Dave, 65, was diagnosed with oesophageal cancer 13 years ago. He shares how his life was irreversibly changed by his diagnosis and why he volunteered to be a Cancer Survivor Champion.
I’d had acid reflux and heartburn for many, many years. I’d been to the GP a few times, and come away with prescriptions for PPIs [proton pump inhibitors] to treat the reflux.
It wasn’t until I went back and explained that I was having trouble swallowing that I was referred to the hospital for an endoscopy, a camera down the throat. I felt quite well before diagnosis, but I did feel rather tired.
The doctors immediately confirmed that I had a stage 2 tumour in the oesophagus and stomach. I had just 4 weeks to wait until the 9-hour, very complex surgery that takes months and months to recover from. I was 52 years old.
I was very fortunate that the tumour was small enough to operate on and it hadn’t spread, because a massive 70% of people diagnosed with this type of cancer find out too late and go straight into palliative care.
Additionally, only 12% of people survive after surgery for 5 years or more.
The big problem with early diagnosis is that the key symptoms of heartburn and acid reflux are everyday, minor complaints, making it very, very difficult to spot.
A lot of people develop Barrett’s oesophagus disease before this type of cancer. I wasn’t aware that I had Barrett’s myself, and this possible precursor to the disease can also only be diagnosed by endoscopy.
However, it’s often far too late to do anything about it by the time patients present with difficulty swallowing food.
My advice would always be that if you’ve had heartburn or acid reflux for over three months, get it checked out and ask your GP to refer you for an endoscopy. The sooner this cancer is treated the better.
I’m one of the exceptionally lucky ones to survive, but the day of my diagnosis I didn’t feel like that. My wife and I got straight in the car after the oncology appointment and drove to a place we usually went for a walk, near Goodwood, and we just sat and cried our eyes out for an hour or two. There was nothing else we could do.
After that we talked and decided that I was still alive, and that we’d stay positive and go with everything the doctors offered. And that’s exactly what we did.
During the operation I lost all of my oesophagus and three-quarters of my stomach so – post-surgery – my eating habits changed completely. I tend to graze now and have small, balanced portions throughout the day rather than meals.
I take half bites and I find it very hard to have a drink with a meal too because of the volume. Little and often is the key.
If I eat too much, or I eat the wrong things, it can cause a sugar rush followed by a sugar low – very similar to diabetes – so I have to regulate my sugar as best I can.
I also need to eat highly calorific food because my stomach simply can’t absorb as many calories as it used to – maintaining a healthy weight is a problem for many patients after surgery too. This makes me very tired sometimes and my body shuts down for about half an hour.
I found the recipe booklet by Ryan Riley on the World Cancer Research Fund website a great help. The challenges I face around eating are the reason that I’m taking part in the training for the charity’s Cancer Survivor Champions – with this type of cancer eating well is vitally important as we can only eat small portions, and absorbing enough nutrients to survive can be an issue.
Soon after the operation I became a volunteer at the Oesophageal Patients Association (OPA), which is very close to my heart. The reason that I got involved is because when I had my cancer 13 years ago, there was literally no patient support. I couldn’t ask anybody any questions I had, and neither could my wife, who was my main carer.
Families and loved ones are so important and need support – especially the partners and children.
The oncology nurses are the best in the world and have the hardest job, but there are not enough of them to follow-up in the months or years after treatment, and patients can end up feeling very alone and isolated.
I plan to visit many of OPA’s support groups to share WCRF’s Eat well during cancer campaign, with specific information about oesophagus cancer, as well as for other cancer groups.