Stomach cancer - "It hadn't occurred to me there could be anything else wrong"

During treatment for a stomach ulcer, Deborah Knifton was devastated to find out that she had stomach cancer. This was followed by surgery to remove her stomach.

"I’d been having treatment for a stomach ulcer, when a routine biopsy showed up a tiny cancerous area. I was reassured that, because it was so small, the cancer was probably in the very early stages. But even so, it was horrendous news and such a shock. Because I was being treated for a stomach ulcer, it hadn’t occurred to me there could be anything else wrong. 

"After more biopsies, a CT scan and blood tests, it was recommended that I have surgery to remove my stomach. It sounded very drastic to me. At the time I didn’t even realise that you could live without a stomach. 

"A gastrectomy is major surgery. They take your stomach away and attach the end of your lower bowel to the bottom of your oesophagus. In my case, the operation took about six hours. When I came round I had a feeding tube which went in to my lower bowel just above my left hip, and on the other side I had a drain. At first I was in a lot of pain, the drain was quite sore, but I saw a pain management nurse and the pain eased once they found a good combination of drugs.

"The operation had gone well, but unfortunately they discovered that the cancer had spread to my lymph nodes and I was referred for chemotherapy. That was a very low point. I felt devastated. It knocked me for six. I'd thought that the worst was over and that I’d done okay. Discovering it had spread and I had to have more treatment was very hard.

"My chemotherapy started two months after my surgery. All in all, I had 70 days of it. A line was put into my arm (which looked like a long tube bound to my forearm) and the chemo passed through it on a continuous basis. In addition, every month, I had to go into hospital for a day and have a different chemo through a drip.  

"I didn’t have too many side effects from the chemo. My taste changed, which made me lose my appetite, and the tube on my arm was a bit uncomfortable at first. The main side effect was feeling absolutely exhausted. But I didn’t have any nausea or sickness. They even told me that I’d lose all my hair, so I had my hair cut short and then didn’t lose any of it. 

"Eating after surgery took a lot of getting used to. The feeding tube was left in for 18 weeks, just in case my weight dropped and I needed to be fed on a drip, but when I came out of hospital I had to learn how to eat again. Swallowing food was a bit nerve-wracking at first. My throat felt quite sore and I kept forgetting that the swallowing hole was smaller because of the scar tissue, so I used to choke quite a bit.

"I was sick a lot at first. Because the stomach isn’t there, you don’t get the sense of being full and you don’t realise you’ve over-eaten. Now, however, I eat more than I did before and I’m exactly the same weight that I was before the op, although I was told I might not get back to my original weight. I can eat a full-sized dinner again. I have to chew more, but looking at me, you would never know I don’t have a stomach. 

"The other thing that changes is your bowel movements. You don’t absorb fat so everything looks different. It’s worrying at first. When things look or feel different, you wonder what’s going on, whether it’s the cancer coming back. My husband was often on the phone to the nurse at the hospital as we both needed reassurance. 

"I now see the nurse and dietitian every six months and I have a yearly ultrasound scan. I also see an oncology psychiatric nurse which is incredibly helpful. It’s really useful being able to chat to someone about your worries, which are still there even two years down the line. Having cancer really changes your life and it has a knock-on effect with family and friends. I still worry and I don’t feel I can take my health for granted, but it is very reassuring being able to talk about how you’re feeling."