Category Archives: BRCA1

Gawler: For and against

Many of you will have heard of Ian Gawler, author of the best-selling book, first published in 1984, You Can Conquer Cancer. Like The Lucky Country, the title of the book is a sort of ambient phrase in Australian culture. Even if you haven’t read the book or paid much attention, its four bold words lurk somewhere in the background. I’ve been thinking about the book since washing the dishes on Saturday afternoon while listening to a podcast featuring Tim Baker, author of Patting the Shark. Tim’s book is a both a beautifully-written cancer memoir and a plea for a more wholistic approach to cancer treatment. Rather than dropping an earth-shattering diagnosis on people and leaving them to it, Tim says doctors should be directing their patients to information about diet, exercise, meditation, counselling and even other supportive activities such as writing workshops. Treat the whole person, not just a body part. In the podcast, Tim, who is living well and for a long time in the aftermath of a metastatic prostate cancer diagnosis, repeated a striking quote from Ian Gawler, with which I wholeheartedly agree (I’ll come back to this below).

But first, I want to set out the case against Gawler’s claim that you can conquer cancer, just as he did. Gawler’s claim, that he cured his metastatic bone cancer using diet and meditation, was always intriguing to me, but not particularly salient until I first got cancer myself, back in 2014. Then it came more sharply into focus as a way of thinking about cancer and science and medicine. While my first response to my diagnosis was Nuke it. Gimmee everything you got., I had people telling me there was another way. There was an alternative to mainstream medicine with its phalanx of scans, tests, chemotherapy, radiation, immunotherapy, surgeries, drugs and searing side-effects. There were more “natural” ways to treat cancer.

Yes, there are always other ways, other choices to be made, when confronting a shattering diagnosis. There could be any number of reasons for rejecting conventional cancer treatment. At an individual level, they’re all valid responses. What concerns me is how Gawler’s enormously influential book plays into what seems to me to be a growing rejection of, or misunderstanding of, the scientific method.

Okay, one more thing to get out of the way before I go on: Ian and Ruth Gawler would vehemently dispute my use of the word “alternative” to describe their approach to medicine. They prefer to use the phrase lifestyle medicine, describing this as a way of focusing on “what we can do for ourselves to recover from illness, and improve our prognosis and symptoms”. Their website does not advocate the Gawler program as something you should do instead of conventional cancer treatment. Their website simply sets out the case for the benefits of lifestyle interventions, meditation in particular. I also want to acknowledge that thousands have found Gawler’s meditation retreats enormously helpful.

But. But. Gawler’s great persuasive power rests on his claim that he conquered his metastatic cancer through lifestyle medicine after conventional treatments had stopped working. It is a claim that has come under intense scrutiny in recent years. Claims such as Gawler’s – intentionally or not – give credence to all sorts of quacks and shysters operating in the cancerverse. In 2014, as I was undergoing sometimes gruelling chemotherapy and surgery for advanced cancer, Belle Gibson was looking gorgeous, being feted by the media, gaining a national profile, and making a lot of money. Gibson was claiming that she had had terminal brain cancer (and a host of other types of cancer), and that she had cured herself by “natural” means, mainly diet. Her recipe app had been downloaded 200,000 times within its first month. A lavish cookbook based on her recipe collection was published by Lantern Books (an imprint of Penguin Australia) in October 2014. By March 2015, Gibson’s whole house of cards was crashing down. She was forced to admit she had never had cancer, and that her whole enterprise had been based on a tissue of lies. Penguin withdrew the book from sale (although you can still get it on eBay) and apologised for not scrutinising Gibson’s clearly controversial claims. All those involved in promoting Gibson quietly withdrew with their various tails between their legs.

A decade later, Gibson might be gone from the scene, but the snake oil continues. A quick Google search produces a piece published by Yahoo! News last Wednesday titled How to survive cancer without chemotherapy? by Roman Franco. “There is a great variety of alternative treatments to fight this terrible disease and the best option in this area is located in the city of Tijuana, Baja California,” writes Franco. The puff-piece for BahaMed lists treatments including “special diets, high vitamin dosages, laser therapies, emotional balance therapies, immunotherapies among others”; these are described as “minimally invasive” with low side-effects. (BahaMed’s particular modus operandi for getting desperate people to part their cash is is detailed in this piece by McGill University‘s Office for Science and Society.) Closer to home, Apricot Seeds Australia claims that a concoction made up of the juice of 1 beet, 1 carrot, 1 celery stick, half a potato and a radish is a “cancer killer”.

Gawler’s intentions are no doubt far from the Belle Gibsons and apricot seed purveyors, but that ambient phrase, You can conquer cancer, and widespread knowledge of his own particular cancer story, has been out in the world since 1984, doing its own work.

The fact is that there is no peer-reviewed scientific evidence that lifestyle medicine, used instead of conventional cancer treatment, can cure cancer or produce long-lasting remission. Claimed cases of complete remission brought about in the absence of conventional treatments tend to falter under sustained interrogation. Investigation often reveals that surgery, chemotherapy, immunotherapy, radiation or other conventional treatments were used at some point along the road. Or what was thought to be cancer was actually a misdiagnosis. Oncologists Ray Lowenthal and Ian Haines argue that Ian Gawler’s primary cancer might have been completely removed when surgeons amputated his leg back in 1975, and that what appeared to be secondary cancer may actually have been tuberculosis, which can look similar on X-rays. Anita Moorjani‘s spectacular remission after a near-death experience may have owed more to chemotherapy than she allows. In conversations with people claiming to know someone who had cured their own cancer “naturally”, I’ve noticed that they get vague when asked about the details of diagnoses and treatments. They can’t tell me the names of the diagnosing doctors or whether the person had had conventional treatment somewhere along the line. As I said, every choice is a valid one for people with cancer. How we do this is up to us, whether that’s about relying on prayer or meditation or doing nothing at all and simply letting things run their course. But if you really do want the best shot at extending your life or going into remission, the science is clear: conventional medical treatments are where it’s at. There are no guarantees, but they give you the best shot.

My other beef with You Can Conquer Cancer is that sometimes, you really can’t. You might go into remission, only to have the cancer come back within months. You might try every therapy under the sun, and find that it still gets you in the end. Sadly, this is a very common story. The phrase, You Can Conquer Cancer, feeds the idea that to “lose” the “battle” with cancer is to fail to be positive enough, courageous enough, disciplined enough. As a person living with an inherited genetic mutation that dramatically increases the risk of breast and/or ovarian cancer, it makes me angry. I’m sure the cancer-conquering narrative is not meant to make people like me feel bad – quite the opposite, I’m sure – but I can’t help feeling a distinct lack of compassion, a judgemental tone, in the idea that it’s all down to me to take control of my own destiny and “win”.

Actually, it’s laughable. Can I conquer cancer? Little old me? Really? The idea is individualism gone mad. The other day I watched the first episode of the ABC TV series The Chemical World presented by biomedical engineer Dr Jordan Nguyen (this came out three years ago; I saw it on iView). In it, Nguyen discussed the common DNA that exists in human beings and sea sponges. Yes, it would appear that you and me and sea sponges all have a common animal ancestor. DNA mutation (“errors” in copying genetic information) drove the process of evolution that allowed us to branch off from our spongy cousins, grow fingers and eventually learn to crochet. Genetic mutation, whether inherited (the BRCA1 gene mutation, for example) or acquired from the environment (from a lifetime of smoking, for example), is what causes cancer. Damaged or faulty genetic coding makes cells go rogue, multiplying recklessly, threatening the host organism and, ultimately, their own lives (they go down with the ship). So, genetic mutation comes as a job lot: on the one hand it gave us a pathway out of the primordial soup; on the other, it can cause cancer. Cancer is as natural as a sea sponge. That I might be able to “conquer” an ancient force like genetic mutation, all by myself, seems ridiculous to me. Yes, as a species, drawing on millennia of accumulated knowledge and skill, human beings might be able to pull off a cure for cancer. That day may be coming soon; bring it on! But me? With nothing but my own food choices, exercise regime and YouTube meditation clips, I can extinguish the fast-growing tumours inside me? No, I don’t think so.

Just to be clear, I’m not saying that meditation, diet, yoga, tai chi, exercise and a host of other “lifestyle” measures are not enormously helpful for people with cancer (and people in general). In some cases the benefits are backed by scientific research; others may be anecdotally effective but have not (yet) been through rigorous trials. A therapy may go all the way from “alternative” to “mainstream” after extensive clinical trials. Cannabis and magic mushrooms now have a place in mainstream medicine due to scientific evidence that they do help some people to cope with serious mental and physical illnesses. As Tim Minchin entertainingly put it, “alternative” medicine that is backed by scientific evidence is actually just … medicine.

Another thing to clear up is the difference between alternative (untested or tested and found ineffective) therapies and complementary medicine. Alternative therapies are used instead of conventional medicine; complementary therapies are used alongside conventional treatment (often with great results). Tim Baker calls this taking his MEDS. This stands for Meditation, Exercise, Diet and Sleep. His MEDS are self-prescribed, and he attributes his quality of life to them. But he also undergoes conventional treatments when indicated. Once again: A healthy lifestyle can help prevent cancer, and improve quality of life after diagnosis, but the evidence is clear: it can’t, on its own, cure it.

I’m also keen to dismantle the false division between “natural” and “unnatural” products or therapies or lifestyles. Nothing on this Earth (in “this dimension” at least – see footnote below) stands outside of the fundamental facts of nature, of physics and chemistry. In that sense, everything is “natural”, by definition. Chamomile has been used for centuries for its calming, sedative effects. Studies like this one provide a scientific explanation for what many have experienced. It’s a folk remedy with scientific backing. Taxol, a substance originally derived from the Pacific Yew Tree, has been shown to be an effective treatment for ovarian cancer, but because it is used in chemotherapy, it is seen as “unnatural” by some in the alternative medicine camp. So why is one plant-based substance natural and the other not? Arguing about whether something is or isn’t “natural” doesn’t make much sense. What makes more sense is finding out about how things actually work, and whether they help or hinder the goal of maintaining human (and non-human) health. Ingesting the tiny bit of arsenic that is found in apple seeds? No problem. A teaspoonful of concentrated arsenic added to a cup of tea? Death within minutes.

I’m concerned that the baby (science) is being thrown out with what I acknowledge is really filthy bathwater (the predatory inclinations of Big Pharma, Big Food, industrial polluters, etc). I want to say: That baby is precious. By all means throw out the bathwater, but don’t send her down the drain along with it. We need to acknowledge that this biosphere, and the universe as it is gradually revealed to us, operates according to rules (of physics and chemistry) that must be heeded.1 The scientific method means that over time, we replace good explanations with even better ones. We used to think the Sun revolved around the Earth. That explanation made perfect intuitive sense, and served most of the purposes of daily life. There’s the Sun, rising in the East and setting in the West. You can see it with your own eyes! After much scientific discussion (and the odd accusation of heresy), most of us now agree that the Earth orbits the Sun. This explanation is now supported by a mountain of evidence (including successful moon landings). As a society, when it comes to making decisions like action on climate change, or whether to allow a particular drug to come onto the market, our decisions need to be based on evidence, not on wishful thinking or intuition or belief or the loudest voices.

Of course, Western science is not the only way to achieve wellbeing and sustainability. Sixty thousand years of sustainable living on this continent shows us that. First Nations peoples threaded the rules of sustainability and health for all living things – care for Country – through every aspect of their culture. Today, the scientific method can help modern industrial societies return to principles such as constraint and a respect for non-human creatures. How many parts per million of carbon dioxide in the atmosphere will tip us into unliveable global warming? What can we do about outbreaks of blue-green algae that kill fish in the millions? Of course, science can be used to work out how to maximise salt and sugar in children’s food to make it addictive, or to track and catch the last fish in the sea. Science, like the English language or the telephone, is a tool. It’s how we use it that matters.

And now, finally (this might be my longest blog post ever; thank you for hanging in there), I’ll return to Ian Gawler’s striking quote, as repeated by Tim Baker in the podcast I was listening to as I did the dishes.

“I did a couple of retreats with a guy named Ian Gawler, the noted cancer survivor, and Ian said something that’s always stayed with me,” said Tim. “He said, ‘An acceptance of one’s mortality is entirely compatible with the will to live’.”

Like Tim, I find this a powerful and refreshing statement. I want to live, and yet I accept that at some point, along with all other living things, I’m going to die. Life, like genetic mutation, is a job lot. Life holds death in its belly; life is unimaginable without death. To really embrace these two facts, together, rather than hang on grimly to one while denying the other, is to suddenly feel the preciousness of life.

“When it’s actually embodied, when you actually feel it in your bones that life is temporary, then everything’s enhanced,” said Tim. “You know, I felt like my life was in high definition.”

I, too have had moments of life in high-definition. Cancer certainly focuses the mind. You look at a flower, or clouds in a blue sky, or a kelpie shaking water off itself, and want to cry over them because they are all so beautiful and you have taken them for granted.

  1. At least in this physical world, the one we were all thrown into at birth, the one that affects us and that we affect. There may be other worlds in the multiverse that operate according to different rules; we may be living in a giant simulation; we may leave this vale of tears and go somewhere much nicer after death, or come back over and over again until we’ve learned our damn lesson. These are all interesting possibilities. But they’re outside the scope of this blog post. ↩︎

On side effects

Just thought I’d add some musings about side effects. The Zejula tablets are working beautifully, confirmed by a recent blood test. But they do come with side effects. I’m not grizzling about this (much) because they’re very good at what they do. But for the sake of public information (and maybe a bit of grizzling) I think they’re worth enumerating.

This pic shows the box of Zejula tablets surrounded by a whole lot of other substances that I have used against their side effects: Movicol for constipation, lozenges for an on-and-off sore throat, antacid for indigestion, a lipid-based spray for dry eyes, paracetamol for headaches and mouth wash for dry mouth. There are other side effects too, that I haven’t tried to visualise here: brain fog, yellowish skin, a touch of anaemia, random moments of sudden-onset tiredness. But if you set these aside the far greater danger of not taking the tablets, these are pretty inconsequential. I’m up for it, and so glad these tablets exist.

Anyway, I feel pretty good today. Today, the side effects are way in the background. In the foreground I’m enjoying this beautiful day and the ever-blooming portulacas that self-seeded into a bit of dirt between the pavers just outside the back door. And doing a spot of sewing and craft and thinking about writing if not actually writing. (Yes, this is writing, but not writing-writing.)

This morning, despite feeling great, I found myself thinking about side effects. All of life on earth is just one big side effect. Evolution (giving us flowers and dolphins) and cancer (giving us trouble) are both “side effects” of genetic mutation. The death of old shells gives hermit crabs somewhere to live. The colonisation of Australia that began on January 26, 1788, was done in the name of crown and glory and somewhere to put convicts. The side effects of this adventure included the dispossession of the locals (rationalised through terra nullius, the idea that this land belonged to “nobody”), and, later, Peter Dutton’s call to boycott Woollies for not stocking Australia Day merch. While some side effects might be “worth it”, others have been dubious from the outset. One side effect of of discovering how to split the atom – equations written in chalk on blackboards – was the creation of weapons that could obliterate our own species. In some ways we are quite good at thinking through the potential side effects of a given course of action. It’s core business for the insurance industry and teachers who take primary school students on excursions. In other ways, though, we suck. See climate change and stockpiled nuclear weapons and over-fishing. On issues like these, our species is still in pre-school, running around with our hands over our ears, yelling la-la-la over voices urging caution.

Side effects both make us and unmake us. It’s all terrible and glorious. It’s a job-lot.

Happy Col, we’re on a roll

Over the past few months I’ve learned that there is one person in my life who must be kept happy, or there will be hell to pay. His name is Col, and he is my colon. I think of him as my colon but he thinks of himself as a hard-working and loyal member of the team of organs in the Peritoneal Cavity. He’s not there for “Tracy” (whoever she is), but for the team.

A crochet colon with eyes and smile.
A happy colon crocheted by Tracy Sorensen.

Normally the organs of the peritoneal cavity are hidden from view, but once you’ve had part of your colon removed and the free end re-routed through the wall of the peritoneum, through fat, muscle and skin, to emerge into the outside world, then you get to see it. I had this surgery in 2014 during my first foray into the world of peritoneal cancer. It took two surgeons about six hours to excise my two abdominal tumours and as much of everything else they could take without actually killing the patient. They snipped the tube at the splenic flexure (upper left of the abdominal cavity) and at the sigmoid colon (the part just before the rectum) and put the snipped section in the bin1. They capped off the lower part of the tube, and brought the other end out at a point just to the left of my belly button. They folded it back on itself to form a stoma, a neat hole that would henceforth act as my anus.

I have tried to imagine how Col felt about all this (see my new novel, The Vitals), but I guess I’ll never really know for sure. What is clear is that he has a commitment to his job, and performs it as well as he can, even under pressure.

The problem with a shortened colon is that there is now less room for the results of over-indulgence. Sometimes Col just can’t keep things moving; I think he goes off for a nap to regain his strength. The result for me is increasing discomfort combined with increasing irritability. I do try to proceed normally, dealing with fellow humans and everyday activities, but all I really want to do is talk to Col: coaxing, cajoling, making promises (no more take-away Chinese sweet and sour pork with fried rice and dumplings) that I probably won’t keep. I’m not sure if he is listening or wants to listen. He has his own problems.

Anyway, today I’m glad to report that some sachets of Movicol eventually did the trick. Col cried relieved tears. Today I feel well and interested in the world again. There’s war and flood and Stage 3 tax cuts that are only going to benefit the wealthy, but there’s also two different colours of nasturtium (light and dark orange); velvety, blood-red geraniums; green tomatoes, a little forest of basil … all just a few steps from my back door.

If you know me or know some of my story, and if you’ve read this far, you may be interested in how I’m going. The question is always stated gravely, in italics. Fair enough. My situation warrants the gravity, the italics. The short answer is really well considering.

The “considering” includes the discovery of the return of cancer, this time in my lungs – nowhere else, just my lungs – followed by four rounds of chemotherapy between July and October 2023. This came after 8.5 years’ remission, as just as The Vitals was being launched into the world. The chemo cleaned up my lungs quite nicely. Within a few weeks, I’d stopped coughing and could breathe easily. I could walk uphill again without having to catch my breath. At the end of chemo, I was given “maintenance tablets”. Like chemo, these come with their own side effects, one of which is constipation (exasperated emoji).

These maintenance tables are very effective, particularly for people like me who have the BRCA1 gene mutation. Quick explanation2: When it’s working as it should, the BRCA1 gene gets in and restores the proper functioning of cells that are acting a bit weird. But a mutated BRCA1 gene doesn’t even see the weird-acting cells. This allows them to run riot at the back of the classroom, multiplying and creating tumours (I named mine Baby and Bunny in The Vitals). The maintenance tablets (called PARP inhibitors) work with the faulty mechanism of the mutated gene, making it even more faulty, causing the weird-acting cells to explode. (Maybe they don’t actually explode; maybe they just crumple into a corner and stop breathing.)

So, while it’s bad news that I have the BRCA1 mutation, I suddenly have an advantage over those with common-or-garden ovarian or peritoneal cancer not caused by the mutation (all the love and solidarity in the world to those in that position). It’s the beautiful result of years of scientific research. A fast-track to death is being replaced with lashings of hope. The tablets do not cure the cancer but they can hold it at bay for years, and possibly even indefinitely (it’s a new treatment, so not enough time has elapsed to check in on how things are going beyond about ten years).

My own tablets, which go by the brand name Zejula, are eye-wateringly expensive. A month’s supply costs $9,874.39. Because we have Medicare, the cost to me is only $30, and the rest is covered by the taxpayer. Thank you Medicare. Thank you to the Whitlam government for introducing universal healthcare, and to voters who continue to support. (We live in a world in which cancer patients’ survival increasingly depends on success with pleas for money on sites like gofundme).

In Australia, the cost is a challenge to those who have to make decisions about how much we are willing or able to spend on expensive treatments that may or may not work. Medicare is not infinite; difficult decisions must be made. The drug is still under patent, meaning cheaper generic versions are not available. At the moment, in Australia, you can have subsidised Zejula for three years; after that, it’s a matter of waiting to see what happens. Of course, if you can afford nine thousand bucks a month, you’re laughing (as much as a person with metastatic cancer can laugh).

But how am I going? I guess the question is two pronged: what is actually happening, and how I’m feeling. It’s easy to explain what is happening but it’s harder to pin down how I feel. I can go from deep gloom to sunny optimism within a day (or an hour). Yes, there’s the ever-present sword of Damocles hanging over my head but the things that most affect my sense of wellbeing are the small-ticket items: constipation, sore throat, brain fog. At the moment I’m on top of the world because Col is happy. If Col is happy, I’m happy! “All ops normal”, as Col cries in The Vitals.

Next week, I’ll find out how well the Zejula is working for me. The big reveal will come by way of a CA125 blood test. If my tumour markers are stable or going down, brilliant. If they’re going up, not so good.

In the meantime, I’m making hay while the sun shines. I’ve already started writing my third novel. By “writing”, I mean percolating and thinking, not actual words on the (digital) page. But that’s okay, because I can feel the ideas taking hold of my hyperactive brain (“Queen Bee”) and running off with them in all directions.

  1. I’d always imagined a bin under the operating table for discarded body parts, but I’ve since learned that they keep a lot of them in the fridge, sometimes for a very long time. Col’s “lost” section could still be sitting in a vault at Westmead hospital. ↩︎
  2. I’m not a medical professional. This is how I understand it, and how I explain it to others. For expert knowledge, go to sites like this. ↩︎

Here we go again

And just like that, I’m back in cancer-land. I was cancer free for eight and a half years; long enough to make me feel that every damn cancer cell had been vanquished for good. Earlier this year, like just about everyone else, I had a lingering cough. It lasted through a few days at a music festival, a long drive to and from my uncle’s funeral in Brisbane and quiet festivities for Steve’s mother’s 90th birthday on the south coast. “Oh, that’s the hundred day cough!” people said. So I wasn’t particularly concerned, just tired of it, always on the lookout for a nice lozenge that would soothe my throat.

Then one day I was doing my usual walk that goes in a big loop past the dog pound, past the cows and alpacas, past the Catholic girls’ school, and through the soccer fields to join up with the road back home. I sometimes do this walk while talking on the phone to a friend who is also walking, in her case along the Linear Park Trail that follows the River Torrens through in Adelaide. This time, just past the dog pound, where the road goes up a bit of a rise, I found it hard to walk and talk at the same time. I was short of breath. I’d never felt out of breath on this stretch before. It was a bit of a worry. I mentioned it to my friend. We agreed I should see my doctor.

A pile of crocheted guts with Bunny the tumour sitting on top.

My GP ordered a chest scan. A few days later, I was fully expecting to be told I had walking pneumonia or something that could be zapped with a course of antibiotics. Turns out it was something far more sinister. A few blood tests and a CT scan later, Steve and I were back where we’d been nine years ago: shaking in our boots, staring at the doctor, receiving information that we were barely able to process. Damn. Back here. There was a week of Googling and worrying before we got in to see the medical oncologist in Orange, a town about 40 minutes’ drive to the west. The oncologist assured us that while the situation was certainly bad, it was not hopeless. Yes, my original cancer (primary peritoneal cancer, a form of ovarian cancer) had crept into my lungs when no-one was looking, but it was “eminently treatable” with a course of chemotherapy. “Eminently treatable” is a good pair of words. There are no guarantees in them, but room for hope. Buoyed up, I slid him a copy of my new novel, The Vitals. Not wanting to take up too much of his time – the waiting room was full of others in their own personal combinations of hope and fear – I gabbled about how, funnily enough, my cancer had come back just as my book about cancer was about to be launched! He leafed politely through the first few pages as we bundled ourselves out of the room.

The Vitals has a rabbit on the front cover (by Sandy Cull). This is because, in The Vitals, one of the tumours goes by the name of Bunny. Bunny’s replicating cells are getting ready to run free across the wide brown land of my body (okay, it’s fairly wide but not at all brown), dodging all attempts to eradicate them. The connection between rabbits and my cancer came early after my first cancer diagnosis in 2014, when I’d been told that one of my tumours inhabited a piece of territory in the female body called the pouch of Douglas. This territory was named after Dr Douglas, a “man midwife” in the era when midwifery, until then part of women’s business, was being taken over by (male) doctors. In London in 1726, Dr Douglas was invited to examine a certain Mary Toft, a poor woman who claimed to be able to give birth to baby rabbits. Toft was a national sensation, but Douglas was very suspicious. He soon outed her as a fraud who had been procuring baby rabbits, secreting them inside herself, and giving excellent performances of the birthing process.

The rabbits made me think of Ginge, a cat we knew when I was kid. Ginge’s mistress would say, “Go and catch a rabby, Ginge!” Yesterday, I started work on a crochet portrait of Ginge. It will be almost life-size, from a pattern. I need all the help I can get in catching rabbits.

Meanwhile, The Vitals is now on sale in bookshops across the land, or online.

Goodbye Sue

afternoon_tealColours. Some of my life is in pink and grey, the colours of the galah; some of it is in the red of outback earth and some of it is in teal, the colour of the awareness ribbons for ovarian cancer. I have an ambivalent relationship with teal. Sometimes I’m happy to be part of Team Teal, hosting fundraising afternoon teas for cancer research. Sometimes it’s a colour I don’t want to see. When I was in London in June, a woman in a striking teal sari walked past in a sudden shaft of summer light that broke out from behind a cloud. I don’t want a fucking omen. Fuck off. I was miserable for a while, convinced I was in for it all over again.

But I wasn’t. Back in Sydney, my routine checkup was all clear; the specialist shifted my checkup intervals from three months to six months. After that, yearly, and after that… you’re back out in the world with everyone else.

That teal sari wasn’t for me.

sue_2010It must have been for Sue, my cancer buddy. We were diagnosed at around the same time, and compared notes. We were friends before we got sick; she was a long-time colleague of my partner Steve. Not long after Steve and I got together, we popped in to see Sue in her house in the Blue Mountains. She had three gorgeous little boys, triplets that were everywhere at once. Steve threw them on to the sofa, one after the other. They ran back, wanting to be thrown again. Sue struck me as amazingly calm in the midst of the whirlwind.

We were in overlapping environmental circles. She came to Bathurst to give a talk about the Transition Towns movement. We chit-chatted on Facebook about climate change and wind farms.

When I was diagnosed with primary peritoneal cancer, a variation on ovarian cancer, she sent a message:

Hi Tracy. Wanted to let you know I’m thinking about you & Steve and hoping for the best. Also, you wouldn’t believe it but I’ve just had a pelvic scan myself this week – I have a “complex ovarian cyst” which my doctor seems slightly (but not overly) concerned about. Having a CT scan next week and seeing a surgeon at Westmead the week after. I’m trying not to feel worried – no history of cancer in my family, but surgery is never fun.

I wrote back:

The teal brigade is a wonderful club but we don’t want any new members! Fingers crossed and we’ll both be thinking of you. Tracy xxx

Reluctantly, though, I had to admit her to the club. Our CA125 levels were “through the roof”. We started chemo, both trekking from our homes to Sydney for treatment (she at the Chris O’Brien Lifehouse at RPA; me at Westmead). We lost our hair, started wearing beanies. Got our dates for “debulking” surgery. Looked at the stats on ovarian cancer. Not good. Very not good. I kept thinking about her children, the three boys (Kalang, Milo and Tallai) and their older sister Kittani.

After surgery, our stories began to diverge. When I woke up – complete with colostomy bag and half my guts out – I heard the magic words: “We got all of it.” Wow. But for Sue, the news wasn’t so good. They’d had to leave some behind – to take more tumour would have killed her on the spot.

We both went back on the chemo treadmill, me for “mopping up”, Sue for holding the beast at bay.

She came to my Afternoon Teal fundraising event in February 2015, and I went to hers at the gorgeous old Paragon Cafe in Katoomba. I went back to teaching. For Sue, being ill became more-or-less her full-time job. It was wearing.

I’m in pain most days and every dose increase of painkillers just means more sleepiness and fatigue (not to mention nightmares & nausea!). I can’t drive and I struggle to do basic household tasks.

But she was still keeping a hand in as an active citizen. From her hospital bed at the O’Brien centre, she held a spontaneous working bee for The Colong Foundation for Wilderness. She urged us all to support her boys’ team (the Migrating Wombats) in the Trek for Timor. And she celebrated an enormous achievement: seeing her boys through to their 18th birthday.

When she announced on Facebook that she was back in Katoomba for “palliative care”, it was still shocking, despite all I knew.

I messaged her:

I’m hoping that you can feel as well as you possibly can for as long as you possibly can. And enjoy whatever there is to enjoy and be as comfy as possible.

And she replied:

Thanks Tracy. I know you will carry on the awareness raising for us Tealers. I’m okay now that I’m back in Katoomba. Love to you and Steve. I know he will update old work colleagues where appropriate. Look out for the published research on BGB-A317 down the track. ????????

She was signing off. But I still thought there was perhaps a little bit more time. I was going to reply – at least with a “hugs” emoticon – but got distracted and the next thing I knew, there was a message from Sue’s phone, but it wasn’t Sue’s voice in the recording. It was her ex-partner Wyn, the children’s father, who had been at her side through all of this, asking me to call him back.

Goodbye Sue. Thank you for all you gave the world while you were here sharing this little blue planet with all of us – human, plant, animal, rock, sea and sky. Go well Kittani, Tallai, Kalang and Milo and their extended family. And go the Teal!