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.

Escape from ICU

If you haven't ever been in hospital for a long time, there are things might seem hard to understand, like why Ms T once staged an escape from ICU.

By now, she's a little bit of an ICU veteran, with three visits. But I'm talking about life when she wasn't accustomed to that world.

She had already spent nearly three months in Royal Prince Alfred – on level 9, the gastro ward, because that's where she first landed with a hard-to-diagnose illness that disabled her liver and gave her a stomach of ulcers (it turned out to be that her immune system had shut down important blood vessels).

Our home in Lilyfield is almost visible from RPA, if you have the right view. You can't see the house, but if you have enough time, and the right angle, you can see the trees and work out where the house is. As soon as Ms T was mobile, with “Skinny Marie”, her name for the IV-stand-on-wheels, she would spend time in the sun-lounge on Level 9, trying to work out where “home” lay.

Her chief landmark in those days was the Anzac Bridge: large, unmistakable, and a pointer to the cluster of trees, with a few insane palm trees poking through, that told her where we were.

We were lucky, in those days. With my mother alive and living with us, I could spend a lot of time at the hospital, by her side, letting grandma watch over our teen sons, working with mobile broadband. But I always had to go home in the end.

As she reiterated to me tonight: “I always took 'skinny Marie' to the sun-lounge before I went to sleep, to look at you and say goodnight.”

Then there was one of the ICU visits. 

We were away in the Blue Mountains when she fell ill, with sudden and terrible pain. Katoomba Hospital was mystified by her blood tests; I told them to call RPA's Gastro-Enterology unit, and RPA demanded that she be dispatched by ambulance – ignoring a couple of other teaching hospitals on the way. (Things to love about Australia's health system.)

Ms T had a liver infection; her condition was assessed as critical; she was put in ICU immediately.

The next night, hallucinating on painkillers, she managed to escape ICU.

Knowing what ICU is like – and how many machines connected her – I have no idea how she managed it. Because she was spaced and pie-eyed she's never been able to explain it properly, and ICU was apologetic but completely without an explanation. No matter; it ended well.

Because she phoned me, from Missenden Road. The conversation wasn't one that I care to relate, but I talked her back down to ICU reception, at which point I heard another voice on her phone utter a swear word and call for help.

And after many conversations about the incident, we realised what drove her so much that she could take herself out of the secure part of the hospital and find herself on a road, in a hospital gown, trying to hail a taxi.

She couldn't see home. ICU wasn't like “Level 9”. There was no “goodnight my love” that she could utter while looking towards our home: only the lights, curtains and machines. So she sought some place to tell us she loved us all, and wanted to be home. Just as she'd done every other night she was in hospital.

I talked to her on the phone, somehow sorted the things she could see from the hallucinations, and guided her back to ICU reception, when someone swore, took over the phone and told me to visit in the morning, and apologised. And all was well.

It's hard to explain how it feels, to be loved like that. I can only hope I can deserve it.

Good news at last (and thank you for keeping me sane)

Ms T has, as you may know, suffers from an immune disorder requiring lots of heavy cytotoxins (as well as surgery back in February that left a seppuku-scar, a couple of tumours, now gone, that frightened the daylights out of us, and other stuff).

And a great many people have said so many wonderful things to me about my previous posts, that it would be unfair to keep good news to myself. You may not know this, but it is a jack under the flat tyre of depression to know that other people understand.

So. We’ve had a little string of bits of nice news, and in my appreciation of your previous kind words, here they are.

“That’s not a cancer” – a worrying lesion gets a specialist’s cold-shoulder.

“The celiac bypass is perfect” – the surgeon following an ultrasound examining the 30cm of leg-vein that’s shunting from the aorta to the celiac artery, supplying Ms T’s liver and stomach (it may have been better if he hadn’t said to himself “damn I’m good” while looking at the pictures).

“Liver scores are good, and your kidneys are picking up” – today, at the renal specialist.

In fact, the renal said, the current round of mustard gas – sorry, cyclophosphamide – seems to be doing what it’s supposed to be doing: making the patient as sick as a dog, slaughtering the immune system, leaving the patent subject to random infections, leaving the patient defenceless against tumours that normal people wouldn’t ever know had been there because they’re dealt with and so on.

And keeping her alive.

The blood vessels remain open; the arteries that remain to her remain open (the carotid isn’t coming back, but there’s collaterals built around the blockage, thank heavens!).

The renal specialist was the most surprised, which surprised us. After agreeing with my general opinion of surgeons (“So smug I could punch him.” “Oh, everybody wants to punch surgeons, that’s how they are.”) she said to my wife, “Actually, I’m surprised at how well you’re doing. I thought you’d be on dialysis by now. If you survived.”

She did. And there’s my Christmas, along with taking care of Bunjaree Cottages for our guests (if you want to head to the Blue Mountains, we’re http://www.bunjareecottages.com.au here and there are still vacancies for the long school holiday!) and writing when there are people to write for, and doing GIS when it’s there, and wondering at life when there’s a moment to spare.

And here, as I said, is my thank you for the dear, kind, gentle and loving souls who have helped keep me sane this year. We – me and Ms T – both know what such things mean in the hard days and sleepless nights, and our appreciation is hard to adequately express. Thanks!

NSW government: killing patients with cuts

Those who know me - either in real life or on the Internet - will probably know that my wife has a chronic illness that keeps us intimately familiar with the inside of hospitals.

Describing things in full would take an essay, but the short version is that she suffers from an immune system disorder that has knock-on effects pretty much everywhere: at the last count, she's a regular with six specialists (immunology, gastro-enterology, vascular, renal, gynocology, dermatology).

It is, therefore, a little distressing to read in the Sydney Morning Herald that the austerity fanatics in the NSW want to add hospital outpatient clinics to the list of things they want to cut.

This is one of those moments where the story isn't in "the story", it's in the sidebar to this story, and the sidebar is only in print, not online. Here's what it says:

Some outpatient clinics to be cut, forcing patients to see specialist doctors in private rooms at a cost of about $300 a visit. - Sydney Morning Herald, News Review, Page 3, September 29-30, 2012

A point about the story itself: if the Herald thinks a private specialist visit only costs $300, it's completely deluded; first, because the private specialist doesn't have to constrain charges to the officially scheduled price; second, because those visits often include pathology. Shifting the path from the hospital to the private clinic means that service is also private.

I guess we'll manage somehow. We'll have to. But how many people are going to die because they can't afford the gap between their insurance and the specialist?

The shift is, however, in line with Liberal party philosophy: replacing the public system with the private is an ideological idee fixee for the party. If that kills people, so be it.