Category Archives: BRCA1

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.

It isn’t easy being green (or pink, teal or purple)

I’m writing this with Australia batting against India in the background. Steve is standing behind the sofa watching, making “ooff” sounds, which is what he does when watching any sort of sport, whenever there is a significant movement.

On New Year’s Eve at Fiona Green’s place I found myself saying that this year I’d learn the rules of cricket. It’s weird when you hear yourself say something surprising. Where the hell did that come from? I can only guess it had something to do with Dad, who might have been hovering around in spirit – drinks and a big bonfire in a backyard could easily have attracted him. Dad always played and watched cricket and I always sidestepped it because to be honest it always seemed deadly boring to me. Men in white clothes standing solemnly around in the belting sun; the occasional flurry followed by more standing around. My evasion became a lifelong habit. But Steve likes to watch the cricket and when he does, there’s an echo of earlier times. And now I feel slightly bad about living through all these Australian summers and still not knowing the rules of cricket. So I’m going to give it a go. This will not be easy. I will have to fight a strong desire to immediately do something else. Like maybe arranging crockery shards by colour or size, in anticipation of one day making a mosaic table top. Or sorting old photos into albums. Rules of cricket. Why did I say that?

***

When I sat down to write this I was distracted by the cricket. What I was really going to write about to today was Purple Day! Today is international epilepsy awareness day. Epilepsy makes the brain fire off in all directions, leading to fits and seizures. My little nephew Joey succumbed just after his third birthday with a particularly nasty form of the disease, the Doose syndrome, which is resistant to medication. He was having twenty or more seizures a day. These involved sudden “drops” or “flops” to the floor. He’d be conscious again immediately, and sometimes crying because on the way down he might have hit something hard like the edge of a coffee table or a concrete birdbath. So he took to wearing a blue helmet. At the end of 2013, a few months after Dad died, things got so bad that he

Joey with Hazel the therapy dog.

Joey with Hazel the therapy dog.

ended up in Sydney Children’s hospital for a long stretch. I remember going to see him there when he was visited by Hazel the therapy dog. I also went upstairs with him and Deb for one of his brain tests. His little scalp had electrodes taped all over it. And he was well and truly over it. Sick of all this crap going on. The good news is that a few weeks later, the seizures had stopped. He got all the way through last year, his first year at school, seizure free! Did the medication combo finally hit the right spot? Had he simply grown out of it? Nobody really knows. Today, in honour of Joey, I’ve purpled up my Facebook profile picture and I’m writing these paragraphs in this blog.

***

Meanwhile, at the end of 2013, I wasn’t feeling that crash-hot myself. It turned out to be primary peritoneal cancer, a variation on ovarian cancer, explored at great length here in this blog. The awareness ribbon for this is teal. Shortly before that, Mum got in on the illness act with a spot of bowel cancer, which thankfully was removed all in one go in one operation, and she didn’t have to have chemo or any further treatments. Now, what colour is the awareness ribbon for bowel cancer? Could it be …. brown? Surely not. Must Google it. Back in a moment.

Wow. There are a lot of awareness ribbons. I guess there’s a lot to be aware of. “Use the search box to find your illness or cause”. Okay. Looks like blue or periwinkle covers the bowel. But using the search term “colon” does in fact bring up a brown ribbon! Speaking of bowel cancer, an ex boyfriend has been diagnosed with it, and is in for a long and involved treatment regime. Thinking of you (while not breaking your anonymity here!)

***

After Deb got breast cancer (pink ribbon, everyone knows that) and Joey started having seizures and Dad died of pulmonary fibrosis and Mum got bowel cancer and before I was diagnosed with ovarian cancer, Deb did say, at one point, “What were we in a past life? Axe murderers?” We don’t subscribe to deserved illness theory any more than we subscribe to the deserved good fortune theory. But there are moments that make you wonder. Anyway, we’ve almost got a rainbow of ribbons, just in one family, and all just in the past few years. Before that we’d had a very good run.

***

Which brings me, finally, to the green ribbon, or should I say Greens ribbon, that I’ll be wearing on Saturday, the day of the New South Wales state election. I’m not a member, but I’m happy to support the local candidate, Tracey Carpenter, who has been running a very serious and successful campaign. It’s actually not that hard being green, if you’re able to steel yourself against the waves of warmings and extinctions, fracking and fossil fuel-burning. I’ve been doing a spot of handing out how to vote cards at the pre-polling booth in Bathurst. A couple of weeks ago I went along with Tracey when she drove up to Rylstone in the north of the Bathurst electorate to meet and greet at the annual Rylstone-Kandos show. With iPhone in hand, I spontaneously decided to record her talking about her policies, as she drove. Here it is: