Monday, 6 May 2013


Some people can't relate and others have a lot to learn. I don't want to spin my wheels, I don't wanna let my stomach squirm. If it feels right, at the right time, we'll work it out. We'll be alright, I know
Anchorage - Surfer Blood

Day 60 : Enjoying the sunshine, resenting the insensitivities

I've been doing well this week. Keeping stretching (and taking painkillers too). Been out and about. Went swimming. Been to two parties (proper grown-up ones, not children's ones). Even had a day out at the seaside. (Lyndon was there too - his toes are just visible peeking out of the buggy.)

I'm still grappling with fatigue. Twice (or thrice? can't remember) this week, I've put the kids to bed, gone to "rest my back" and woken up 11 hours later. And the latest odd symptom (because the stem cell transplant process, even more than normal chemo, does seem to generate odd and unexpected symptoms) is dry skin. Mine has gone from fine (last week) to lizard-like-face (this week). Even the really good moisturisers (I'm using diprobase) make my skin sting when I put them on. I'm not sure whether the sudden onset is a product of sunnier weather, or whether it coincides with the most damaged layer of my skin finally coming to the surface. It does coincide with my hair beginning to regrow. Either cause, it's a bit bizarre.

So, not much to complain about, until someone on a myeloma forum called me (and everyone else with myeloma) a "victim". I can't tell you how angry that made me. The woman who said it has recently lost her husband to myeloma, which is hideous and awful and entirely mitigates inappropriate comments. But it still stung me. It dredged up a lot of stuff I've been thinking about for ages about the things we should and shouldn't say to each other.

First, on this theme is a thought - someone else's - about when to bitch and complain, and who to. I recommend you follow this link to an article by a psychologist called Susan Silk about what she names a "Kvetching Order". I guess in English English - where we don't borrow so much from Yiddish - we'd have to call the concept "Grumbling Rings". It's very simple, and very perceptive.

Read it before continuing with the rest of this post. (Here's the link again.)

I've certainly been on the receiving end a few times when people have muddled up the hierarchy of the Grumbling Rings. I'm quite sure I've been the protagonist on many occasions too. I sincerely hope I'm better at handling this now.

Second, is a thought of my own, about the futility of trying to make tenuous connections. In my first post, when I was just in the process of being diagnosed (a long time ago, really), I wrote
"I know the weeks ahead will bring all sorts of uninvited, but well intentioned advice of the 'my grandpa once had xxx..' variety, and that won’t help me at all."
Inevitably, this has happened many times. It's only natural to want to empathise, and most people have no experience of myeloma. The same process takes place every time someone we know faces a challenge we don't have personal experience of. As ever, I'm making no claim that myeloma is special. Far from it. Our minds intuitively scour themselves for possible comparisons: things we have experienced, or seen, that have some common features with whatever our friend is dealing with. And we find the best connection we can and come up with a proxy in our heads. Of course, it isn't a real connection, because we haven't had that experience, but it's the best we've got. So we say something like
"When I was XXX..." or "My grandpa once XXX..." or "I remember XXX..." or "I read XXX...".

Problem is, human nature is such our friend doesn't instantly spot similarities, he spots differences. That's how gut reactions work. He (or at least, his gut) misses the connection. He thinks
"That's not like my predicament at all, because YYY"
Cue instinctive annoyance at the clumsiness of the comparison. Quite possibly it feels like we're trespassing on his emotions - laying unwarranted claim to them. (It doesn't matter how tactful or gifted with words we are about this, either, because our friend is super-sensitive to the unique features of his situation.) (But fortunately, he also knows, rationally, that we're merely trying to connect with him, in the best way we can. So he keeps his peace, and our conversation moves on.) My conclusion from this is that it is futile to try to connect like that - unless we really do have a relevant experience of our own. Far better otherwise - despite our instincts - to offer compassion rather than claim a false connection. Doesn't mean we can't share stories, observations, anecdotes. Just means we need to think about how we do it.

Finally, back to why I'm not a victim. I think my first issue is with being categorised at all. I struggle in my own head with whether I "suffer" from myeloma. I'm prepared to be a "patient" as long as I'm in hospital but no longer. I'm not at all comfortable, I admit, with my relationship with "cancer". I don't want other people to tell me what I am. Even in relation to other people with myeloma I increasingly realise that all our experiences are different, and I'd do well not to project my own opinions and emotions on to others. I'd appreciate it if others didn't project theirs on me. I think there's a general principle here that's not limited to myeloma or cancer, but a truth about every day life. We should hesitate to tell other people what they are, or how they feel. Ultimately, the "victim" comment both claimed a connection with me which it's author couldn't substantiate, and simultaneously dumped in on me by making me evaluate whether or not I am a victim. I'm not. I'm not surprised I was annoyed, either.


  1. Alex when I tried to follow that link to the LA times I got this from my google browser:

    Danger: Malware Ahead!
    Google Chrome has blocked access to this page on
    Content from, a known malware distributor, has been inserted into this web page. Visiting this page now is very likely to infect your Mac with malware.
    Malware is malicious software that causes things like identity theft, financial loss, and permanent file deletion. Learn more

    1. Mysterious. It's the Los Angeles Times, you'd think it was reputable, and eqads is just their ad-server. According to webutation eqads is rated safe by google.

      So I don't think there's a problem.

      I don't want to breach copyright, by just posting all of the article onto Dial M... That doesn't stop other people doing so though - the entire thing is reproduced here:


  2. Weirdly can now access the article which is great btw. A useful tool.

    I think the point you make about general approaches to other people's predicaments is important. I know in the past I've been guilty of projection and I'm sure I'll do it again. Although not regularly I hope. We're all fallible though.

    1. Don't project your fallibility onto me now!

    2. Funny that's what the pope said to me :)

      I have some horrendous stories from work about what people have said to me. If I we ever meet face to face I'll regale you with them.

  3. hello alex,

    oh, dear - i know of what you speak, especially now that i have suddenly become a widow. platitudes, predictions of how it will just get worse as time goes on, or the invitable you're strong, be positive, it's god's plan - blech.

    but you, dear man, are learning more about your inner self, and more about what you are willing or not to tolerate. and with your words perhaps there will be some modicum of the value coming through of just one's listening and one's saying they are sorry, asking if there is anything they can do to ease your way.

    i want to thank you for the comment you made to me on the MM support group page. it touched my heart and let me know you cared, and that meant a great deal to me.

    i loved the photo at the beach - your tiny babe's toes just visible, and thought and hoped you were having a lovely respite from all things MM.

    hugh was very impressed by some of the posts you wrote that i showed him. i think it inspired him, and he connected with so many of the emotions you've written about. hugh lived the latter part of his life with MM with so much more empathy and he felt you were doing such a good service, writing your truths the way you have, with such honesty. me, too. i want you to know that hugh and i took being fearless friends to you very seriously. and i believe he still does; having gotten to where he needed to be is not a place but a way of being. his place is still here, and feeling his presence everywhere makes me believe he won't forget you for also being OUR fearless friend.

    love, XO

    karen, TC

    1. Sorry Alex for hi-jacking your post.

      I am so sorry to hear your news Karen. What else can I say.

    2. Karen

      Blech indeed. There's nothing useful to say at all. All we can offer each other is our friendship.

      Even as a regular churchgoer myself (which puts me in a minority here in the UK), I always find the "god's plan" stuff particularly hard to read. There's a plan? And it involves us having to deal with all of this? Some plan.

      I've been thinking about you and Hugh a lot this week. And what it means to be friends (and to be fearless). I'm sorry I didn't know Hugh longer. But I'm pleased I knew him, through you. And I'm very pleased to know you. I'm delighted if anything I wrote resonated with him. The jumble of thoughts and emotions we all go through, are better aired and shared, I believe.

      Strength to you, and love.