Today I’ve been talking to a journalist from the Sunday Telegraph. She’s doing a series of stories about the extra challenges faced by cancer patients who live in the bush. She found this blog and gave me a call. I think it’s great the Tele is doing these stories. In New South Wales, the further away from Sydney you live, the more likely you are to die from your particular cancer. If you don’t have a car, live in a small town with little or no public transport, if you have poor literacy skills or no Internet access … even if you simply have problems keeping track of appointments, your outlook can start to dip. For those needing to travel to Sydney for treatment, the whole business of organising and paying for transport and accommodation can be overwhelming. Some simply give up. This is an issue that needs airing. In a rich country like this, cancer survival rates shouldn’t be so affected by one’s address.
For me, though, distance has not been such a tyranny. I have a partner able to take time off work to drive me back and forth and a friend in Newtown offering not just the front room but delicious dinners (and the company of two gorgeous kelpies). I have, though, often wondered how well I’d be coping if even one or two pieces of my support jigsaw were missing.
Anyway, it’s all making me think of Arlo Guthrie (son of Woody) talking about how there’s always someone worse off than you. You might have cancer but at least it’s treatable. You might have a colostomy bag, but what about the blind man with the colostomy bag (another of my stoma nurse’s patients)? There’s always someone worse off, says Arlo Guthrie, until you get to the last guy. Just think about him for a minute.
I’m typing this with one finger on an iPad, in amongst the kelpies at Larissa’s house. I’ve got to have one last chemo session tomorrow. By 3pm tomorrow, I’ll officially be in remission!
Colostomy chic. Who would have thought it was a thing? Well, it is. I have to admit that before I woke up out of an anaesthetic fog with my own, I’d associated the colostomy bag with the old and doddery. Since then, it’s been a sharp learning curve. There’s a world of Crohn’s disease, ulcerative colitis and all sorts of cancers out there, hitting people of all ages and stages. Some of these are fashionable young women, and they’ve taken to the Internet with their thoughts and hints and tips. Mostly it’s all about how to dress to obscure the outlines of the bag: lots of ruching, ruffles and artful drapery.
But some have taken colostomy chic a step further, choosing the “out and proud” route to overcoming shame and stigma. Last week, one of the comments on this blog drew my attention to Bethany Townsend, a 23 year old model who posted a photo of herself in a bikini on Facebook. The pic went viral – in a good way. Then there are people like rock-climbing blogger Heidi Skiba who has an ileostomy (where all of the large intestine is removed, not just part of it as in a colostomy). Photos on her blog show off an outdoorsy life in full swing, as well as the occasional pic with her bag in plain view.
It isn’t that long ago that the colostomy bag was one of life’s great unmentionables. But that’s changing rapidly.
Lee, my stoma nurse at Westmead, gave me a rundown on the history of the bag along with practical instructions about how to use the ones she was waving under my nose. She said it was only in the 1950s that colostomy bags became widespread. One of her favourite patients was an older man who’d had surgery as a teenager. There were no colostomy bags available at the time, so his stoma (outlet) was simply wrapped up in dressings, which his mother changed for him. When a rubber colostomy bag became available, his life changed. He became a bank manager and lived “happily ever after” (he recently died of an unrelated problem). Still, it would not have been easy back in the 1950s and ’60s. The community nurse who visited me last week (whose daughter’s boyfriend is working for Angelina Jolie, entertaining her kids – how’s that for three degrees of separation?) said that those old rubber colostomy bags were a bit stinky. Unlike today’s light, waterproof versions with their own little charcoal filters, the old versions didn’t stick to the skin; they were held on by a belt, and the situation was always in danger of becoming iffy. One solution was the use of a black tar-like substance that people used to slather over their stomachs to get a seal. This was messy.
So I’m glad that having had the misfortune of losing a length of my large intestine, I have at least had the good fortune of arriving at a time when colostomy bags are well designed, when the Internet is a portal to “ostomates” around the world and there is such a thing as colostomy chic.
Meanwhile, I continue to feel fabulous. I keep forgetting that I’ve got one last chemo session next week; that I’m not out of the sick-bay yet.
And – just a quick and inadequate thank you to family and friends who just keep on coming with care packages, flowers, cards, soup and – the latest – fun hats and skeins of teal and purple wool!
At the Blowholes, a popular fishing and camping spot north of Carnarvon in WA, there’s a sign that says: “Yes, you may eat the oysters.” I’m assuming it’s still there – it was in 2005 when I took Steve to see one of my favourite places on the planet. At first it looked like one of those signs that give you a great big list of things you can’t do. But this one just said go for it, and gave hints and tips. Prise the shell open with a bread knife. Swish the oyster round in the sea to rinse it. Chew and swallow it, savouring the blast of pure ocean feeling. Or something along those lines.
Today I’m thinking about oysters and impermanence. Last week, it was a year since Dad “went”. I like that euphemism. He went somewhere, not sure where, but the fact is that he is gone and isn’t coming back. Not the way we knew him. I think of his arm muscles. He used to pump them up to show them off. The blood coursing through those veins. The tattoo on his bicep with the pink love-heart and the word “Yvonne” in a scroll across it. Just before he went, I looked at that tattoo, so familiar all my life, and noticed that it was hanging on loose skin and you could no longer really tell what it was. That was once the strong arm that changed tyres, drove trucks, prised oysters out of their shells from the rocks.
Nothing (nothing that we definitely know about) is permanent. Everything is coming and going, coming and going, coming back in different form, from a living body to ash to a living body again. There is no permanence, but there can be repetition.* You can’t go back to how it was, but you can do things again. It won’t be like the last time but it’ll remind you of the last time. You can eat oysters again. That’s what we did last Wednesday when, in honour of Dad, we bought a towering stack of seafood at the Shelly Beach golf club, with a view out over the sea, this time the Pacific. Most of the seafood, I’m sorry to say, was pretty ordinary. There is nothing like growing up on the coast of WA to spoil you forever for fresh prawns and lobsters (we called them crayfish or crays). But the fresh oysters, served in their shells, were plump and the taste was not nostalgic but thrillingly right-now. The oysters of now!
I can’t go back and eat the oysters of then. But I can eat the oysters of now. Dad is, all at once, a boy and a man and some ashes floating in Moreton Bay between the mainland and Stradbroke Island.
We’re all coming and going. We’re the bored child at the bed of the ailing relative, and we’re the ailing relative. We’re leaping through a sprinkler and we’re painfully making our way down a hospital corridor, drip-stand in tow, heading for the light coming through the window.
Just after my surgery in May, my friend Jacquie brought in a book of quotes by Jack Kerouac called You’re a Genius All The Time. After she’d left, I sat in bed and read:
No fear or shame in the dignity of your experience, language & knowledge
We’re all coming and going, all the time. Death is the primary fact of life; it’s there in life’s first breath. And yet there’s this fear and shame. Being diagnosed with Stage 3 cancer has sometimes felt shameful, even though I tell myself there’s no shame in it. I’m somehow failing, not doing life right, by growing tumours in my abdomen. And yet this is ridiculous. Everybody dies; everyone who has ever lived has died or will die. There is no shame in growing tumours or having tuberculosis or a stroke or a heart attack. These are simply different forms taken by the great, inevitable, unavoidable fact of life.
Reading that sentence from Kerouac, I sat in bed sobbing, but in a good way. The young nurse got interested. “Who is Jack Kerouac? I’ve never heard of him.”
“He wrote a book called On the Road.” I think she thought Kerouac was some sort of self-help author.
“What does he say?”
I read out the sentence, sobbing through it again.
“That’s true,” she said.
Today, I feel good and most excellently alive. All my numbers and scans are excellent. My tumours have been taken out. The doctors are impressed with my progress. I have only one more chemo session before the end of all this treatment and surgery. After that, I can look forward to feeling well in Spring. And then I can look forward to a nice long remission. Let’s say twenty years – why not? Every now and then, during that time, I’ll eat oysters.
* Repetition is the only form of permanence that Nature can achieve.
A great thing about having a blog is that you can take a peek under the bonnet and find out how many people are reading it and what search terms they use to get to it. Today, I see someone has landed at my blog by searching “how to stop a galah from squawking”. Well, if there were ever a hopeless exercise, it is trying to stop a galah from squawking.
Happily, it would seem that this galah will be squawking for some time yet. This week I’ve been in Sydney for a battery of tests and specialists’ appointments. Everyone has given me top marks. The CT scan shows a great big fat zero on the tumour front – well, almost. There’s still an 8mm cyst in my liver but that might or might not be part of the cancer story, but that’s nothing compared to the 11cm and 5cm tumours I started out with. They’ve gone entirely and now it’s just a matter of mopping up any remains with my last two chemo sessions. The first of these is tomorrow (erk) and then there’ll be only one to go. I’m hoping that by spring, I’ll be pronounced In Remission. Squawkin’!
A carapace is a hard outer shell, as worn by tortoises and insects. A month out from surgery, I’m wondering if they took my carapace as well as my spleen, omentum and various other body parts. I realised I was missing my hard outer shell the other night while watching a David Attenborough program on insects. Normally I can watch, without flinching, a lion pounce on a gazelle and rip its throat out or a killer whale toss a seal in the air before eating it. I understand that nature is red in tooth and claw. But this time, with the insects, I was beside myself. A spider SUDDENLY pounces on another spider and SUCKS THE LIFE JUICE OUT OF IT. The violence! The terror! It was like watching a horror movie. I had to make myself keep watching. What am I, a complete pussy cat? I grew up around spiders. I have never screamed at a mouse or a cockroach. As a child I caught fish and gutted them, right there on the beach. So what’s with this fear and trembling? The next program was about D Day, the landing at Normandy. Twin brothers wading through the water facing a hail of German machine gun fire. Twin brothers! No! What about their mother? How can people send their sons to war? Normally, a doco about the second world war goes into the “history” part of my brain. But this time the grief – the wreckage, the tragedy – was sinking straight into my heart.
And then there’s Parramatta Road, Sydney. A noisy, belching traffic sewer. As Steve and I drove out to Westmead for my post-surgery chemo, I felt alarmed and dismayed. Metal objects hurtling past each other at high speed! Soft human bodies strapped inside! We found ourselves following a young woman on a tiny scooter – a Vespa or something similar. A P plate was attached to the back. She was wearing a light camel-coloured jacket with a faux-fur collar, and her long honey-blonde hair was blowing around below her helmet. Despite the helmet she seemed unbearably unsafe, especially as giant trucks roared up beside her and cars zipped here and there in front of and behind her. Every time she stopped at the lights, she tucked her bare hands under her armpits to warm them. I was scared for her, watching anxiously, unable to take my eyes off her. How can we do this? I thought. How can we spend millions on high-tech medicine and yet send people out into these roads to be killed and maimed? She turned right and disappeared from view. I could relax a bit.
See? No carapace. No defences against the common-or-garden terrors of life.
Having said that, being in this vulnerable, newly-hatched state means that it’s not only the terror that sinks right in, but the joy as well. I can now spend minutes at a time – longer, half an hour – just sitting in one spot in a state of ridiculous joy. I’m alive! I have this day on earth! Look at the Labrador sitting in the sun under the clothesline! Can flowers be real? How can anything be that beautiful?
But you can’t get round in the world like this all the time. Unlike my spleen, I’m expecting my carapace to grow back, so I can once again step out of the front door and let things – cannibal spiders, Parramatta Road, a vase of flowers – be ordinary again.
Okay, so it’s a month since surgery and I’m now willing to reveal something I’ve hinted at but not been explicit about. Before surgery, my large intestine was intact.
During surgery, they cut out a long section of it. To represent this, I unravelled the end of my crocheted large intestine.
During surgery, Professor P and Dr B made a hole in my stomach just above and to the left of my belly button, and drew the new end of my intestine out of it. They sewed it off into a new portal to the outside world, called a stoma. (Note: Do not do a Google Images search on this word if you are at all squeamish.)
I’ve nearly finished a brown and black cushion that looks something like a satchel to hold my guts. It’ll sit innocently on the sofa like an ordinary cushion, but if a visitor should ask, I can unfurl it and tell the story.
I’ve remodelled the end of my intestine so it can be drawn through the cushion “skin” and fashioned into a little flower-like stoma.
If one has a stoma, one needs a pouch. To get a supply of pouches (in New South Wales) one needs to sign up as a member of the Colostomy Association of New South Wales. Members are known as ostomates. Our newsletters and brochures feature pictures of kangaroos and koalas – animals with pouches. Yes, it’s a rigmarole and a bother to be an ostomate, but it’s a small price to pay for more life on earth, with all its terror and all its joy.
I took the pic of the tortoise at the Hotel Espana in Lima, Peru, when we were there in 2009. It was hanging out under the dining table.