Wednesday, February 06, 2013

A word to the wowsers: try Ms T’s life before you rule it

Here’s a genuine list of things to give up, mentioned in the space of a fortnight. 

  1. You really need to get rid of the cigarettes
  2. We need to get the opioid painkillers down
  3. Drink less
  4. Don’t overeat
  5. Your potassium is a worry

Now, as to number (4), Ms T is not overeating. Only by dint of paying attention to cramming in extra calories has she stabilised her weight at a snip under 50 kg. Considering that in the last two years, her illness has taken her to 31 kg, at which point she could not walk unaided; or that in the last twelve months, her average has been around 40 kg, which is still weak, we are delighted at a 50 kg weight and gave the idiot nutritionist a fairly terse response.

But pay particular attention to the opioids.

She has no painkillers available to her except opioids. Paracetamol has an instant and devastating effect on her liver, for reasons nobody quite understands – two days of it will take her to emergency. Anything anti-inflammatory – say, asprin or ibuprofen – is anathema to her immune system disorder (the effects are nearly instant).

No paracetamol; no asprin; no ibuprofen. What’s left, to someone whose fourteen-inch surgical scar remains painful? Oh. Opioids. Wine. There is nothing else.

Because of the way that prescription rules are managed, there is a problem: someone at the far end of a telephone from a doctor, working to a call centre script, has to approve the GP’s request for opioids. Which means we can recite the high-speed script that the GP tells the telephone:

“Severe debilitating pain not responding to non-narcotic analgesic not due to cancer less than twelve months’ duration.”

(Pronounce it with no gaps between the words, like he does from long practice.)

Those last five words – “less than twelve months’ duration” – ended this month, but not the pain, and every other word of his script remains true. Which means, from now, that we are subject to a regime that doesn’t recognise her particular constraints, and she lacks a cancer support group. 

No other painkiller is permissible (and not once did she ever fit the profile demanded to reach a hospital “pain specialist”).

Try it yourself, the wowsers whose moral stance would get all opioids off the list for all but the dying (and dying she is: merely, may it please my fortune, not this year or decade). Try it: you have only one painkiller available to you; your pain is debilitating (which I will attest. I don’t even do painkillers for headaches, if I can avoid it; call it a psychosis of my own; Ms T's pain is cry-in-the-night stuff).

But you aren’t permitted painkillers, because there are no alternatives to the 60 to 80 mg of oxycodone hydrochloride each day that makes Ms T able to function (and she does function on this dose, reduced from six months ago, all the way up to performing OCD-level refrigerator-cleaning for our business).

And – added to the hounding of drug-wowsers, we are enjoined to drink less than our shared nightly bottle of red; ordered to relinquish nicotine; instructed as to diet by nutritionists with less experience and education of food than Ms T has acquired by her professional interests …

…And all the time, the big-ticket toxin on her list is cousin to mustard gas. 

I mean this literally: the drug cyclophosphamide is one of the first-generation of treatments developed in the 1950s to try and replicate the effects of mustard gas (nitrogen mustards) on cancers while reducing their toxic effects (by a small amount).

Oh, yes. Cyclophosphamide as an injected infusion is metabolised by the liver. Which was, in Ms T’s case, an organ damaged by her immune system’s attack on her arteries (the others were one kidney, and a carotid that is now completely occluded. That means she’s dead, but for reasons nobody cares to discuss in detail she hasn’t stopped wriggling. Yet) (Honestly, you want to live this life? I’ll give you ten minutes and the high side of the odds, and still will take your money three falls out of five).

Cyclo, which oddly enough turns out to be the treatment she tolerates best, is doing serious damage. The liver likes it, mostly: the stomach goes into meltdown only one week in four; and her immune system is suppressed (not enough, right now: the dosage is going up this month).

The immune-suppression has already been made manifest in two tumours, one on her face, one more intimate. Because, you see, the damaged cells that most people never see, and some people may have to suffer the brief discomfort of the freezer-spray to remove – for Ms T, they run like horses, from “what’s that?” to “get a biopsy” to “remove the Vulval intraepithelial neoplasia Stage 3 RIGHT NOW”.

Now: give me a healthy and comfortable researcher, telling me and Ms T that one her few pathways to nearly-normal function through the pain, that the pathway to function is an evil conspiracy by Big Pharma, and for the greater good of others she must give up everything at once, merely to satisfy a moral argument against everything.

Even though we despise your research-smugness, your data-collection without experience, your anti-something jihad, neither of us can wish our lives upon you. We just want you to get out of the spreadsheet and leave us alone.

If you don’t know “severe debilitating pain” etcetera, you have no standing to pronounce judgement upon its relief. You are no more than a virgin screaming “natural childbirth” over the advice of the anaesthetist prescribing an epidural.

Monday, February 04, 2013

A Question for the Lunar Right: Why so serious?

If there’s one thing I don’t understand about the country’s right-wing complaining column-blog-whinge clique, it’s this:

What the hell soured their whiskey?

To pick a random example, look at Andrew Bolt. In spite of the entire net worth of his TV viewership being somewhat less than a house at Yerranderie with an asbestos ceiling fan, he seems to do okay: the suits, the profile, the income, the News Limited sinecure and so on.

For this, his journalistic output is roughly that of a hobbyist Reddit poster, except without the editorial control.

Bowling leggies on a damp wicket to batsmen with spiked-down feet, this guy is obsessively terrified that he’s being done out of the upgrade from Lexus to Real Mercedes by some academic activist because said activist isn’t black enough. His continual attitude to the world is the bile of entitlement denied, like he hasn't noticed he's rich.

Jesus, Andrew, get a grip. When the repo man comes for the Blu-Ray, come and complain to a world that will ignore you as cheerfully as it ignores anyone else fallen on hard times. We promise not to sympathise, because nobody does. Oh, we'll make noises at the pub, but we'll also bid on your stuff at Grey's.

Or Gerard Henderson. Here, I swear, is the pith and juice and seed and skin of disappointment. In a bottle. With someone pulling a face on the label.

In spite of his obvious privilege, his inside-track to people willing to pay him to write their columns, his long-standing position in the Australian media, and his dignified grey hair …

Gerard has the dog's-bum-lips expression of someone who just found a lemon in his Corona, again! They’ve played this prank since I was in first year at university and I HATE IT! – and nobody ever told him the lemon is the only thing that makes it drinkable, because it’s so much more fun watching him dig with a skewer for the next two hours.

Piers? I really can’t make fun of the preposterous old doughnut. My father died of Alzheimer’s.

Paul Sheehan? Oh, here is a victim worthy. Over the years, he’s worshipped at the alter of magic-water pseudo-science, praised the fake economy of the first dotcom bubble, predicted the collapse of Australian society based solely on the poor rugby teams fielded by GCS schools, encouraged Australia to follow the odious example of oppressive regimes like Singapore, and railed at any and every government that didn’t follow his own insane prescriptions for The Greater Good.

Let me just check, behind that off-milk demeanour. How are you doing, Paul? Okay? Top ten percent? Not left behind with the jetsam of Fairfax’s chronic mismanagement? Haven't flown to London to scratch and whine at the Guardian offices like an ancient Labrador hoping to swap his fleas for food?

Able to command sufficient re-Tweets and complaints to justify your income? So why are you so miserably unhappy with the state of the world?

It’s an enduring mystery, to me. What was, for these and the rest of the vermin brood – whose only prescription, really, is that people below them on the greasy pole of life should sink lower for the Good of The Country – the thing that soured life for them? That made every dissenting opinion evil?

Let's not even start on the country universally acclaimed by these reincarnations of the Whinging Pom: America, life, liberty, and the pursuit of the last damn penny not already claimed by someone offended because they have mere millions while others have billions.

What put the worm in your apple, people?

I don’t earn your income, but life is fun. My wife will die, one day, either horribly or suddenly. But while her tests give us another year, our sons give us another argument, our business gives us another month’s mortgage, we smile and laugh and eat and drink.

Dudes, if I had your life, the biggest problem I’d face in the morning is how to stop laughing. Really. I’d be like a pig with my arse in butter and my face in treacle.

Why. So. Serious?

Sunday, February 03, 2013

To John Birmingham: A ‘bottom feeder of the Web’ responds

“Rather than bitching and moaning about the bottom feeders on the web stealing all our best stuff we should seriously think about stealing theirs. Or, here’s a radical suggestion, even paying them for it”,  writes John Birmingham.

I might take exception to being included among his hyperbolic “bottom feeders” tag, since I have certain bits of expertise beyond being an efficient word-assembly machine, but I’m familiar with Birmo’s diction, so I'm not actually offended.

Instead, I’ll give him four reasons why his suggestion won’t go anywhere.

1.    Publishers don’t want to pay

Well, you might argue that there isn’t the money around for such things.

But a publisher torn between a decent analysis of a difficult technical subject and a three-day Canberra correspondent wet-dream over a poll that’s within the margin of error and, oh, a good analysis of technical data? The poll wins.

Actually, your editor probably can’t even put an accurate value on technical expertise, in an editorial sense. He or she lives in a world where photography is being outsourced to your readers – “join the community! Send us your pics for free!”

The editors can just about grasp that a high-profile economist or demographer is worth money, but why pay (say) $100 an hour for someone who understands the NBN when you can get forty-seven opinions for free? When it takes five minutes of a journalist's time to play the fake-balance game on topics they know little about?

2.    Media don’t want to listen

The best way to publicise a half-truth about technology is to give some kind of exclusive to a mainstream newspaper. I still have traumatic memories of trying to explain to one of Australia’s most respected business columnists that light and electricity do not interfere with each other – and failing entirely.

If anyone on the Sydney Morning Herald’s business or sports desks – and anyone at all over at the Australian Financial Review – had cared about facts at the appropriate time, the FirePower scandal would never have happened. It’s like that, really: once your colleagues are convinced they have the inside information, telling them they might be wrong is a waste of time.

Even easily discoverable facts - such as "no, cybercrime is not a bigger business than drugs" - is ignored in favour of a quote. "Is what he said true?" an outsider might ask. "Not my position to judge", the journalist responds, "It's true that he said it."

3.    Why would an expert want a public mauling?

Imagine, Birmo, that I’m an expert – I mean a deep, serious expert who has put years into a subject – on something like telecommunications technology or climate change. Now, ask me to drop myself into a contentious debate, for (frankly) low pay.

Do you remember a couple of Southern Cross University scientists that took measurements of fugitive emissions from coal seam gas facilities? Let me remind you. Dr Damien Maher and Dr Isaac Santos measured fugitive emissions around coal seam gas facilities in Queensland, and put that data in front of a government inquiry (the submission is here as a pdf:

They caught merry hell for it – from Martin Ferguson (who isn’t a scientist), from industry lobbies (whose objectivity has to be questioned), and even from the Australian Science Media Centre.

And that’s not to mention what happens to an expert if the foam-flecked screaming morons of the far right decide to form an attack pack to bring someone down. Some people seem resilient to this – Tim Flannery for example – but how many experts on any topic want threats and insults?

4.    Who's the expert anyhow?

See, there are plenty of people who pick over this stuff out there on the Web. There is also a near-infinite number of fools, fruits, quacks and crackpots.

The Sydney Morning Herald is currently promoting a "documentary" from 9-11 "truthers". If I took an expert in turd-dropping to the editor who picked that one, and my expert dropped a turd in the editor's coffee-cup, the editor would probably still have trouble recognising the expert's credentials. There would at least be a demand that someone call Ian Plimer to get a dissenting point of view.

I love the idea of introducing facts to the debate, John. Really, I do. You go and convince your editors that they need facts, and I'll happily point you to people who understand them. Sadly, I don't think it's going to happen.