Bucolia

Then off goes the bell ringing through my head. Signifies that all’s been said
The Bell – Villagers

Check up: … Haemoglobin 11.9 … Neutrophils 1.87 … Platelets 184 …

My test results from Monday much as last month. No plans to find out my FLCs this month, so just presuming my myeloma continues dormant.

Sitting in the hospital this week for my bone drugs, I can’t say I’ve missed it. Each visit I notice fresh changes. The corridors have been recently refurbished. More than half of the staff in the chemo unit have come and gone. Being here is very much standing still, for me. Standing still is a lot better than going backwards, or downhill, of course. Nevertheless, losing more than half a day every month, sitting in the chemo unit, is a tangible drag. Even with my headphones on I can’t help overhearing unwelcome snippets of other people’s woes. She had an adverse reaction to velcade. He waits endlessly for blood results. Her chemo must be attenuated. He needs assistance to walk to his seat. And then there’s me. Healthy, happy, and incurable. Fiercely independent, yet dependent on endless tests and therapies. There are charities – I can’t ignore it because there’s a poster staring me in the face to remind me about it – set up to “support” me and “help make life better” for me.

The bone drugs, this week, leave me feeling a bit shabby for 24 hours – for the first time in ages, I retire to bed. And then I have yet another hospital appointment – this time with a physio who is going to try and get my spine fit for running again. This is a great goal – but what a drag to have to keep working on my back day in, day out, probably for ever.

Sitting in the hospital makes me think about my progress. If you’d asked me, 15 months ago, where I’d be now (or even if you hadn’t asked, because it was almost a fixation for me) I’d have painted a picture of completing my PGCE (which I have not) and then backpacking the children across Asia, before setting up home in New Zealand. A carefree existence like that is simply incompatible with myeloma. It’s a tricky thing for me to even think about now, and Marisa and I don’t discuss it much. A year ago we had photos up on the wall of our kitchen of our “destination”. For a while they were simultaneously difficult to look at and impossible to take down. They are long gone now, replaced with pictures of happy children and holidays. It’s a kind of bereavement, I suppose. We are grieving for a life that never was.

Instead, where am I? On holiday, if at all possible. After the summer en famille, kicking back in France, we just took a luxurious, romantic, child-free, weekend in Venice. We’re off to Turkey next, for some autumn sun in a couple of weeks and (barring something awful happening in the meantime) planning a jaunt round The Philippines in six months: Marisa and me, our wonderful children, and some of our dearest friends. In between, I’m working, but also making time to do a share of our child care.

Oh… And we recently got the keys to a little place in Sussex, and are throwing ourselves into rural weekends. A beautiful view. A wood burning stove. Easy access to the seaside, to country walks. We’ve been blackberrying, shell collecting, castle climbing, bird watching. Bliss.

I feel a little uncomfortable with the new self image. Holidays in the south of France? A lifestyle job? (To use the term with which an old boss used to disparage anyone who prioritised family instead of graft.) A second home? Yikes. On the other hand I defy anyone to look at Marisa and me and even think – let alone vocalise – anything along the lines of “it’s alright for some”. The rest of my immune system may be compromised, but I’m largely immune to feeling guilty, any more.

Many people have warned me that it can be the time when intense treatment has ended, when life returns to “normal”, which can be the hardest on the mind. Seems ungrateful really – I have much to be thankful for, after all. But when I was ill I had a clear focus – getting well. Now I keep asking myself the purpose of being healthy. Am I making the most of it? Am I being responsible, but not too earnest? Am I enjoying myself enough, but not being too frivolous? Where’s the optimum balance?

While I went through the intense period of my treatment I could whinge to my heart’s content about bone pain, nausea and fatigue. After months of being concerned on our behalf, it’s nice for people (that’s you) not to have to worry about us. So I’m reluctant to inflict my existential uncertainties on you. (I may need all your empathies again, one day… can’t afford to give you compassion fatigue!) Easier, therefore, to write it. (And now I have.)

No news is

Courage to carry on. I’ve got to be oh so strong. ‘Cause it’s a long way home
Home – Rudimental

Check up: … Haemoglobin 11.9 … Neutrophils 2.04 … Platelets 208 … Kappa FLCs ?? …

I spent much of August ignoring – not even really thinking about – my myeloma. Fatigue snared me just once, which is remarkable given the amount of cycling, canoeing and swimming I did. Not to mention the long drives, hot weather, late nights (courtesy of good friends and French wine) and early mornings (courtesy of Lyndon).
My myeloma symptoms, as I told my doc today, are largely non-existent right now. My back is still improving, though it does require regular effort on my part. The aches get less, the mobility gets more. But I’m certain it is mostly a musculoskeletal consequence of all those fractures, as opposed to being directly attributable to myeloma, any more. I do think there’s a residual amount of myeloma pain in my hips (I guess that’s what it is, since it doesn’t seem to be going anywhere). The doc asks me about it and I explain. When I go on to say that I’m taking no painkillers, I can practically see him scratching out the notes he’s been taking. Myeloma pain at a level that doesn’t need medicating? Doesn’t count!
It would be nice if I could completely ignore myeloma. But that is something I’m not allowed to do. I had a conversation with someone a few days ago, who I’d only just met. At the end of my sorry tale (I don’t often choose to tell it, face to face, but it sort of came up in conversation) she fished hopefully for an “it’s alright now” epilogue from me. Well, it isn’t aleffingright. I’ve still got it. It still impacts my life. In very tangible ways now, my life – all our lives – are different from how they would have been without myeloma. Aside from the massive interruption while I was ill, we are making different choices, different plans, from what we would otherwise have done. Different doesn’t mean any less good, but it does mean I can see the imprint of myeloma all around me.
I had my bone strengthening treatment on Monday. Things were going very slowly, and I had a school pick-up to get to. A year ago, I wouldn’t have dared to unplug myself from the drip. Now, I figure I can make these decisions for myself . (I should point out that I’d had all my drugs, it was just running saline at the time.) I did give the nurse the opportunity to remove my canula for me, though to be honest, I’d do that myself too, if I needed to. I feel like an old lag in the chemo unit these days.
Clinic this morning. The dreaded numbers. The monthly tick-tock of living with myeloma. I haven’t spent the week worrying about it, but it is always a distraction, nonetheless, in the days between them taking the blood and me getting the result. My blood counts are all moving in the right direction. Nearly normal white blood counts, and less anaemic. But I knew that already. What I am trying not to fixate on, this morning, is the magic number that is my free light chains, the pollution that my myeloma deposits in my blood and which tells me whether my myeloma is on the move. Not a healthy fixation. So maybe it is a good thing, when I get there, to discover my light chain result from this week isn’t up on the system. Right now I don’t know my light chain score. Unease, for a moment, and then calm. After all, you probably don’t know your light chain score either, and that’s OK, isn’t it?
I feel good, therefore I am good. I just need to keep believing that my myeloma is dormant, and I can get on with my life. The doc clearly thinks so – he’s told me not to come back for another 2 months. Maybe by then I’ll have forgotten all about it. (Ha, ha.)
You know I said it’s true. I can feel the love. Can you feel it too?
Feel The Love – Rudimental

Unobtainable

When the world surrounds you, I’ll make it go away, paint the sky with silver lining. I will try to save you, cover up the grey with silver lining
Silver lining – Hurts

Dial M is off the hook

I had three more posts drafted (in parts). One about cytogenetics, one about posture, and one about grace. But they will have to wait.

Over the last week, for the first time in a long time, I’ve not wanted to visit myelomaville. Another friend died last Sunday, reminding me – yet again – that I have an urgent need to live.

And I’ve been making plans, and booking flights to all sorts of destinations (New York, Venice, Turkey, the Philippines!), all of which is easier if I avoid worrying about blood tests, light chains and tumours.

And tomorrow, we’re chucking the bikes on the back of the car and heading for France.

I hope your summer is as relaxing, and free from stress, as I intend mine to be. For now, I’m dialling off.

Anno pugnandi

When the day that lies ahead of me seems impossible to face. When someone else instead of me always seems to know the way. Then I look at you and the world’s alright with me
Lovely Day – Bill Withers*

One year on. Still me

A year ago today, my doctor called. She introduced the word “myeloma” into my vocabulary, and told me she suspected I had it. I looked it up online and learned that it is incurable, and median survival is about 5 years (these two facts stood out from the rest). I can’t really explain what it was like, to discover all that, what it was like to have the sky suddenly fall in on me. Not that I think my experience is special, or even ultimately unusual. The sky falls on us all, someday.

At first I rejected the concept of “fighting” myeloma, because the physical battle took place in my blood stream. My role was merely to take the drugs as instructed – on days 1, 2, 3, 4 and so on (I don’t think they deserve to be called medicines, if we’re honest). But over time, I’ve come to realise that the real fight is the one in my head. I’m no longer terrified by the statistics. I know that, if past outcomes are anything to go by, I may win many physical battles with myeloma but I am unlikely to win the ultimate physical war. I also know that if Andy Murray believed in the hegemony of the past, he wouldn’t be Wimbledon Champion.

But the mental fight is something I can win with certainty. Because no matter what happens to me, I’m still Alex. I’m still Daddy. I’ve still got interests and ambitions. I’ve still got my friends. I’ve still got my sense of humour.

So happy anniversary, myeloma. I took all the drugs. They weren’t so bad. I’m still here. I know you’ll call again. I’ll take all the drugs again, or maybe some different ones. And I’ll still be here, while I can. I’ll be me, regardless. You lost.

I’d love to claim to have come up with the following statement myself, but I didn’t. Sums up how I feel, though:

* Thank you to my fantastic family for bringing this lovely Bill Withers lyric back to mind. We had our annual camping weekend together this month. This year’s evening ents opened with renditions of Portishead’s “Glory Box”, Candi Staton’s (or maybe Florence and The Machine’s cover of) “You Got the Love” and Bob Marley’s “Wings of a Dove”. Campfire singing, raised to a very high level.

Live

Turn off your mind, relax and float down stream
Tomorrow Never Knows – The Beatles

What was the theme of this blog again? Was it “Alex yacks on endlessly about music”? No!?! You mean I’ve actually got to slip myeloma into this somewhere? Really? Well, if you insist, here goes…

Went out to a gig last week (thanks, bro). Only the second concert I’ve been to since things went pear shaped last summer (oblique reference to disease there, in case you missed it). Last time round (The XX, Brixton) I was standing, and had to simply wait for my whole back to go numb (another hint, for those in the know). I was also packed full of painkillers (nudge, wink). And I had trouble moving the next day. This time (Tame Impala, Hammersmith) we were seated. When the tickets were bought, who knew what state I’d be in by now (ahem).

I fared much better this time, and it was a better gig too (sorry Romy, but it’s true). In fact, it was an awesome gig – the best I can remember since I saw Local Natives 3 years ago, but I digress (this doesn’t appear to be directly relevant to disease – Ed). These events all come with extra layers of meaning for me now – in this case, pleasure that I’m just doin’ stuff.

For an encore they played a song called “Nothing That Has Happened So Far Has Been Anything We Could Control”. It’s felt a lot like that, this last year. But less so now.

The point I am making here is it is very easy to talk about myeloma all the time. But increasingly, it is easy not to, too.

Nothing that has happened so far has been anything we could control. I have just been waiting for the perfect time to tell you that I know. Every man is happy until happiness is suddenly a goal. I’ll just be here waiting ’til the doctor calls and then I’ll let you know
Nothing That Has Happened So Far Has Been Anything We Could Control – Tame Impala

Swimming and cycling

I’ll swim even when the water’s cold, that’s the one thing that I know*
Even When The Water’s Cold – !!!
(the name of the band – if you can call “!!!” a name – is pronounced, I’m told, “Chk Chk Chk”)
Day 88 : Two fat ladies! The fun we could’ve had, bingo calling my recovery, if only I’d thought of it earlier… “Man alive! Day 5!” and so on. Or perhaps not.

We spent half term in Somerset (this photo was actually taken in Devon). The weather was nice. We went to the beach. We went cycling – twice. One day we cycled 12 miles, which is an impressive feat for Gyles’ little legs, and for my weak ones. We swam most days. We visited a castle/ rode a steam train/ had cream teas/ fed the ponies/ paddled in the river/ ate ice cream.

Sounds pretty normal? For me, that is a big achievement. There are aspects of normal which I find very aspirational!

I’m clearly getting stronger – I have suffered less and less from muscle exhaustion, and only resorted to an afternoon nap once all week. Sadly though, my new covering of hair wasn’t quite enough to stop me burning my head the first day the sun shone!

We’re getting precipitously close to the magic “100 days” since my transplant, which marks the first formal milestone in my recovery. As well as acting as a benchmark point for my response to treatment, it will also mark the end of the period of time which I pledged to focus on recovery to the exclusion of all else – i.e. not to do any work. I will need to think about what happens next – I can’t remain in this recuperative lifestyle forever, much as I am grown accustomed to its charms. But there are a few hurdles to get over first – starting with a bone marrow biopsy later this week. So a few more gritty posts will follow shortly.

But just for now, I can almost pretend I am normal.

*Figurative swimming, that is. We had a pool at our holiday cottage, but I didn’t go in the sea, which was proper cold, this week, though I did paddle in the river. As a general rule I do like swimming even when the water’s cold. Marisa would consider it one of my frustratingly English foibles. Bracing dips in Lago Gutierrez in Argentina, Lake Solitude in Wyoming and Lake Atlin in British Columbia all spring to mind as exotic examples of the urge. As do sea swims in Tasmania in September, New Zealand in April or the Isle of Coll even in the height of summer. I even swam in Antarctica once, though that was volcanically assisted. I’d have been straight down Minehead beach, into the freezing Bristol Channel, really I would, if only I had a little more haemoglobin pumping around me. I think it won’t be long now before I’m ready to open the pages of “Wild Swimming” again.

Stress Management

In the last few weeks, I have not thought that much about the fact that I have cancer. When I initially thought of that statement, I was going to say ‘recently’, until I recalled that my last crash was only three weeks ago and I know that back then, all those hours ago, I thought about it a lot. That’s the thing about My Myeloma; I’m only as good as my current good weeks. The bad gets forgotten, and it will stay that way until I start chugging down those ‘roids again on Friday, actually, when I come off them on Tuesday.* So, to rephrase; today, I have not thought that much about the fact that I have cancer. It may even extend to last week too, if we can exclude a few live episodes of the roadshow here and there (I even did one on the phone). Ah, the beauty of telecommunications.

Fatigue *may* have been stalking me a bit this week (just ask my pillows), but apart from that, and whilst we are on the subject, some bone pain, I feel a-okay.

Today, for reasons I am not going to share because I am sure you would find it mind numbingly boring and EJ Bones is about cancer. It’d be called EJ Jones otherwise, and then I really would get into trouble telling people about all the aspects of my life and The Network. I’ve watched Julia and Julia. I know about the pitfalls of blogging. Anyway, I am digressing… Today, I worried about something that wasn’t cancer. It actually preoccupied my thoughts. I know that that has happened previously in the last eight months, but I cannot remember when exactly (like I said, only as good as my current good week). Having to engage my brain in something wholly, not wholly, but you know, a lot, with something that for today and perhaps tomorrow and even the next day depending on how tomorrow goes, that is not my illness, banishing It to the sidelines, no matter how stupid I may look, or how flustered I get working things out during this break, is kind of nice.

I nearly text somebody earlier, I have the draft, it went something like this:

Today would have been a bad day if I did not know what Myeloma was and I didn’t have it. As it happens, apart from some testy moments which made me sweat (for once not a flush), and tiredness, I think I enjoyed myself. Is it strange to think that? See you tomorrow. You’ll know it’s me, I’ll have bags under my eyes.

I am always being told that I need to take things easy and I do. My focus, my main focus is to get better (whatever He looks like). Today, for example, whilst my mind has been otherwise engaged, I still had to make concessions. I got into bed at 21:00hrs, shortly after taking my nighttime drugs, so that I can get up in the morning. That said, I have to get the balance right between getting myself better and living. The two are not mutual exclusive. I feel better when I am doing the latter. I’ve been going through this for long enough to nearly always know when to call something quits. So, people, do not panic. I suppose, one could argue that it is wrong for one thing to occupy my thoughts at anytime, but, I’m learning slowly and every normal person gets a good four hours on me a day, so they can fill their minds with more things. And, really, don’t rain on my parade.

I know I am not in a long term, sustainable position, but it is the best I can do for now. Damn. It is not sustainable is it? Not beyond my treatment anyway… Well, I do need to see people and tidy my wardrobe and read a book and bake a cake and go to the cinema and some other stuff. So yes, it is not fair nor sustainable. But it is my now.

I suppose what I am trying to say is that today, I feel like I actually lived with cancer. Good and bad. Omnipresent as always, but not everything.

It didn’t make me sad today. Not once.

EJB x

* Note to self and steroids, must not be ill next Wednesday night. I have a date with some Mormons. Actually, do Mormons feature in The Book of Mormon? Is it appropriate to keep saying Mormons? Political correction. Note to self, must not be ill next Wednesday night. I have a date with some contemporary musical theatre.

The Wall

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

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

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

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

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

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

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

Toothache

I have what is commonly known as a toothache. The cause of my problem is not a karmic response to the questionable morality of my decisions this week, no, the cause is the wisdom tooth. Right bottom to be precise.

This little bugger has been at it for two days. I am finding it difficult to eat, which lets face it, is no bad thing. I like to think that it is also the reason why I have not slept well these two nights since. Everybody can sympathise with a toothache I am sure.

As much as my tooth is a pain in my bum, I kind of like it. It’s the sort of pain that I can recognise from my life pre August 2012. My Myeloma is not the reason I am in discomfort and it is a discomfort that everybody can understand.

It was comforting at first, but now, I wouldn’t mind if it went away just a bit, so that I could suck my thumb. I suppose I am also worried that something mundane, like the toothache, could delay my treatment. There can be no delays, I am ready for it all start.

Bring on Tuesday. Toothache or no toothache.

Firsts

After my diagnosis, I found that my life has become a series of firsts. Simple, and not so simple things I did in my life pre-myeloma, I have had to build up to doing again in a body that is cancerous and painful.

The firsts or milestones have been slow coming, and they have been made more difficult by my physical limitations. That in itself then creates a whole heap of psychological worries. Some have come about intentionally through my dogged determination and some have been a pleasant surprise. These successes are always a pleasant reminder that I am improving. I am not talking about the medicine, I do not know whether that is improving and it is best not to think about that. What I mean is that I am improving and with that comes my growing confidence and independence.

Some may consider my milestones to be minor, but each one is an indication that I am not, will not be wholly defined by My Myeloma.

The first time I had a bath, the first time I walked up a flight of stairs, the first time I went to the cinema, the first time I got on a bus, the first time I could use the oven unaided, the first time I could walk into town and do my own shopping, the first time I went into work, the first time I had a pint, the first time I did a starfish in my bed, the first time I went to the BFI.

All of it equates to some normality and recognition of something I feared was lost.

There is still a way to go. I am looking forward to the day I can change my own bedding, but I know that that day will come.

Each time I experience something for the first time all over again, I feel stronger, regardless of whether my decision to do it was medically or mentally sound. And most the time, I wonder what the big deal was in the first place.

With that in mind, last night I slept using just two pillows. It was a first.