Where am I now?

Thirteen years ago, I faced stage two oesophageal cancer. I remember at the time, my wife and I got straight in the car after the hospital oncology appointment and drove to a place we usually went for a walk, near Goodwood. 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.

Where am I now? I feel good. I am working part-time, I am reasonably fit, and enjoy life as much as I can.

Eating

During the operation, I lost all of my oesophagus and three quarters of my stomach. It took nine months to recover from surgery and my eating habits have changed completely. I tend to graze now and have small, balanced portions throughout the day rather than meals. Little and often is the key. Breakfast is a banana around 6.30am then cheese, crackers and grapes at 10am. I eat a sandwich at 12.30 when working, melon or apple around 3pm and then a small meal between 5 and 7pm. I do not eat any later than 6 -7pm as it can cause reflux. Between meals I have my drinks as food and drink at the same time is too much volume.

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 now as best I can. At home we now use unrefined sugar in cooking. 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 people after surgery. This makes me very tired sometimes and my body shuts down for about half an hour.

Working

After treatment I wanted to return to work and feel normal again, but it was a struggle.  I did change jobs soon after returning to work for a more office-based role.

I soon realised that work was not as important to me as before, but the wider challenge was a financial one. With months off work our savings were soon used up, this can be a huge challenge for many without any savings.           There are many ways to help ease the financial worries, first thing is to talk to your bank and let them know if there might be a shortfall. Talk to your mortgage lender as well. Macmillan and CAB can also help support financial worries and point you in the right direction for benefits if you are unable to work. It’s always good to get second opinions on financial advice.

Advocacy

Feeling incredibly poorly after treatment triggered the idea that it would be good to talk to other patients. There was no patient support back when I had surgery, so I spent three months setting up a local support group. This was a life change from the world of print sales to a volunteer helping others.

We now have a core of patients and very good friends meeting up to help others. I find talking to other patients helps me just as much as it helps those newly diagnosed. You realise that you’re not alone and by talking about my story, it is good to know I’ve helped others.

From there, I became a volunteer at the Oesophageal Patients Association (OPA), and eventually became Chair of the OPA in 2017. It’s a cause very close to my heart given the absence of patient support I faced. I couldn’t ask any of the 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.

Our support groups are listed on our meetings website page at www.opa.org.uk. We encourage partners and family members to attend as well. Our meeting normally have a short presentation and we always allow time for a patient to patient session to ask those questions the medical team cannot answer.

Dave’s Strategies for life after oesophageal cancer:

1.  Keep as fit as possible, walking is good.

2. Eat well and healthier, enjoy your food

3. Talk to other survivors, it helps you as well as others.

Dave Chuter, 65, was diagnosed with oesophageal cancer over 13 years ago. He was lucky to survive since many are diagnosed too late for surgery. He is now living a full, busy but happy life free of cancer. He took up photography, giving him a reason to get out and about, and an interest to share with others.

Before cancer, he’d had acid reflux and heartburn for many, many years, but it wasn’t until he had trouble swallowing that his GP referred him for an endoscopy. He’d felt quite well overall, just rather tired. His advice would always be that if you have had heartburn or acid reflux for over three months, then ask your GP to refer you for an endoscopy.