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.

Get back on lappy

Didn’t let me down

2pm Saturday, November 27

I’m sitting all by myself in a motel room in Cooma, waiting for Part 3 to drop. It’ll turn up right here, on this laptop, any time from about 7pm Australian Eastern Standard Time, when it finally clicks over to Saturday in Los Angeles. I’m talking about Peter Jackson‘s marathon documentary Get Back, streaming now on Disney Plus. It takes us back to the month of January, 1969, in which the Beatles are hard at work in two studios, writing and rehearsing material for their next album. With clashing schedules – Ringo has promised himself to a film crew in February – the whole project needs to be in the can by the end of the month.

The footage was originally shot for a television special that never eventuated. Instead, it was cut into the 1970 film Let it Be, which emphasised fractures in the band and was forever associated with its break-up. The Beatles didn’t like the film, and it was quietly withdrawn from circulation after limited release.

Jackson’s Get Back is a completely new edit of the original material, revealing footage that has never previously been made public. It shows John, Paul, George and Ringo in full flight, gloriously young and far less fractious than the original cut suggested. Jackson has used 21st century technology to restore picture and sound to give an immediacy, immersion and vibrancy that almost seems too good to be true. We’re right there in the room with them as they jam, joke, argue, smoke, drink, stand up, sit down and sometimes dance. Ringo has already tweeted that he loves it, and Paul does too, so it passes muster on that front. It goes for about eight hours, divided into three chunks, culminating in the famous rooftop performance above the Beatles’ own Apple studios in Savile Row, London.

In his review in the Guardian, Alexis Petridis describes the documentary as “eight hours of TV so aimless it threatens your sanity”. I’ve only seen the first two chunks – as I said, I’m waiting for the third to drop – but I’m more than ready to leap to Jackson’s defence. Get Back is long, but it’s far from aimless. It successfully, respectfully and joyously makes the most of the precious raw footage made available to him. It is beautifully framed, crafted, paced and contextualised. Yeah, it’s long, but for me that’s not just a bonus but a hallelujah. Never assume that I don’t want to watch someone eat a biscuit.

Okay, so just to get something out of the way. Like Jackson and – oh, a few million humans around the world – I’ve been a fan for a long time. I do believe that some things can be ubiquitous and excellent at the same time. (Galahs are another example.) Back in August, in the middle of lockdown, I happened to catch Eight Days a Week, Ron Howard’s documentary about the Beatles’ touring years, on SBS TV. I was moved to tears for days afterwards, in a way that I couldn’t quite explain. A sort of exquisite grief. I’d always loved the Beatles but now I found myself at the bottom of a rabbit hole, tunnelling up, down and sideways. I watched YouTube clips, I downloaded whole albums, gave myself virulent ear-worms. I tracked down movies like Backbeat about the band’s Hamburg days, and Nowhere Boy about Lennon’s childhood. I’d get sick of it and write myself post-it notes to stick to my computer: BEATLES-FREE DAY! (I had other work to do). To no avail. I’d find myself sliding back to the Beatles Bible for another factoid. In other words, over just a few weeks I reached a tipping point. I went from common-or-garden fan to fully-fledged Beatles tragic.

Which is to say that this review contains not a shred of objectivity. It is the enthusiasm of one tragic for the work of another tragic.

But then, as I just said, there are a lot of us around. If you gather common-or-garden fans plus tragics plus ordinary people hearing snatches of music in supermarkets aisles feeling a stab of pure nostalgia, then we have a strong case for the very long version. We really do care that much. You wouldn’t do it in 1970, but because the Beatles have been continuously gathering meaning ever since – social, historical, personal – over the ensuing 50 years, there’s a case for a the long, slow, forensic version.

My nephews, Joe and Max, at the Beatles Museum in Liverpool, 2017. Pic: Deb Sorensen.

Not that their cultural importance is universal, or forever.

I find myself thinking about BTS, the Korean boy band that is huge right now, at least as important to teenagers now as the Beatles were in the 1960s. There are seven boys for young people to swoon over. Each has a different look, a different personality. They write their own songs. Where the Beatles had Apple Scruffs, BTS has its Army. The BTS video clip, “Dynamite“, has had 1.3 billion views on YouTube. (“Hey Jude”, by way of contrast, has had 41 million views.) It’s all about what Donna Haraway calls “situated knowledges“. There’s no God’s eye view; only particular, situated views.

Jackson’s documentary is not supposed to be universal; it’s for the lovers. That may seem indulgent, but it fits with the way we consume media these days. In an era of personalised media consumption, often consumed alone, wearing earplugs, “content” (I hate that word but it’s the best description for “things we watch, listen to and interact with”) is changing. Released from the constraints of cinema release and time slots on free-to-air television, content-producers are more free to play around with the parameters. Content can be stretched and adapted in all sorts of ways. It can get down to very specific audiences, subsets of subsets. For example I can sit here in this two-star motel in Cooma and pursue my interest with abandon. I don’t have to drag my partner into this, or family members. It’s just me and this lil screen, mooning and communing.

I do like a director’s cut. Sometimes I want to see an artist’s vision in its entirety. There are times and places for constraint but we’ve bent the stick too far. There’s too much asking audiences what they want, too much market research. I often think about Tiny Tim. Nobody knew they wanted Tiny Tim; he arrived in all his bizarre glory and added something really nuts to the party.

Having said all that, I will admit that some parts of Jackson’s documentary do drag. For example, there’s the bit where the band is sitting around at the Twickenham film studio doing absolutely nothing. They face the camera, listlessly. The actor Peter Sellers joins them and sits there, awkwardly (he’s working on The Magic Christian, the film that Ringo will start work on in February). Sellers is famous for being funny but in this particular instance, nothing funny emanates from him and conversation fails to take flight. After a moment he gets up and wanders off. Perhaps this sequence could have been left out. But then we’d miss seeing the Beatles listless, Sellers awkward. There’s something in this. Creativity is often about showing up, getting irritated, feeling awkward. There will be down time, flatness and boredom. It may look aimless (and in that moment the Beatles themselves were certainly pretty aimless) but part of Jackson’s aim, I believe, is to show this. This is how albums and films and books are actually made.

Then again, maybe I’m just happy to look at these four young people under any circumstances at all. To paraphrase George Harrison: I’d have them any time. I just want to be around the magic. I want to be there when John Lennon and Paul McCartney, playing their guitars, look intently into each other’s eyes for cues and inspiration, excluding the rest of the world. I want to see Ringo start drumming and George experimenting on the guitar, supporting and co-creating something we’ll still be talking about in 50 years time.

The story arc that languidly – and finally with more urgency – emerges out of it all is Paul McCartney trying to keep the band together, to try something new that will get John out of his drug-addled, love-sodden state, that will get George to hang in despite feeling bossed around and overlooked. While Ringo seems happy to keep playing along indefinitely, Paul is at real and immediate risk of losing the other two.

As I’ve said elsewhere, I’m a Lennon girl (and more George & Ringo as time goes on), and have never particularly warmed to Paul, but watching Get Back, you can only be astonished. His surging creativity is almost supernatural. You can see he wants to play all the instruments himself, tell everyone what to do, make the world realise his ideas, but he forces himself to tone down, to stick to his bass as required, to preserve the unity of the group. And the result is infinitely better than if he did do it all himself. He knows he can’t do it without them, and he doesn’t want to do it without them. He wants them, he wants them so bad, but they’re drifting away. They’re joking around, they’re having fun, riffing and jamming, but you can see the stress and desperation in Paul’s eyes. “And then there were two,” he says, at one point, and struggles to hold back tears.

In the end, he triumphs. By the time they’ve done the rooftop concert, they’re all energised and ready to do it all again. We know that they get straight back into the studio and record Abbey Road.

That’s more than enough story arc for me.

Meanwhile, such a lot of smoking. Takes me right back to my own childhood surrounded by brimming ashtrays. Even this makes me weep for something lost, even though it is something that should be lost. “All things must pass,” sings Harrison in Get Back, trying to get the others interested in his new song. They’re not that interested.

And then there’s the Woman Question. Let’s just say they’re seen and not heard. Yoko is in just about every shot but the original film makers were clearly not interested in a word she has to say. Another thing that must pass.

8pm, Saturday November 27

I have started watching the third episode. I’ve just seen Ringo sharing a scrap of “Octopus’s Garden” with the others, for the first time. He’s bashing it out on the piano, trying to think of more words. George comes over to help. We know how this song goes before they do. They still have to struggle to get there.

And then it’s fun again. John and Paul holding hands, rock n roll dancing. George Martin sitting on the floor, enjoying the vibe. Billy Preston, spontaneously brought in to play keyboards, is smiling all the time, pleased to be part of it all. Later, everyone’s tired. Hair is bedraggled, especially John’s. The Apple studio is looking very lived in. It is full of friends and family, assistants and onlookers, littered with brimming ash trays and tea cups. Maybe BTS sessions also seem like magic. But they’ll never be the particular magic that was the Beatles. Get Back took me there. It didn’t let me down.

UPDATE: For a little balance, see this fab review by my old mate Bob Short. Note that he uses the words “the horror the horror” and “get an editor” 😉

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.