I’m nervous. Cos I’m the left eye, you’re the right. Would it not be madness to fight?We Come 1 – FaithlessI do wanna write. And I don’t. A lot to say. And nothing. I’ll try to avoid a long screed of whateversinmyhead, though it isn’t easy to get …
I dare you – The xx
I went to Brixton Academy last week, to see The xx in concert. It was only once I was there that I recalled I had seen them, in the same place, sometime a little over 4 years ago. I know last time round I had to simply stand rigid through the pain until eventually my back went numb. Maybe the morphine had dulled my senses back then, because the gig seemed so much richer and more alive this time round. Echoey guitar; deep rhythmic bass; haunting vocals. Splendid. I love concerts – not least the feeling of having no regard to being the wrong side of 40 (though I take my hat off to the 2 friends who went Sunday afternoon clubbing last weekend. I’m not sure I’d be up for that even if I didn’t have children as an excuse.)
In 2 weeks, Marisa and I are taking the kids to Japan (新幹線温泉寿司). There’s a sense of urgency for us about making adventures, which is definitely a consequence of myeloma. It’s 18 months since we were planning our time in Central America, which really did feel like a snatched opportunity. And yet… time passes and I don’t have a real sense of how long the good times will last, any more. But the longer they do, the more trips we’ll pack in, no doubt, unless something else stops us. Myeloma has made me live more, now, than I suspect I would have otherwise.
Live more, myeloma less. Or something like that.
Having bunked my last hospital appointment, because I was on a business trip (New York, Toronto, Bogota and Mexico City), I had to book this week’s appointment on the phone. The receptionist would only put me in for the end of the Wednesday clinic, which meant 2 hours sitting waiting, and a different doctor. I have to smile my sweetest to get put back on Friday’s appointment list for next time. Friday’s clinic is only for clinical trial patients, a category into which I do fit, technically. But more importantly, if I turn up early on Friday mornings, I’m spared the endless wait.
My light chains are up, but only a little, within the range where variation in results makes the difference insignificant. The κ/λ ratio is pretty much unchanged. All of which suggests nothing much is happening. The κ/λ has moved in a couple of jumps, doubling abruptly in July 2015, and then again in April last year. But since then it has risen only 50%, and been static now for several months. The myeloma is unquestionably there. And unquestionably returning. But beyond that? Pfff. The doctor is happy enough not to see me for another 10 weeks.
We do have a discussion about treatment options. She mentions bortezomib again, possibly in conjunction with a clinical trial drug (venetoclax? – which I hadn’t previous heard of), before another stem cell transplant. (I guess it depends on how long I hold off treatment, as all these trials have recruitment windows. But if not this one, there’ll be another, no doubt.) And after that I’d still be “naive” (her word) to so many drugs – thalidomide and lenalidomide being obvious ones. Which means I’ve potentially 3 lines of what are, by current standards, very conventional treatments, ahead of me. And that could take a number of years to work my way through.
The UK myeloma group on fb, of which I am one of a group of admins, has had a punishing few months. Relapses. Horrid experiences. Deaths. Partly that’s the toll of winter, and many of the patients are older than me (not that this makes things any better, just maybe less relevant to my prognosis). Some of the stories are shocking. Vicious, callous and abrupt. And being young is no guarantee of a better outlook. I am profoundly grateful, and humbled, by my own relatively benign experience of myeloma, and the massive amount of disease free time I have been blessed with.
Myeloma’s horizon seems to be receding, for now, for me. Though it continues to menace. And when it does return it could do so abruptly, I’m under no illusion about that. In the mean time:
Oh my goodness, how long has it been since I properly wrote anything here? Those of you who are distant strangers may well have feared that I was no longer around. I am! I am still very much around and … Continue reading →
We want to be free. We want to be free to do what we want to do. And we want to get loaded. And we want to have a good timeLoaded – Primal Scream (feat. Peter Fonda)Checkup… KFLC=69…Summer en Sussex. I spent a lot more time with the children t…
Poems – Tricky
Some things are best remembered, others are best forgotten.
I read an email today of a post from a friend’s myeloma blog. (The post, coincidentally, is dated yesterday). She begins
“Five years ago today our life was totally transformed. I clearly remember sitting in the Consultant’s room… with him telling me…”
I don’t think any more of it, until an hour later when I am walking down the street, and it occurs to me that the (2nd) anniversary of my myeloma diagnosis is approaching too. When was the fateful phone call, I wonder?
And then it strikes me. It was July 17th. Yesterday. Yesterday I was busy flying home from New York. Yesterday I was busy writing something for a client. Yesterday I was talking with builders and architects. Yesterday I was out for pizza with my children. Yesterday, I forgot.
Oh rapture. I can’t tell you how good I feel.
The peddler now speaks to the countess who’s pretending to care for him, saying “Name me somebody that’s not a parasite and I’ll go out and say a prayer for him”Visions of Johanna – Bob DylanIt requires distance, sometimes, to see things in perspective…
I don’t say my prayers but I pray for you. I might say “Who cares?” but I know you do. You’re the one who knows that my lies aren’t true. When I see you cry I think tears are cool.Tears are cool – Teenage FanclubCheck up (from 17th March tests): … Ha…
Fireproof – The National
Since the musculoskeletal components of myeloma get under-reported in comparison to everything else, I feel it is a personal mission to write this stuff up. So here comes a potted recount of my physiological fitness over the last 2 years. Some of you know much of this all too well.
2012: March: The terrible crunch in my back that stopped me in my tracks. May-June: Increasing problems with walking, and particularly standing. July-Dec: Bone pain and chemo fatigue. I sat as much as I could. And slept propped up on pillows. I was slowly curling up. I avoided the need for a zimmer, mainly by using Lyndon’s buggy as a substitute.
2013: Jan: Couldn’t stand straight, or for long. Lingering pain, despite my myeloma being in partial remission. Feb: Verteborplasty released me from much of my pain, and most of my painkillers. Mar-May: Mostly lying down, really on account of my SCT. I suspect I was getting even more crooked, though I was too crook to care. Jun: Beginning to get a horrid realisation of the kyphosis I had developed. And beginning the fight to overcome it. Back on painkillers in order to begin to push my back back in to shape. Jul-Aug: Out and about, proving to myself that sitting in front of a PC is a major source of problems. Fighting to get flat, often experiencing really quite painful grinding sensations in my lower back as the bones realigned. Sept: Finally (finally!) seeing a specialist physio. She goes up in my personal NHS Hall of Fame for what she has done for me, in the ensuing 4 months. Oct-Dec: Continuing, determined, stretching routines. Measurable progress on every appointment. My head getting further back as I stand against a wall, until eventually I can touch the wall. Though I still need to be able to do so with my chin tipped down not up. My arms getting further down the wall when I stretch each side in turn. This second part is a reflection of me gradually gaining some rotational flexibility.
2014: Jan: Here I am. My upper (cervical) spine kyphosis is not quite corrected, but it is getting there. My mid (thoracic) spine pain is gone. (One’s thoracic spine doesn’t have much movement). My lower (lumber) spine is slowly turning back from kyphosis to lordosis – i.e. going the right way out – and I can begin to tilt my pelvis properly. I’ve got some rotational movement, and it feels like more is coming. My remaining muscular pain is diminishing and confined to my lower abdomen, my groin and the band across my lower back. I have been running, twice, without pain – which is proof, really, that things can move much as they should. I can swim 1km. I can ride a bike. I can walk miles. I can stand for a good hour or two before it gets really painful. I can carry luggage. I can get in a canoe. Though I think riding a horse was a bit much.
When I thanked my physio for all she has done for me, she told me that my determination has been an essential factor. I’m not saying this to show off (though I do feel quite pleased with myself about this), but because it is so easy to despair with myeloma. It (and its treatment) promises so many symptoms and consequences: pain, fractures, infections, anaemia, thromboses, calcemia, neuropathy, fatigue, kidney failure, memory damage. Oh yeah, and recurrence and death. It’s pretty easy to want to give up. Myeloma isn’t the only vile disease in the world (I have particular loathing for MND and MSA too, having seen what they do to people I love), but it’s right up there.
But, if you recognise my description of my experience as similar to your own, don’t give up. Never give up. Every day is a chance to “Get up. Dress up. Show up.” And Amen to that.
* For a change, instead of a song lyric, here’s a quote from a book, The Outsiders. Those of you not brought up in the 80s probably don’t remember the Brat Pack film adaptation…
“Tough and tuff are two different words. Tough is the same as rough; tuff means cool, sharp–like a tuff-looking Mustang or a tuff record.”
I’m wasting my young years. It doesn’t matter. I’m chasing old ideas. It doesn’t matterWasting My Young Years – London GrammarCheck up (from 10th Jan tests): … Haemoglobin 12.4 … Neutrophils 2.26 … Platelets 176 … Kappa FLCs 61 …My scores. Bl…
Friends, family, acquaintances, fellow cancer patients, the public at large see me running around, having fun, being busy, volunteering, travelling, visiting friends, driving a big fancy new car that I could not afford without a Motability lease, going out to … Continue reading →