Tuesday, 21 May 2013

Born again

Good shit's all around, good people. Don't let it get you down, good people. Good shit's all around. It's all about
Good Shit - Cornershop

Day 75 : Are we still counting? (Yes, obviously)

Has it really been over a week since I blogged? I'm not sure what to say.

There are two amazing things about feeling better.

The first is that it can compound on itself. One month ago, when I unplugged from the hospital, I was feeling good, except for the fatigue. But there is really no comparison between then and now. If I felt better then, that was nothing compared to how much better I feel now. I have energy now (most of the time). My  muscle ache is diminishing. I can swim 40 lengths. I can run, tentatively (on a machine, I haven't tried the unforgiving earth yet). I can go out and about largely as I please - even spend the day looking after Lyndon (we went to a play group yesterday). Even my back is much much better (though still a work in progress). But I suspect I still don't yet feel anywhere near 100% of what I can - I guess there's more dimensions of better coming.

The second amazing thing is, looking back, if I feel so much better, just quite how bad was it before? Thank goodness I was never really aware of how bad the bad times were.

It is like being reborn. I'd encourage you all to experience it - except to really appreciate it you'd have to go through the whole build up - broken back and bone pain/ velcade, steroids and high dose melphalan/ sickness and side effects/ loss of hair and digestive tract/ fevers and no immunity/ anaemia and transfusions/ fatigue and muscle weakness... Maybe not, eh?

As a celebration of rebirth, here's a pic of my azalea. In a normal year it is the first thing in our garden to flower - often before the end of March. This year it, like me, has been feeling the cold, but it is just beginning to turn heads.

Sunday, 12 May 2013

Dancing on

We live to dance another day, it's just now we have to dance for one more of us.
Long Live The Queen - Frank Turner *

Day 66 : I can feel myself improving physically, week upon week. I need mental strength too.

Not much new news in my life this week. Feeling stronger. Have been to the pool twice - once for exercise (swam 32 lengths, which I'm quite proud of) and once to lark about with the children. Even managed a few minutes running on the machine at my gym group. The first time I've run in over a year (and my skeleton didn't collapse, I'm pleased to report). Still getting a lot of back ache, but also finding it just a little less difficult to lie flat when I try to. Getting increasing capability to do things that bend and twist my torso without suffering too much as a consequence. Fatigue is still an issue. Spent all of Wednesday and half of Friday lying down. But that really is par for the course, I think. Still having some issues with my skin. Crazy itching (I think this is my body hair beginning to regrow). And unannounced attacks of lizard-face from time to time. So that's me.

I discovered on Tuesday that Hugh Sutherland, a friend and fellow traveller in myelomaland, has died. I knew Hugh only through communication online - but I feel an inevitable bond with everyone fighting myeloma, which accentuates these friendships. Hugh was in remission after a stem cell transplant, so as well as being horrid, sad news about a friend, it was also unsettling news for me personally, in remission from my own stem cell transplant. I've been thinking about it a lot all week. I'll try to describe my feelings to you, but you'll have to wait until I can sort them all out in my head and express them eloquently. Right now my thoughts are with Hugh's wife Karen.

* Another friend with myeloma shared this lyric with me, as his own response to losing myeloma friends. I like it a lot. I will dance for Hugh.

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.