A Tumour Called Josephine

Why I gave my tumour a name and the unexpected way it helped.

The first radiographer called it a bit of undigested food. The second called it a finding.

Soon, my head was spinning names. Names of organs I didn’t know the functions of. Names of scans to undergo. Names for what type of finding this finding could be. A neoplasm, a GIST, a Neuroendocrine Tumour.

‘Whichever it is,’ said the nurse on the phone, ‘We know its on the pancreas. It’s round. Well encapsulated. Not the most common type of cancer we find there, which is good.’

‘Great,’ I croaked, unconvincingly. Only two names seemed to matter then. Tumour. Cancer. All the others disintegrated into nothingness.

‘We’ll know more after the biopsy,’ said the nurse.

I waited for the biopsy and tried not to spin out. I shared the news with my family in the most easy-breezy way I could manage.

‘It could be nothing,’ I told my sister. ‘People get growths all the time, don’t they?’

‘They do,’ she said, reassuringly. ‘Some people even give theirs a name.’

‘How about Big Round Bellend?’ I replied.

Although it made us laugh, B.R.B didn’t sit right with me. My body had created whatever was growing inside me. It was written in my DNA. It seemed self-loathing to name it something negative. I didn’t want to add to the feeling of carting something nasty around. No. The name would have to be neutral. Nice, even.

I’d been listening to a playlist of calming songs on Spotify. So far, it had helped me avoid a complete breakdown. Now, one of the songs was swirling in my head, dropping a name right into my lap. The song was called Josephine. That’s a lovely name, I thought. I placed a hand on my stomach and mulled it over for all of three seconds.

‘Josephine,’ I said. ‘She’s definitely a Josephine.’

With a simpler name it became easier to tell loved ones what was going on. We talked about Josephine and theorised lightheartedly about what she was doing hanging out on the head of my pancreas. Privately, I began to dream into what she might look like. I remembered a painting I’d seen years earlier that had simultaneously terrified and transfixed me. The painting was of a woman draped in black chiffon. Her soft naked skin was luminous beneath it. Her bright green eyes glistened with mystery. She knew something. She was powerful, dark, oddly beautiful. Josephine.

Weeks later, under the harsh square lights in the registrar’s office, I squinted at his computer. The image I was looking at was from a CT scan. The cross-section of my abdomen looked like a monochrome marbled painting. A collection of blobs.

The registrar put his pen on the largest of the grey blobs.

‘This is your tumour,’ he said.

‘Fuck,’ I replied, terrified and transfixed.

He confirmed that Josephine was a Pancreatic Neuroendocrine Tumour. Rare, slow growing, malignant but contained. A little bigger than a tennis ball.

‘We’re confident we can remove all of it,’ he said. ‘But it’ll require major surgery. We’d like to operate in the next two weeks.’

A nurse handed me a pamphlet that read ‘Pancreaticoduodenectomy.’

‘We call it the Whipple Procedure,’ she said. It sounded more fun than it was. I’d read all about the Whipple online. How invasive it was. How hard and long recovery could be. How everyone who had it on Grey’s Anatomy died.

My head fell into my hands and I whimpered, ‘No, not that, please not that.’

‘We’ll make an incision across your stomach, remove the tumour, half the pancreas, surrounding lymph nodes, gallbladder, bile duct, part of the small intestine, and a small portion of your stomach,’ said the registrar. ‘You won’t need any treatment afterwards,’ he added. ‘You’ll just have to manage side-effects, and take enzyme tablets with your meals.’

He couldn’t tell me how long Josephine had been there, or why she might have grown. She had caused no symptoms and been found by chance. An incidental finding on a ‘Well-Woman’ ultrasound I’d had when a simple urine infection kept returning.

‘Can’t we just leave it?’ I asked, knowing full well the answer.

‘It’s your choice,’ he said, ‘But it’s starting to press onto nearby organs. And there’s a risk it will spread.’

I looked him in the eyes for the first time.

‘We’d strongly advise you to go ahead with the surgery.’

I left the hospital with a pamphlet, the date of the operation and a rock lodged in my chest. I knew it was right to go ahead, but it felt far from being a choice. I wished the doctor’s explanation had felt like enough, but it didn’t. I didn’t know why, only knew that I needed a deeper motivation. To make peace with the changes that must happen to my body, I would have to find meaning beyond the medical.

I had two weeks to do it.

In the daylight I turned outward to friends and family. I accepted their love and support without protest. At night, I turned inward - to Josephine. I whispered to her. Wrote to her. I’d given her a name to make the situation lighter. Now, I needed the character I’d conjured to lead me through the dark. I closed my eyes and imagined taking Josephine’s hand. I asked her to come with me; to take me down into the depths of myself and show me what she’d come to let me know.

In those days before the operation I felt love flooding in from outside and, in my quiet talks with Josephine, I found my way to an answer. Before I discovered the tumour, I’d spent my life looking everywhere for love. I’d performed for it, worked for it, tried all I could to earn and keep it. It was futile. Whenever it came, I couldn’t believe it. Couldn’t trust it to stay.

Now, with Josephine’s hand in mine, I could see that love had been there all along. It had grown quietly and steadily and it was showing up everywhere. For the first time in my life, I knew I didn’t need to do anything to make it stay. I only had to let myself open. To make space for it to come in. With that, I made peace with what had to come next. I thanked Josephine, bid her farewell and asked her, softly, never to come back.

In the four years since the operation, Josephine has not returned. I have a scar that runs like an upside down smiley face across my stomach. Sometimes, I forget what she taught me, but I only have to look down to remember.

And occasionally, because it’s fun, I like to imagine her like Kate Winslet in Titanic, spinning around with Leo on the lower decks. She grew too big for her surroundings, but she’s lighter now and laughing. Josephine did what she came to do, and she’s free.

Thankfully, I am too. 🙃