Understanding the tremors, and thanks to Amy Gray

Before I talk about tremors, I want to pay tribute to someone I know only on Twitter and through her writing: Amy Gray, @_AmyGray_ who penned this on the subject of Belle Gibson:

Belle Gibson is only the latest in a long line of hucksters peddlingbad science

Amy's understanding of both illness and society staggered me. Here are some particular gems:

“They keep peddling it because we keep buying it, making it a profitable industry”, and

“the one thing they have in common is answering the demand for personal experience over evidence”, and

“The science community has been slow to see the value of open and plain communication, helping people understand complex problems and solutions”, and

“Part of it is our desire for the simplicity of order returning, a happy ending, quick transformations and, more troubling, inspiration”, and

“a sob story sells a product better than a true story”, and

“a public that assumes someone with cancer and facing their end is automatically filled with wisdom and revelation. Instead of healing or dealing a cure that is often worse than the disease, we expect the sick to dance for us”.

Go and read the piece: it deserves the clicks.

From the bottom of my heart, thank you. You encapsulated so many things that trouble me, so neatly and so concisely, as to put me in awe of you as a writer.

Back to the tremors. When Ms T gets them, it's not a slightly flappy hand. It's an extreme hand-flap, accompanied by an arm swinging through a 45-degree arc, combined with general loss of balance and buckling legs, and it has a name.

Chemotherapy-induced peripheral neuropathy, CIPN for short.

We didn't know we should expect it, and that's a problem.

Right now, chemotherapy is dealt out by disease, and after five years of caring, I've decided that this is a mistake.

If you are on chemo for cancer, one of the functions of the support services is to tell what chemo is going to be like. If you're on chemo for your immune system, like Ms T is, it's dealt out by other specialties, the support services might be lacking …

And nobody outside the cancer-circle might remember to tell you things.

The thing is, non-cancer specialists might remark on peripheral neuropathy, without ever realising that they need to tell the patient that it might be A Thing. Whereas I'll bet an oncologist – or at least a cancer support person peripheral to the case – everybody around cancer will the explanation down pat.

Because it's not specific to cancer: if you get chemo, for whatever reason, you get the side-effects.

Nobody ever warned us about CIPN because that's not on the mental checklist of Ms T's specialists. I had to Google it up myself, to find out that it's actually a common side-effect.

The separation of treatment-by-disease is behind this, because the people most familiar with the side-effects of chemo are over in the cancer ward.

But dealing with a sudden case of terrifying drug-induced incapacity in a partner is not on the list of things a gastroenterologist or (mostly) an immunologist.

And if you have no dedicated support group charity to inform you, you have to find this stuff out without help, which is dumb.

So okay, the next time Ms T gets a dose of the tremors – trust me, it's terrifying – I'll know why. But some other patient, some other carer, should not experience CIPN as a mystery.

But as long as chemo is separated into ghettoes by disease, that won't happen. Some people will get better information than others.

Respite

The evening was wonderful. The little show that Helen Perris put on as part of her Pozible album-crowdfunding campaign was a treat. Thanks, Helen.

When I got home and into bed last night, Ms T felt too warm. It passed, but you'll understand that given her suppressed immune system, fever is a constant threat. The last fever landed her in hospital.

This, I hope, will partly explain my reluctance – resistance – to being separated from her, a feeling I guess other carers might share, or at least understand.

So why was I out of the house?

For some months, the women in my life – Ms T and someone I've called “Sarah” in this blog – have been lobbying me about taking a break. They talk about “respite”, and we've talked for months about what form that might take.

That's why I was at Helen's concert, rather than at home: Ms T learned it was happening and sent me out of the house, brooking no argument when I began getting cold feet.

My fear of a fever should be enough to explain my reluctance, but it's not.

There's also that which terrifies me to think, let alone to type. “Respite” has an undercurrent, an echo of the future reaching back to chill me. It's a rehearsal of the future I fear, the reason I cling so tightly, the day when I go somewhere alone because I must.

Other carers, I hope, will understand: “Can't you take a break?” – “No”, because we're superstitious that mere absence will bring a crisis, that we're fearful that the crisis isn't next year, but now.

That the words “taking a break” feel like the beginning of the longest break of all.

“Taking a break” means breaking a link to the past and life that once defined Ms T and I.

Across the road from The Newsagency is the Victoria on the Park, where our elder son danced in Ms T's womb while I worked the desk for early-90s Sydney bands and we would taxi home at 2am to sleep until midday on Sunday. A pang of nostalgia is surely to be expected.

I loved the performance, and I managed to keep my tears and my fears to myself. There was no crisis, and this morning's breakfast pancakes look nearly perfect.

Perhaps respite will do me good; I just wish it didn't hurt so badly.

Helen Perris at The Newsagency

Your love will be hard, and I'm the bastard who says so

Mel*, we only know each other on Twitter, and I already know how it's going to be.

I really hate being the bastard who says that, when there's going to be an optimistic chorus spouting bullshit and promising that positive thought can defeat disease.

Optimism is seductive and necessary, but so is truth.

The thing is, as you've already discovered, the kind of mind that produces the up-vibe “I will survive!” literature that infests our world, seems to think that chronic and sometimes terminal illness can be slotted in right next to supermarket tampon ad images.

I'm the bastard with my greatest love's Death Note next to my life and my heart. I sympathise even as I hold my dearest against the future. She understand and redirects her tears to you.

We understand that the photos in the hospital literature lie; we know that the glorious promises embodied in steel and glass and genes and research and money will save lives and families – in the future, but not our own.

We resent how it turns out – but that's resentment of life and circumstance. Not of people.

You, like Ms T, are a patient, not an abstract. You've just had your future invaded by the blitzkrieg of diagnosis; a genie reached out a hand and tore your life's to-do list to confetti.

There will be days you cry. You will weep and rage, and at times you'll fly off the handle at those you cling to.

And I'm the bastard who says this. It's so bloody hard: you cannot hold your place in the saddle when the lance strikes your breastbone.

You don't forfeit love because you lose your rag sometimes. We on the receiving end know that you're only releasing a couple of colts from a whole herd of horses, stampeding over your life, health, ambitions, hopes, plans, love, and future.

It hurts to be on the receiving end. I know: Ms T hurts me terribly at times, and sometimes I flare, but the storms always subside.

Our sons have been bloody rocks. The elder was in his HSC year when the maelstrom descended; this year he qualified for honours, and wants to pursue the uncertain life of the scientist. He still will drop everything and sprint at the least word from Ms T, as will his brother.

We, the carers, we who fell in love: we still hold in our hearts and imaginations the beauty we once dared not touch. We loved, and we love.

Illness is merely a bane-companion. We who love are entangled; like photons, our hearts beat with the hearts of those we love, our state depends on your state, and our only wish is that across the long, empty spaces of the universe, you will return to us.

* @Dr_Mel_Thompson, with a recent MS diagnosis, gave me permission to use her real name. I appreciate her decision and honour her bravery.

To hell with “diversity”: try not being a dick

As a framing for a debate, “diversity” is a disaster. I'd like to go back to calling prejudice and exclusion by their real names, and abandoning the “accentuate the positive” crap pop-psych.

Why? Because “diversity” is a fluffy term that lets the debate get framed by whoever is speaking.

After Linus Torvald's – whose work I admire, and whose personality is such that I wouldn't buy a beer to put out his hair if it was on fire – pratful keynote at Australia's Linux conference went all over the world, he “explained” himself to all who might listen. I link to Ars because the organ I work for, The Register, wasn't listening at the time.

Which is fine by me, because Linus' self-explanation looks at the problem from the wrong end:

"There's a lot of talk about gender and sexual preferences and race, but we're different in so many other ways, too” is how he tried to flick off the question of diversity.

There are two problems here: Linus' attitude, and the reduction of prejudice, exclusion and abuse to a question of “diversity”.

The two are conflated, because it's so easy to accept a particular framing of a question – or to exploit it, if you're cynical enough – and not question the framing.

My simple two-part answer to Linus and the whole world that uses weasel words:

“Diversity” defines only who you include.

“Prejudice” defines who you exclude.

I consider this an important distinction. There's no point in arguing “we're diverse because we include W and X”, if you're still prepared to accept that your community will exclude “Y and Z”.

There's no point in saying “we have a diverse community” if that “diverse” community will still pile on women, gays, Aborigines, or anyone else your “community” designates as an outsider.

And pleading “diversity” as an excuse to let yourself and those around you practice exclusion is exactly why I reject the “diversity” framing.

It's not about diversity, it's about not being a dick. 

Solar suppliers: get serious

I am a believer in solar power. I'm also an owner of solar power, and I run a business on it.

When I say “the supply side of the solar power industry in Australia is a sad joke”, I say it from a position of intimacy and dependency.

I'm not some right-wing nut-job trying to undermine the industry. I want it to work, and I'm not happy with carpet-baggers, snake-oilers, and passing profiteers stuffing it up.

I have spent a week trying to source critical equipment for fast delivery, on the Internet and on the phone, and I have failed utterly.

Last Friday, a lightning strike destroyed two 48V inverter-chargers at Bunjaree Cottages, which runs on solar power. Since then, apart from discussions with the insurer (Elders Insurance, which is handling things very well), I have been trying to find emergency replacements for the inverters.

The solar equipment supply-side in Australia is a joke.

My options are to buy cheap stuff from overseas with an uncertain delivery date; the same stuff from Australia marked up by multiples of its overseas price with a five-day delivery time; or high-quality like-for-like replacements from America with a two-week delivery time.

Not to mention the suppliers who promise call-backs and don't.

Not to mention that some of those companies won't provide prices online: they force you to phone them for prices, then they don't call back with the prices.

Not to mention the other companies that advertise products on Google, but won't actually provide the products unless you buy a whole system.

And so on.

Electricity is mission-critical for everybody, and for the solar industry to ignore this is plain stupid.

The utter lack of industry discipline means that everybody is left to do their own thing, and the suppliers do it badly with a casual disinterest in their customers' requirements.

When the requirement is “electricity”, that casual disinterest is going to bite the industry's arse, big-time.

I am not going to name individual companies, because frankly I have not found any solar supplier in Australia that gave a cube-root of stuff-all about the mission-critical nature of what it sells.

I would have happily paid a premium for next-day delivery of what I needed, and I could not even manage a same-day – oh, by now, same-week – quote. Which makes it impossible to finalise my insurance claim and actually get my solar power back online.

Don't bother recommending names to me: I've called or surfed them all, devoting about 20 hours in the last week to the task. I don't want your recommendations, because I've already seen them on Google, asked if they can deliver to my requirements, and been told “no”. 

There is a plaudit to be given. My Honda Eu6500 backup generator has run like a dream, 24x7. Thank heavens. 

The abandoned copayment idea was stupid anyway

The assumption that distorted the government's frankly stupid and now abandoned position on copayment is that GP visits are (a) discretionary and (b) about poor people.

So I'll present a standing, constant and continuing inefficiency in the health system that demands “six minute medicine” and could be solved quite easily.

I won't reiterate Ms T's entire medical history: it's a chronic immune-system disorder that demands lots of specialists, lots of drugs (some nasty), and – pertinent to the GP copayment debate – lots of repetitive prescriptions.

It's the prescriptions that are relevant, because if your only reason to visit the GP is to knock off this week's list of new prescriptions, the visit will fall under the “six minute medicine” heading.

A typical exchange might be:

GP: “Hi, what do you need?”

Ms T: “Prednisone 5 mg and 1 mg. Ursofalc. Atenolol.”

GP: “I've read the letters from the specialists. Everything seems to be going well.” (While he's typing the prescription details and, if necessary, calling the PBS people for authority prescriptions like Ursofalc.)

And she's out the door.

Some of her medications can't be prescribed for more than a month, which means a minimum of 12 “six minute” appointments each year.

There's no point in him turning it into a long appointment to do “preventative medicine” things. She has seven specialists looking after her, three of them professors, and the GP is just a prescription-machine.

Oh, yes. With seven specialists, there's the other six-minute medicine thing that happens.

GP: “Hi, what do you need?”

Ms T: “My referral to X expired.”

GP: (writes new referral)

None of this actually needs the GP: all of these “six minute medicine” appointments are systematic. The rules demand a GP appointment, regardless of whether the GP has any agency in the outcome of the appointment.

Also: there are certain drugs whose rules limit their prescription duration to one month. For example, the pain patches that are replacing Ms T's former addiction to Endone.

There's a necessary 12 appointments per month. I don't disagree with the rules, but those 12 appointments aren't created by the patient, they're created by regulation.

If the regulations don't change, chronic patients and GPs live in a Venn diagram of routine drug prescription, controlled drug prescription, and specialist referrals.

Over to the government proposal: the idea of reducing GPs' rebate for all of these routine visits was plainly stupid or worse, deliberately malicious.

In either case it was inefficient, because it would encourage turning a routine brief “sign this” visit into something longer that would get a better rebate.

PS. A grand a year on GP copayments would pinch us, but not cripple us. But an awful lot of chronic patients are seriously poor, and I don't see why they should be punished for needing a new prescription.