Tuesday, August 13, 2013

Not wanted in the chemo suite

I fear this post, because I am afraid that I'll offend people in ways I don't intend.

Occasionally, I tweet things about Ms T's chemotherapy, which means I have to explain that she doesn't have cancer. Chemotherapy happens to others, as well.

There's quite a bit of it about, actually, in that small, off-in-one-corner, not-quite-catered-for kind of way. You'd know, for example, that if you ever need a heart transplant, there will be drugs to make sure your body doesn't decide to attack the new heart. That comes under the heading “chemotherapy”, even if you spend the rest of your life taking pills instead of having the stuff dripped into a vein.

Once you look around, you'll find an awful lot of immune disorders that also need chemotherapy. Rather than re-hash Ms T's condition – you'll find it in my previous posts on the subject – I'll head in a different direction.

If someone reads this, and that person is an IT journalist in Australia, they may remember a woman called Helen Dancer, who died around a decade ago. I never got to know her well enough to ask what treatments were used on her severe rheumatoid arthritis, but I was at least friend enough that she'd happily lean on my arm to get to her seat at a press lunch. 

Treatment probably included methatrexate, in which case she would share an experience with Ms T. Helen didn't die of chemo, merely of being too devastated by her disease for her heart to keep pumping. I was overseas when I heard the news, with friends who also knew her.

I'd like to say something solemn about "an hour of quiet recollection" except: if you had known Helen, the recollections pretty quickly became hilarious, and you'd be laughing through the tears. She did devastating illness with a very sharp and ruthless sense of humour. To remember her is to laugh through tears.

And I see others like Helen these days when taking Ms T to the Sydney Cancer Centre, because if you need your chemo by infusion that's where you go. They hobble, like Helen did; they have the misshapen joints, and eventually, some of them will meet the doom of an untimely death.

Here's the part I fear. I am not trying to offend, denigrate or downplay the importance of cancer treatment.

But understand this: the number of support groups for Ms T is zero.

And what about research funds? Ms T isn't on the research list (except for one or two students that have her in their PhD folios).

Auto-immune diseases get about one-third the NHMRC research funding that cancers get – and only seven disorders are listed in the funds. Cancers are also much bigger on the charitable funding league table than auto-immune disorders. (An aside, nothing to do with me or Ms T: zero for research into psoriasis? How come?)

And yes, auto-immune disorders can kill, and their treatments can kill.

And finally, there's this. Quoting from its Website.

The Chris O'Brien Lifehouse at RPA will transform cancer treatment for Australians in an environment thriving on discovery, research and uncompromising care.”

I'm all for an environment that improves on Gloucester House. It's uncompromising brick, really. It's too brightly lit to be thought of as “stygian”, but somehow it manages. Whereas Lifehouse is a brand new steel-and-glass wonder and even has its own charity shop.

Ms T and all the other auto-immune patients won't be there. Lifehouse is for “everyone living with cancer”. And only those.

Somewhere in the Byzantine world of charitable administration, there's a soulless automaton, a gimlet-eyed executive, an oxygen thief, the kind of person whose boast – look on the website – is that the place gets off the ground by moving the bloody executives into the building.

Or, more likely, more than one such person.

So: a committee of gimlet-eyed executives, soulless automations, oxygen thieves – let's just call them professional administrators – have made a decision. 

The non-cancer patients don't make the journey over the road to Lifehouse at RPA. That the "environment promising uncompromising care" draws the line at chemo without cancer.

The care will continue. Either Ms T and her fellows will be farmed out to other hospitals – think on that, ye who manage the health budget, not to mention that some of the people we know don't have someone (me) handy to do the driving for them – or RPA will have to prep a few day clinics to handle chemo patients. Or Gloucester House will land back on RPA's budget anyway so it can deal with the people unwelcome in a steel-and-glass tower.

My late friend Helen Dancer would, if needing to hobble into a chemo suite on her sticks for methatrexate infusions, be turned away from Lifehouse. As will Ms T – we already know, because her specialists are trying to make the alternative arrangements now.

My little rant here is not directed at cancer patients. You don't get to fifty years of age without walking behind coffins, knowing people fighting the cancer fight – or, in our case, finding yourself on nodding terms with regulars in the chemo suite. Ms T and I fret about some of those: why is X no longer showing up on First Tuesday of the Month? Is he in remission, over at radiotherapy, or dead?

It's directed at the kind of administrator who could take $150 million of government money plus another $110 million of charity dollars, and make a decision that turns the rest of the Gloucester House chemo load away at the doors.

The small pittance that I can spare to charity will not go to Lifehouse.

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