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.

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