23 Nov 2017

John Bluck on the power of humanity in high-tech medical care

From John Bluck writes, 2:45 pm on 23 November 2017
RNA Nanoparticles in Cancer Cells

RNA Nanoparticles in Cancer Cells Photo: National Cancer Institute

In Sickness and in Health – Episode 3

High-tech medicine might be fun for the professionals but it creates a strange, strange world for those on the receiving end. You’re surrounded by machines that cost more than you’d earn in a lifetime and that work on your body in utterly mysterious ways.

Is there any other experience in my life quite as weird as this one? Attacking something so serious and life-threatening, with a treatment you can’t see or feel or find anything familiar with, is like nothing else I know. Radiotherapy belongs more to the world of science fiction than a visit to the doctor. It’s just about as exotic and baffling as the world of Star Wars, full of machines and creatures you’d never seen before.

Happily though, this weirdness is offset by a couple of volunteers in the waiting room dressed in daffodil yellow T-shirts, wandering about offering tea, coffee and chat on behalf of the Cancer Society.

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Photo: Pixabay

A couple of giant jig saw puzzles are provided to distract us while we wait. They occupy a few patients who come and go but don’t linger long. And I don’t blame them. One puzzle pictures the Dunedin Railway Station, hundreds of almost identical pieces of gray stone and flowerbeds that only a forensic scientist or someone from the Historic Places Trust could reassemble. The puzzle sat there unfinished for weeks.

There’s a pile of old fishing, fashion, house-proud and garden-perfect magazines to thumb through and a TV overhead, mercifully muted. We don’t need to be watching hospital soap operas on screen. They’re being played out in real life all around us.

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Photo: Pixabay

I hope that we never get to the point where treatments like this are offered online, via remote control, because as the technology becomes ever smarter, the human component becomes ever more crucial if healing is to happen. And the only thing that keep all this human is the staff who administer these exotic cures, as foreign as these remedies are to us, as animal entrails and alchemist’s potions were to our forebears.

Some of the humans we don’t see. I didn’t meet the physicists and specialized technicians who service the radiation machines that can be temperamental and fragile beasts. Maybe these staff allowed to be grumpy behind closed doors. But no one else is here.

Every day I talked to oncology nurses and radiation therapists who welcome you, walk you through the treatment plan, counsel you on coping with the after-effects, but above all else, encourage you relentlessly to stay as cheerful and positive as they most obviously are themselves.

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Photo: Pixabay

The chalk boards at the entrance to each treatment room say it all.

Welcome to this Marvellous Monday, this Terrific Tuesday; the hyperbole mounts as the week wears on, and wears you down, all the way to Fantastic Friday. You need the weekend to recover from this unwavering good humour and readjust to the usual mix of hope and despair we live with in the world outside.

I’m at a loss to know where this determined optimism originates. It seems to be built into the very roots of oncology care, and the staff who practise it have learnt to make it their own. If they do harbour any pessimism, it’s kept well-hidden. Clearly you’re expected to be always hopeful and cheerful in this job, however lousy you might be feeling. And that spirit is as valuable to patients, as all the technical skills combined. Because that spirit is contagious.

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Photo: Pixabay

This optimism seems at odds with much of the rest of the hospital culture. It’s certainly not reflected in the signage that adorns every corridor and bathroom wall, with messages designed for adolescents’ schoolrooms rather than adults living through crisis times. Wash your hands with soap for a minimum of 20 seconds. Please dispose of paper towels in bins provided. No photography or audio/video recording. Who in their right mind would bother to try?

Far from the unnecessarily explicit, some of the other signs are plain baffling. Double flush the toilet if you are having both radiation and chemotherapy! And the slogan to promote Prostate Awareness Week asks, “How blue will you do?” I’m still trying to decode that.

Where do I find a metaphor to fit this whole experience of being diagnosed and treated for a disease I’d never had to talk about before? I still can’t go past Alice in Wonderland. Because I really did feel I’d been dropped down a rabbit hole. Not filled with Mad Hatters and crazy people. Anything but. The sanity of all this is mathematical and clinical.

And this underground adventure zone is not a twilight world. The colour palette of this new place was unlike anywhere else; damped down somehow into subdued pastels, as if to camouflage the violent intensity of energy being let loose into your body from those machines.

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Photo: Pixabay

It is a world filled with technology as complex and futuristic as a space station.

But it connected me to a community of people I’d never would normally have any link with at all, yet with whom I forged over the months, a quiet, unspoken bond built on enduring something life-changing, hopefully life-saving, together.

And best of all it introduced me to a team of medical professionals who could make a lot more money working in other parts of the health industry, but who stick with this oncology care, work against the odds, walk with patients in often desperate circumstances, and yet somehow stay cheerful, determinedly so, all week long, right through to Fantastic Friday.

Their optimism stays with me still, collectively forged and held as it is by a whole team of medical people. It helps to counter my private instinct to hunker down alone, not to get my hopes too high, but simply hang in alone and keep on keeping on.

Aoraki/Mt Cook

Aoraki/Mt Cook Photo: Flickr / Nathanael Coyne

A friend of mine joined a group to climb Aoraki Mt Cook recently. He found it an exhausting experience, much of it consumed by reducing your focus onto the footstep of the climber in front of you, putting one foot in front of another. Much of my treatment felt just like that, my world reduced down to the most basic tasks.

But the professionals who cared for me kept reminding me, as did my family even more powerfully, that I don’t have to do this by myself, anymore than you should try to climb mountains alone.