There are things I want to say, but I don’t know if they will be to youAlcoholiday – Teenage FanclubI’m sticking this up here as part of the “complete record” aspect of dialm.I remember, 5½ years ago, spending a lot of time working out how to talk abou…
The one thing that never seems to be discussed in the various support groups is intimacy. I’m not asking for a blow by blow (if you’ll pardon the pun) account of other people’s moments of intimacy, but I do think we all ignore the issue. During the var…
This blog entry is a completely selfish one. Some of it might not make any sense and some of it might be taboo. My head is so full of s*** and the flies buzzing around are driving me crazy. So the following post is my attempt to muck out and is possibl…
Through this new frame of mind, a thousand flowers could bloom. Move over and give us some roomGlory Box – Portishead This really is the last taboo. I feel uncomfortable saying this one evern to myself. It’s about my own relationship with myeloma I hat…
In a Different Place – Ride
Dealing with myeloma throws up all sorts of issues. The medical system addresses the most acute physical ones, but that’s only a small part of the whole. Very early on, I realised I had a choice to make – do I involve myself in the “myeloma community”? For while I knew it would bring a lot of comfort and support, I also realised it would expose me (continuously) to the ravages of what myeloma does, to other people even when it is not doing it to me.
There are several myeloma forums. Myeloma UK operate a “discussion board”. It’s an open forum – you can visit it if you like. This is full of friendly people, and helpful advice and support. I wouldn’t wish to denigrate it. But as it’s a public space, one can only open up so far.
There are several groups on Facebook, which are closed and so a little more private, but they are also a little impersonal because they are big communities; because they are (statistically) older than me; and because (due to sheer weight of numbers) they are American in character. There’s nothing wrong with being American, of course (and lots right. Some of my best times have been in America, as are some of my dearest, oldest friends). But American forums are prone to woot-woots and “God’s plan” analyses, which don’t come so easily to an Englishman.
About 4 people per 100,000 are diagnosed with myeloma each year. But only 2% of those diagnoses are among the 50%+ of the population who are under 40. There are around 50 diagnoses of myeloma in people under 40 in the UK each year. Your likelihood of getting myeloma before you are 40 is, in total, about 0.005%. It is very in character, for me, to get a rare, complicated disease. I recognise that. But it’s quite lonely too.
But with the support, comes the exposure. To let you into one of the nasty dirty secrets of myelomaville, every now and then someone in one of these communities, who I’ve exchanged messages with, and been inspired by, dies. It’s not an easy thing to respond to. Part of me is full of grief. Part horror. Part guilt. Part relief. (“I’ve lost a friend”/ “That could’ve been me”/ “It wasn’t me”/ “Thank goodness it wasn’t me” respectively.) Part of me wants to put my fingers in my ears, shout “LA LA LA LA LA” and pretend the whole thing isn’t real. Part of me wants to walk away from the myeloma community, so I can kid myself that this miserable shitty disease isn’t what I know it is.
But another part of me knows how futile that would be, and how much support I get from knowing other people are living with – and through – difficulties alongside me. (And I sincerely hope no-one will ever walk away from me or Marisa, just because we’re too much to cope with.)
I’ve been trying for weeks, to think how to put this into words. Thinking of Hugh, Pamela, Paul, Steve and their families.
Steve’s death was almost the first thing I read about on the Under50s club forum. You don’t get a gradual, gentle introduction, with this disease. I never knew him – he died a few weeks before I was diagnosed. But I still feel a bond.
Paul was an optimist, and went by the wonderful tag of “Outdoor Paul” because he loved doing outdoor things. He had an SCT, and appeared to be in recovery. On the day he was taken ill the last time, he’d just enjoyed a 5 mile walk on the moors. And then he got an infection and died.
Pamela lived with myeloma for years. She was a devoted mum of small children. Her myeloma was unrelenting. She took every treatment regime imaginable, but got only short remissions each time. She knew what was coming.
Hugh was in full remission from his SCT, and getting on with life. And then one night, without warning, he died.
They were all my friends in need. They were my brothers and sisters through myeloma.
I can’t do any more, really, than to pay tribute to the strength of their human spirit. Here’s to those living with pain and tribulation, myeloma or otherwise, in life or in grief, and doing so with grace and fortitude.
I’ll be honest and confess that all this was so much easier for me, a even just over a year ago, when I still thought I was invincible and didn’t really give a shit.
Even if I live another 40 years, and my myeloma proves less powerful than modern medicine (which I fervently believe it might), I’ll always carry the scars of my mortality, and the friends I have made and lost, along the way.
Our church has a corner for lighting candles – it was not part of my own tradition, but I have grown to love it. I’ve taken to lighting two candles each time I’m there. One for people with myeloma, one for people enduring other horridnesses. One for people I know, one for those I don’t. One for people I’m thinking about, one for those I’ve forgotten. One for me, one for you.
* These myeloma buddies were designed by Paula, another “Under50”. Sadly, Paula died last year.
If you miss the train I’m on, you will know that I am gone. You can hear the whistle blow a hundred miles 500 Miles – Peter, Paul and Mary A plug There’s a documentary coming up next weekend: “The culture Show – Alive: Rankin Faces Death” (10:10pm, Sat…
You may not see things my way; like my methods or my reasons; but you can’t tell me that I’m wrong Bluetonic – The Bluetones A bit of introspection, about my exposition Another week passes. I recovered from my fatigue, and I’m feeling pretty chipper. I…
Step On – Happy Mondays
It starts the moment we meet. You say – not unreasonably
“How are you?”
You do this, I guess, out of a mix of habit, and a genuine interest in my health. Like as not, I’ll reply simply
This is because mostly, these days, I do feel good. And anyway, I’m English.
What’s annoying is the cracks this little word plasters over. The very next moment, I’ll wince or groan or some other thing will give off a signal that maybe I’m not quite as OK as the simple answer implied. And as soon as I’ve done it I worry that I’ve made myself look like a faker.
“Hmm” I imagine you’re thinking “is he so used to putting on the moans and groans that he does it now out of mere habit? Or, alternatively, is he just so jolly English that he says he’s good when he’s quite definitely not?“
Here’s the taboo – and I don’t even know how other people with myeloma really feel about this, because we’ve all got a vested interest, at any one time, in talking our situation up (if we’re just trying to get on with life and not be dominated my myeloma) or down (if we’re feeling in need of sympathy). But here’s the reality. My bones don’t feel like they used to. Things ache that didn’t ache before. It could just be age, of course. But I have another culprit in my sights.
I asked my doc about residual pain last week. He said sometimes it takes a while to go. Sometimes it never goes. Is it just me? I suspect not. Personally, I’m only groaning about achy bones. I know other people who are dealing with the legacy of neuropathy from the anti-myeloma drugs. The sensations would be different, but the story much the same.
I’m increasingly concluding that the only intelligent course is to just get on with life, and not worry about it (I think it hurts less, when I think like that too. I’ve been thinking enthusiastically ever since I got my CR, and I’ve hardly even needed to take any paracetamol.) Now, you might be thinking, reading this, that I’m in terrible pain. I’m not. Sometimes I have little moments, that’s all. They are nothing compared to what I’ve experienced. Nothing to complain about at all really.
In fact I’m not complaining… Except to say this is an awfully long, convoluted, circular and unsatisfactory answer to that simple question “How are you?” But it’s the best I can do, so forgive me if I mostly skip it, when we next meet up. That’s assuming you were asking how I am on a physical level. Maybe you were thinking about my mental health? On that front things are a bit more straightforward. I am the me I always was. Except sometimes I remember I’ve got myeloma (normally when my bones ache), and that messes with my head, a little.
This is all a bit complicated, isn’t it? I wonder if you understand what I’m trying to say? Perhaps it would be easier if I’d never brought the whole thing up.
With 2 major social events in the diary, I’m going to see lots of people this weekened who I haven’t seen for ages. I realise now, that none of you will know how to greet me, having read this. May I make a suggestion? We could revert to the English of times gone by, as epitomised by this little exchange from Oscar Wilde’s Lady Windermere’s Fan
Lord Darlington: “How do you do, Lady Windermere?”
Lady Windermere: “How do you do, Lord Darlington?”
This has the wonderful property of not actually involving anyone answering the question. How do you do? And how do you do? And we’ll look each other in the eyes, and know that we are both, basically, fine.
I am more than these bones. I feel love, I feel alone Flesh and Bone – Keaton Henson Day 90 : The indelicate subject of bone marrow biopsy There’s a small taboo in myeloma circles about talking about bone marrow biopsy. We tend to just brush it off. “I…
It’s taken me quite some time to dare to write this post; it feels like such an unmentionable topic. But, I’m coming out… I have genital warts. There, I’ve said it! Phew! But, don’t fear, I will NOT be posting … Continue reading →