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Where the bloody hell am I?

Charles Perkins Centre
Where the bloody hell am I? I’m here! I’ve been here – at my desk, at this computer – since the dawn of time, since the days of earliest life in hot vents under the sea. Well, maybe not that long.

For a little while though – a precious and odd little while that feels like a dream now – I was occupying an office on the second floor of the Charles Perkins Centre at Sydney University, right out the back near Missenden Road. My name was on the door! I was the Writer in Residence in an illustrious building full of petrie dishes and test tubes. People chatted about knockout mice as they were getting a coffee in the staff room and the fridge had a big sign warning everyone to use it for human food and drink ONLY (and presumably not for storing parts of scientific experiments or chow for the knockout mice). Two different tech dudes appeared to get my laptop to speak to the large monitor and once that was sorted, I started having odd conversations with scientists. One of these chats actually started with both of us declaring that we loved poo. Yes! (His area is the gut microbiome.)

I’m writing a novel in the form of a cancer memoir from the point of view of my abdominal organs (working title: The Pouch of Douglas). There’s Panno the Pancreas, Ute the Uterus, Liv the Liver, Maureen the Greater Omentum, Col the Colon, and so on. They’re all freaking out because two tumours, Bunny and Baby, are refusing to obey the rules of cell regulation and are getting way too big for their boots. With the Charles Perkins Centre dripping in experts of the human body and how its various parts speak to each other, the centre was the perfect place to get inspiration and advice for this venture.

Actually, I still am the writer in residence, the project continues! But the “in residence” bit of it has been made untenable (for now) with the onset of Covid19. I don’t have a spleen, I’m a cancer survivor, and while I feel robust, I’m probably in the “could end in tears” category if I actually caught the virus. So I was quick to scuttle out of the building and retreat to Bathurst. I thought I’d lay low for a couple of weeks and, once the coast was clear, head on back. Ha ha ha! The virus got the last laugh there.

So, like many others privileged to be able to do so, I’m working from home. I continue to Zoom in to scientific presentations when I can. There’s one coming up later today titled “The greasy link between obesity and cancer: membrane remodelling mediates selective exosome miRNA loading”. Well, I get the first part of that title but I’m entirely lost by the end of it. Approximately 95% of such presentations fly right over my head but there’s always something in it for me. First, I’m slowly absorbing biological information by osmosis and second, someone always says something so damn poetic that I get a little shiver. And they don’t even realise they’ve done it! I write these things down. As Margaret Atwood has said, I’m here to steal the shiny bits.

But not just to steal the shiny bits. Science is having a lot of trouble hanging in there in the face of nonsense, like people refusing to wear masks because this whole virus thing is a government conspiracy. Arrgh. I’m loving this opportunity to be a humanities gal in the midst of the hard sciences, with the respectful exchange this project provides. They might be able to work out who’s who in the zoo in terms of molecules in the petrie dish, but we can help get some of those ideas out into the minds of lay folk.

At one point there it looked like I’d be back in the building by the end of July. But with these new viral waves in Victoria and New South Wales, I may need to hang back. Sadly, I may not physically get back there before the residency officially ends at the end of November.

So: my bum is on this seat in Bathurst but my mind is Zooming both far and wide and also deep into the material of my own guts.

Angelina, Auntie Joyce and me

Angelina Jolie and me – our bodies have a lot in common. Okay, hers is taller, thinner, more symmetrical and generally more pleasant to look at, but down at a cellular level, we’re both carrying genetic material that has caused all manner of problems. Because Angelina is famous, and people were intrigued to discover she had voluntarily had her beautiful breasts removed, people have become aware of the BRCA1 gene. Because it’s associated with breast and ovarian cancer, people think it’s an evil gene. In fact, it’s the opposite. Apparently, we all have bits of code that tell cells to go forth and multiply. Go on, cells, take over the world! Then, to balance that out, we have a bit of genetic code that says, Hey, not so fast! You’re not helping! These “not so fast” bits of code are anti-tumour genes, and BRCA1 is one of them. The plot thickens when genes mutate. On a big-picture level, genetic mutation is a wonderful thing. It’s how we got out of the primordial slime to live a comfy life on land. But at an individual level, it can have disappointing results.

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Okay, I just spent the last 15 minutes Googling evolution and the BRCA1 gene. Because the onset of cancers is usually at over age 40, women through the ages have been living long enough to have children, but dying before they could become grandmothers. If evolution is about survival of the fittest, how could that have been useful? In my thorough 15-minute scholarly study, I’ve found two possible evolutionary advantages that counteract the disadvantages: the mutation has also been associated with increased fertility and increased lactation. So, lots of babies combined with early death combines to create a nice bit of evolutionary equilibrium. Great.

Joyce with Sandra (baby) and SharonGoing back to the experience of individuals – I think of all those female ancestors on my father’s side, going back through the generations, who would have suffered and died as a result of this unwelcome inheritance. And what psychological effect did this have on their families, to be losing mothers and grandmothers in their 40s and 50s? This is a picture of my Aunty Joyce and her children, my cousins Sandra and Sharon. All three inherited the BRCA1 gene mutation. Sharon died of ovarian cancer in her early 40s; the other two have survived breast cancer. Sandra’s daughter Becky has the gene mutation and Becky’s daughter Maddie doesn’t know yet, because she only a small child. It would appear the mutation came down the line to me like this: from Francis William Sorensen to his children Brian (my Dad) and Joyce (aunt). From Dad to both his daughters, Deb and me. Deb has had breast cancer (all clear now) and I’m working my way through treatment for primary peritoneal cancer, the lucky door-prize variant of ovarian cancer that you can still get even if you no longer have ovaries (because you’ve had them removed to avoid ovarian cancer).

Saint Angelina art work in progressAnyway, back to Angelina. As discussed in earlier posts, I’m working on a Waste to Art exhibition entry in which I pulp and recycle old journals, creating new stories from the raw material of the old. I’ve been working on a page called Saint Angelina, a riff on Saint Agatha, who was tortured by having her breasts pinched off with a set of tongs. Agatha is traditionally pictured holding her severed breasts on a plate. I overlaid images of Angelina and St Agatha in Photoshop, printed out the composite image, traced it using a Hobbytex transfer pencil, and ironed it on to my recycled paper. I couldn’t really be bothered with the intricacy of the medieval border (and my paintbrush was annoyingly splayed) so it’s a bit of a mess. Will keep working on it. I was going to stick to ordinary old blue, black and red biros (to reference the way my original journal was written) but my friend Karen Golland encouraged me to load on the colour and this is much more enjoyable.

Good causes news flash
My dear friend Julia Manning is going to ride from Sydney to Surfers Paradise to raise money for Youth Off the Streets organised by the Rotary Club of Engadine. You can sponsor her at this link. Click through using the following path: Make a Donation – Give a One Off Donation – Enter your Amount – Don’t use My Giving – Donation in your name – Donation is made in support of cyclist Julia Manning.

Hairfall

I have hair all over my front, as if I’ve been holding a very long-haired cat. Yes, the great hairfall has begun. I know it grows back, but I’m facing months of baldness and I don’t like it one bit. It’s funny, you can be facing a monumental threat to your life but you can still be angsting about the hairs on your head, the most dispensable bits of your anatomy. Liver, stomach, lungs, heart, brain … these are the real engine-rooms of life, not hair. But hair is all about the face in the mirror, the face in the street, the face at the supermarket checkout. The absence of hair is a public marker. My hair is falling and I’m slowly falling, falling down the rabbit hole.

But as I lose hair, I gain scarves and hats. My friend Helen has brought around a big bag of them. My sister Deb has a wig (from the days of her own chemo for breast cancer) that is apparently a bit Chrissy Amphlett and she didn’t like wearing it, but it’s sounding good to me. Looking forward to trying it on.

Now, Medicare. I just want to take a moment to sing the praises of universal health care. There’s a lot that doesn’t work, that I don’t like, about our society, but Medicare is something I do like. Fervently support, never take for granted, fear for. As we know, the Abbott government is eyeing it off, saying we can’t afford it. It’s true that this health system is, compared to that available to most people in the world, extraordinary, and extraordinarily expensive. When I go in for surgery in April or May, I’m going to have a gynaecological oncologist at one end of the operating table and an upper gastrointestinal tract specialist at the other. I may even have a colo-rectal specialist on standby. Three specialists, among the best there is, all working their diaries so they can be there at the same time to slice out my tumours. There’s a great big pile of money right there. And yet there’s not a whisper of the expense. It’s all taken care of. This care is, in principle, equally available to anyone who shows up with similar problems. Nobody looks up from the computer and says, well, how much money do you have in the bank? Can you mortgage your house? Do you have rich relatives? Reading through cancer blogs written in the United States is heart-breaking. These are real questions in that country. Serious illness can bankrupt people, force them to sell houses, make them decide they can’t afford to be treated. Barack Obama has been trying to change this, but he’s had to fight the lunatic right raving about the threat of socialism – communism! – contained in universal health care. (And yet they’re quite happy to let taxpayers fund their universal military “care”.)

I remember back in the 1980s, Margaret Thatcher saying there was no such thing as society. Just individuals and their families. Society shouldn’t be asked to look after you; you and your family will have to see to that. As I lay in hospital a few weeks ago, I watched the nurses coming and going, making beds, checking blood pressure and temperature, helping elderly people go to the toilet. That is society. As simple as that. Here in Australia we don’t have to be well off, or anything special, to be looked after in hospital. Long may it continue.

On the other hand, there’s hospital food … okay, I’ll leave that for another post.