Waiting to live. Waiting to die.

Some of you may have noticed that it’s been a while since I published anything here. There’s a simple reason: cancer.

I’ve never had cancer before, but I’ve seen people in my family through it multiple times. Mostly, cancer is about waiting. Waiting in uncomfortable chairs and uncomfortable silences. Waiting for results. Waiting for a diagnosis. Waiting for a prognosis. Waiting for treatment. Waiting to recover. Waiting to live. Waiting to die.

My wait started a while ago in the emergency department of a big inner city hospital, which is no place to be when you’re feeling sick. It’s noisy, drafty, cold, uncomfortable and full of irritable people who’ve been waiting too long for someone to notice them.

My symptoms were not particularly sinister. Medium upper right quadrant abdominal pain and barely noticeable yellowing skin and eyes. My GP demanded a barrage of tests and called me less than 24 hours later. “Off to the emergency department (ED),” she said brisky, ignoring all my prevarications and complaints. “It’s not serious yet but it will be soon. Go. Now.”

So, I went.

Triage, according to Google’s AI, “is a process of sorting people to determine the priority of treatment based on the urgency of their condition or need”. It’s a logical, fair and sensible way to manage emergency entry to the healthcare system. It’s also a process that makes sick, frightened people watch as doctors and nurses appear to ignore them in favour of patients who do not always show obvious signs of immediate danger.

American medical dramas taught me that ED doctors are full of well-groomed doctors who spend their days running about shouting “not now damnit” at patients as they flatline. Reality is disappointing calm, slow and scruffy looking – and far more dependent on nurses than any TV show lets on.

The wait in ED felt interminable. I fought the urge to join the queue of patients who trooped up to the triage desk to check they’d not been forgotten. I was alive, breathing, uninjured, unimportant. I stared at my hands, trying to work out whether it’s just odd lighting or whether they were really going yellow.

Eventually one of the scruffily tired-looking doctors moved me to the inner ED waiting room.

Across the hall a long oval desk was covered in workstations. A blonde, cheerful looking woman had a bright orange sticker on her back that read “NURSE LEADER”. I watched for hours as waves of people in scrubs engulfed her. She updated records, answered questions, directed doctors, nurses, orderlies and security guards to beds and patients by name, number, illness and description until the wave receded. Then she picked up a phone and, in a tone that would have made any sergeant-major proud, started demanding that the wards clear beds, pick up patients, move people along. “No we will not be waiting another five minutes. Is that five actual minutes or a five nurse minutes? Not that’s too long. You need to get him now.” Another wave engulfed her, and she answered a dozen questions about beds and patients and treatment without checking her notes. Her hands remained steady, breath even, jaw muscles relaxed as the beds and waiting room was filled and emptied and refilled.

Just before midnight they moved me from an uncomfortable chair to an uncomfortable bed. The first of many nurses arrived to tap me awake and whisper “I’m just going to take your blood pressure.” They wheeled me out for ultrasounds, wheeled me back for blood tests. They woke me up for doctors to say “hmm” as they prodded my stomach and examined my records and then hurried off to examine more important patients.

Down the hall I heard a male voice yelling “fuck you bitch” followed by a crash and a voice of the PA “Code Black in emergency department.” Running feet and loud voices. I stayed in bed waiting to find out why my hands were turning distinctly yellow.

A doctor and her trail of interns arrived in my cubicle. The doctor told the wall behind me that she though I probably had gallstones blocking my bile ducts. “It’s quite common and nothing to worry about. We will do a procedure called an Endoscopic Retrograde Cholangiopancreatography. Do you know what that is?”

“Umm,” I said.

“An ERCP, is an endoscopic procedure,” she said impatiently, “they’ll use contract dye and instruments to find the stones, break them up and clear the ducts. You’ll need to fast for 12 hours beforehand. Hopefully we can book you in today, but it might be tomorrow or the day after.”

I ask if this is the only treatment option and she sighed. Why is the procedure talking?

“Well, it’s up to you,” she said. “I can’t force you to do it.”

For the next two days, various admin staff worked with the doctor and her trail of interns to try to get me into an MRI and then into a room with the ERCP team. There are enough machines in my huge inner city public hospital but there are not enough qualified technicians to get through all the scans and procedures. The MRI was cancelled twice, the ERCP rescheduled around it.

Finally, three days after I arrived at ED and four days since my last meal, I was sedated and a team of specialists sent a camera and other instruments through my mouth and into my abdomen to scan, film, poke, sever, biopsy and rebuild.

Then I was wheeled back to the ward to wait for results from the ERCP.

I took to roaming the halls. Glowingly neon yellow, hair unbrushed for days, in pyjamas so big I had to tie the pants with a piece of string, I pushed my IV pole, wheels whining like tired children, up and down the halls of the gastro ward.

I met another patient too restless to wait in bed, an elderly Vietnamese man. He told me he’d come to Australia in the 70s and didn’t go to a doctor for more than a decade after he arrived because “doctors are only for rich people”. He and his wife had children as soon as they got their citizenship and he worried about sending them to government schools because he thought that’s children went to learn to love the government. “But they did not. They learned how to learn!” he said triumphantly.

He also discovered that doctors would treat his children when they were sick and heal them even if he could not pay. Now his doctors were healing him, and he still did not have to pay. “This is the land of bright dreams,” he told me.

The doctor who needs me to be a procedure not a person came [MS1] back to my bed but this time she was in the trail of the god-like consultant (the most senior doctor on the ward).

Gods do not descend from Olympian heights for a mere gallbladder, and this was the first time I heard about the Ampulla of Vater[MS2] . As his trail of interns and doctors nodded admiringly, the consultant explained that it’s a structure connecting the liver, pancreas, gallbladder and small intestine. The small lump they’d found on my Ampulla of Vater, however, he could not explain. “It’s very small. It might be nothing. It might be something. We’ll do some more tests, but you will probably need surgery next week.”

“When you say it might be something, you mean it might be cancer?” I asked.

“Maybe” was the closest I got to a diagnosis that day.

I went home and dived into a whirlpool of google results on ‘ampullar cancer’. It’s very rare cancer with no known cause. Survival rates for ampullar cancer from intestinal cells are good. If it comes from pancreatic cells the prognosis is emphatically not good. There are other, even rarer sources. Treatments, surgeries, statistics all started to blur. I put down the phone and turned on the TV.

My surgical consultant was not only a woman; she was a woman of colour. Before she even spoke, I knew she had worked twice as hard, proven herself three times as often, and overcome infinite multipliers of bias that her white male colleagues couldn’t even recognise. She was practical, warm, informative, honest and reassuring. I’m in good hands.

So, a couple of weeks ago, she and her team performed a Whipple procedure on me. They opened me up from sternum to groin (gnarly scar!) and removed my ampullar, the head of my pancreas, my gallbladder as well as a few other connecting bits and pieces. Then they reconnected all the remaining organs. It took eight hours and carried considerable risk, but as my surgeon told me, I am “relatively young” and I would die without it.

Now I am waiting to recover from the surgery, which will probably take a few months. Then I wait for more scans, more treatment, more diagnoses and prognoses.

I cannot tell you how much time I have or even what my odds are. The risk factors for my very rare cancer are being male aged 65 or older, having chronic health condition, obesity and/or living in Southeast Asia – and none of these apply to me. There just isn’t enough information about what this cancer does to women of my age, size, lifestyle, ethnicity and medical history to give an accurate prognosis.

I can’t tell you that whether I have 30 days or 30 years. I can tell you that however long I have, I’m not going to waste the any of it wafting about like a ghost waiting for a coffin.

I am going to finish my research. I am going to publish It Takes A Village To Teach Your Children Consent, because I’ve spent two years writing and rewriting that book and time is far too valuable to waste.

I am going to finish writing the book based on the Rape is a Theoretic Crime series I started here on Substack. And I am going to continue to advocate for the changes that might be able to slow (or even reduce) the horrifying increase of sexual violence in Australia. I might be a bit slower and need a bit more help than I would have without the cancer, but I’m going to do these things because they matter, because they give me strength and purpose. Because I can. And because what else could I do while I wait?

If you’d like to do something, please share the link to the launch page for my new book, It Takes A Village To Teach Your Children About Consent. You can pre-order your copy, book tickets to the launch and share it with anyone else who you think might find the book helpful. Helping me get this book into the hands of people who need it is the best thing you can do for me now.

I know many of you will want to get in touch and I’m so grateful to you but since the surgery I’ve been sleeping 16 hours (or more) a day and I may not be able to respond very quickly. I don’t need anything for now - I am very lucky to have an amazing group of friends who have clubbed together to offer all practical help anyone could want.

If you’re in Melbourne on the 16th October, please do come to the launch. I’d love to see you and it will be a great night. Kristine Ziwica and I are both really looking forward to it.