Thursday, 20 June 2013

How do you do?

You're twisting my melon, man. You know you talk so hip, man. You're twisting my melon, man
Step On - Happy Mondays

Is it all of us, I wonder? Or is this little issue just me?

I promised a few more taboos. Fear not, no gruesome photos on this posting. I was reminded today, by Emma Jones of something that regularly irks me. This taboo is so trifling really that I feel almost self conscious mentioning it. Which is exactly why I must.

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.


  1. Love it Alex....I'm going to start saying 'How do you Do' very English :-)

  2. All I can think of now is the nursery rhyme.

  3. I had a very extreme version of this a couple of weeks back when I was discharged from UCLH.

    1. That's more than extreme. It is, in a very real sense, mental.
      I read back through your posts, Tom. What a nightmare, having your carefully produced and collected stem cells "contaminated". I'd make a flippant joke about using them as material for art, if it weren't so horridly serious. So you've had to go through the whole harvest process again, and had your SCT delayed. You are a very strong person to have written about it so matter-of-factly. I'd have been screaming.
      I wonder how you are getting on this week - hopefully everything has gone to plan this time round, and you've had your high dose melphalan and your SCT today? In which case there's a few down days ahead of you, but brighter ones to come.

  4. dear alex,

    we've all been in the place you described. when people ask me how I am these days, I also usually tend to say something that is not exactly how I am really feeling - the thought often crosses my mind -"if you only knew...". but I think it doesn't have to be a one-size-fits-all kind of conundrum. much of it depends on who is asking - just being polite, or are they really concerned? I think too, that it's helpful to be mindful that people who know you and care for you most always are hoping you are doing well, and often I see a look on their face that indicates they might feel they've asked a very stupid question. so, in those cases, I might answer by saying that I can tell I am making progress, but some days are still a bit difficult. thanks, I appreciate your asking.

    by this time in the game, WE know there are ups and downs and even spirals that leave us reeling, and we wish the people around us would "get it" already! some will, some will never get it. so I guess it's up to us to gauge which answer is appropriate. on some days, I swear, when someone asks how I am doing, I picture grabbing them by the hand, sitting them down, then telling the god-awful truth - I never know how I am going to feel on any given day, and it SUCKS. that's when having a blog is a very handy thing to have!

    it's good that you have come to the place you are now in, being able to form a workable thought process about your progress, albeit, still somewhat achy at times, and also what sounds like a healthy attitude that reflects your gratitude and hopefulness.

    I think of you often, alex, and wish you and your family all the contentedness and satisfaction of your continuing recovery - mind, body and soul.

    love, XOXO,

    Karen, TC

    1. Karen my dear. You are no doubt in that place more often than me. I look back at the past and how I hid away from conversations about bereavement - I never knew what to say so I avoided the topic, and even the person. I feel regret, even guilt, about that now. I still don't know what to say, but I do at least know better than to run away.
      I don't mind polite "how are you?"s - though I don't want to be held to account for my polite, if not always truthful, replies. The hardest bit is, as you say, that people want to know you are doing well. Partly because they care, and partly because it makes it easier for them. It's tough to disappoint people. Tougher still to live a lie.
      love to you too - and strength forever

  5. Deb, lorna and all
    This post seems to have struck a chord, from the number of messages it has stimulated. In answer to my own question, then, I'm not the only one who finds "how are you?" a slightly tricky question.