Ausente

Welcome to Tijuana. Con el coyote no hay aduana *
Welcome to Tijuana - Manu Chao

(con permiso)

We've packed our bags, and ordered our affairs. Today we  five sling our backpacks over our shoulders and take off on an adventure for a couple of months. To do so, aside from the travel planning itself, we've had to negotiate our way out of work and school, and make surprisingly many practical arrangements for our own absence. Getting to this point of almost-readiness has been somewhat frantic, because we only made the decision at short notice. With who-knows-what looming, our focus is sharp on living the life we have.

We're not going travelling because of myeloma. We're going because of wonderlust, our decades-old fixation with exploring the new. We're going because we want the boys to share in our passion, and to grow up responsible, globally aware, young people. We're going because we believe that time spent together, and diverse experiences and stimuli, are an education in their own right. We're going because it's fun.

Sure, we're going right now because of myeloma - because we've learned to take our chances when we can. We're acting in good faith, trusting that the next 2 months is still safe travel time for us.

I had my bloods taken this week, and an appointment in clinic on Friday. I've been unsure what to expect. My last set of (rubbish) results were the trigger to planning this trip, but as soon as we'd made the decision, I had self-doubts. Maybe my next test results will be better than expected! Maybe there's no rush! (A warped variant of impostor syndrome?) This has been followed by increasing sensations, over the ensuing weeks, of achy ribs and shortness of breath. Maybe things are accelerating! Maybe it's too late!

In clinic, I report my symptoms.
"When did you start feeling these symptoms?" asks Dr Crapulous.
"Just after you told me my myeloma is probably coming back", I reply.

In a clear demonstration that the relentless advance of science does not apply to Kings' phlebotomy department, it transpires that they can no longer get light chain assay results back within the week. Asking too much, of course, to expect anyone to have notified me of this at a relevant juncture. So I'm in the silly situation of a clinic appointment without the crucial results. We smile at each other slightly pointlessly across the desk. I ask DrC for a definitive answer of how long the test does take so I can schedule my visits accordingly in future. He calls the labs, only to be told he has dialled the wrong number because light chain assays are not part of haematology. Which is news to both DrC and me: have we all been in the wrong clinic all these years?

Sometimes it is all rather Kafkaesque in the NHS. They've now defined a process whereby I must make my clinic appointment via the receptionist, but get my blood tests ordered directly by the consultant. I leave the consultation to go to the front desk, while my highly qualified clinical trial oncologist sits waiting until I can return with a consultation date, upon which he can book the blood tests to precede it, at an arbitrary interval because the labs can't confirm what branch of medicine we are in let alone when they might be able to get the results back to us. I observe to DrC that there appear to be some inefficiencies inherent in the way things are currently set up.

In the meantime, we have to read the tea leaves of my blood count, for clues to my health. Nothing much to report. Notably I am not anaemic: the shortness of breath is either hypochondria or lack of fitness. With nothing more to go on, my ribs remain an enigma. It seems likely that, even if my light chains are creeping up, they are still a long way from being problematic. And therefore my next appointment can wait 'til Feb, and the trip is on. I can look forward to learning my light chain score, by email, somewhere on the road.

¡Nos vamos! ¡Hasta la proxima!

* "Con el coyote no hay aduana" = lit. "With the coyote, there's no customs"; "coyote" being Central American slang for people smuggler. We're not going to Tijuana: done that before; certainly not somewhere you need to go twice. And our paperwork is thoroughly in order.

My abiding memory of crossing the border from Tijuana to San Diego was having a large bag of fresh cherries confiscated from us by a US customs official. We'd lovingly picked them (cherry-picked them, indeed), only minutes before, so we were a little loth to see them go. My sister asked if we could eat a few, before proceeding. "It's too late for that" came the reply, with all the friendliness one is accustomed to from US border staff, as our beautiful cherries dropped into the bin.

Seething

You shut your mouth. How can you say I go about things the wrong way. I am human and I need to be loved, just like everybody else does
How Soon Is Now? - The Smiths

<rant>

I am minding my own business when facebook offers me:

15 Tips For Living With A Chronic Illness Like Multiple Myeloma

I scan it idly (you don't need to) until I reach #4:

"This illness is in your life to teach you something. There is a reason you are here. There is something that this experience can teach you that you apparently need to learn."

Stop the tape. Quick trip to foot of stairs. Channel my inner Tim Minchin:
"Wow. That's a good point. Let me think for a bit. Oh wait, my mistake, that's absolute bullshit." *

It's the same as when people say (and believe me, they do) that getting ill is all part of "God's plan". What kind of God, and what kind of plan, exactly, that might leave my children fatherless? And just what is it, in which I was so deficient, that I needed myeloma, in order to learn?

When someone gets knocked down and killed, is that "God's plan"? When someone is born into abject poverty, is that "God's plan"? If you smoke 30 a day and live to 110, is that "God's plan", or is it because you were so wise and wonderful you really had nothing you needed to learn through adversity? I'm guessing its easier to see these plans of God's from the vantage point of affluent good health.

Or... "God only gives you what you can handle". ** Ah, so it's my fortitude that is to blame. Other people think "I don't think I could bear it, if I had cancer". But that's OK, because if they can't handle it, they won't get it, right?

No it doesn't.

My beef here is not with God (we're on quite good terms right now, I think), but with the stupid, egotistical ways people frame illness. Really, these kind of sentiments are the self centred indulgences of the healthy and inconsiderate.

Yes; I've learnt a lot since I got mm. In some peculiar ways, the experience has added to me. But that does not justify it, or legitimise it. It doesn't explain why it happened to me. Yes; I have found amazing reserves of strength over the last few years. But that was because I had to, not because I was any better prepared for this than anyone else would be.

I cannot convey, strongly enough, how much I hate this kind of comment: this thoughtless narcissism that permits people to believe that the difference between us - the sick and the healthy - is of some significance; that there's a reason I'm ill, and by implication, a reason they're not.

</rant>

* If you've never heard Tim Minchin's "Storm", I cannot recommend it highly enough. (Some strong language.)


** "God only gives you..." comes, indirectly, from 1 Corinthians 10:13, where Paul is talking about temptation: specifically idolatory. But people glibly change the context.

Reality bites

Can you feel it, see it, hear it today? If you can't then it doesn't matter anyway
Epic - Faith No More

Check up ... KFLC = 135 ...

I was more apprehensive than normal about this month's visit to the haematology clinic. Either my results would have returned to "normal", or they would not.

I was right to be worried, unfortunately. My light chains are rising. My consultant warns me that I should expect that my next appointment will formally mark "progression". As recently as July I was predicting that
"my myeloma will probably be back somewhere between 1 and 3 years from now".
It appears that it will be very much at the early end of that estimate.

Progression will not immediately mean treatment. For that, I get the joy of waiting for symptoms (bone pain, most likely, or anaemia). But I'm now assuming that I will be back in treatment during 2016. This will likely take the form of either ongoing (indefinite) chemo, or another stem cell transplant. I absorb all this information feeling very glum, and walk home feeling incredibly alone.

Then I have the task of passing on the news - first to my Dad, who is looking after Lyndon for the day, and then to Marisa. As always, sharing the news is my least favourite job of all. The lowest and worst part of the whole experience, when I face up to the fact that my illness impacts many people. Writing it down for you is comparatively easy - though it has taken me 10 days to pluck up the courage.

Alpitude

Oh, you miss me, our love's in stereo. Isn't it finer in mono?
Vertigo - Mini Mansions

Fear not! I'm back... And the weird world of post-SCT strikes again

We visited Switzerland during the summer, and did a couple of trips up mountains. The first one was by cable car, up Schilthorn (setting for On Her Majesty's Secret Service), which is a just under 3,000m above sea level.

After we'd been at the top about an hour, I developed a headache, which intensified viciously, until I was reduced to sitting, my head in my hands, feeling thoroughly light-headed and nauseous. Upon descending again, I was violently sick (sorry, good burghers of Mürren), after which I felt fine.

The symptoms were disturbingly like altitude sickness; not something I've ever suffered before - and I've travelled at much higher altitudes (5,000m in Bolivia and Peru). To be honest, I didn't think it was possible to get sick as low as 3,000m, but upon looking it up I discover it can happen from 2,500m, especially if you are anaemic. I'm not anaemic right now, but maybe my body is not able to adapt quickly enough, as it used to be? I know it is not as resilient, post-SCT, and I'm guessing this is just another ramification of that.

I'm used by now, to discovering weird symptoms of post-SCT life. Sometimes a quick bit of googling confirms others have experienced the same, but searching "altitude sickness stem cell transplant" has provided no such reassurance. But then, on other occasions I experience things and only discover the same in others much later. For example: 2 years ago, I observed melphalan damage in my nails - but only this week did I finally read other people reporting the same (it was a conversation on Facebook, so I can't give you a link).

Maybe someone reading this will be able to share a similar experience to mine? Or maybe I'll never know. Nothing surprises me, any more, so I'll happily place the blame on the SCT,

I was a little nervous about going up any more mountains. But decided I'd have another go (the alternative was to permanently restrict myself to living low!). The next occasion, up Jungfraujoch - a few hundred metres higher - was fine. Maybe a short shock had done my body some good.

It was certainly worth it.

Oh, you know, honey, get your loving on the low. Don't you know you give me vertigo?
Vertigo - Mini Mansions

Mortalities

In the face of the Earth. In the manner of words. All reasons to breathe, all reasons to see. They are gone away again
Manner of Words - East India Youth

We're in the realm of death-literature here, which may not be your thing. As ever, on DialM, I know my audience is varied. No need to read on, unless you wish to...

Two things that have caught my attention in recent weeks:

Tom Lubbock got a brain tumour and died. His wife Marion Coutts wrote a book, The Iceberg, about her experience. She has also published a book of his diary, Until Further Notice I Am Alive, of which here is an extract. He was a writer, and the tumour progressively disrupted his speech. But I found his writing very insightful just for its observations on the experience of disease. Her interview on the radio was very interesting too - though I haven't read the books.

Paul Wolfson got early onset dementia. With his partner Lore, he recorded conversations of his experience and perspective. A programme based on these recordings was recently broadcast on Radio 4. It certainly made me think! Paul took his own life - a response to his own position, but not something I have empathy or comprehension of. My own experience is precisely the opposite: to fight for life. But in Lore's story, I found a lot of perception on the impact of disease on the other half, too often overlooked.

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.

3k

Light up, light up, as if you have a choice
Run - Snow Patrol

Sum, ergo curro (my contribution to updating Descartes)

To celebrate my continued good health, I ran 3k at 7am this morning. It felt good. Ben and Gyles came with me, and I'm pleased that my aching bones are still more than a match for the under 10s. My advantage will be short-lived, so I better take advantage of it while I can.

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

Right

And to history, we will say "We were right. We were right. We were right"
c.16th± - These New Puritans

...Hb 13.7...

Just a quickie. Was back in hospital last week for many many blood tests. The upshot of which is my anaemia is receding fast. I'm certain it was a mere side effect of the virus I had before Christmas, as I told them last time. (Patients 1, Doctors 0)

Reluctantly, I tell the consultant about the pain I am getting in my left hip. It has been getting quite bad. Inevitably this leads to an appointment for an X-ray - I just can't tear myself away from the hospital, can I. If I know my own body then the X-ray (which I had on Monday) will show nothing. But always better safe than sorry, with mm.

So, I'm not expecting a call when they've reviewed the X-ray. And I'm hoping not to go to the hospital again until April. 2 whole months away! Imagine!

Selfies

I searched out my companions, who were lost in crystal canyons. When the aimless blade of science slashed the pearly gates
Thrasher - Neil Young

A couple of interesting discussions about self-help/ support groups

This morning, I chance upon One to One on Radio 4, where Charlotte Smith is talking to Sarah O'Donoghue, about self help groups. Sarah's son Charlie died in an accident. Charlotte has a rare and potentially fatal incurable illness called Lymphangioleiomyomatosis (or LAM). Sarah's story really strikes me. She talks about the difference between "professionals" and people who have "been there". And about the space and strength that a support group can give. Upon going online to find you the link, I discover that this is the second of two programmes. In the first, Charlotte was talking with Gill Hollis, who set up a self help group for people with LAM. They are both well worth a listen - and chime with a few of the things I've talked about recently on DialM.

Charlotte Smith meets Gill Hollis
(One to One, Radio 4, 3/02/15)


Charlotte Smith meets Sarah O'Donoghue
(One to One, Radio 4, 10/02/15)

I'd like to say a big Thank You, at this stage, to Phil and Scotty, who set up the myeloma under50s group, which has been invaluable to me.

There's a bit of a "Why Don't You?" * element to all of this, of course. Support is a means to an end, not an end in itself. Time, now, to turn off the PC?

* For those not of my generation: "Why Don't You?" was a children's TV show in the 70s and 80s, with a theme song that asked "Why Don't You Just Switch Off Your Television Set and Go Out and Do Something Less Boring Instead?"

Live longer longer

I've been down the very road you're walking on. It doesn't have to be so dark and lonesome
It's only life - The Shins

This one's primarily for my friends in the club no-one wants to join!

Myeloma kicks like a donkey. Another myeloma-buddy, and fellow PADIMACer, Deborah Bone, died a few weeks ago, after getting a momentary "all clear" from her SCT, only to relapse very abruptly indeed. Horrific news, and my thoughts, first and foremost, are for her and for her family. But it is always hard not to take it personally, too, when one knows the same monster lurks in one's own plasma. Several other friends are in the process of relapse and retreatment; some of them having been diagnosed around the same time as me. So despite my own good current scores, it is hard to keep upbeat, on the dark, lonesome pathway of mm.

The consultants always talk about "quality of life". Which is fine, but what use is quality, if you don't have any quantity?

Today, while clearing out a few unpublished bits and bobs on DialM, I found a bookmarked link to something posted a couple of years ago on Gary Petersen's hugely positive "Myeloma Survival" blog: "The longer you live, the longer you live".

Gary took survival data from SEER and used it to calculate (death rates and) life expectancy at each year after diagnosis.

We all know the bad news up front. 23% died in the first year, in the data used, and average survival was <5yrs. Though it is quite old data now and I've seen more recent things saying yr1 mortality may be down to 10%.

But the good news is in the tail. Almost half (44%) of myeloma patients survived 5 years, and over a quarter (28%) survived 10. After 10 years, only 2.1% of people with myeloma were dying each year... the same as the proportion of the general population who die each year anyway. Though myeloma patients' relative mortality was more like 7% (2.1% as a proportion of the 28% who had made it that far).

Looking on this negatively, I could point out that the average 75 year old is less likely to die next year than that. But I choose to look positively.

If you have a 7% chance of dying each year, you will, on average (median), live another decade. So the headline is right - the longer you live, the longer you live. You have a 50:50 chance of surviving 5 years with mm. If you do that, you have a two thirds chance of making it to 10. (Having survived the treacherous first 2 years, this data says I already have well over 50% chance of making it from here to 10.) If you live 10 you have a 50:50 of surviving another 10. And presumably improving odds there-on. Until other factors come in to play, of course. The myeloma patient's objective being, ultimately, to die of something else. It's worth bearing in mind as well that not only does the data pre-date some recent treatments, but also that it doesn't factor for age. Given average age at diagnosis is c.70, (and 10% of diagnoses are in people aged 85+) one can assume that those surviving 10+ and 20+ years are disproportionately from the younger end.

This is no consolation at all, I recognise, to families of people who die. Nor is it much consolation to those for whom repeated treatments don't achieve good remission. Nor much consolation for any of us during periods of relapse - when we are at real, immediate, risk.

But it should massively cheer us up when we are in remission. Our life expectancy is actually increasing by the minute! Which is more than most people can claim. The survival curve for the population as a whole drops more steeply as time goes on, whereas (for a while) ours is at least curving the opposite way.

MYUK

You love us. Oh you love us. You love. You love us. You love us. You love
You love us - Manic Street Preachers

New Year's resolution: be more grateful

I got a very chirpy email from Myeloma UK today, listing some of their achievements in 2014, and plans for 2015, which will include 3 new clinical trials (what it's all about really, viewed from my perspective).

It seems like as good a moment as any to express my personal appreciation and gratitude for all the time and energy invested in improving cancer care. Without Myeloma UK - and others, including MacMillan / Cancer Research / Leukemia and Lymphoma Research - the outlook would be bleak indeed.

Thanks to everyone who gives time (and money). Thanks for the difference you make.

Empathy

I can help her out but I've got somewhere to be. And that's the very thing when your dealing with me
Ole Black 'N' Blue Eyes - The Fratellis

Says it more pithily than I ever could

Differentiation

Oh you pretty things, don't you know you're driving your Mamas and Papas insane 
Oh! you pretty things - David Bowie

I originally drafted this as part of all the Crapulous business, but never posted it. It came up in conversation last week, and I promised a friend I'd dig it out, polish it up a little, and post it.

A while ago I saw an interesting TED talk by a guy called Roni Zeiger, titled "Who is the real medical expert". (I was signposted there by the wonderful Myeloma Cinderella - who is just brilliant on myeloma science from a patient's point of view). In the presentation, Zeiger explores the impact of patient networks on knowledge and treatment. Watching it is 12 minutes well spent, if you are into that sort of thing.

And it rung a lot of bells. I recognised experiences of my own - such as learning about treatment side effects which my doctors largely ignore - or even flatly deny.

I was once told, in no uncertain terms, by a member of my care team who I respect and trust, that myeloma does not cause night-sweats. (That this was an issue in lymphoma, and implicitly that I had got muddled up in my googling.) Really? Tell that to all the people who get night sweats, me included, at one time or another.

I've had similar conversations about zometa, which medics frequently tell me does not cause flu-like side effects. Really? Patients know it does.

Most recently, the consultant - Dr Crapulous*, as it happens - is in a flap about my Hb levels, but I wonder if its just a lag from recent infection. When I blog it, I receive this, on social media, from a fellow traveller:
"looking back over my six years of lab work, whenever my Hb numbers were down and outside of a longer arc trend, it was tied to respiratory infections"
Patients know best? Well, maybe I'll wager an imaginary tenner with Dr Crapulous that my February test results are going to be just fine.

The conclusion, really, from Zeiger and me, is that patient networking can get to places that physicians alone cannot. That patients can identify side effects and correlations. And that patient experts will be a significant contributor to the development of medicine.

So next time I'm caught reading up or writing up on some detail of myeloma, its not just a symptom of my inner nerd, its an essential part of the progress of science. So there.

* Dr Crapulous is not my favourite. I do not hold warm memories of him. Because his "bedside manner" is non existent.
"We met once before, do you remember me?", he asks.
"Yes" I reply. An ultimately enigmatic statement

858 state

You know the facts, but you haven't got a clue about me
I Hang Suspended - Boo Radleys

Check up ... Hb =11.7 ... Neutros = 1.2 ... FLC = 55

After November's results, with my light chain scores creeping slowly tediously upwards, I wrote: "Here's hoping it is still less than 80, come January". So I am ecstatic that today's result, at 55, is the lowest score I have ever had. That's the good news.

But there's always a but. Today, it's my haemoglobin. If ">14.2"="normal" and "<8.0"="immediate transfusions", then 11.7 equals cause for concern, and an explanation of why I have been feeling so wasted. I am significantly anaemic, again. Haemoglobin is the vehicle for transporting oxygen round the body. Less Hb means less oxygen, pure and simple. In a way, I'm not so surprised, as I've been getting fatigue problems the last few weeks.

While my light chains remain low, this is a bit of a mystery. The consultant invites me to ask questions, but cheerfully adds
"Of course I don't have many answers"
It could theoretically mean my myeloma is back, but has stopped secreting light chains. But that is statistically unlikely, and I think I'd feel it in my bones by now if that was going on. So I'm not too worried.

Still, it means the consultant has booked me in for a massive array of blood tests in a few weeks time, with the promise that if my Hb drops below 11, I'll have to have a BoMB. If ever there was an incentive to eat lots of spinach, this is it. *

I'm hopeful that, having been completely side-swiped by the flu-cold bug that has been doing the rounds (two and a half weeks feeling shit), my blood counts are simply down because I'm run down. Interestingly, the last time my Hb dipped was in  June, when I was last laid up with a bug. My subjective experience is certainly that infections now knock me off my feet like they never did before, and leave a trail of fatigue behind them. Let's hope it is that, because the alternative would be worse.

As a result of feeling so ill, I didn't post in December, when I passed a peculiar milestone... my final zometa treatment. Zometa helps strengthen bones, and is also known to suppress myeloma. However, with prolonged treatment comes increasing risk of osteonecrosis of the jaw. As with all things myeloma, it is a judgement made on the basis of insufficient information, but my docs reckon the risk outweighs the benefit somewhere beyond 2 years of treatment. And so December's dose was my last.

It feels odd walking to the chemo unit "for the last time". Not really the last time - we all know I will be back - but not now for an indefinite, indeterminate, unspecified time to come. I count up the time since my first visit. 858 days have elapsed.

Of course, I haven't spent all of those 858 days in hospital. But I have had:
60 (or thereabouts) visits to the chemotherapy unit (usually at least half a day, sometimes a whole one)
25 (or so) appointments in the haematology clinic (anything from 1 hour to 4)
21 days in isolation after my SCT
10 trips to the physio
6 sessions in the post-transplant rehab gym
4 bone marrow biopsies
3 MRIs
3 days waiting in the ward for inconclusive tests after getting a fever
2 sets of nuclear medicine scans (for bones and kidneys)
2 sets of PET/CAT scans
2 trips to A&E for suspected fractures
1 day in apherisis
1 night in, and a morning in the neurosurgery theatre
Appointments with the cardiologist, lung dept and the university dentist
So many x-rays I lost count

Innumerable blood tests

I suspect I've spent more than 15% of my waking life - 1 day per week - these last two and a half years, in hospital. Of course, most of that time was condensed around my front line treatment and my SCT. It's really only been a day a month, during the last year. But leaving the chemo unit does feel like the end of a chapter. My last treatment experience is a total shambles. I arrive at 9am, have my blood taken at 9:30, but am still waiting for my treatment at 1:00. I won't miss that.

If it weren't for the anaemia, I'd be down to one appointment every second month, for now. I sincerely hope that nothing shows up in my forthcoming tests, in which case I can finally bask in my low light chains, and stop spending so much money in the hospital coffee shop.

* Actually, my anaemia is macrocytic, not microcytic, so low iron is probably not the cause. You can nerd yourself out reading up on those if you want. If you do, you'll see that macrocytic anaemia can be caused by vitamin B12 deficiency. But my consultant warned me off going bonkers on B12 supplements. There's enough confusion in my blood without chucking things in at random.