Here, Jemma, 30, tells the story in her own words.
Imagine taking your last sip of wine or chewing your final piece of steak. Saying goodbye to some of my favourite foods last year was bittersweet.
I was about to have an operation to remove my stomach. But as hard as eating my final chocolate bar was, I knew I’d rather that than the fear of a terminal disease. I was just 19 when genetic testing showed that me and my brother Jason, now 33, were carrying the killer gene CDH1. This meant we had an 80 per cent chance of developing stomach cancer, a disease that had already killed 12 of our extended family.‘There is the option to have your stomach removed to prevent the cancer developing,’ our doctor explained. Incredibly, your body can function without one, but it was a drastic decision for a teenager to make. ‘I wouldn’t be able to eat normally or drink alcohol ever again?’ I quizzed the specialists as they shook their heads. And it might all be for nothing. There was no way of knowing when, or if, I would develop cancer. Thankfully, I had time on my side – unlike my mum, Mary, now 61.
Tests on her stomach showed she already had microscopic cancer cells and she needed the operation straight away. Living through her experience was like watching my future unravel before me. ‘We have to get you to hospital again,’ I told her for the umpteenth time after her surgery, as she painfully vomited bile late into the night. I was young and Mum’s suffering meant I decided to hedge my bets. Instead of going through the operation when it was still such a new procedure, I decided to wait. Maybe there will be new research or drugs in a few years, I hoped. In the meantime, I had a yearly endoscopy where doctors put a tube down into my stomach to check for any changes. I felt like a time bomb waiting to go off though. If I wasn’t enjoying my food, I’d be scared it was cancer. Stomach pain or a bit of bloating would set off alarm bells too.
As I got closer to 30, I started realising time was running out and I needed to act. The youngest anyone in our family had died was 30, so that was my milestone. With a supportive boyfriend, Dave, 34, and my family by my side, I decided at the end of last year it was time to get the surgery. ‘What do you want for your last meal?’ Dave asked on November 2, the night before the operation. Far from the cheesy pasta and bottle of wine I knew I’d never eat again, I picked a simple salmon dish. ‘I’m too nervous to eat much,’ I said, annoyed with myself. The next day it was a strange feeling being wheeled into theatre. There was nothing wrong with me and yet I was about to have major surgery. In the four-hour op, called a total radical gastrectomy, surgeons removed my stomach and attached my oesophagus to my small intestine – a similar procedure to weight-loss surgery.
Waking, I was in immediate pain and nauseous. For 10 days I survived on a saline drip and ice chips, and after three weeks, I was still in hospital. I’d lost seven kilos from my already small frame and had battled pneumonia. Then a surgeon came to see me with the results of tests on my removed stomach. ‘We found cancer cells,’ he told me gravely. Shock and relief hit me. My decision had saved my life. Mum, my dad, Pasquali, 59, and Dave were all so happy for me.
Calling my brother, I hoped my news would stir him into action too. An endurance athlete, Jason still can’t face the thought of the consequences of stomach removal, even after I told him about the bullet I’d just dodged.
Three months on, I’m home and doing well. Exercise has been a really important part of my recovery and I love running on the beach and swimming in the ocean. I moved from soup to purees, and after about seven weeks was able to eat some solids, like eggs and fish. How much I eat will be an ongoing issue. I’ll never be able to sit down to a three-course meal ever again. ‘It’s harder than I thought it’d be,’ I tell Dave, knowing it will take time to adjust to my new normal. Already my palate has changed and smells of rich food make me feel queasy. Not eating chocolate or pizza is a small price to pay for what I’ve avoided, though.
I feel even more lucky that the science is now there so my kids won’t have to suffer what I’ve been through. I can have IVF to ensure my children won’t carry my family’s cancer gene, which is incredible. It’s already stolen 12 lives – my uncles, grandparents and great aunts. It’s good to know that when it’s my time, the killer gene dies with me.