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Real Voices: Living through oesophageal cancer

Jennie was in her mid-50s, fit and healthy when she was diagnosed with oesophageal cancer. In this week’s Real Voices, she describes her experience with the disease, and the importance of being in tune with one’s body in order to notice when something is wrong.

I was perfectly healthy before I was diagnosed, but my life was pretty stressful around this time. I had moved to Plymouth, split up with my partner, and started a new job. When I first had symptoms I’d been in Plymouth for around six months, and I was doing a research nursing job. I was sitting at my desk eating lunch, and I noticed a lot of pain in my stomach, like indigestion. It carried on, so I went to my GP. She then sent me for an ultrasound of my stomach area. They didn’t find anything, because obviously they didn’t think to check my oesophagus. I was getting referred pain in my stomach, so it actually took quite some time before I was properly diagnosed. The doctor had initially prescribed me lansoprazole (a medicine to lower stomach acid) which had really helped, but I found over the next couple of months that I was experiencing pain when I ran out of it. 

A few months after my appointment with the GP, I was eating Christmas dinner with my family. I realised that I was having trouble swallowing my food. I went back to the GP as I was now sure there was something wrong. She is a great doctor, but she was almost rolling her eyes at me. I’m sure she thought there was nothing wrong with me. I don’t look like the kind of person who would normally get oesophageal cancer. The average patient is male, aged 60+, and often a heavy smoker/drinker. They are often obese and don’t exercise. I was none of those things. I’m female, I was in my mid-fifties, barely drank and never smoked, and I have always been incredibly fit and active. The only thing was that I’d had cancer previously. I was diagnosed with Hodgkin’s disease when I was in my early twenties. I’d had quite a bit of chemotherapy and radiotherapy for that. I think that’s why I got cancer again. Back in those days they just used to blast you with radiotherapy, and I had it over my entire chest and under my arms. I think the radiotherapy is the thing that led to my oesophageal cancer. Radiotherapy is targeted now, they only use it on the exact place where the tumours are located. In the end, I asked the doctor for an endoscopy which revealed oesophageal cancer. When I was diagnosed and I went back to see the team for the biopsy results, I was told I was Stage One. Luckily we caught it early, and I genuinely think that that is because I kept going back to the GP and pestering her. If you ignore the signs and don’t do anything, you might end up with a much worse result. 

I went to Derriford Hospital in Plymouth, where they have a multidisciplinary team with surgeons and the radiotherapy and chemotherapy teams working together. They looked at my case and were concerned because I had had chemo and radiotherapy in the past. There was a worry that they might not be able to give any more radiotherapy, so they were considering surgery, which they then decided against. Because I’d been a nurse, I was able to challenge them and get more information. I find with NHS doctors that they will only give the patient the most minimum details that they can. I pressed them, and they said that recent research has shown that surgery doesn’t provide a better outcome than just having chemo and radiotherapy together. One of my doctors said they had also found all of my old notes from when I had cancer in my twenties, and they’d seen the dose of radiotherapy that I’d received, and actually they were able to give me some more. So I had radiotherapy and chemotherapy together. That was very difficult and I started to deteriorate pretty quickly. The thing about oesophageal cancer is that it affects everything you try to swallow, so it’s incredibly painful to eat or drink anything. I was admitted to hospital several times during this period as I was severely dehydrated and undernourished. I had to have a gastric tube at one point, I was only eight stone which is tiny. 

They told me that they thought they could offer me “curative treatment” which I guessed meant that they could completely cure me. I didn’t look up any of the statistics of survival rate and so on. I did a brief internet search once, and the prognosis looked really bad, so I decided not to look anymore. I was on the treatment for about four months, and it left me in a pretty sorry state. My oesophagus completely collapsed, and I couldn’t swallow anything at all. I remember going for a meal and trying the smallest bite of food, and it all came spurting back up again. I thought at that point that I would never be able to eat again. The doctors said they could dilate my oesophagus, which gave me hope because I thought they’d stretch it once and I’d be completely fine again. But of course it wasn’t fine again, and I had to go back to get it dilated every few weeks for the next two years. I think the damage to my oesophagus was worse for me because of the previous radiotherapy I’d had in the area, which had made it very stiff. You know when you swallow a bite of food that’s a bit big, and you feel it going down your throat, and your oesophagus sort of stretches like a snake to accommodate it. Mine can’t do that. Occasionally even now, 10 years after I was diagnosed, I can still get caught out if I haven’t chewed my food enough. 

Nowadays I can eat most things. The only thing is that I don’t choose to eat steak or pork, or any muscly meat. Fish and chicken is usually okay. I have a few symptoms still from the chemo, such as tinnitus. I also have a bit of neuropathy in my toes. I don’t have to go in for check-ups anymore. I have had to call on the cancer specialist nurse a few times, when I’ve got something stuck but I haven’t had to be admitted to hospital since. I do a lot of cycling, and I’ve got myself an electric bike because I haven’t got the lung capacity that I used to have, probably because of the radiotherapy. 

It’s so important to be in tune with your body, so that you know when something is wrong. People are often frightened of going to the GP and delay getting an appointment, because they’re scared of getting bad news or because they don’t want to waste their time. I had a good friend who was diagnosed after I did, and he sadly died very quickly. I think he left it too long before seeing a doctor. In terms of advice I would give to anyone with oesophageal cancer, I think it’s crucial to eat a good diet when one is ill. I was really careful and made sure I ate loads of vitamins and nutrients, and tried to avoid sugar. Getting a liquidiser was another great move, because when you’re struggling to swallow, you find it easier to have soups and smoothies. That’s really what I lived on when I was undergoing treatment. Also, as I said before, you’re best not to look at the statistics. Try to get fresh air and a bit of exercise, and spend time with your closest friends. It’s strange when you get ill, people are almost frightened of you. You do lose touch with some people. I was pretty isolated when I was diagnosed, I’d only just moved to the area and hadn’t made close friends yet. My daughter came to live with me for a bit when I was having treatment, and my twin sister used to come and stay a lot. I had a friend move in as a lodger as well, and other friends who used to come and see me frequently. It’s tricky though, as when you’re really ill you don’t want to see a lot of people, and it can often be even more difficult for those around you. So I would advise anyone who’s ill to keep quite a tight circle of your most trusted friends and family around you. There’s also loads of resources available for those with cancer. Macmillan Cancer Support were brilliant, especially in helping me with pain control. The NHS website is always a valuable resource, and recently I’ve found GUTS UK. They do some great work all around cancers of the digestive system, and they’re a great support. Finally, just get as much rest as possible and take one day at a time. 

I do wonder how I survived sometimes, but I try to live as well as I can. I don’t push myself too much, and try to listen to my body as much as possible. I keep fit and healthy and eat a balanced diet. We should all be doing that really, as making better lifestyle choices everyday may affect how many of us get cancer, and how many of us survive it.