A series of tests led to an unexpected cancer diagnosis and a summer reflecting on life, luck and the diligence of two doctors. By Karen Middleton.
When the phone rings
Two phone calls punctured my summer. I missed the first one, which came on Christmas Eve. I didn’t even notice until January 4, when a text message sought to confirm a GP appointment the next day.
I hadn’t made an appointment.
I’d undergone the last of a barrage of medical tests on my first day of leave in mid-December, investigating the possible cause of a persistent iron deficiency. There was already a potential explanation but my GP wanted to rule out anything else.
During a colonoscopy, the specialist found a lump. Tiny, he said. Virtually nothing at all. Just a tiny, benign-looking lump he almost didn’t even see, embedded in the wall of the small intestine. Nothing to worry about, he was certain, but he’d biopsied it anyway out of an abundance of caution. It was the same caution that prompted my GP to order the test at all.
Okay, I said.
But I worried. I saw the GP a few days later. No result yet, she said. It’s nearly Christmas, the pathology labs are flat out. Don’t worry. Just go and have your holiday. I’ll call you only if there’s a problem.
I didn’t mention the lump to my family. Why alarm everyone over nothing? We had as relaxed and happy a Christmas as the Omicron Covid-19 wave allowed. The more the phone didn’t ring, the less I worried.
When the January 4 alert came, I rang the GP’s rooms. I didn’t make an appointment, I insisted. “I’m away on the New South Wales north coast.”
Your doctor made it, the receptionist told me, when she tried to call you on Christmas Eve.
I panicked. Was there a problem? “What is it?” But the doctor wasn’t in, and the receptionists couldn’t tell me anything. They didn’t really know. They weren’t authorised. You know how it is.
I asked: Should I come home? She said she’d call only if there was a problem.
No need, they said, rescheduling for late January. Someone will call you.
The second phone call took longer to arrive than is ideal, but to be fair it was January and everyone was on a summer timetable. As I now know, in the medical world bad doesn’t always mean urgent and if it had been the most urgent of all the urgent things someone would have called sooner. When that second call came, a week later, it wasn’t a surprise.
This time it was my gastric specialist. The lump wasn’t nothing. It was cancer.
That kind of phone call is everything you imagine it might be. I was both acutely present, sitting on the couch in a friend’s peaceful hinterland farm cottage, and drifting a little way off, hearing myself discuss an unfortunate malignant growth.
The specialist was very sorry to bring me this news, especially by phone. I was determined not to come undone and make it harder for us both. It was late on a Wednesday afternoon and I knew he was just back from leave. I wondered how many of these conversations he’d had. They can’t be fun. I felt sorry for him.
The specialist patiently answered my questions. The tumour was in the small intestine but it wasn’t regular bowel cancer. It was a neuroendocrine tumour, a tumour of the nervous system, which can pop up in a range of places. Rare, he said. Barely there. But cancer, nonetheless. The deadly kind.
I would need to have a PET scan to determine whether it had spread. It was likely growing only slowly but it was growing. He had taken the liberty, he said, of speaking to a surgeon and to a radiology practice. Someone would call me. My head spun.
I had a few more days planned back at the beach, a girls’ week with another friend, and the sun was finally out. But surely I should go home now?
No need, he said. Finish your holiday.
Then, acknowledging my predicament and bringing things gently to a close, he added: “Well, it’s a bit of a bugger.”
He was being kind. Yes, I agreed, it really is.
Joining my friend, I thought I’d spare her the news, but it soon tumbled out. She was devastated, practical, calm – ballast in the still eye of a storm. The rest of the week was strange and precious, there at the beach in the middle of January.
I hadn’t told my family or anyone else and decided to wait until I knew what exactly I was telling them. Having the space to sit with this unwelcome thing, to what-if the possible paths, felt weirdly like a gift. We found a place for the cancer among the sunscreen, novels, Netflix and champagne. It got a reasonable hearing, but we also managed to make it wait its turn.
There was laughing and reflection and a few quiet tears as the what-ifs jostled with each other and my mortality washed in and out on a king tide.
The day after I arrived home, I had the scan. I sat for a long time in an armchair in a small room with that scary yellow nuclear symbol on the door as a young man pumped a radioactive substance into my arm via a tube he fed through the wall. He stood outside the closed door so he didn’t end up glowing in the dark.
I sent a bravado selfie to my beach friend, keeper of my secret, and she sent back solidarity texts. But it was lonely in there and I wondered if I was going to die soon.
I could hear the young radiographer’s muffled voice as he hooked up another person in the room across the hall and prepared to close her door, too. She was chattering away about her cancer. I heard him move to close the conversation.
“Well,” he said, “it’s a bit of a bugger.”
I thought: maybe they put this in the textbooks.
After the infusion, I lay very still as a noisy machine took 4022 images of my insides. Its interior was wallpapered with a beautiful mural of red autumn leaves and I mused whether this was quite the right message.
The radioactive stuff lights up wherever there is cancer. I could hear the cadence of the same guy’s voice and hoped I didn’t look like a Christmas tree. The whole process took a couple of hours. On the way out, I hoped he might give something away.
“So, how did it look?”
“I’m not authorised to say,” he responded. And then, carefully: “I hope it all works out for you.”
I regretted asking. All the breath left me and I just made it to the car before I fell apart and sobbed into the steering wheel.
On the way home, I stopped in on dear friends and told them. I needed more help carrying the dread.
I was warned the results could take up to 24 hours but they were back in less than five – one of the now-very-long list of things for which I am deeply grateful. I hit refresh on the radiology app too many times and promised myself just one more check before bed and there it was: “No avid disease elsewhere.”
My cancer hadn’t spread. Until surgeons removed the tumour and tested the tissue, we still couldn’t be certain that nasty little cells hadn’t started to float around. But for now, it was the best possible result.
At the beach, I had contemplated two versions of the cancer story I would have to tell my family. I didn’t know how to face the worst version, so I’d been desperately hoping for the other one. And here it was. I literally couldn’t believe it.
Five weeks later, on the second day of autumn, three excellent surgeons cut out a section of my innards while three anaesthetists navigated a complicating allergy. I spent five days in the care of exceptional nurses and doctors in an acute surgical ward at Canberra Hospital and gained an appreciation for the complex challenges they and so many of their patients face, especially if they’re managing the intersection of physical and mental health, as they often are.
The operation went well. My surgeons confirmed it was a rare tumour that could have easily been missed.
A few days after I was discharged, one of them phoned. The tumour had been successfully removed and had not yet spread to the lymph nodes. It was graded at the earliest stage and I would likely need no further treatment, only monitoring. I was – I am – amazed.
My tumour was nothing to do with the condition that sparked the initial investigation, which is now being addressed. It was found gobsmackingly early by a complete fluke while looking for something else.
The symptoms of this kind of tumour are easy to dismiss. They include hot flushes – which in a woman in her 50s are hardly a barbecue-stopper – occasional bouts of diarrhoea and anxiety.
Because these mostly raise no alarm, such growths are frequently detected much later, when the prognosis is a lot less good.
The thing is, I did notice the flushes, which seemed an odd resurgence of a process that had ended. I noticed them but I didn’t mention them. I should have. Listen to your body and talk to a doctor. You are not too busy for this.
When my surgeon phoned, with the surgical intern who helped manage my hospital care, he said I was very lucky and joked that I should buy a scratchie. They were happy for me.
I thanked them and said I felt very fortunate. It was an understatement. I know how many people have the other version of the cancer story. I think about them a lot.
Over a summer, I became a person who has cancer. Then in four hours on an operating table, present tense became past – in my body, if not quite in my head. When I got home, my friends bought me scratchies. I cried. We won $5.
I don’t know what will be different now or if everything will stay the same. I don’t know why the cancer came or if it will come back.
But I know the two phone calls that changed my new year have already affected my life. And the diligence of two very good doctors may just have saved it.
This article was first published in the print edition of The Saturday Paper on March 26, 2022 as "When the phone rings".
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