Claire's story

March 18, 2024

Claire's story

My life has changed a lot, but I won’t ever complain about this because I know that I am one of the lucky ones – two-thirds of the people diagnosed with oesophagal cancer find out about it too late to have the operation or anything else that can potentially save their lives.

Two and a half years ago, I started having trouble swallowing bread and chicken; it felt like the food was getting stuck in my food pipe and wouldn’t go down for up to a minute each time. Aside from that, I was well and healthy – I hadn’t smoked for 25 years, and I walked and went for 10-mile cycle rides three times a week.

I didn’t have any other symptoms, and I hadn’t been diagnosed with Barrett’s Oesophagus. Though I had suffered from acid reflux some years earlier, that had gone away, and I hadn’t had it at all for more than five years. So, I had no early warning signs that it was oesophageal cancer. My aunt had throat cancer around ten years ago, but I hadn’t even heard of oesophageal cancer until I was diagnosed.

I ignored the struggle to swallow some foods for a couple of months, thinking it was nothing serious, just acid reflux or something like that. Luckily for me, my partner had known someone with oesophageal cancer, and he knew this could be a symptom of the disease. He made me go to my GP; thankfully, she took the symptoms seriously too.

I was suddenly put on a fast-tracked pathway where I was told I would get the results from every test within two weeks, and in every instance, I got them quicker than that. I believe that process and my partner’s insistence about getting myself checked quickly saved my life.

After my first scan, I was diagnosed with Barrett’s Oesophagus, and less than two weeks later, after a second scan, I was told I had a cancerous tumour in my oesophagus. I got the news on the phone from a doctor I didn’t know at our local hospital, and it was very traumatic. I felt like I was living in a dream because I felt so well in myself, so it was hard to comprehend that I had cancer. During a follow-up meeting with that doctor and a specialist nurse, they couldn’t give me any information about my chances of survival or anything else; they simply told me I was being referred to a hospital in London where I would get treatment.

I felt very fortunate that my treatment was done at St Thomas’s and Guy’s Hospital because my surgeons and the rest of the cancer specialists are considered to be the best in the country – they train other surgeons on how to do keyhole surgery, conduct research and publish their findings to help save more people and minimise the life-changing issues after surgery.

At the first meeting with my consultant, I was told there was a chance I could have chemo and surgery and that these two things would considerably improve my chances of survival. I also had the first of many long meetings with my specialist nurse, who gave me a wealth of information about all sorts of things to do with cancer, treatment, and life afterwards. Although I was still terrified, I was relieved and pleased to have far more knowledge about it and some hope that all would go well.

My treatment plan consisted of four rounds of chemotherapy, followed by an eight-hour operation to remove my oesophagus and replace it with half of my stomach to get rid of the tumour, and then four more rounds of chemo.

It started in September 2021. The first three rounds of chemo weren’t too bad – I felt sick and dizzy and had some other symptoms, but they eased off between each session, and I was able to put back on any weight I’d lost. The final round gave me diarrhoea for some weeks, though, and was harder to get over. I was offered a cold cap to wear on my head during chemo sessions to preserve some of my hair, and I was relieved that I only lost around half to two-thirds of my hair. The weird thing was losing my eyebrows and eyelashes, as well as the hair from other parts of my body. I also suffered from over-sensitivity to cold and metallic things and got extremely dry skin on my feet.

Next was the big operation. I was terrified at the prospect of it but desperate to have it, too, as it was my main chance for survival. The operation and initial recovery were tough but bearable, and things went well for the first couple of weeks. However, after I’d been home for less than a week, I started struggling to breathe. After a panicky phone call with my specialist nursing team, I was told to get to the A&E dept at St Thomas’s as quickly as possible – through rush hour traffic on a Friday afternoon, making it a difficult and stressful drive to get there.

It turned out that I had a leak in the new pipework they’d created, and a cavity in my chest – I think it may have been in a lung – was filling up with liquid and slowly drowning me. Around midnight that evening, a pipe was stuck into my chest via my back – the most painful thing I’ve ever experienced – so that the fluid could be drained out. Then, there was an operation to fix the leak and put a stent into my oesophagus.

I was stuck in intensive care for two weeks recovering from all this, and it was far more challenging to start eating again and try to get better afterwards. I did get home briefly 2-3 weeks later but then had to go back into a hospital again to have more fluid drained from my chest and another time to have the stent removed. In total, I spent two months in hospital, and because I couldn’t eat before and after surgeries, I lost around 13-16kg and was extremely thin and weak when I did finally get home. I’d get out of breath just walking upstairs and couldn’t walk more than 25 yards along our road without having to sit down and rest.

I did feel quite down because I was in a lot of pain – eating was painful, and so was the whole process of digesting food and being on morphine messed up my bowels, so I went from diarrhoea to constipation constantly. I was lucky that I had counselling from a really lovely psychologist before and after surgery, and she helped me cope with the trauma of it all, though.

Recovering from the surgery and complications has been a real challenge. I’ve never known it takes so long to gain weight, strength and stamina, but I am now closer to feeling like I did before the cancer. I’m only able to walk 2-4 miles a day, and I can only cycle half the distance I could before, but just being able to do both makes me feel really good. Before the cancer, I weighed 60kg; I went down to just over 38kg at my weakest, and I’m now 47-50kg. I find it hard to maintain my weight, and I have to eat a far more limited range of foods than before, but I’m doing my best to cope with it all.

I’m back at work full-time, working from home mostly, which is less stressful than commuting. My life has changed a lot, but I won’t ever complain about this because I know that I am one of the lucky ones – two-thirds of the people diagnosed with oesophagal cancer find out about it too late to have the operation or anything else that can potentially save their lives.

That has made me passionate about raising awareness of this cancer – and the potential symptoms everyone needs to get checked out as soon as possible. I belong to an OC Facebook group, and it is heartbreaking to read about and talk to the many people on there whose loved ones have been diagnosed too late to have surgery.

I’m a patron of a charity that raises money for cancer charities, and this year, we’re supporting the OPA cancer charity, which I’m very proud of. I’m also hoping to design leaflets about symptoms to help raise awareness and help people to get diagnosed earlier.

I’d never heard of oesophagal cancer until I was diagnosed with it, but I’d love other people to know it exists so they can get treated and survive it instead of having it diagnosed too late.

With DiCE, I have shared my experiences and contributed my insights and suggestions while developing the My DiCE Companion Application. If you are a patient, carer or survivor of oesophageal cancer, I invite you to explore this FREE and valuable App.

Download and explore My DiCE Companion Today! Available in ENGLISH, ITALIAN, ROMANIAN and POLISH



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