Chemo and Ms T: the background

You know, it occurs to me, courtesy of a Twitter convo, that many of my posts about Ms T's condition have been a little tangential. I've talked about the life we live, and occasionally named the condition or the treatments, but I haven't set down the basics.

So with her permission, I'll put this down so that I have a background to link to when someone asks.

It's an extravagantly-named condition: “Atypical necrotising vasculitis polyarteritis nodosa of the medium and large arteries”. If you're of a medical bent, you'll notice something about that. Every noun and adjective names symptoms and what those symptoms affect, rather than naming a disease.

So let's call the disease “immune system disorder”. In short, whenever Ms T's immune system is sufficiently active, it attacks “medium and large arteries”. It's like you had a kidney transplant and your immune system was attacking the invading kidney – except, of course, that Ms T's arteries are her own.

There aren't so many large arteries left to choose from. Her coronary arteries are just fine, heaven knows how. For the rest? Here's a list.

Right carotid artery – gone. She lives because a bunch of capillaries her body built around the blockage supply the right side of her brain, at about 10-20 percent of normal capacity.

Anterior cerebral artery – gone. If anything blocks one side of her brain, there's no backup supply. She will die fast.

Right renal artery – gone. There's a small collateral blood supply that leaves her with about 25 percent of the right kidney.

Various medium arteries in her right arm and leg – gone. You can't take Ms T's blood pressure on the right, it doesn't register.

Celiac artery – gone and replaced. This was the artery that told us something was wrong, because her stomach and liver failed. That got her to hospital, weighing a little over 30 kg, with broken ribs from falls (I was suspected as a wife-beater until she was conscious enough to defend me!), and toxemia.

Which is why she'd lost nearly every spare kilogram. In our years together, she has been known to complain about her breasts, which are normally a 12DD burden that gives her back pain, but when her body was consuming itself, that extra fat probably kept her alive, since they shrunk to skin-over-ribs.

The only way to deal with Ms T's condition is to shut down her immune system. That means chemotherapy, and the chemical that works best is called cyclophosphamide, and I've documented its effects on this blog here and here, at least, so I won't reiterate it. And it's carcinogenic, which is a nice thing to live with.

Right now? Things are stable. Once, we believed in remission; no more. But we're doing okay, and as I said, the purpose of this post is as a 1.01 for people who need to know the background.

And to everyone who's also on chemo, our thoughts are with you.

The NSW premier: an arrant hypocrite

So: here is the NSW premier, Barry O'Farrel, visiting the fire-grounds, screen-grabbed from the toadies at News Limited:

And here is what his government is actually doing about bushfires, courtesy of The Guardian.

While Barry O'Farrell was grubbing around the ashes of homes in case there was a scorched-but-still-usable vote there, back in Macquarie Street, where the fires will never burn, the gimlet-eyed, raisin-hearted ideologues of his government were cutting the budget of the RFS.

Yep: ensconced in the safe city sandstone of Macquarie Street, the state government wants fewer staff on the strength of the RFS.

Oh, and the RFS budget-cut sits squarely against the Abbott government's cynical decision to reduce the scope of emergency payments – while the emergency was happening.

Logistical strength in the RFS is a big thing. For example: the RFS has created the Remote Area Fighting Teams to stop spot-fires in difficult areas getting out of hand. RAFTs were absolutely vital in keeping the State Mine Fire (still listed here) from becoming a town-destroying monster.

Here is our hypocritical Premier blabbing about backburning while staying silent about budget:

“NSW premier Barry O'Farrell says many lessons will come out of the fire crisis for the state government, but he claims credit for his government's commitment to backburning.

"We've increased it two-and-a-half times but there's still more work to be done," O'Farrell says.”

“More work to be done” on less budget, Barry?

English lacks a cognate for “a face that needs to be punched”. The German will have to do: Backpfeifengesicht. Look it up.

The last joint of the little finger of my left hand

Caveat: I don't have many personal memories of the events outlined below. I have lots of family stories relating the details, but hell: I was only three years old. I have a scar, faint and scrambled images, and a family story.

But the scar that I can still identify on one finger accords with the story, so I'll tell it as straight as I can.

I was, like I said, three years old. The car we owned at the time was a 1959 cats'-eye Chevrolet Bel Air (which I have to confess I still have a soft-spot for, in spite of what happened). The location was a Farmer's car park, I think at Ryde. My mother was inside in the shop; I was with my brother (then aged eleven) and at least one sister, who would have been nine at the time. I can't remember whether the eldest sibling was present at the time.

The game? A three-year-old playing “escape from the car, run to another door, and jump in laughing”. And at some point, someone pulled a door shut, I stuck my hand in to stop it closing, and – because cars of that era were famous for panels that fitted nice and tight – the last joint of the little finger of my left hand was severed.

The narrative now gets scrambled, but roughly: my brother grabbed the whole mess of my left hand, gripped it, and didn't let go. My sister ran to find my mother; and my mother drove us to Royal North Shore.

The hospital's bad news was: yes, the finger was severed. It was only attached by one flap of skin (I can still see where the scar isn't). The good news was that a visiting English surgeon was in Sydney demonstrating a new technique, called “microsurgery”, and had agreed to try to re-attach my finger.

At the time, my father – you were wondering weren't you? Remember, this is before mobile phones, so mum's priority was “get to hospital first” – was a civil engineer supervising Sydney-city construction sites. Once mum had news, she phoned him, and told him to come to Royal North Shore after work, because there was no point in him rushing away while I was in surgery.

So: my father arrived at about 6pm, met mum in the waiting room, and was there for a very smug surgeon to announce that yes, they'd re-attached my finger without problem and all would be well.

Later, the bill was presented: ₤1,800 in 1963 currency. According to the Reserve Banks' inflation calculator, this amounts to:

$46,329.94

I set this on a line of its own because … look at it. More than 45 grand.

As Dad said at the time (by family report): “Eighteen hundred pounds for the last joint of the little finger of his left hand? Just cut the bloody thing off again!”

And the health insurance fund didn't pay for it, because it wasn't on the list.

What I do remember, because I was 13 years old, is that there was a small family celebration in 1973, when Dad announced that he'd made the last payment for the last joint of the little finger of my left hand.

In the interim, I learned piano for a while; learned guitar for a much longer time (I still play in spite of the twinges of arthritis), and learned to make a living as a writer with a most enviable typing speed. I'd guess that to me, the last joint of the little finger of my left hand has been worth way more, over the years, in both enjoyment and money, than fifty grand.

So, thanks Dad.

And thanks, Australia, that the healthcare system that came much later than 1963 has kept my wife alive through a long illness, surgery, and immune-suppressing chemotherapy, without bankrupting us.

And I will spite bile on the American-inspired right-wingers that would deny healthcare to anyone. Because they're trying to make sure that small incidents turn into huge debts, to the benefit of nobody but the private owners that lobby that healthcare be turned over to them.