Category Archives: BRCA1

On being stared at

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Photo by Jean-Francois Phillips/Flickr Creative Commons.

As children we’re told not to stare. Being told not to stare begins as yet another arbitrary and baffling instruction among the dozens of arbitrary and baffling instructions of daily life. You have no idea why you shouldn’t but if you’re good, you try not to do it.

It’s hard, though, when it’s something you haven’t seen before: a man with a hole in his throat that he uses to breathe through; a penis; a woman from India who appears to be wearing her curtains. After a while you understand that it’s rude to stare because it makes the staree uncomfortable. There’s not just you in the world, looking out. Other people have feelings. It’s all right, however, to stare at things. They don’t have feelings.

My body, under my clothes, is eminently stare-able. Some things are missing while other things have been added. The first time I went to the swimming pool after surgery, I changed into my bathers in the toilet cubicle, because there were young children there with their mothers and I didn’t feel like adding my strange naked body to the mix. The next time, I just changed with my back to the room (my back looks normal) and by the third time my new body seemed normal to me and anyway, if people stare or ask questions they can go right ahead. (It would appear that nobody’s looking/nobody’s noticing/they’re all being discreet.)

Normal. Such a loaded word. We are heavily socialised into what’s normal. We spend our school years practicing normal, sifting normal from odd, inventing and applying new rules, including and excluding. Bullying.And sometimes people are regarded as things, so it’s okay to stare. The days of the human zoo are not that long behind us. Aboriginal people are still working on getting back the heads of relatives that were sent overseas to museums.

And then there are bones and Egyptian mummies and people from thousands of years ago whose bodies have been beautifully preserved in icy peat bogs. Surely it can’t hurt to stare? And yet, as we stare (even if just on a computer screen) there’s a presence. The wisp of the presence of that person, a trace, perhaps, of their feelings.

As I get older, I get twitchier. By which I mean, I’m getting more interested in bird watching. If I go for a walk, I notice the birds. I sometimes remember to take my magnificent binoculars, a present from Steve. I spy on the birds.

On a visit to Shark Bay ten years ago, I followed a twittering sound to its source – a small spiky bush. I pushed a branch aside and there, in plain, easy view below me, was a nest of baby birds, now suddenly silent. For a split second I was pleased to find the nest, to see the birds up close, but then I felt bad. It wasn’t just that I might have frightened the baby birds. It was a different feeling, more like being embarrassed when you barge into the loo when someone else is in there. It felt wrong to be peering into such a hidden, domestic space.If I were a fox, I’d have just enjoyed the buffet.

Anyway, here’s a giant tortoise who was busy mating with his girlfriend when a film crew rudely interrupts. Piss off, says the tortoise, and gives chase.

A morning with wrens

UntitledThere’s a particular crispness we get in the air in Bathurst at this time of year. This morning I found myself at my sock drawer, because my feet were cold. This is right on cue. This is almost the last day of summer. On Sunday it’ll be autumn. The garden just outside the back door is now a messy tangle of growth and decay and impossibly juicy, sweet, tangy, big red tomatoes. The tall withering sunflowers throw jagged shadows against the fibro shed wall. Busy brown fairy wrens, tails sticking straight up or swaying from side to side, land on the giant brown leaves and take rapid sips. Sip, sip, sip. They’re sucking up the tiny insects that are coating the dying leaves. A couple of weeks ago we had a luminous red and green king parrot standing on the great saucer of the sunflower head, binging on the seeds. Orange-backed beetles join at the tail and walk around like Siamese twins. There’s the hum of bees visiting the small yellow flowers of the straggly thin-leaved rocket that has gone wild, filling in all the spaces. The bees are wearing little yellow pantaloons of gathered pGarden at the end of summerollen. A wren lands on the windmill my nephews got at last year’s Easter show. She goes for an unexpected ride as it twirls under her weight. She rights herself with a bit of a flap and flies off stage right. I think back to the end of last winter when I planted seeds and tried to keep the seedlings alive in a wonky plastic greenhouse from Bunnings. Just the tiniest cotyledon leaves, then. And now – this tangled mass attracting swarms of insects and birds that you can harvest for lunch.

 

***

I’ve been running around like a chook. As the year got going, it picked me up and took me with it. Last year it left me alone, and I did my own illness thing. People shuffled themselves around me and my illness. Now I’m back in this general stream, out and about in town, sitting in committee meetings, work meetings. It’s all about talking things up, talking things down, opposing, celebrating, organising. People persuade me to get involved in their projects; I persuade others to get involved in mine. We’re all in there, haggling it out. So this morning it was good to just stare at the garden.

***

My Afternoon Teal went off brilliantly. The oven had conked out, so Larissa, up from Sydney, whipped things up in her giant brown mixing bowl and took everything next door to bake. She got the timing absolutely right, going back and forth, pulling things out at exactly the right time. Meanwhile Steve and I gave the house a once-over from front to back that still really only scratched the surface of a year’s dirt and dusty corners. Then, suddenly, everyone was there, eating cupcakes, drinking tea and bidding on the merchandise. A teal pencil sharpener, worth $2, sold for $30. It went on like that. My sister Deb, her husband Bernie and their two kids, Max and Joey, were enthusiastic auctioneers, thoroughly fleecing all present. We made a thousand dollars in one afternoon for Ovarian Cancer Australia. More money has been coming in since. This money will go into medical research and support for those who get this stealthy disease. In order to nurture and protect life. All life on earth has to end – we bloom and droop and die – but it’s nice to stretch it out a bit.

Snake carver almost meets his maker

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Today is overwhelmingly a marking day. I still haven’t quite finished. The last possible moment is tomorrow morning at 9am so I’m not going too badly (considering it’s not yet 6pm the day before, ahem). In between the marking – all done on the computer these days; my red pens sit idle – I’ve been having a couple of other adventures.

The first was a call-out to have a look at some snakes. They were arranged on the grass verge just outside Vi’s house opposite Centennial Park. As I approached with Bertie, I could see a cluster of people gathered around what looked like a posse of live snakes in the grass. I wondered if Bertie would react to them, but he wasn’t so easily fooled. Instead, he gamboled over to meet the people (Hi! Hi! Hi! Anything to eat?). Leif, who made the snakes, finds smooth slim branches down by the river. They remind him of local snakes. So he takes them home, carving, painting and polishing until they look extremely realistic. They’re all anatomically correct: tiger snakes, red-bellied blacks, eastern browns. I asked him if some of his snakes (he has over 50) could go on show at the 200 Plants and Animals exhibition that I’m helping to organise for BCCAN this year. He said yes, as long as we looked after them.

Vi got to know Leif when he rebuilt the brick wall at the front of her house, which, very early on in the life of Bathurst, was an inn. While he was working on the wall, Leif collapsed. Vi called the ambulance. For a while Leif was completely down for the count. They did CPR on him, pressing down on his ribs.

“I went to the other side,” said Leif, standing there with his snakes at his feet.

“What was it like?” I asked.

“It was light and warm. It wasn’t a tunnel, it was more of a rectangle. Maybe it’s because I watch a lot of TV. It was lovely. Then I heard them say, ‘He’s breathing’ and I woke up. I said, ‘Don’t wake me up, I’m having a nice dream’.”

I’m glad he came round, because his snakes will make an excellent contribution to the exhibition.

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Then more marking, interspersed with attempts to make decorative cupcake toppers out of fondant icing for my Afternoon Teal on Saturday. I can see why people do whole TAFE courses to get these skills. My teal “ribbons” look disgusting. They’re lumpy and very unribbon-like. They look like a child’s efforts with Play Doh. I feel better about my fondant ovaries. I was able to use a cookie-cutter to get the basic oval shape; then it was just a matter of using food colouring marker pens (yes! there is such a thing!) to draw on the details. It’ll be interesting to see people actually eating them.

In search of brain relief

Brain beanie/candypop creations/Etsy

I’m tired of being led by the nose by my brain. I think we’re going off in one direction, only to find we’re actually going in another, or around in circles. Or I’ll be somewhere and find that my brain has wandered off without me.

Meanwhile, and quite possibly related, my sleep patterns have gone down the toilet. I’m not getting enough when it’s dark, so I sleep for odd stretches in broad daylight.

I just read on Twitter that the human brain runs on about 12 watts. I think mine’s working on about 3 watts, but those three watts are doing enough to cause trouble. I can feel the brain cells jiggling; whether this jiggling is productive or not, I can’t yet tell.

For better or worse, today my brain has been exercised by the following:

      • A video about how to make fondant icing for cupcakes. This relates to a fundraising Afternoon Teal I’ll be hosting in February.
      • The Planning and Assessment Commission’s approval of a dirty great open cut coal mine on the Liverpool Plains, some of the most productive farming land in the country. This mine will dig up to 10 million tonnes of coal a year for 30 years. This is deeply crazy stuff. To have any hope of heading off a disastrous rise in temperature, we need to keep remaining fossil fuels in the ground. But the PAC’s report simply weighs up pros and cons as if half a century of climate science simply didn’t exist.
      • Interesting information, over a lunchtime chat, about some taxidermied local animals up at the big old Catholic school on the hill behind our place. The stuffed animals have been looking out of their glass cabinets at generations of uniformed schoolboys coming and going. I’m wondering if it might be possible to give these creatures a weekend outing, to participate in an exhibition of 200 plants and animals that I’m plotting …
      • A car that has a yarnbomb-style all-over coat made by near neighbour Steph Luke. When I took the wigs and hat she’d loaned me to get through last year’s chemo baldness, I found her in the middle of crocheting some additional touches. There are certain plans for this car. Stay tuned.
      • How to attach ring pulls to a sheet of translucent perspex for the coming Waste to Art exhibition. Answer: little clear hooks. There’ll be a mass of these on the translucent sheet representing carbon dioxide molecules in the atmosphere.

 

Mt Panorama ring pull

I’m still off coffee, by the way. But lots of tea. A friend suggested today that I stop drinking caffeinated tea if I want to get any sleep. This thought makes me want to curl up and not bother to go on. So probably not a great idea right now.

Time for afternoon tea

My name’s Tracy and it is thirteen days since I’ve had a coffee. I’m doing this one day at a time. I’ve sworn off before and I might have to do it again, but for now, it’s no coffee. What motivated this was a trip to the doctor a couple of weeks ago. The doctor had rung back after I’d done a blood test. Alarm bells. Please don’t ring after a blood test. It’s never good. He left a message saying he didn’t want to give the results over the phone. Ah, hell. Steve took an hour off work to be there. We went in, sat down. Steve opened his notebook, the one he used all last year to take notes in case I went into fugue state and failed to take anything in. The young doctor – he seemed new to the game, filling in for my usual GP – gravely told us that I had high cholesterol. We sat there waiting for the bad news. But he stopped right there at high cholesterol. I wanted to laugh loud and long in relieved delirious joy. But I didn’t. I sat there and tried to take the news as seriously as the young doctor was taking it. He told us why high cholesterol is a problem and what one should do about it. All the usual keep-healthy things.

Keep healthy things. Okay. So I’m off the emergency things like taxol and carboplatin and I’m on to common-or-garden preventative measures like diet and exercise. By the time I got home I had embraced the whole idea. I wrote notes for Operation Low Cholesterol and stuck them in a prominent position in the kitchen. I was keen to go back in three months time (by which time the young doctor would be in Broken Hill) with lower cholesterol and a gold star.

All last year, people (bless them) gave me hints and tips and books and websites about healthy eating. Other than hatching my own kefir in a jar kept in the dark under a black sock, I didn’t do any of it. Some people with cancer go for broke on the dietary front but I concluded that if things were that bad I would settle for the big guns. As in, “Nuke this, please.” Which worked out pretty well.

But now it’s over to me.

Coffee isn’t directly implicated in the high cholesterol realm, but the way I like it – a large flat white on full cream milk – is. I could ask for skim, but I fear that would be the slippery slope back into a bad habit (a bad habit for me; can’t speak for others). It’s easier for me to go cold turkey than to moderate.

But I’m not giving up tea. That would be a step too far.

I grew up in the tea-drinking culture of mid-century Anglo Australia. Mum got me on to tea before the end of primary school. (There was also Pablo instant coffee, but we won’t go there right now.) At a certain point during my teenage years I stopped having a teaspoon of sugar in my cup. Dad had his black with three heaped teaspoons of sugar. And a bit of lemon, if there was one in the house. The ritual of tea was heralded by someone singing out, “Cupda dee!” and there would be a line-up of cups on the bench.

I’ve always loved George Orwell’s eleven golden rules for making a nice cup of tea.

Now, having declared good riddance to everything ovarian-cancer related, I find myself organising an Afternoon Teal at my place next month. So I’m back in the territory. Early last February I was diagnosed with the disease; this February, like other Februaries in Australia, is Ovarian Cancer Awareness month. Our team colour is teal (barely noticed in the sea of pink for cancer of that other part of the body). I’ve committed to attempting to make cupcakes (low cholesterol? gluten free? wholemeal? sugar free? the possibilities are endless) that look like this:

I’m no baker, or cake decorator, so it could be interesting. The purpose of my Afternoon Teal (Saturday February 21, 3pm-5pm) is to raise awareness of ovarian cancer and to raise money for research and support projects. If you’re in Bathurst and you’d like to come along, email me at tsoren@tpg.com.au; if you can’t come but would like to support the cause, here’s the link to my donation page:

https://ovariancancer.secure.force.com/CICD__Fundraise?id=70116000001AKJp