Category Archives: BRCA1

The new world in the morning

A_box_of_hairOMFG. I survived the year 2014. It’s over. I’m about to pack it all in a box. All those cancer hats – in the box. A big blue folder called Resilience, from Ovarian Cancer Australia – in the box. You’ve been very helpful but I don’t want to catch sight of you at the moment. Cardboard box with bananas stamped on the side, full of wigs – it’s going back round the corner to Steph Luke.

The year 2014 can go the f@#k to sleep.

It’s time to get the box I labelled “Hair” out of the cupboard. It contains things like shampoo, conditioner, combs, depilatory cream. Things one uses when one has hair, wanted or unwanted. These things can now be restored to their spots in the bathroom.

Unfortunately I can’t pack up Buckminster and all his accoutrements. Buckminster is the name I’ve given to my stoma and colostomy bag. Last night I was discussing it with my friend Karen Golland, and I called it “this guy”. As in, “This guy has a lot to say, tonight.” She said, “Oh, is it male?” I stopped and thought about this. Yes. He is a male. Full of shit. Not that I think males in general are full of shit by any means. Some of my all-time favourite people were or are male. But for some reason I’ve been thinking of it as a “guy” or a “dude”. So, yes, male. And being full of shit is in no way a criticism: it’s just its function. So, Fullashit. Which suggests a first name: Buckminster.

In 1927, Buckminster Fuller, the architect and futurist, had an epiphany. He was contemplating suicide when he suddenly found himself floating a couple of feet off the pavement in a sphere of bright light. According to Wikipedia, a  voice came to him and said:

From now on you need never await temporal attestation to your thought. You think the truth. You do not have the right to eliminate yourself. You do not belong to you. You belong to Universe. Your significance will remain forever obscure to you, but you may assume that you are fulfilling your role if you apply yourself to converting your experiences to the highest advantage of others.

After that, he went on to invent the geodesic dome and have bucky balls named after him. And my colostomy apparatus.

I can’t pack Buckminster away; he’s a constant reminder of the truth, which is that everything you’ve got is slipping away from you, including your own body parts, but with a little help you can temporarily stave off the dragons of dissolution. (I reassure myself that temporary can be a very long time.)

Yes. I’d like to put 2014 in a box and put it away but Buckminster keeps reminding me of it. As he should.

And even though there’s no such thing as Forever here on earth, it might exist somewhere else. Last night, at Fiona Green’s beautiful New Year’s Eve party, Karen told us about the Forever Now project which will send messages into the universe. They might be found one day … by others or perhaps by some version of ourselves, the ones living in another space-time dimension. You can see the video clip here. It is so beautiful. Karen worked on collages (a different project) with one of the artists, Deborah Kelly, at Bundanon just before Christmas. You can vote for this animation to board the forever rocketship by leaving a comment below the animation.

Anyway, here on Earth, it’s a new morning!

I should have done this in my last post for 2014, but I’ll do it now: Thank you, all my readers, for riding with me all year. I managed to post most Thursdays for most of the year; I’m aiming to do the same again this year.

Happy New Year!

Jack and the tattered weed

sunflowerI’ve been having a lot of trouble getting out of bed in the morning. As I’m working from home, there’s no need to be up at six, or seven, or eight. Or nine, or even ten. And having begun the day late, it’s impossible to sleep early, so each day is starting later, ending later. In the 1990s I had friends who lived in Philpott Street, Marrickville, who had let this process reach its logical conclusion: they awoke just before dusk and went to bed again at first light. I remember being there at about one o clock in the morning while they ate and chatted as if it were one in the afternoon. I can’t let things get that bad, I tell myself. I’ll have to start getting up earlier. But then, suddenly, it’s  morning again. I feel like I only just got to sleep ten minutes ago. I decide to snooze a little bit longer.

This morning, at a time that felt like the middle of the night, I heard a short, sharp buzz. It was a text message from a friend inviting me to have morning tea at ten o clock, two hours hence. I went back to sleep. At five minutes to ten, I hauled myself out of bed and got around the corner to Fiona’s place. I told her that while I was physically present, my mind was not actually awake. She fed me a cup of coffee and the rich smell offered a magic carpet ride to the land of youthfulness, wakefulness and vigour.

She read me Shakespeare’s second sonnet.

When forty winters shall besiege thy brow,
And dig deep trenches in thy beauty’s field,
Thy youth’s proud livery so gazed on now,
Will be a tattered weed of small worth held –

It’s about what happens when one is over forty, and one’s brow is furrowed and one is just a tattered bit of seaweed washed up on some godforsaken shore and nobody can even be bothered to look at you …

The solution to this grim state of affairs, says Shakespeare, is to have lots of children. That way, you can continue to be young and beautiful because your children will be young and beautiful. You can gaze upon them and that will comfort you in your hours of pointlessness. Fiona’s brow has been besieged by forty winters; mine ten more. Between us we have not had one child; we are without remedy for the cruel ravages of time’s scythe.

Except for coffee. The coffee did the trick. I’d come as a tattered weed but I was leaving as a strong, bright sunflower like the ones that are growing against the fibro wall out the back, reminding me of all the other sunflowers of my life. They’ll grow anywhere. Galahs love the seeds. I may not have children, but I can always find a galah or a sunflower to get a dose of cheerful, hardy things (unlike, say, the white rhino, whose days are definitely numbered).

MBJBack home, as I did the dishes, I listened to a program on ABC Radio National about George Johnston’s My Brother Jack. It’s fifty years since the book was published. George Johnston and Charmian Clift and most of their children – non-hardy creatures – are long gone, but the book lives on. I’ve carted my copy around since I first read it as a teenager. Images from the book are companions through my life. Insects still drop out of the  dollicus*. Prosthetic limbs and a gas mask clutter the hallway. The gum tree in the front yard that Helen didn’t like because it was messy grows tall and strong in the Australian light; a broken man, falsely accused of murder, tends his roses. The green eyeshades worn by the copy editors at the Argus and the crumpled trench coats and pork pie hats worn by the reporters. When I told my English lit teacher how much I loved the book, she sneered: “What about the development of the female characters?” I was taken aback. I had so thoroughly identified with the tortured David Meredith (endlessly contrasted with his brave, straightforward brother Jack) that I had barely noticed Johnston’s two-dimensional portrayals of Sheila and Helen and Cressida.

lucky_countryThe book keeps company on my bookshelf with Donald Horne’s Lucky Country, published the same year. My Brother Jack has a digger painted by Sidney Nolan. The cover of Horne’s slim paperback is by Albert Tucker. It’s a craggy painting of a bloke with a beer in his hand, an Ace of spades in his pocket and the glorious deep blue sea behind him. In the sea there are bright triangles that might be the sails of boats or the fins of circling sharks. Both books were searing critiques of Australian life that became, as the decades rolled on, part of the pantheon of Australian mythology. The Australia Johnston and Horne both loved and deplored began to vanish and as it vanished, a fantasy took the place of all the messy details. Australia was a wide brown land inhabited by sturdy, uncomplicated Jack Merediths. It is this Australia – this fantasy lucky country – that is brooded over and celebrated in drunken, flag-covered binges on Australia Day. It is the Australia evoked by those who say Fuck Off We’re Full and by John Howard when he laments the “black armband” view of history. It’s a sentiment that spiked during Monday’s Sydney siege but was tempered by Tuesday’s #illridewithyou.

Tracy_Deb_Jetty_early_70sSpeaking of history, I have been besieged by forty years and ten. My brow is not that furrowed, but there’s a whole part of me – recovering from cancer, missing body parts – that is definitely doddery. And like George Johnston in exile on Hydra, I miss the Australia of my early memories. A child’s world is a simple world. Some people are good and others are bad. Your legs can run you up the side of a levee bank or down a burning sand dune. Your abdomen contains its full quotient of pink organs that slide easily over each other as you go into a handstand. The deep blue sea meets a clear blue sky that arches over a wide brown land with a blue EH Holden moving purposefully across it.

It’s driving into tomorrow, where things are different.


* The dollicus is the name the Meredith family gives a creeping vine in their back yard.

Snow and other stories

Tiny snowman, Mt Canobolas, July 2014.

Tiny snowman, Mt Canobolas, July 2014.

This morning at ten to six, Mum left town on the Bathurst Bullet. Because I came home and went back to bed, this feels like yesterday, or some other dreamy incident in the past. She was here for a week, and Steve was away at the ranger conference, so it was just Mum and me 24/7. It was one long pot of tea, really, and the telling and re-telling of stories, some with striking variations depending on point of view, some with suspicious holes in them, some we’d be proud to announce to the world, others – the juiciest, of course – that mostly live in the dark. And others not mentioned. Thought, maybe, but not given voice.

We were carless for the duration, so a lot of this was conducted at or near the kitchen table. We spent the last two days working on a scrapbook called A Day in the Snow, Now and Then. The pictures were assembled according to the following themes:

  • Cars arrive in snowy territory.
  • A snow ball fight.
  • The making of a snowman.
  • Putting the snowman on the bonnet of the car.
  • Seeing how long the snowman would last before melting/sliding off.

The Now photos were taken on July 7 this year at Mount Canobolas near Orange; the Thens were taken in the winter of 1972 near Thredbo. Everyone’s laughing, smiling, having fun in the snow. All sorts of other stuff was happening on both occasions. For example, in July I was in the middle of chemo so my head was bald. But you can’t see that in the photos because it’s beanie weather and everyone’s wearing beanies. My little nephew was in a bad mood from his epilepsy drugs (or just a common-or-garden bad mood, who knows) but you’d never know from the pictures how much he had to be cajoled to look at the camera. The photo of Dad back in 1972 shows him breathing out misty vapour; warm air from his lungs condensing in the freezing air of the Snowy Mountains. It adds wonderfully to the “it’s cold” effect. Only it’s not what it seems. “That’s cigarette smoke,” says Mum, giving me a new way of seeing an old photo. And other stuff. Layers and layers and layers of other stuff. But the fact is that we did all do those things on those particular days, and the photos are there to show for it. We all saw snow, had a snowball fight, built a snowman … and everyone had a different day in the snow.

Back on the bike

Roads_Closed_Carnarvon_2000

Riding around in Carnarvon during and after Cyclone Steve in March, 2000.

Today I got the bike out of the shed, wiped off the dust and cobwebs, pumped up the tyres, and got back in the saddle. My protective gear included a billowy long-sleeved shirt, sunscreen,  an old yellowed helmet and a flowery hat poking out from under the helmet. I wore a wrap-around skirt and sandals because it was too hot for jeans. In other words, I was neither a hipster nor a lycra cyclist but a complete dag. I didn’t care. I was only doing this because Steve’s got the car while he participates in the massive IUCN World Parks Congress in Sydney and its satellite events. That’s all very well but I had to pick up the box of organic veges that we have on permanent order from the Bathurst Wholefood Coop (I’m delighted to see that my green street cred is steadily rising in this post), something I normally do with the car. Until today, I hadn’t been on the bike since major surgery in May. I’m still a bit protective of my insides, even though it’s now months ago. Swinging my leg over to the pedal on the other side was slightly iffy – for some reason chemo left me with a stiff left leg and hip – but I managed it. And then, I was back on the bike! Hooray! Bertie had been watching all these preparations. As I slipped out through the temporary fencing at the back of our yard, he let out a mournful howl, an otherworldly sound of broken-heartedness. I told him I was only going to the shops. He gets clingy when Steve’s not here.

Mum will be here tonight – she’s on the Bathurst Bullet as I write this. She’ll be here for a week. We’ll have to walk everywhere, which can’t hurt. And it’s wonderful that we both still can.

In the meantime, here’s this inane novelty song, so familiar. I’d never seen this clip, but here it is, thanks to YouTube.

Hair!

It’s time to consider my hair. Oh – there’s that well-used phrase of the past couple of weeks. It’s Time. Okay, so I’ll start with Gough: I thank the Whitlam government for abolishing tertiary tuition fees. As a result, this daughter of a truck driver and seamstress grew up thinking it would be perfectly reasonable to go to university after high school. Which I did, followed by my sister. A few years later Mum, who hadn’t finished high school herself, got in on the act. We’re all now bristling with degrees and diplomas. At the time, we assumed this was just part of the march of progress; we had no idea that this door was on a spring; that it was always ready to slam shut again. And then there’s free universal health care, and ditto. The latest encroachment on Medicare is the proposal to let private health insurers run agencies that would oversee the work of GPs in Medicare Local services. In other words, the privatisation of Medicare, a reversal of one of the outstanding reforms of the Whitlam government.

In amongst the orgy of nostalgia and Whitlam worship there are those pointing out that Whitlam was rising a wave of radicalism driven by people’s movements all through the 1960s. Whitlam’s reforms weren’t entirely down to Whitlam himself (although his leadership and strength of character were an essential part of the mix). Feminism, civil rights, Aboriginal rights, student activism … It was the spirit of the times, as expressed in the musical Hair.

So now I can segue quite nicely back to hair. My hair.

Yesterday, I went to the first face to face meeting with colleagues since I was struck down by cancer diagnosis in February. In February I had long straight brown hair. By July every single strand of hair on my body had disappeared. Now, I have a greying stubble, a tufty regrowth. I look in the mirror and don’t quite recognise myself. I’ve been wearing hats and occasionally a brown wig (or a pink one) and sometimes scarves, although I find the scarves tend to shift around a lot and I spend all day fiddling with them. For a while now I’ve been working from home (marking); but yesterday I needed to Go In. In through the Door of Workplace. At 8.30am yesterday morning I was dithering around, wondering what I should look like. Should I be out and proud, an obvious cancer survivor? Should I wear a cheerful turban? Hat? Wig? In the end I decided on the brown wig. I had the idea that I should invoke continuity with my former, pre-illness self. This would show that I was ready to simply step back in, business-as-usual. I regretted this almost immediately, but it was too late to turn back. The wig was itchy. I kept fiddling with it. The meeting was a video conference. Up there on the screen you could see not only the people around the table in Wagga, but a mirror-like image of ourselves around our own table here in Bathurst. My hair looked deeply wig-like. I looked like someone who had come back to work in a wig after having chemotherapy. Worse, I felt I looked like someone who wasn’t owning up to a year of illness and struggle. After all my bold sharing of details like my colostomy bag on this blog, I was retreating to a position of trying to pretend that everything was normal. When I should be breaking down the stigma, the barriers, by turning up boldly in a hat or scarf or greying tufty stubble. I followed along and participated in the meeting, but I never forgot my hair.

Anyway, funnily enough, the meeting wasn’t all about me. It was about something else entirely. It’s quite possible that what I was wearing on my head wasn’t an issue for anyone else in Bathurst or Wagga.

I still haven’t decided what I look like. Continuity or a revolutionary break with the past? It’s only hair. But hair means so much.