Category Archives: BRCA1

Help Deb make a difference!

Deb_Tracy_Nighties_early_70sMy first memories of Deb are sketchy.

My Pop hands me a doll. We seem to be high on a balcony. Decades later Mum and I work out that this could be a memory of the day Deb was born. The balcony might have been at the Mater hospital in Brisbane. I can’t have been more than 22 months old because that’s how old I was when Deb joined us.

And then there’s Deb in a cot, and me standing next to it with chocolate cake in my hand. I divide up the cake, some for Deb, some for me. I give her the cakey bit and keep the icing for myself. I was only two and a half years old but I already understood that she had no idea she was being diddled. I remember that actual wicked thought.

And then Deb was my companion all through childhood. And the decades rolled by and one day, on the phone, Deb said she had bad news and I immediately thought something must have happened with Dad. But it was about Deb herself. She had breast cancer.

That was five years ago. Since then, we’ve both discovered we’re carriers of the BRCA1 gene mutation and I’ve joined her in the cancer trip, only mine was of the ovaries, which is generally considered to be the nastier straw to draw.

As I’ve documented elsewhere on this blog, the BRCA1 gene mutation is a horrible piece of work. When I was in Tasmania earlier this year, I saw a poignant drawing by Melbourne artist Cassandra Laing on the wall at the MONA museum. The drawing is of a photograph of two young girls beside a dead and tagged bird lying on its back. The title is “Darwin’s Girls” and it’s about Laing’s own inherited predisposition to breast cancer. Mutation allows evolution. It’s through the infinite possibilities, the trillions of “mistakes” made in the genetic code, that species evolve and become more robust. Meanwhile, the same process can cause all sorts of grief for individual families.

Both Cassandra Laing and her older sister Amanda died early – in their late thirties – of breast cancer.

Fortunately, Deb and I are now in the clear. On Sunday, October 25, Deb is going to take part in the Seven Bridges Walk to raise money for the Cancer Council. It’ll be a 27 kilometre walk around part of the spectacular Sydney Harbour. I can’t go myself because I’m already committed to the Plants and Animals exhibition here in Bathurst, but I’ll be there in spirit! See Deb’s donation page here, if you’d like to support the cause.

The first hint of spring

What’s that in the air? Could it be a hint that this winter might one day end? We’ve had our snow, we’ve had our shocking news, we’ve had streets of trees without leaves. But there’s a trace of warmth in the air. And on Rocket Street, up the hill, there’s a tree in full pink blossom. Yes, it’s quite possible that – in a few weeks’ time – we might emerge from this winter into spring.

In my own garden, it’s Yellow Flower Season (YFS). The Cootamundra wattle is blooming and the daffodils are out.

Not only that, but I’m ten out of ten! I’ve just had my latest three-monthly cancer check, and my CA125 level is 10. Considering that when my tumours were in full flight my level was in the late two thousands, this is a magnificent result. It’s now a year since my last dose of chemo. Life stretches out, lazily, ahead.

A little too lazily. I’m still having trouble getting out of bed in the mornings. At the appointed time, it still feels like it must be 4am and what the hell is going on?

Pattern by WhittyB/Etsy

Oh, I finally finished the cross-stitched uterus and ovaries for my gynae-oncologist. I forgot to take a photo before I handed it over, but it looked just like this. I added the words “Here’s trouble” because that’s basically all I got out of decades of female reproductive organs. My doctor, a brisk, practical woman (I worship her, along with my Upper GIT*), looked at it briefly and said, “Good stitching.” And: “I’m not sure where I’m going to put this.” She’s not one to fake joy – too busy. But I don’t mind. I enjoyed making it & I really don’t mind what she does with it.

On Wednesday, I’m going to be delivering a little talk about my crocheted body parts at Nepean TAFE in Kingswood at 1pm. The general public is welcome, so if you’re in that part of town, feel free to pop in! Details from Cath Barcan at Catherine.Barcan@tafensw.edu.au.


* Upper Gastro Intestinal Tract surgeon

Who do I think I am?

It was the night before the flight to Tasmania. I still had a pile of marking to get through. I was procrastinating by trawling through the ancestor-hunting Ancestry.com.au. I’d trawled before, but always signed out before they got my credit card. Now, I’d finally succumbed. Once I had, I wished I’d signed up earlier*. So here it was, the full story on my computer screen:

Dawes

Dawes Who Rode

During the American Revolution, my ancestor, William Dawes, had teamed up with Paul Revere to ride through the night and across rivers and streams, warning, “The British are coming!” This ancestor is now known as Dawes Who Rode. A few begats down the line and we arrive at a John Pomeroy Dawes who sailed for Australia on the Golden West in 1858, aged 23. He begat Sidney Dawes, father of my Nana, Doris May Dawes. She married Francis Sorensen and had Dad, and Dad had Deb and me, and Deb had Max and Joe. There are two interesting middle names that appear through the family tree: Pomeroy for boys and May for girls. Both are the maiden surnames of the wives of earlier Dawes.

Growing up, we knew none of this, and nor did Dad – at that time. He found out in the early 2000s when a friend of my sister Deb began trawling Ancestry.com. It would appear that even Dad’s mother, Doris, was ignorant of her family’s past. If she’d known about the outstanding historical personage in her family tree, she might have made something of it. Or perhaps not. Was there any cachet, in a still very British nineteenth Australia, in saying your ancestors had fought the British? Instead of passing on facts, Nana appears to have made stuff up. She apparently liked to say the snake skeletons on the ground where she grew up were so big that you had to jump over them on your way to school. She said the kangaroos where she grew up were so tall that they could look over the tops of train carriages. The generations of Boston Dawes appear to have been well-to-do, establishment families. By Dad’s generation, there was no hint of that. He knew his family on his mother’s side as Queensland timber-getters. His father, Francis Sorensen, was a carpenter. Dad left school at 14 to become an apprentice suitcase-maker (a project that didn’t last long). When we went to sprinkle Dad’s ashes around Moreton Bay, we caught up with our cousin Sandra. Sandra, unlike us, had grown up around Nana. She said there’d been a point in late childhood at which she’d stopped believing Nana’s stories. Dad never got on with his mother. Perhaps that’s why we grew up on the other side of Australia, in Carnarvon, as far away as you could get from Brisbane without actually leaving the country. I remember Nana sitting on my bed during a visit to Carnarvon when she’d tried to talk Dad into going back to Brisbane. She’d come with her other son, our Uncle Frank, and his girlfriend Lorrie. I looked at the vertical lines on Nana’s top lip. She spoke vigorously, emphatically. I noticed she said “orf” instead of “off”. That’s the last I saw of her.

I do have a couple of earlier memories of her. In one I’m lying on what might have been a window seat in what must have been her house at Ormiston. I can only be about three years old;  it’s before we left Brisbane. Across the room, a black and white television is on. I’m going in and out of sleep. I have a strong, eerie sense of deja vu or perhaps premonition. I dream that a pipe or cylinder will rise up out of the ground and there will be an old, admonishing man in it, waggling his finger at me, and this will be terrifying. This is exactly what happens, on the TV.

SnapdragonAnd then, a few years later, on a trip back to Brisbane from Carnarvon – it must have been the trip where we drove across the continent to see Pop, Dad’s father, in hospital – Nana is showing me her snap dragons. She’s growing carnations and snapdragons at commercial scale on the property at Ormiston, or nearby. She squeezes the snapdragon to show how it opens its dragon mouth.

But Dad didn’t get on with her. He got on with his Dad. They’d worked together on Stradbroke Island, working for the sand mining company, making functional asbestos buildings. Pop died at 64 of something wrong with his lungs. Dad died at 72, held together by modern medicine, also of lung disease. They were both heavy smokers, but maybe asbestos filaments were also part of the story. Dad never had a biopsy, only X-rays that showed the creeping fibrosis. I typed Dad’s details into Ancestry.com. It killed me to add the end date, now known: June 18, 2013.

Steve came and stood next to the computer, looking over my shoulder at what I was doing. I was brooding over the births and deaths. Not marking. Not getting ready for Tasmania.

The next morning, I did finally get ready. We spent two rich weeks in Tasmania.

And now we’re back. Today, I have bedraggled, frost-bitten snapdragons out the front of my house. I’m dragging away the remains of last summer’s veges and herbs and masses of nasturtiums from the garden just out of the back door. It’s cold here, just as Tasmania was cold. We’ll be adding chook manure to the garden and digging it in, ready for Spring.

* This is not a sponsored post for Ancestry.com!

Nine is nice; 422 not so much.

nine_from_sesame_streetI think I’ve written before about the joy of nine. Nine is the nicest number. It’s lovely when you have a blood test and wait, shaking in your boots, for the results, only to be told: “Nine”. I couldn’t actually wait for the appointment with my chemo doctor. I got on the phone and asked a nurse to give me a sneak preview. She came back on the phone and said nine very casually, in passing, as though it would have been all the same if it were some other number. Great wave of relief. Another two and three-quarters months of getting on with everything until the next blood test and the next set of results.

That sorted, I set off for Sydney for my three-monthly checkup, which would now just be a matter of just going through the motions. I got myself to Sydney and set myself up in my temporary lodgings in Newtown amongst the kelpies (actually two kelpies, a kelpie-border collie cross and a visiting whippet) and then set off for the city. I discovered a 422 bus was coming shortly – all good. But then, talking to my fellow bus-stop person, I realised I’d forgotten something. I needed an Opal Card. You can’t just get on a bus and give the driver your small change any more; you’ve got to go to a nearby newsagent and get this card, which is all very wonderful but not if you want to catch THIS bus right NOW. I dashed half a block down to the newsagent, got hold of my Opal Card and saw that the bus was just arriving. I darted for it and my knee went into a spasm. I limp-hopped as fast as I could but the bus wasn’t waiting for me. The driver’s head was deliberately turned the other way. People on the street were sympathetic. One woman thought I’d actually been hit by the bus because all the events – run, bus, limp – seemed to clash together. I said no, my knee just went, all by itself.

So I limped away off, expecting that any minute now, my knee would shake itself back into position. But it didn’t. I went on limping. I went on fuming about the 422 bus when really it was all about my darting and dashing and not proceeding in the proper stately manner. I’m still limping but my Bathurst GP tells me I just have a minor medial meniscus tear, aka Sore Knee, and it’ll right itself over the next week or so. Anyway, here’s another fave tune from Sesame Street:

Bilby time

Bilby

Bilby/Australian Geographic. Photo: Mitch Reardon.

It’s Easter again. I’ve been thinking about last Easter, when I’d just had my second chemo session, and was whiling away a bit of feeling-nasty time by Googling the medical effects of crucifixion. That searing time seems remote, now.

I’m also thinking about my friend Sue who was diagnosed with ovarian cancer around the same time as me. We went through treatment parallel with each other, in different Sydney hospitals, and finished up at around the same time. We were both sent on our way in remission. But now, just a few months later, Sue’s cancer has come back. She’s back in the chemo chair for another grueling round.

For me, it’s so far so good. Somehow I’ve managed to go from nothing to too-busy, like a tap that can’t just come out slow but is either off or at full gush.

I have been resurrected. I’ve got back into the groove of teaching, which I enjoy.

This time last year I was working on my Waste to Art entry; I’m entering again this year. This year’s theme is waste metal, and I’m back on the 1960s and ’70s ring pulls found on Mt Panorama. I’m still finding a few every time we go up there to walk Bertie. He goes hunting for Maccas scraps and I keep my eyes peeled for ring-pulls. I was going to arrange them on a flat board with little hooks, but I’ve decided to hang them in a mobile. They’ll be painted red and black on the front, with the dirt of Mt Panorama left to cling to the back. They’ll be representing carbon dioxide, one black carbon atom attached to two red oxygen atoms. I might or might not include a found toy car.

On Monday I’ll be heading out to Kandos to help Karen Golland plant pom poms on an empty block of land for Cementa. Oh, the fun! Must take hat and loads of sunscreen!

Anyway, bilbies. An Easter mascot for a country that has a complex relationship to bunnies. A country overrun by rabbits, endlessly working to eradicate them. Better to find a different symbol of fertility and new life. Easter bilbies are cute, almost rabbit like, make nice chocolates. But they haven’t quite taken off, have they? Supermarkets are chockers with rabbits and eggs. The Easter bilby is struggling, like so much of our native fauna.

***

I’m feeling the need to add my two cents’ worth about Belle Gibson and the Whole Pantry and the whole sorry story. I’ve done my share of 2am trawling around the Internet on the cancer trail. The trail starts straightforwardly enough on reputable support sites (like the excellent Ovarian Cancer Australia) and then goes off into personal stories (I couldn’t get enough personal stories, at one point) and then, unless you’re careful, you find yourself in the wild and woolly world of wishful thinking. YouTube is bristling with them, these advocates of what a fellow blogger calls fantasy based medicine. Over the past few days I’ve watched a series of YouTube clips – a regular video blog, or vlog –  made by a woman who rejected conventional treatment for breast cancer. She described the arguments she’d had with her oncologist, who told her  flatly that without aggressive treatment, she’d die. Still, this woman decided to go it alone and try to heal herself through diet. It didn’t work. To her credit, she kept vlogging as things got worse, and eventually admitted she’d gone down the wrong track. “I’m a cautionary tale,” she told her viewers. The last clip in the series was a tribute made by a friend in her honour. And then we have Belle Gibson. Penguin publishers, a variety of women’s magazines, the Apple company … all so “inspired” by the miraculous story of a diet-based recovery from cancer by a photogenic young woman that they neglect to do a bit of basic fact-checking. I’m glad Belle Gibson was eventually outed as a fraud – it appears she never had cancer at all – before her cookbook hit the shelves. I’m glad because people with cancer deserve as much reputable, responsible information as they can get.