Category Archives: BRCA1

Goodbye Sue

afternoon_tealColours. Some of my life is in pink and grey, the colours of the galah; some of it is in the red of outback earth and some of it is in teal, the colour of the awareness ribbons for ovarian cancer. I have an ambivalent relationship with teal. Sometimes I’m happy to be part of Team Teal, hosting fundraising afternoon teas for cancer research. Sometimes it’s a colour I don’t want to see. When I was in London in June, a woman in a striking teal sari walked past in a sudden shaft of summer light that broke out from behind a cloud. I don’t want a fucking omen. Fuck off. I was miserable for a while, convinced I was in for it all over again.

But I wasn’t. Back in Sydney, my routine checkup was all clear; the specialist shifted my checkup intervals from three months to six months. After that, yearly, and after that… you’re back out in the world with everyone else.

That teal sari wasn’t for me.

sue_2010It must have been for Sue, my cancer buddy. We were diagnosed at around the same time, and compared notes. We were friends before we got sick; she was a long-time colleague of my partner Steve. Not long after Steve and I got together, we popped in to see Sue in her house in the Blue Mountains. She had three gorgeous little boys, triplets that were everywhere at once. Steve threw them on to the sofa, one after the other. They ran back, wanting to be thrown again. Sue struck me as amazingly calm in the midst of the whirlwind.

We were in overlapping environmental circles. She came to Bathurst to give a talk about the Transition Towns movement. We chit-chatted on Facebook about climate change and wind farms.

When I was diagnosed with primary peritoneal cancer, a variation on ovarian cancer, she sent a message:

Hi Tracy. Wanted to let you know I’m thinking about you & Steve and hoping for the best. Also, you wouldn’t believe it but I’ve just had a pelvic scan myself this week – I have a “complex ovarian cyst” which my doctor seems slightly (but not overly) concerned about. Having a CT scan next week and seeing a surgeon at Westmead the week after. I’m trying not to feel worried – no history of cancer in my family, but surgery is never fun.

I wrote back:

The teal brigade is a wonderful club but we don’t want any new members! Fingers crossed and we’ll both be thinking of you. Tracy xxx

Reluctantly, though, I had to admit her to the club. Our CA125 levels were “through the roof”. We started chemo, both trekking from our homes to Sydney for treatment (she at the Chris O’Brien Lifehouse at RPA; me at Westmead). We lost our hair, started wearing beanies. Got our dates for “debulking” surgery. Looked at the stats on ovarian cancer. Not good. Very not good. I kept thinking about her children, the three boys (Kalang, Milo and Tallai) and their older sister Kittani.

After surgery, our stories began to diverge. When I woke up – complete with colostomy bag and half my guts out – I heard the magic words: “We got all of it.” Wow. But for Sue, the news wasn’t so good. They’d had to leave some behind – to take more tumour would have killed her on the spot.

We both went back on the chemo treadmill, me for “mopping up”, Sue for holding the beast at bay.

She came to my Afternoon Teal fundraising event in February 2015, and I went to hers at the gorgeous old Paragon Cafe in Katoomba. I went back to teaching. For Sue, being ill became more-or-less her full-time job. It was wearing.

I’m in pain most days and every dose increase of painkillers just means more sleepiness and fatigue (not to mention nightmares & nausea!). I can’t drive and I struggle to do basic household tasks.

But she was still keeping a hand in as an active citizen. From her hospital bed at the O’Brien centre, she held a spontaneous working bee for The Colong Foundation for Wilderness. She urged us all to support her boys’ team (the Migrating Wombats) in the Trek for Timor. And she celebrated an enormous achievement: seeing her boys through to their 18th birthday.

When she announced on Facebook that she was back in Katoomba for “palliative care”, it was still shocking, despite all I knew.

I messaged her:

I’m hoping that you can feel as well as you possibly can for as long as you possibly can. And enjoy whatever there is to enjoy and be as comfy as possible.

And she replied:

Thanks Tracy. I know you will carry on the awareness raising for us Tealers. I’m okay now that I’m back in Katoomba. Love to you and Steve. I know he will update old work colleagues where appropriate. Look out for the published research on BGB-A317 down the track. ????????

She was signing off. But I still thought there was perhaps a little bit more time. I was going to reply – at least with a “hugs” emoticon – but got distracted and the next thing I knew, there was a message from Sue’s phone, but it wasn’t Sue’s voice in the recording. It was her ex-partner Wyn, the children’s father, who had been at her side through all of this, asking me to call him back.

Goodbye Sue. Thank you for all you gave the world while you were here sharing this little blue planet with all of us – human, plant, animal, rock, sea and sky. Go well Kittani, Tallai, Kalang and Milo and their extended family. And go the Teal!

How to fail at everything and die of cancer

If you take your eyes off it, it grows.

The mighty dieffenbachia

Okay, now I have your attention, I’ll hasten to add that I have not had a cancer setback; my numbers are still excellent. I’m still in hearty, robust remission, and long may it continue. No, what’s happened is that I’ve failed to even get an interview for the full time version of a job I’ve been doing as a casual for nine years. People often tell me how well I do this job. Not even an interview.

So what I’m experiencing now is a fit of pique, an imaginative foray into spitting the dummy, a brooding, repetitive thought pattern that circles like a plane unable to land. The landing place is, of course, the city of Disappointment in the country of Humiliation. I must check in, once more, to Heartbreak Hotel. I must wander Disappointment’s crepuscular streets. I step over the body of a young man who has died of lítost. Lítost is a Czech word, defined by Milan Kundera as “a state of torment” brought about by “the realisation of one’s inadequacy or misery”. The young man has jumped from the high window above, but nobody has come to take his body back to his hometown because everyone else is dealing with their own lítost and there’s no energy to do the paperwork.  A doleful waitress – she might have been a star – doles out a plate of comfort food, beige and yellow. We exchange a rueful glance.

But then I think of the dieffenbachia in my living room. This is a plant that laps up being indoors and doesn’t mind long stretches without water. I would certainly never pot it up, fertilise it or change the soil. For ten years it has grown vigorously and fulsomely, shooting straight for the ceiling. It has produced two sturdy daughter plants. This plant knows nothing of failure. It is successful, and because it lives in my house, I can claim its success as my own. Look at the plant I’ve grown!

And I think of my friend Sue. We started treatment together, finished treatment together. My cancer didn’t come back, but hers did.  She’s in deep trouble. She has four children, three of them still teenagers at school. I could claim success in this vile race for survival but even my black humour can’t go quite that black.

Success is real, failure is real, but it’s clear that these are not, and never have been, fair. Okay, I’m not casting aspersions on my selection committee (although it is tempting in these hours of pique) but the bigger picture reminds us that it’s all bullshit, really. Some people are dieffenbachias. They sit there with their vegetable success and congratulate themselves. Others – like the ten year old Indigenous girl who committed suicide in Western Australia – are struggling to secure the basic requirements of a life worth living, and blame themselves.

Google has no idea about this, though. If you ask Google for advice – as we must, because Google seems to hold the Wisdom of the Ages, and because Google is always there, and we are lazy – you will get this:

– Why success always starts with failure
– 50 famously successful people who failed at first
– Failure Is Feedback: How 5 Billionaires had To Fail To Succeed

Note how we could only come up with five billionaires? Compared to how many people living on earth? The fact is that most of us are – and must be, by Google’s definition – losers. It’s a horrible word to apply to your aunt, your partner, your children, the waitress at your local cafe, the neighbour who checks your mail when you’re on holiday, the unpublished novelist, the bedroom singer-songwriter, the swimmer who came second, the Aboriginal kid living in the remote community next to the iron ore mine making billions for one of those five billionaires.

Oh the chip! The chip on my shoulder! I’m actually laughing at myself. Could be time for a third cup of instant and to finish reading Sarah Bakewell’s exquisite new book The Existentialist Cafe, dotted through with some exceedingly consoling crochet.

Another year

Wicket_cardAnother year down, and all is well! I’m still here and my numbers are still nice and low – 12 last time we looked. For this, I thank modern medicine and the wizardry of my two surgeons. I’m happy but never entirely out of the woods. I walk in the wooded valley of the shadow of the Rainbow Bridge. People think the Rainbow Bridge is just for pets but it’s not; it takes bookings from anyone. Actually none of us ever gets out of the woods. There’s always more woods. And woods are beautiful places, buzzing with life…

Anyway, I’m getting carried away by my own metaphors, so let’s move on.

While last year was all about taxol, carboplatin and long stretches of time on the couch, this year was a bit of whirl as I got back into Life at 100km an hour. Teaching was weird. I’m probably a bit like Samson, taking strength from my hair. I felt I didn’t have quite enough hair to stand in front of a room of 19 year olds and hold my own.  Meanwhile, I was sewing three giant turquoise dresses and learning my steps for the Invisible Body performance in May, where three of us did nifty moves on stage while someone else read out our personal accounts of living in bodies. We did this twice and then on the last day of the Bathurst outpost of the Sydney Writer’s Festival I got to be on a little panel of bloggers talking about our blogs. I said I blogged every Thursday, no matter what. This commitment has now begun to unravel, as you may have noticed.

What else went on this year? Check the photos on the computer. Oh, a LOT! There was a little campaign to save the Tremain silos in Keppel Street (saved!); Tracey Carpenter’s campaign for the state seat of Bathurst (retained by Paul Toole); the giant Diffenbacchia pot plant reached the level of the ceiling fan and then FELL OVER. I cut it off to its stump, leaving its two daughter plants to replace their mother (they are going very well); we had an Afternoon Teal to raise money for ovarian cancer at which Deb and Bernie, Max and Joey auctioned small items and we made lots of money (and Larissa baked cakes using the neighbour’s stove because ours was on the blink); there was the trip to Kandos to help Karen Golland poke pom poms into the ground, and then a day at Cementa; a school hols visit including nephews and a random kid they brought along; a trip to Shelley beach with Bertie and his cousin Wicket; painting ring-pulls for this year’s Waste to Art exhibition; an attempt to make sauerkraut (it looked the part but we never ate it); making Nicole Welch’s promotional video; getting more hair; going to TASMANIA (Maria Island and Hobart and a bit of the east coast) with Ranger Steve; experiencing a day of snow in the streets of Bathurst; experiencing, with all of Bathurst, the shock of the murder-suicide of cafe proprietor Elie Issa and beautiful real estate agent Nadia Cameron; more hair; following along as Mum constructed a separate wing at the back of Deb’s place to move in to; and then the grand flurry of the 200 Plants and Animals exhibition in the Bathurst CBD, followed by a battle to stop a gold mine sucking water out of the Macquarie River. Steve’s sudden obsession with kayaks. Whoa! No wonder I’m tired! And that’s not to mention the first steps into a PhD and the most amazing thing I haven’t mentioned yet but will mention now.

Over the last half of this year, I was mentored by the totally amazing and brilliant Charlotte Wood, author of The Submerged Cathedral and The Natural Way of Things as I made one last charge up over the trench and into the enemy lines of Finishing This Wretched Novel for Once and For All. (I’d finished it before, a couple of times, but not really. It still had essential problems, problems I was hoping some editor, somewhere, would help me fix.) Charlotte gave me some big guns. Howitzers. These will be handy in future battles. So as 2015 comes to a close The Lucky Galah, the novel I’ve been working on forever, is now really, truly, ruly finished, except for some typos and tiny touch-ups. And I’m so glad I didn’t settle for faulty earlier drafts. This novel is not quite the perfect thing I had in mind, but it is as good as it’s ever going to get, so that’s that. Done. Line ruled under. All over.

Meanwhile, out in the bigger picture, I just want to take a moment to savour the moment Tony Abbot was ousted. I know all the stuff about Malcolm carrying on most of the same policies, only in a more smooth-talking way, but I tell you what, that moment of waking up the next day was pure bliss. It was like a weight dropping off the shoulders of the nation.

Finally, little Wicket the long-haired dog really did step over the Rainbow Bridge recently. Vale Wicket. And Vonnie, my sister’s Mother in Law, with whom I spent many Christmas days. And thinking of Dad, too, who is sitting on a chair on a deck somewhere over the Rainbow Bridge, with his big white Maremma dog at his feet, looking through his binoculars at all the native Australian birds in the tree canopies.

Leave Matt Damon on Mars

tiny_orchid_chris_marshall

A tiny lily from Peel, near Bathurst. Pic: Chris Marshall.

There’s an awful lot going on, and all of it’s good, all of it’s about participating in Life with a capital L.

A couple of hours ago I got a text message from a nurse at Prof Harnett’s clinic. The entire text message was just two digits: a one and a zero. Ten. Ten! Brilliant! My lucky number relates to my CA125 level, an indicator of possible ovarian cancer activity. High numbers bad, low numbers good. Ten is a lovely low number.
In the run-up to this blood test I kept myself pantingly busy working on the 200 Plants and Animals exhibition which opened last Friday night. We had about 50 people at the launch. The exhibition, whipped into aesthetic line by Cate McCarthy, looked fabulous at about 4pm on Friday evening. Two hours to spare! I even had time to go home and have a shower and put a skirt on.

The exhibition is all about paying attention to where we live. Which is in a planetary system that appears robust but is actually caving, crumbling, subsiding, declining, getting warmer, losing bits of itself. The exhibition (which continues until 5pm next Sunday) explores the bit of the system that we’re inhabiting right here, right now – focusing on non-human living things. A hundred local plants, a hundred local animals all feature in the exhibition. The largest thing is the skull of a horse; the smallest is a tiny, tiny dead beetle. It includes my own bit of amateur biologising: a pressed dandelion from the back yard, and crocheted human brains (humans are included but only as the “one hundreth animal”). There’s a spotted marsh frog painting by the Hazzards; Mum’s pobblebonk; my friend Kirsty Lewin’s black cockatoo mask; lots of photos by Tim Bergen; bright pastels by Johannes Bauer who is both ecologist and artist; Ray Mjadwesch’s specimens including the dried remains of a sugar glider that died after being snarled in barbed wire; our old dog Taro; a glass-art cat with a chain saw. Mostly native animals and plants, but a few introduced species that share this habitat.

Working on this exhibition with the BCCAN committee and others in the team, my sense of this planet as a teeming, rich-in-every-corner thing has grown. I got angry with an ad for Mortein on television the other night. It seemed incredible to me that wholesale scorched-earth policies in private homes are allowed, willy nilly, along with anti-bacterial hand washes. Good to have in hospitals, but the idea of daily life in disinfected spaces now seems a lesser life.
Which brings me to Matt Damon on Mars with his potato plants fertilised by human dung. There he is in a superhuman struggle against the basic facts of life: our bodies were created and are supported by our one and only planet, with its air and water and animals and plants and seasons and sea and earth. And he wins. He works out how to “science the shit out of” his dire situation. The movie brims with an eager love of science, of figuring things out, trying things out, failing and trying again. I enjoyed that. It was also a long paean to NASA. I’m as much a fan of NASA as the next person, or maybe even more, having grown up next to one of the tracking stations that tracked the Gemini and Apollo missions.

But in these days of climate change and environmental destruction, such enthusiasm over humanity’s ability to shuck off the demands of our slow-evolving nature just makes me a little sad for us and for the planet we’re buggering up in the process. There we are, soiling our own nest, just waiting to take flight, get off into outer space, colonise distant planets, all in close-fitting Star Trek suits.

On television a few days later, there was the lame Revenge of the Sith, in which the vibrant world of the original Star Wars movie was oddly reduced to a cross between daytime soap and a computer game for kids. It was all smooth surfaces and whizzing things. Where were these beings growing their food, disposing of their waste? Where was biology in all this? (Okay, just Googled it. Star Wars does have its own biological objects and rules, according to Wookieepedia.) When James Cameron’s Avatar came out, I thought it might have been the beginning of a different type of futurism, one that explored the idea of living sustainably within an ecosystem. But Avatar was a one-off. The future, as imagined by Hollywood, still has a Jetsons quality (it’s the future, and you never see the Earth’s surface, let alone a single tree).I love science as much as the next person, or even more, having so far been saved by modern medical knowledge. But the idea that we can “science the shit out of” our environmental problems, including climate change, will not work on its own. I think it needs to be united with a profound acceptance of – and interest in – the limitations and workings of our own bodies and our own planet.

To stitch and bitch

Mixed media galah digestive tractOkay, so what’s this? Well, thanks for asking. It’s the digestive system of the pink and grey galah rendered in felt, crochet and embroidery. It’s a work in progress, something I’m working on in a Friday afternoon stitch-and-bitch group here in Bathurst. I wouldn’t have called it that, except a friend, when I explained what I was doing, said, “Oh, a stitch and bitch.” It’s actually an experiment in using textile art to reinforce resilience in a group of women who are clients at the Busby Medical Centre. The group is run by psychologist Dr Suzanne Alder. As soon as I found out about the group I threw my hand in the air, shouting Miss! Miss! I just had to go. I got my GP to add it to my mental health care plan. I said I needed to reinforce my resilience as I recovered from major body-altering surgeries. That might be true but actually I just wanted to sit in a group and do craft and talk about stuff. That would have to be one of the very definitions of bliss, for me. Everyone in the group has hair-raising problems. I can’t mention any of them because we’re all sworn to secrecy. But I don’t mind letting you see my creation.

As some of you will know, last year I crocheted my own digestive tract, so this year I wanted to branch out. As the galah is my fave bird, with whom I identify, I thought I’d try making its digestive system. A lot to learn about, there. I’ve been learning about the crop, which is sort of a get-back-to-you-later holding pouch in the neck; then there’s the gizzard, which is a very muscular organ indeed. Inside the gizzard, there are stones (people who have chooks might know about this) that help grind up seeds and whatever it is the bird is eating. There’s a liver and a pancreas that behave more or less like our own. And then the famous cloaca, from which we get the colloquial clacker.

Manure from the cloaca fertilises the ground upon which a magnificent sunflower grows. The galah eats the sunflower seeds and the cycle of life continues. After the initial flurry of research, working on this piece has been very relaxing. I watch television while I’m doing it, although it’s more like listening to television because my eyes are on the work on my lap.