is not. With myeloma, even lying still can be hard work.

Did I mention that I also have to have some marker dye injected, so I have a canula in my right forearm? Or that I periodically have to hold my breath for various intervals while the machine scans my ribs?

I have at least learnt from experience to arrive wearing trousers with no metal - no zip, no metal fly buttons, no rivets - which means I can go through the procedure clothed, rather than in one of those bum-hanging-out-the-back gowns hospitals have to offer. Small mercies.

I'm back in clinic on Friday. I suspect the full MRI report won't be available. But given the amount of problems I have been having with my ribs these last few weeks, I'm not overly optimistic about how this clinic appointment is going to go. I'll let you know!

Wednesday, 9 November 2016

Like?

You're here, and you're mine. I haven't seen you in a long time
Longtime - EMF

Check up ... KFLC = 376 ...

I went to my most recent clinic appointment in a little trepidation. I have been getting an increasing amount of pain in my ribs, and I wondered if this would be the month when, against all my instincts, my blood counts jumped abruptly in the wrong direction. Fortunately, it was not. Things continue on their steady course. Worse, but only in line with expectations <like>.

If only the rest of the world were the same. Sometimes, the world’s problems seem greater than mine <sad>.

DialM has not seemed much of a priority, of late. However, I owe you and update. I have realised that, assuming the numbers don’t give me away, my doctor’s perception of my health, and so my need of treatment, will come down to how much I complain. I find myeloma pain difficult to describe. Actually my ribs are more uncomfortable and annoying than actually hurting. How bad is it, really? But if one frames the question as “Is it bad enough to make you want chemo?” then the answer is clearer. No. It is not. I did consider, therefore, telling the doc that everything is fine.
But honesty won out, and the net result is that another full body MRI is now booked in, and I have another clinic appointment in 6 weeks, rather than the 8 weeks I’ve been operating on recently.

I went to the Science Museum with Gyles the other day. There’s a great new area of hands-on stuff. We had fun with a display consisting of a rope tied between two revolving wheels. As the wheels spin at different speeds (which you can control) the rope between them forms into standing waves. I wonder if my experience forms into emotional waves – highs post-clinic, lows pre-clinic with clinic appointments serving as nodes. Certainly I felt better after this appointment than before. Though my ribs still cause me trouble, which suggests that is an “objective” sensation (there is of course no such thing) rather than purely psychosomatic. Let’s see what the MRI says. From a patient’s point of view, one can’t really have too many MRIs.

---

And of course, I am lucky that I have had well over 3½ years treatment-free. One of my mm friends (I won’t credit her here by name because she is a more modest soul than me, but this is her metaphor not mine) recently described myeloma as an awful night hike, where you’re feeling your way, hands outstretched in the dark, negotiating rocks and ravines, carrying a massive backpack. In front in the blackness, you can hear comforting voices “I stood on a snake, but I’m OK”, “I just had a fight with a grizzly bear”. I think that captures the experience very well indeed. I am grateful to those on the path in front of me, for their candour and support <love>.

And also happy that my walking has been uneventful for such a long time <laughing>.

---

Those of you connected to me on facebook will know that mostly right now I just bang on about politics. This is not the place for that, save to say 2 things. Firstly I had the odd experience of posting something the other day which “went viral” <wow>.

A comment on a newspaper website, backed up with a rude joke, amused more people than I could possibly have anticipated. It rapidly appeared all over facebook and twitter, garnering tens of thousands of shares and retweets. For 24 hours my phone buzzed and beeped as my own comment bounced around in cyber space. I think I just had my 15 minutes of fame. So at least I can cross that off the bucket list.

Secondly, and a lot more seriously, people say many stupid, naïve and reckless things these days, stated as though they are facts, and as though they have extra gravitas for the specific reason that the person talking doesn’t have any experience or evidence to back themselves up. One of the claims is that the UK is going to grow more doctors, and be able to boot out all those horrid foreign ones. My consultant is Hungarian. I don’t know how long he has been training to get to where he is, but I’m guessing it's basically been his whole career and he’s as old as I am. I value him very much. I don’t want to live in a country governed by such stupidity that we’d make people like him feel unwelcome. The NHS will be poorer, and people will die, because of brexit. I’m sure there are already medics who have decided to leave, or not to come here, since June, and we can’t simply replace them because their skills are the product of many years of work <angry>.

Sunday, 4 September 2016

Wildly unsurprising

Big boss, big time, business. Make me your mark and I’ll take you one by one *
Big Boss Big Time Business - Santigold

Checkup ... KFLC 341 ...

Are you bored of hearing about my slowlapse? The heavens know I am. Here's another instalment. All so very portentous, and yet not much new in the news. My light chains are up again. The absolute figure is somewhat alarming, being more than half way back to where I was before my transplant. But the trend is continuous and gradual - increasing about +50 per month now. It was +10 per month 2 years ago; +30 per month one year ago. I ask DrC whether I should be expecting the linear trend to continue until I find myself complaining of symptoms, or if we're waiting for some exponential acceleration. His answer is that cancer is abnormal by nature,
"Like a wild man".
Its progression cannot be predicted.

My own hunch, though, is that the onset will be gradual. And I'd rather have slow myeloma than fast myeloma, even though it may mean I have to return to properly symptomatic illness - bone pain and all - as the cue to treatment. What fun! As for when I can expect this joy? DrC says, again, that he reckons I probably won't need treatment for at least 6 months. But at the outside, at the current rate, it will only be another year until my light chains are >1,000 and I'm fairly confident I'll be symptomatic by then. So back on chemo somewhere between March and Sept 2017, and another SCT somewhere towards the end of 2017 or early 2018. Somehow I have dodged the bullet in 2016. There's no realistic prospect of doing so much longer.

None of this is really news. And right now, I feel fine. Whatever.

Nor does the report from my most recent spine MRI shed much light. My back is wrecked, but it's not about to collapse. My thoracic and lumbar regions are a mess of vertebra compressions and fractures, and there's visible infiltration in my bone marrow, but there's no evidence of imminent likelihood of cord compression. I'll have to hope that the neuropathy in my thigh eventually resolves.

I've been in this waiting loop for a year now. It doesn't half disrupt plan making. Decisions about work, travel, even whether or when to get a puppy, are all stuck somewhere between provisional and impossible. I really don't know. Cannot know. Right now, with the kids going back to school this week, I'm going to invest a bit of time in home making, to which I'm quite looking forward. Next week Lyndon starts school: a day I once feared I would not see. For that I'm grateful. So much so that I can avoid dwelling on the rest.

* The lyric is fatuous. But Santigold puts on a great live show.
Being able to stand up in a gig is another thing I'm grateful for

Friday, 29 July 2016

Killing time

You're a water sign, I'm an air sign. Pumped up with Valium, could you get me some?
Sleeping pills - Suede

A nothing-to-report report

Half way through today's consultation, DrC says that he thinks this appointment is a little pointless. Far be it from me to say so myself. But we did know, when we booked it, that we would be meeting without any test results at all to discuss. It could only ever be a chat. And we get enough chats already. But don't let that reality stop the NHS clogging up its own diary, or dragging me back from Sunny Sussex. And I'm not complaining: they only treat me like this because they care.

Still, it sort of bridges the otherwise gaping chasm between appointments that would be the result of me going on holiday next week. I don't think they'd choose to sign me off for months at a time, right now. But I don't ask permission. As I promise DrC this morning:
"Look, if it gets to the point where I can't walk, I'll get someone to bring me in here straight away whether I have an appointment or not."
He looks askance, but signs me off for another 5 weeks. What else can he do.

"So is it even worth me going to get my bloods taken today?" I ask.
Capitalizing on his momentary hesitation, I quickly answer for him
"No? OK,"
But he's not falling for that, and wrestles back control of the conversation. I am to get my bloods taken today. And again in 4 weeks time. At least we will have lots to talk about when we next meet.

I had my spine MRIed yesterday*. It was quite soporific, apart from all the noise.
B-DUNG B-DUNG B-DUNG. DE-DE-DE-DE-DE-DE-DE-DE. NWUUMMM NWUUMMM.
I wouldn't mind the noise if it was a little more predictable. But it seems to follow no pattern. And I much prefer patterns. Still, I was in there about an hour and managed to defocus my mind quite considerably. Not unpleasant.

The justification of the MRI was that the numbness in my leg may be due to a nerve in my back, This is most likely around the L2 and L3 region **, which previous imaging has shown are fractured.
The images have not yet been reviewed, and DrC declines, quite reasonably, to look at them and
"just make a serious face"
as he explains it to me. We need a radiographer's report. Yet more to talk about next time. Can't wait.

His view is that if there is an identifiable problem here it is probably the result of previous damage, rather than newly active myeloma (that was my assumption too). He also tells me that if there's a nerve pinch due to a compressed vertebra, then he could potentially refer me for more vertebroplasty. I'm in favour of that: it made a massive difference last time. The numbness in my leg is definitely getting worse, not better. It is a stinging sensation now, and quite annoying if I stand for too long.

So for now we can add 'dodgy leg' to the list of 'things which don't count as progression from the point of view of starting treatment', along with 'occasionally achy ribs' and, of course, my light chains. I wonder how long this list can get.

Sighisoara, neither Italy nor Switzerland
DrC asks where I am going on holiday. When I say I am going to Romania, he looks a little surprised, and asks why. I don't think my 'places I haven't been' explanation convinces him much.
"I mean, have you been to Tuscany?" he asks
"Yes."
Pause.
"Tuscany is very nice", he adds, encouragingly.
"Yes."
Pause.
"Not just Florence", he clarifies.
"Yes. Like Siena and little places like San Gimignano"
Pause.
"Well, have you been to Switzerland?" he asks
"Yes."
Pause.
"The Alps?", he adds, hopefully.
At this point he has the good sense to give up on this line of questioning.

* I'm more than happy to have had another MRI, because if we are making inaccurate assumptions about my progression, the best way to find out is a scan. And unlike CT or PET scans, MRI is harmless. For comparison: a chest x-ray is equivalent to about 10 days of background radiation exposure; a CT scan of the spine is equivalent to about 2 years; and a PET-CT to about 8 years. You really don't want to have too many CT or PET scans. Whereas aside from the cost, and the time, there are no known negative consequences of MRI. From the myeloma patient's perspective, the more MRI scans you get during the process of relapse, the better.

** The human spine is divided into 5 regions. The top 3 regions contain 24 vertebrae: Cervical spine (your neck) 7 vertebrae C1 - C7; Thoracic spine (behind your ribs) 12 vertebrae T1-T12; Lumbar spine (at the bottom) 5 vertebrae L1-L5. The final 2 regions of the spine - sacrum and coccyx - are all fused together. I know my spine is damaged from T7 to L4 - which is basically half the vertebrae. When I get the new MRI results. I'll endeavour to get a complete breakdown (for want of a better word!)

Friday, 8 July 2016

Slowdrown

Slow down. Slow down. You're taking me over
The Drowners - Suede

Check up: ... KFLCs 264 ... Hb 13.0 ... Neutros 1.6 ...

My slowlapse continues. If anything the increase in my light chains is marginally decelerating of late. I don't think I'll be lucky enough to see it actually plateau, but who knows. And apart from numbness in one leg (another MRI beckons, I would imagine), I have no symptoms to report. All in all, pretty unremarkable.

I get chatting to a fella in the waiting room, who looks amazingly well for only 3 weeks out of his SCT. I recognise the lilt of his accent. He is Zimbabwean and so we drift into conversation. In no time I have his number and an invite to stay in his place in the Highlands. Which is a tempting proposition indeed.

Zimbabwean people really are the world's friendliest, even though their country is a basket case. I wish I could say the same for my own. The last few weeks feels like we are drifting in the direction of unfriendly-basket case. Still, it is nice to have things to worry about other than my 'eloma! I had the pleasure of meeting up with a myeloma-buddy to go marching on Whitehall last week. We had something to talk about, other than ourselves, which is a blessing of sorts.

Friday, 27 May 2016

Arithmetic meaning

Sometimes I feel like I'm going down south. Sometimes I feel like I'm over and out
Little Arithmetics - dEUS

Check up ... KFLC = 253 ... Hb = 12.6 ... Neutros = 1.6 ...

Just a little update on the numbers, at today's clinic. My light chains are still increasing without accelerating. The rest of my blood counts are recovering compared to two months ago. We - DrC and I - conclude that the dip was, as suspected, the result of an infection. While my blood counts improve, and I have nothing significant to report ("I got a cold last week. ¡Stop the press!"), I can't really class myself as ill. There's so much worse around me in today's waiting room, and outside. In comparison to some of the experiences I have witnessed in my social circle recently, I can seriously count my blessings.

So I am relapsing, but oh so very slowly. Which is the very best way to relapse, and I think I've got my head round that now. ("Falling, with style"?) After some anxious months, I'm regaining my "Whatever!". Ironic that today I am offered a place in a "fear of relapse" course. Not sure I'll attend. To be honest, I can't be bothered counting the score, let alone doing the analysis, right now.

We - DrC and I - permit ourselves a bit of philosophical chat and crystal ball gazing. I'm increasingly optimistic that it will be early 2017 before I end off back in treatment.

I'm beginning to wonder if DrC has had some kind of bedside manner transplant (a different BMT, rather than a bone marrow transplant?) He says, again, that he is optimistic for me; that there are many options for me. Then he spoils it slightly with a joke about
"standing in the graveyard saying 'oh, we were wrong'"
and finishes off with a statement of the most clumsy profundity
"Of course, not having the myeloma is better".
But I feel he is progressing on his own journey with myeloma, in parallel with mine.

One reason I may be feeling healthier is that I haven't done much work in the last few weeks - a coinciding of natural pauses in my various jobs and responsibilities. I don't feel very much urgency about this. As long as this intermission continues I wish only to enjoy living.

So while the days are long, even if life is short, you'll find me basking in the southern Sussex sun.

Friday, 15 April 2016

Grey-out

The river's edge; you jump right in. The current's strong; it makes you spin your arms in a wild rotation
Swim - Madder Rose

Check up ... KFLC = 220 ... Hb = 11.8 ... Neutros = 0.72 ...

Previously, on Dial M...

Chapter one: The dramatic bit (All those fractures! Becoming a hospital VIP! Transplant!)

Chapter two: The heroic bit (Recovery! Set backs! Perseverance!)

Chapter three: The euphoric bit ("Normality"! The wonders of living!)

We pick up the plot...

Chapter four: The confusing bit.

Foggy on the beach (Camber Sands)
Since I started to relapse, late last year, its been hard to work out where I'm at. I've suffered a range of pains and symptoms which could be myeloma, or as much my own imagination. Two weeks ago I had what I can only describe as a grey-out. I guess the cause was viral, and it left me feeling lethargic, weak, despondent. Recovered now, I can at least be certain the experience was real - I genuinely do feel so much better. But of whether it was myeloma, or man-flu, I'm less sure. It's no fun for me - and none for Marisa either - to keep lurching, like this, towards the precipice. I'm increasingly daunted by the thought of going back in to treatment - reminded of what it will entail, and of how crippling it is for me, and my entire family, when I cannot function fully.

Sure enough my light chains are creeping up. But we knew that, and DrC doesn't think that's even very meaningful, because we don't know what number we're waiting for. My κ/λ has dropped again - because the lambda number is back up. DrC says he thinks the κ/λ is not worth worrying about. We're simply waiting for symptoms. I ask him to hazard a guess how long we've got to wait. Among all the usual "could be tomorrow" caveats, he suggests at least 6 months. Which is quite a long time.

Last week (when the blood tests were taken) I was really quite neutropenic. We're repeating the tests today, working on the presumption that last week's result reflected the aftermath of my infection, in which case they should be going back up again by now. He'll let me know, and I'll let you know, if this week's result is going even further down, in which case we have a problem. But I'd be surprised if that's where the story is going.

So I'm going to take my neutropenia as evidence that when I felt grey, I was not imagining it. And that instead of disparaging myself with "man-flu" I should rename these episodes as simply "m-flu", and just accept them as a plot device.

DrC says something nice this morning (I don't think it was intentional). He says
"You are only at the beginning of your myeloma journey"
Which I find quite a compelling thought.
When I was diagnosed, I read that median life expectancy is 4 years. Which was sobering. Of course that number is bogus for two reasons. Firstly because it is out of date. All the drugs from velcade onwards have improved things enormously. And secondly because the myeloma cohort is mostly aged 70+. It is not news that some people die in their 70s.

Maybe we're not on chapter four at all. Maybe this is all just the prologue?