Myeloma 101

Can I take this for granted?
Sex crime 1984 – Eurythmics

… KFLC = 101 …

Another teleconsultation with the doctor. Hospital appointments by phone are vastly preferable, as long as there’s nothing much to discuss. I hope this is a change that we can retain long after covid.

Roon 101, Rachel Whiteread (2003)
A cast of a now-destroyed room at Broadcasting House,
where Orwell once worked, and which supposedly
inspired the idea of Room 101 in the novel 1984.

My light chains are down again. A light chain score of 100 would have been my most optimistic aspiration for the outcome of the transplant. Instead, at Day +100 the results were pretty poor, and I was warned to expect to be back in treatment within months. But since then, my myeloma has unexpectedly retreated: KFLC = 250 in December; 160 in March; 130 at the end of April; 101 on 8th June. In some ways this response is even better coming after a delay, as it’s still on a downward trend. I don’t want to jinx myself by imagining next time’s score… but any further drop would compare with the absolute best response I’ve ever had.

I didn’t waste either of our time on the phone asking why it’s happening, or whether it will continue. I know that no-one knows. Still, I can approximate some rough prognostics. I might have a few years space, rather than just a few months. Of course, there’s no certainty – it could all change next week. Still, for now I’m pretty pleased with myself. Forgive me if I’m not overly sympathetic to anyone else’s lockdown blues.

Two nerdy appendices:

1. Why would myeloma levels drop after a delay?

myeloma cells are a type of B cell.
B cells normally produce antibodies;
and light chains are a component of antibodies

I don’t think there’s a definitive answer to that – certainly not one my doctors have offered to me. My assumption is that it’s to do with the hierarchy of cells. We know myeloma manifests in B cells, and also that it must exist in the progenitors that produce B cells. I don’t know if we know exactly how far up the hierarchy of stem cells it goes. I’d imagine it must go quite far up – that would explain why mm is so hard to cure. My assumption is that maybe the transplant has done more damage further up the cell lineage, so it is taking time for the response to work through to light chains – which are a downstream measure. If a population of B cells survived the transplant, but populations further “up” the hierarchy were more affected, then the observed effect “down” at light chain level would be that the reduction is delayed, as myeloma B cells are not replaced.

2. Why am I able to hope for relatively long time before my myeloma rears back up?
Some myelomas are faster than others. The prof told me, long ago, that I should be glad to have slow-to-go-down myeloma, as it is probably also slow-to-come-up. This has seemed to hold true. The key measure – I think – is beta 2 microglobulin level (β2-m or B2M). Higher β2-m indicates faster likelihood of relapse (and worse survival). Mine has always been low, and that’s a positive prognostic indicator (it’s the basis for staging the disease, which is why mine is always “stage 1” despite all the grief). I have plenty of negative prognostics too: the genetics of my myeloma are high risk (del17p); I get problematic levels of bone damage; it’s proved stubborn to treat; and I’ve got through a lot of lines of treatment… But despite all that, it’s probably going to continue to be slow. And slow, when it’s in retreat, is a very good thing!

Categories Uncategorized Tags

Inconclusive

The wind is low. The birds will sing, that you are part of everything. Dear Prudence, won’t you open up your eyes?
Dear Prudence – The Beatles *

… KFLC = 436 @ 6th June … 368 @ 24th May …

If you want just the short update here, it’s extremely simple: I’m still taking my chemo. I’m feeling much better than a month ago, though still pretty fragile. But while I’m still able to pop my pills, we are at least in some kind of rhythm at last. I daren’t do much for fear of provoking another crisis and disrupting my treatment plan again. For it would be pretty disastrous if that were to happen again now. So, I’m living quietly, cautiously. It’s a bit dull, and quite frustrating, but it is leagues better than my quality of life for most of the year so far. Barring any major drama, I’m hoping I will continue like this – popping pills and laying low – until the end of August.

What follows may be of interest to some… though there’s a possibility it is entirely DEX talk.

My myeloma is only measurable through light chains. Most people’s myeloma is also measurable through Ig paraproteins. It’s mostly a nerdy distinction – only relevant to us patients as we swap statistics. But it does have a couple of real world consequences for the experience of being treated for, and living with, the disease. The light chain (“SFLC”) test is very volatile. You could test today, and repeat tomorrow, and get a significantly different result. It jumps about. It’s noisy data. Added to this is the complication that light chain tests take several days. So one is always working with old data. We never know the situation as of now. (If one had Ig paraproteins, detectable via a “SPEP” test, one would have neither of these issues.)

My myeloma is also, I’ve learned as I’ve lived with it, slow, stubborn and indecisive. Some people have a cycle or two of chemo and their numbers plummet. Not me. This isn’t necessarily a bad thing – the prof told me long ago that some myelomas are faster moving than others, but faster on the way down can equal faster on the way up too. And overall, if he’s right (and I believe he is), then I’m more than happy to have slow-to-remit, if the pay off is, as it has seemed to be, slow-to-relapse.

But, it does make it frustrating to live with. Only 3 weeks ago, armed with my results from two cycles of treatment (and a month out of treatment while I spluttered with infection), one of my consultants, was talking pessimistically about abandoning my chemo entirely, on the basis that it wasn’t really working. We’d been going for 4 months, and my light chains had dropped from 750 to 550 – a response which merely qualifies as “stable disease”. All that grief, for not much result! He was seriously exploring with  me whether or not to simply rush me to transplant.

Twelve days later, with one more result available, and sitting with my other consultant, we were in much more optimistic mood. (For reasons I can’t be bothered to explain, I’ve managed to get myself in the complicated situation of being under the care of two experts at once, right now.) Now the headline was 368, which, being a >50% reduction from our January “baseline”, counted as “Partial Response” (“PR”). He was telling me that emerging evidence suggests ixazomib’s response profile may be slower at the start than some other treatments. That, combined with my myeloma’s known stubbornness… would all explain why it was just taking time. But finally, 3 cycles in, it appears it is responding. This narrative ties in nicely with the fact that I’ve been feeling a lot better. And it puts us back on the pathway of continuing my chemo regime until the end of August.

So, it would have been nice, when the next result came in, for it to confirm this trend, to back up this story, to give us a bit more certainty. But here’s the bit where my personal variant of myeloma does what it always does: fails to be conclusive. It’s foolish to await a light chain test with a number in one’s head. Foolish, but inevitable. The number in my head most certainly was not 468. That is a jump back up, which no longer even qualifies as a “response”. I suppose, having lived with it so long now, having had so so many inconclusive results, I should really have anticipated this. Instead, I found myself thrown back in to uncertainty. Is the chemo even working?

I’ve calmed down again now. Despite the noisy data, one thing we can say with absolute confidence is that all three cycles of chemo I have completed so far, have finished with fewer light chains than they started. In that sense, the chemo is most certainly working, and we should clearly carry on. (I’m probably tempting fate by saying this… and cycle 4 will inconclusively move in the other direction. I really wouldn’t put it beyond my myeloma to do that.)

So… a lot of angst later for me, and we are where we were already – popping pills and laying low. Mentally, though, it’s one hell of an endless ordeal.

* I could probably do with a bit of Pru Farrow’s meditative zeal, right now.
Categories Uncategorized Tags

Running

In through a doorway she brings me white gold and pearls stolen from the sea
Running To Stand Still – U2

Baseline … KFLC = 750 … κ/λ = 141 … Hb = 10.0 … Neutros = 1.3 … Plasma = 60% … 

So, two trips to hospital today. First to get stabbed. Second to get poisoned. (i.e. blood tests and prescriptions.)

My blood counts have deteriorated. Light chains and κ/λ ratio are both up, and my haemoglobin is down. My anaemia is getting more severe (and I don’t expect the drugs to help, in the short term).

I’m pretty alarmed to find that in my bone marrow biopsy 60% of the cells are plasma. If I didn’t have myeloma, it should be <5%. More than half of my bone marrow is myeloma. Yuk. No wonder my bones ache, my blood counts are lousy and I don’t feel great. (It’s also a substantially worse state of affairs than when I was first diagnosed, and this result would be a sufficient reason, in and of itself, to trigger treatment.)

But regardless of the blood counts and level of plasma infiltration, my bone pain is getting worse by the day. I’ve had to increase my doses of both oxycodone and codeine, to try to keep it at bay.

It’s pretty clear we need to get started.

Today is Cycle 1, Day 1. I’ve passed all the tests. Get set. And, we’re off. The finishing line, for this first part of the treatment will be late May, or mid July, depending on how I get on.

Here’s my typical weekly medication (I made a chart so I don’t forget to take things!)

And here, in 3D …

I’ve already taken my first load of DEX … a long night beckons …

Countdown

I guess there is no one to blame. We’re leaving ground. Will things ever be the same again?
The Final Countdown – Europe *

T minus 10, 9, 8,  7, ignition system started …

I’ve had a fair torrent of messages, recently, which has been lovely. Tough too, sometimes, because talking about it makes it real. But lovely, mostly, because I know so many wonderful people. Thank you all, for all your kind words and thoughts. Of course it is real every day, mostly in my ribs, but it is real in a more profound way when I realise how many other people are affected by my lil’ ol’ ‘eloma an’ me.

I don’t want to overload you with updates every time anyone sticks a needle in me. But right now, if I leave it long, things get out of hand. Questions get asked. So, here it is. I’ll keep this reasonably brief.

The BoMB is done. Yes it hurt. Yes, I feel the need to gross you out with a couple of photos. Most importantly, it is done, and I don’t have to face that experience again until somewhere much later in the year.

Also done, this Monday, is an echo-cardiogram. That’s the one that is disturbingly like having a pregnancy ultrasound scan. (I’ve had all these tests before. I’m a seasoned pro NHS consumer. Might as well get your money’s worth.) I didn’t see whether my ‘eloma is a boy or a girl. I could call it crude (genital) names of either gender, so maybe it doesn’t matter.

And yesterday, a PET/CT scan. Down in the basement. They stick something radioactive in. Then I lie in a darkened room for an hour while it spreads round my veins. I try to alleviate the boredom by reading, but apparently that would cause all the radioactive stuff to congregate in the eye muscles. Presumably it would lead to cool-looking-but-useless images on the scanner. I am admonished by a nurse, and so I have to shut my eyes instead. (Lie back and think of Europe.) Then, before the scan, I am required to pee. I guess this avoids a great big glowing bladder image ruining everything. There’s a special designated radioactive toilet. Have you ever peed in a room with a radioactivity symbol on the door? I’m padding this anecdote out with the amusing details because the scan itself is dull.

Finally, today a lung function test. Puffing in a tube. Not much to report. Lung medicine is one of the many disciplines in which King’s is world class. But the waiting room in the chest unit is forlorn. A smell of stale smoky breath. Lung disease is treated by society as a consequence of behaviour: a punishment. Blood cancer, by contrast, is romanticised: clean, innocent. **

“What can you say about a twenty-five-year-old girl who died? That she was beautiful. And Brilliant. That she loved Mozart and Bach. And the Beatles. And me.” 
Love Story – Erich Segal 

There’s not much fair about that distinction. It’s all disease. And we’re none of us blameless. Still, the chest unit always makes me grateful that I am not required to shoulder the burden of responsibility for my predicament. It’s bad enough living with the disease, without the guilt.

“Cycle 1 Day 1” is set for next Wednesday. Then the real pill popping begins. Those who see me out and about should anticipate that I might not be at my best on Thursdays, for the foreseeable future.

The little red sausage is a c.1cm piece of my spine,
removed with a “trephine” (like a surgical apple corer).
The other outputs of the BoMB.
Sucked right out from my deep inside
Before you play ‘spot the willy’, I’ll remind you this is an image of a heart.
And actually not mine, but one I found online.
I’m not supple enough to have snapped any screenshots during my scan
The exciting stuff enters the room
The exciting stuff going in
The exciting stuff going out


* This song fails many of the normal criteria for inclusion in Radio M. It’s frankly crass. It qualifies on nostalgia grounds alone, reminding me vividly of the train trip to Paris, when I was 13, on a school exchange. Bad Swedish pop/rock is a dirty secret of mine. One of these days, I’ll find a space here for Ace of Base. Maybe Roxette. Probably not Abba.

** For more on the culture surrounding disease, read ‘Illness as Metaphor’, by Susan Sontag. She observes leukaemia’s role as the ultimately blameless disease (a position previously held by tuberculosis, until tb was re-evaluated once it had been discovered to be infectious). All disease is tainted by some assumption that disease, behaviour and character are intertwined. It’s easier to perceive illness as consequent on behaviour – risk taking, lifestyle, choices. And implicitly it enables us to take credit for wellness, to distance ourselves by something more than chance. Victim blaming is very persuasive. Sontag also coined the term “Kingdom of the Sick”: an expression beloved by me, and also by my friend Wendy, who died last year, and whom I miss sorely.

Inconclusion

How many times can we put ourselves through this war, like all the lovers that have been here before? How many times can we watch this fade into nothing?
Fade to nothing – Rag’n’Bone Man

Checkup … KFLC = 679 … κ/λ = 92 … Hb = 10.4 …

Another set of frankly inconclusive blood results. The κ/λ ratio is up, but not (yet?) above the threshold. My light chains are up more significantly – their highest level since 2012 – but this potentially means less than the ratio. My anaemia is a bit worse, but not yet disastrous. It seems my mm doesn’t want to make the choice about when to start treatment.

I can’t help wondering, given my myeloma’s behaviour, how long it was like this before I was diagnosed. As of next month, my “relapse” will have lasted longer than my post transplant “remission” (28 months remission, 27 months relapse… and counting). If my mm is this ponderous, it seems unlikely that it emerged from nothing to nearly kill me in just 2 or 3 years. I think I might have had it for even longer than I’ve previously assumed.

In clinic, yet another doctor. Since I moved from my regular slot with DrC, I’ve not seen the same doctor twice. This is a simple consequence of pressure and stretched budgets – the clinic barely keeps its appointments; trying to match patients to doctors would tip it over the edge. I’m sure tory ministers don’t take this into account as they squeeze out “efficiency”. But my dignity is sacrificed by the repetitive need to explain my symptoms, the endless investigations, and the looming treatment decision. My grumblings lead to a visit from the head consultant. And the upshot is this: the preferred treatment for me is a clinical trial (Myeloma XII) that is only just about to begin at Kings. Once it’s ready, they’ll want me on it. No more waiting on my blood results: the cumulative risk of kidney damage meaning it’s not safe to sit indefinitely in the current position. So in the end, it seems, the trigger to treat will be a drug protocol, not my health. Funny thing, life.

The clinical trial could involve as much as 10 months of chemo, sct and more chemo, depending on my response and how I get “randomised”. It’s a big journey to set out on, and will mess up much of 2018. Whether I can string the start date along another 2 or 3 months, who knows.

In a side plot, I’ve been having my kidneys investigated for potential disease or stones. The latest instalment was CT scans, and I’m hoping for the all clear. The pain appears to have passed – along, I’m assuming, with the stones. The consultant here says if the CT is clear, she’ll discharge me. If I don’t get an all clear, the next investigation would involve a camera into my bladder, and I don’t like the thought of how they’d get it in there. So, here’s hoping.

The digested read of all this is simple: it is pretty much inevitable I will be back on chemo very soon now. That doesn’t exactly fill me with joy. But for now, the watch and wait continues. I’m doing my best not to care or obsess; to live each day; not to waste the time I have; to keep positive. It’s hard.

Damocles

I wish I could be like a bird in the sky. How sweet it would be if I found I could fly. I’d soar to the sun and look down at the sea, and I’d sing ‘cos I’d know how it feels to be free
I wish I knew how it would feel to be free – Nina Simone (composed by Billy Taylor and Dick Dallas)

Check up… KFLC 196 … κ/λ = 30.6 … Hb = 13.3 … Neutros = 1.52 …

I have spent the last five weeks trying not to focus on my next clinic appointment. The trend in my light chains seems all too predictable, and the aching in my ribs more persistent.

This week’s appointment was never going to be straightforward. Dr Crapulous had booked it on an off-week, and my blood tests had been posted to a previous appointment. The phlebotomy department ace their part of the test. But sure enough, when I arrive in the clinic, my name appears on no appointment list. My clinical trial coordinator comes to speak with me. I explain that DrC was insistent, last time, that today would be OK.
“‘I’m always here’, he said,” says I.
She gives me one of those NHS-sympathetic looks.
“He’s on annual leave”, she tells me.

So they put me on the end of someone else’s appointments list. A doctor I’ve never seen before. And then I wait. After two hours, my myeloma clinical nurse specialist walks past me.
“You’ve been waiting a very long time”, he says.
I grimace.
“Yes, and I have to go in ten minutes to collect my son from nursery”, I reply. (Gyles’ violin lesson, the other regular fixture in my Friday morning calendar, has long ago been missed.)
“Could you at least print out my blood results?”

So that’s what we do, and I don’t see the doctor at all.

The print out comes as a bit of a surprise. My neutrophils, while still low, are up a little – certainly no greater cause for concern. My haemoglobin is normal. And much to my surprise, my light chain levels are completely unmoved from five weeks previous. Though the κ/λ has deteriorated, because the λ figure has dropped, which could be ominous, or could be meaningless.

I’d expected my light chains to be up quite a bit, and for DrC (I do so hope he is having a nice holiday) to start further “investigations”. I’ve been steeling myself to resist being sent for a BoMB, and to demand an MRI and/or CAT of my ribs. Suddenly I’m unsure if I should do either, and have no doctor to guide me. And with no doctor to say if I should come back in 4 weeks or 8 (well, 5 or 7 actually, since I clearly need to get back into the fortnightly clinic pattern), I  leave the clinic without another appointment set up, which is frankly wierd (and completely unprecedented – in 4 years I have never not had a follow up appointment booked.)

The Sword of Damocles* swings filipendulously above my head.

* In the original Greek telling, the Sword of Damocles represents the ever present peril facing those in positiongs of power. It is something of a subtle shift that it has come to symbolize, in a modern setting, the sense of foreboding caused by any precarious situation.

Irrational

This dog got bit on a leg. He got a really big chip on a leg. Don’t want to get out of bed. Unless he feels like it’s justified
Mr Noah – Panda Bear

Checkup… KFLC = 96 … κ/λ = 15.2 …

My most recent check up was simultaneous with the massacre in Tunisia. This fact makes me feel a little uncomfortable dwelling on myself. And I know others, too, much closer to home, are dealing with challenges no less daunting than mine. I’ve hesitated to write this post. But I want DialM to be a faithful transcript of my myeloma, and regardless of what else is happening, my hospital appointments don’t stop. So, take or leave what follows. I can’t promise you’ll learn much! And sorry if it is a little complicated.

On this Friday morning, for the first time in a long time, the consultant doesn’t just tell me that my blood test results are all good. For the last few months, even as my kappa light chains (KFLC) have crept up, he’s considered it no real cause for alarm, because the ratio (κ/λ) has been static. At low levels, this is significant because there are reasons other than myeloma which could result in raised light chains (particularly, kidney function). But my myeloma only produces one type of light chain (kappas, κ), whereas any other cause would affect both types (kappas and lambdas, κ and λ). While the ratio is static (even though it is abnormal) that is indicative that not much is happening myelomawise. This time, though, the ratio (for which normal would be 0.26 < κ/λ < 1.65) has jumped from 6.5 to 15.2. I’m not sure what this means – and nor is the consultant – because it is largely due to my lambda levels dropping. Active myeloma would certainly cause that by crowding lambda producing cells out, but I’d expect to see things like anaemia and neutropenia developing simultaneously, which hasn’t happened (yet). And anyway my kappa levels haven’t spiked.

In fact, with a few days hindsight, I think it is highly likely this is just an erratic result, but I don’t reach that conclusion until after the consultant has told me
“on its own, this isn’t sufficient to be considered disease progression”
Which triggers a conversation about what would be considered progression. The answer, in a nutshell, will be when the difference between my kappa and lambda counts has increased by +100 from the minimum I achieved after SCT, and that will be when my KFLC = c.160. Some way to go. However, for the first time the consultant acknowledges that, with occasional exceptions, my KFLC score has been increasing slowly for some months. I face the reality, again, that it is a matter of when, not if, my myeloma progresses. How long might that be? He doesn’t think it will come in a jump. I can’t help making mental estimates of how fast the KFLC score is moving. My most negative estimate is about +10 each two months, of late. At that rate, I have a year. Or, taking a more optimistic view, it has increased +40 in the two and a bit years since my SCT. At that rate, I have 3 years.

So… hold the front page… my myeloma will probably be back somewhere between 1 and 3 years from now. But then, ever since we knew my SCT had been successful, we knew that, really. Can’t say I’ve enjoyed being reminded, though.

It’s a burden, being responsible for making good on remission. How can I ever live up to it? How much must I make, of every moment? And if I have a mundane day, an unproductive day, a miserable day, what kind of betrayal is that? These thoughts can be quite debilitating. Knowing life is finite, and hard earned, and yet still being miserable. That’s a toxic combination. For a while, last year, I was really very down.

Rare opportunity for a maths joke…

So it is good that the other thing that is creeping up, is the frequency with which people tell me how well I look. In part, this is a consequence, I think, of adopting a somewhat cavalier attitude, to life, to responsibilities, to myeloma. I’ve excused myself, for now, from the responsibility to take it all seriously. I’m not trying too hard to make the most of it. I live under the shadow of a ratio. I’m permitting myself to be a little more irrational, while I can.

Training

My requirements on Monday were not restricted to signing my life away. Some people work out before a marathon, my pre marathon training is something else all together. In order for Transplant Number 2 to go ahead, I had to have a collection of tests done, the purpose of which, I think, was really for me to get used to the grounds of St Bartholomew’s Hospital and not for the Medically Trained People to see if my heart, lungs and kidneys are tickety-boo. Okay, maybe checking that my body is up to the challenge of an allogeneic transplant had a lot to do with it, but the morning meant five reception areas and their accompanying waiting areas, four medical technicians, one nursing assistant, one doctor, a room of Clinical Nurse Specialists and one trip to the loo. Essentially, I went into a lot of rooms. For me, it significant energy usage and exploration. I have somewhat expertly denoted this on the map below, each dot represents an area requiring my attention. It does not include the lift journey that came to a sudden halt inducing panic among everybody in it that the day out to the hospital had taken a sinister turn.

  Medically, I was required to have an echo, an ECG, a plethora of blood tests, a urine test and something called a spirometry test, which included something called a gas transfer. Sounds exciting right? Just a walk in a maze.

The blood tests, all eight vials of the stuff was straight forward. It’s as familiar to me as cleaning behind my ears. Part of me would like to have had the chance to have caught a Sexually Transmitted Disease since my last transplant, but alas, the bald head, lack of socialising and general lack of any resemblance of physical attraction put paid to that, and still, the hospital was still required to check my blood was ‘clean’ as it were. the hospital tested my paraprotein post transplant during my last transplant, and thus, I doubt I have nothing to worry about with these set of tests. My paraprotein was less than five by the way, which the doctor said was fine. I should add that when I say I do not worry about these results, what I mean is that I worry about them the least. My superstition has gone absolutely nowhere.

The blood tests, which were the third test I had done on that windy day were immediately followed by me urinating into a cup and then me leaving said cup on a shelf in a toilet. Again, I am used to peeing, so this was no great shakes. 

Before I gave away my bodily fluids, two Medically Trained People looked at my heart. As the hospital is in a state of change, the tests were not done in the same building. The echo took place in a building that resembled the set of 28 Days Later (Big Sister is there as I type and described this building as a “dump”), whilst the ECG on the other end of the refurbishment scale occurred in a room with newly painted walls and a chatty technician. In defence of the technician doing the echo, it is probably difficult to be chatty when he was required to lift up my left breast like he was opening a cat flap. Apart from that specific indignity, I could have fallen asleep whilst he pushed the ultrasound into my chest and throat. I did arrive at the hospital at 09:00hrs after all, so by 11:00hrs, I I was waning. The sleepiness was not due to me likening an echo to a massage. To be doubly clear, I did not find a stranger touching my skin relaxing. I have had an echo before, as well as an ECG, so Monday’s tests were nothing out of the ordinary.  I am surprised I have managed to write a paragraph about them.

I do find it strange that the tests Bart’s require differ from those I had to do pre Transplant Number 1.  It’s easy to assume that two hospitals in the NHS, two miles apart would approach a transplant in the same way. You would be wrong. In March, I had neither test for my heart, instead I was placed in a machine and pretended I was a human toastie.  I also had a tiresome test on my kidneys, which in the City is replaced by a simple urine sample. One thing I have not required before is a the test on my lungs, also known as the spirometry test. In My Myeloma life, my lungs have never been tested, unless you count the peak flow meter for the return of my asthma.  
On the fourth floor of the King George V Wing, I went to a reception medically entitled ‘Lung Function’ and proceeded to go through a few doors via an irate woman lacking in manners, to a funny looking machine that required me to put a peg on my nose and blow. I blew a lot. The woman overseeing the test would have made a great motivational speaker. “Keep going, keep going, you’re doing great, keep going. Wonderful.” In fact, maybe I just need her around to help me out of bed everyday… Of all the tests I have ever had, this was probably the least intrusive. Like all the tests before it on Monday, it was nothing to write home about, except it is,  because I had never had to do it before. In my days of same old, same old, it was noteworthy. Plus, having a peg on my nose whilst placing my mouth about a large cylinder was a sight to be seen. A sight to be seen. And, it beats telling you what Bruce and I got up to on the sofa yesterday, because you can be damn sure it is exactly the same as what I did last week/month/year.

  
As with everything, I now get to wait for the results to be processed and reviewed and hope that everything really is tickety boo. Something big is afoot.

EJB x

Tres meses

No me has llamado, estoy desesperado. Son muchas lunas las que te he llorado *
Rayando el sol – Maná

Check up… KFLC 82 … Hb 13.7 … Neutros 2.06 … PLT 212 … Corrected calcium 2.14 …

12 weeks between hospital visits! (Not strictly true: I had an abortive wait in the phlebotomy dept for a set of blood tests that hadn’t been properly ordered on the computer system. And I had an afternoon in A&E with Ben after a football accident.)

I deliberately left DialM quiet for the whole period, so you could share the experience. (I had to restrain myself a little.) I don’t know if you’ve noticed the absence? Were you wondering about me? Or had you stopped thinking about it? I’d like to say I stopped thinking about it myself, but that would be a fat lie. My spine always reminds me, as does my ongoing calcium deficiency. And there was a wobble a couple of weeks ago when I caught the tail end of a child’s infection and had several days of fatigue (and presumably anaemia) as a consequence. However, these are but small grievances.

My light chain score is up a little today. I do wish it would go down again a bit next time! It’s not really a trend though since the κ/λ ratio is steady at around 6.5. I can’t be bothered to explain that to you. If you have mm, you’ll know what this means. If not, you’ll have to do your own research! Or just let me paraphrase for you: “This result is suggestive of a summer holiday”.

I’m signed off for another 2 months. I’m realising, as time goes by, that these check-ups form planning horizons in my life. I can just about make plans 2 appointments ahead, but that is really all. It is looking pretty promising, given my results today, that things will still be OK at the end of June. In which case I get to have a summer holiday. But I can’t make firm plans further out than that. I’d really like to take the kids travelling for a bit at the end of the year, but I won’t know if that’s an option until after check-ups somewhere in early September and early November, or thereabouts.

It is strange to have to plan all my choices around my light chains. But such is my lot. If things are still good in February, then I want to get a puppy!

What it actually says on my results print out…

* You haven’t called; I’m getting desperate. Many moons I’ve been missing you

Reaching for the sun – Maná

Groundhog Day

Even though I have had cancer for, like, forever, I am still required to have the occasional bone marrow biopsy. Even though I have had cancer for, like, forever, the thought of a bone marrow biopsy fills me with dread and impending doom. If in fact, one can grammatically be full of impending doom. This morning, I woke up full of impending doom because I knew that at 09:00hrs, I would be forced into lying in a fetal position to allow for a bone marrow biopsy. I had been through an almost identical day before, for today was the Pre Transplant Tests Day. 

First things first, getting up early enough to be in the hospital before 09:00hrs, was not a pleasant experience.  I actually saw commuters, the nine to fivers. What a way to make a living. Before I had reached the hospital therefore, my day had started badly for I should have been woken up by Housemate and his dog and not by my alarm clock. Alarm clocks are for healthy people and not those who take a Diazapam before bedtime. I also knew that I faced a day of a biopsy, a kidney test known as a GFR Measurement, a Cardiac Scan and lots and lots of needles.  

The biopsy was just like the others before it, summed up with one simply word ‘painful’. This one however, had added blood and I ended up bleeding all over what looked like a puppy training pad, the waistband of my jeans and a little bit of the bed. I took a photograph of the latter to prove that I am not exaggerating.



Over time, I have learnt that the pain of having somebody remove a wee bit of bone and it’s juices from my body is lessened by having a friendly face to look at, that will talk to me whilst the dreaded deed is done. Today was no different and I had the addition of said person allowing me to squeeze his hand whilst I was pulling labour like faces and wincing. It all helped.

Following that little procedure, we endured a 85 minutes wait, as I waited for the next appointment, known as the GFR Measurement. Google tells me this stands for glomerular filtration rate, which is, apparently, ‘the best test to measure your level of kidney function and determine your level of kidney disease’. In practice, the test  was a right royal faff. It required my  companion and me to go back to the Insitutue of Nuclear Medicine five times over the course of the day to allow some Medically Trained People to take my blood after they had put some sort of potion into my body. Plus, two expertly administered cannulas in each arm. Due to a desire to protect my favourite vein, I opted to have the second cannula in my left hand, which meant I spent two hours sporting what looked like a mitt on my hand. Needless to say, doing up my trousers was quite troublesome. 

The first visit involved the potion being administered along with your bog standard flush. It looked very much like the photograph below.



I then had to wait for two hours before returning to the fifth floor of the magical tower that is University College Hospital, where a Medically Trained Person took my blood. I then returned an hour later when another MTP took my blood. I then returned an hour after that when another MTP took my blood. It was like Groundhog Day, with the added bonus of blood. My blood.



The whole thing was over by 16:15hrs, so let us all keep our fingers crossed that the results show a reasonable renal function. I really need something else to boast about.

Somewhere in the middle all of that nonsense, I had the cardiac test. I think this also required some sort of potion entering my body, but there was so much going into my body, there is a chance I missed it. These days, my motto has to be ‘Just Let Them Get On With It’. 

Even though I lost track of what was going into my body (an excuse for obesity if ever I have heard one), I did not miss having to lie on a flat mental bed whilst a machine took some expensive images of my heart for 15 minutes. I was also attached to an ECG machine. I must not forget that part if you are to get a clear picture of just how exhausting my day has been. I likened the machine itself to sticking one’s breasts in an upside down photocopier for laughs. Again, I documented the experience.





As is evident from the photographs, I found the experience quite sensual, what with the Velcro straps and all. It was sensual right up until the point when I had to sit up, when it became masochistic, well, if I enjoyed it. I did not. My back, along with the small hole in it, definitely did not enjoy the process of sitting up. I also did not enjoy the reminder that I still, after all this time and treatment, cannot lie on a flat mental surface and resurface without experiencing pain.

That was my day. Not all of it you understand, we need some secrets, but it pretty much covers what happened between the hours of 08:00 and 17:00. It was all too, too much for me and at 19:00hrs, I can confirm that I am in need and indeed, in my bed.

It would be most remiss of me not to mention that my day would have been nigh on impossible had I not had somebody to share the experience with me, hold my hand when I needed him to and who entertained me between blood samples. Indeed, his day, selflessly started before mine did, as he arrived at my house before my departure and accompanied home once it was all done. Even though I am tired and my back feels, as the the late and very great Mr Griffiths would say  like it has been kicked by a horse, I have a warm and somewhat fuzzy feeling in my stomach. I take this as both fondness and gratitude. Of course, it could just be because  we discovered the quiet solitude of Cancer Centre’s roof garden and not because my friend did something very nice for me. It’s hard to tell, I am full of unknown potions.





Now, let us all hope that this was worth it and in 15 days time, I’ll be on the verge of shitting my pants.

EJB x

Annex A: I ❤️ the NHS. You may be interested to know that during my day, I was treated by two nurses, four nursing assistants/technicians and saw two receptionists, not to mention the other people I saw and spoke to along the way. My tests also need to go somewhere once they are done and I there are several, faceless people behind the scenes including the people who will process my blood samples, contributing towards my wellbeing. What a service! It makes me quite proud. Also, those people in the labs, testing our bloods, always need a little shout out.