Saturday, May 25, 2013

Ten thousand kilograms of concentrated awesome: from me and Ms T

As always, I post this with Ms T's permission. So first, the update, which is good news.

We can't call “remission”, but there's a faint echo of one in the distance, if auto-immune disorders offer remissions. Ms T's intake of terrifyingly toxic drugs has been halved to a mere bi-monthly visit to the chemo suite. Her intake of steroids has been cut down towards the minimum, and may be stopped this year.

The replacement celiac artery is holding up perfectly, and there haven't been any new tumours (which can arise in the presence of a severely depressed immune system).

All of that's good – but some of the burdens remain; in particular, the side-effects of chemo. Although the dose has just been cut, there effects are cumulative and don't disappear instantly. So cyclo's effects on digestion and so on remain.

It doesn't stop us from feeling happy that things are headed in the right direction at last. Even if there are still times when the best thing to do is hug her while she cries.

The other point of the post

While away at a conference, I found myself being asked about the blog posts Ms T has allowed me to post about the chemo life – some of the time in public, at other times away from the crowd, sometimes in low voices, sometimes in groups.

The things they said touched me, and in particular, someone who discussed chemo in terms of psychological isolation.

I hadn't articulated to myself is that chemo is an isolating experience.

Yeah, I know. I'm an insensitive clod. I miss the emotional context routinely.

It's easy to see that chemo makes someone feel dreadfully, atrociously, physically ill. And it makes them feel like freaks if, for example, they lose their hair (Ms T is fortunate in that, her hair changed colour but is still there).

It's easy to realise how frightening it is: watch a nurse approach in a splash suit, or look at the gauntlets I'm supposed to wear if I have to clean something up.

But how could Ms T feel isolated by chemo? The family never went away, never stopped holding her, never stopped saying we love her.

I didn't realise,” someone said – I forget who, perhaps because there is lots of wine around at conference dinners – “how isolating it must be, until I read about your wife.”

That was a double smackdown for me: first, because I hadn't thought about chemo in terms of psychological isolation; second, because I'd managed to communicate it without understanding it.

It was profoundly unsettling. Ms T must have felt like that – even while she was giving me permission to put the ghastly details in public – and not been able to articulate it to me. And I'd been everywhere with her disease, since her weight first collapsed to 31.7 kilos and it took nearly three months in RPA to get her under control and her immune system disorder diagnosed.

Thanks to that friend for opening my eyes, when you thought you were thanking me for opening yours!

There's also the person whose family member had gone through chemo for cancer and died, all the while hiding the worst side-effects from anyone who came visiting, including family. Yes, Ms T and I published those posts for you. And your appreciation touched me deeply.

And there are so many people in the same boat, from such a small sample of acquaintances. 

Their loved ones, family members, friends, feeling isolated while they talk about the public face of chemo, the things that go in movies and celebrity magazine profiles and TV talk shows, hiding the stuff nobody told them about, not even the doctors. 

“I got to say to him, it's okay, I understand, it's the chemo, there's someone I know...”

Finally: the acquaintance, now a friend if they ever need it, who told me “your wife is ten thousand kilograms of concentrated awesome”?

I agree.

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