Paul is aged 52 years. He was diagnosed with oesophageal cancer in July 2024, had oesophagostomy surgery and is now cancer-free, which all took place in a crazy five-week period. Read his inspiring story, including some heartfelt advice about how he coped through his oesophageal cancer journey.
Why I Am Sharing My Story
I’m sharing my story because when I was diagnosed, I wanted to hear from someone who had been through it and come out the other side. Not statistics. Not worst-case scenarios. Just a real person, living a real life, who could say: this is hard – but it is manageable.
If you’re reading this because you, or someone close to you, is facing a similar diagnosis, I hope my experience gives you reassurance, perspective, and a sense that you’re not alone.
About Me
I’m a 53-year-old husband and father of two teenage sons, living in northern Hampshire.
In July 2024, I was diagnosed with oesophageal cancer. Five weeks later, after major
surgery, I was told I was cancer-free.
That five-week period changed my life – but it didn’t end it.
Living with Reflux – Long Before Oesophageal Cancer
For as long as I can remember, I lived with acid reflux and persistent heartburn. As a teenager, while my friends ordered beer in the pub, I’d ask for a pint of milk. It raised eyebrows, but it worked for me.
Over the years, reflux became normal. I avoided certain foods, relied on antacids, and simply lived around the discomfort. Back then, there wasn’t the awareness or shared information there is today – so I didn’t question it.
In my early 30s, after coughing up blood one morning, I had my first endoscopy. I was diagnosed with Barrett’s oesophagus and placed on medication to reduce stomach acid. I was told it was something to monitor, not panic about – and for many years, that proved true.
The medication gave me a new quality of life. I could eat more normally, enjoy food, and feel like everyone else. I attended regular endoscopies, and life carried on.
When Things Changed – Diagnosed with Barrett’s Oesophagus
In late 2023, a routine endoscopy found a polyp near the Barrett’s tissue. At first it showed low-grade changes. A few months later, it progressed. The polyp was removed, and I was told this was precautionary. Cancer wasn’t mentioned.
Then, in July 2024, I was called into clinic. I went alone, expecting to talk about next steps. Instead, I was told I had oesophageal cancer.
Shock doesn’t quite describe it. I remember the consultant talking, drawing diagrams, explaining options – and none of it going in. I asked to record the conversation, which turned out to be one of the best decisions I made. Being able to replay it later, and share it with my family, helped all of us process what was happening.
Everything moved quickly after that. Scans, tests, assessments. Within weeks, surgery was recommended – not because things were already bad, but because this was the best chance to ensure they never became bad.
Undergoing Oesophagostomy Surgery and Recovery
The surgery removed part of my oesophagus and stomach, using robotic assistance. It was long, complex, and successful.
Recovery wasn’t glamorous. ICU, tubes, drains, oxygen, learning to walk again – all of it is confronting, but manageable with the right care. The hospital staff were exceptional, and pain was well controlled.
What helped most was mindset. I accepted what was happening, trusted the people looking after me, and focused on small daily progress – one walk, one meal, one improvement at a time.
Life After Surgery – Learning A New Normal
Recovery didn’t end when I left hospital.
Eating became the biggest adjustment. Food portions were much smaller, and for several months I struggled with food getting stuck at the surgical join. On one occasion, a piece of uncooked potato became lodged and wouldn’t move. I was admitted to hospital and prepared for surgery as a precaution. Thankfully, there was no damage – but it reinforced how careful I needed to be.
Over the following months, I had a series of dilatations under sedation to gently stretch the join. Each one helped. By around six months post-surgery, eating became easier.
Even later on, I’ve had further dilatations as part of ongoing management – not a failure, just maintenance.
Weight loss was another challenge. I dropped from 88 kg to 74 kg, largely due to reduced intake while on soft and puréed foods. I temporarily reduced exercise to conserve energy.
As eating improved, my weight stabilised and gradually returned. I now sit at around 80 kg and have maintained that comfortably.
Socially, confidence took time. Eating out felt risky at first, and I planned carefully – where to sit, where the toilets were, and carrying small sealable bags just in case. These practical steps gave me control during a period when things felt unpredictable.
Travel returned slowly too. Four months post-surgery, I travelled to the USA for work. I prepared with snacks and contingency plans. Not every experience was easy, but each
one built confidence.
Over time, I learned that being open helps. When people understand why you eat less, eat slowly, or snack between meals, the awkwardness disappears.
Where I Am Now
Today, I feel settled. I can eat almost everything, though bread still requires care. I don’t feel hunger in the usual way, so eating little and often is essential. Portion control matters – overeating causes discomfort and, occasionally, dumping syndrome. Small bowls, mindful eating, and routine make a big difference.
Most importantly, life feels normal again – just a different normal.
Support and Connection
After surgery, I found local support groups where I could meet people who genuinely understood what I was going through. Sharing experiences – the challenges as well as the progress – made a huge difference.
Support groups also offered access to professionals and practical advice, and reminded me that no two recoveries are the same. Being able to listen, learn, and share my own story became an important part of healing.
Final Thoughts
This journey isn’t easy. But it is survivable, manageable, and with time, life-affirming.
Recovery isn’t about rushing or being strong all the time. It’s about patience, small wins, and accepting help.
Life after surgery isn’t about going back to who you were – it’s about moving forward as who you are now. And you don’t have to do it alone.
Tips and Advice
Having received a cancer diagnosis, it doesn’t have to be all doom and gloom. I was a fortunate patient who had their cancer diagnosed at an early stage.
- Have regular checks: If you are recalled regularly for an endoscopy and checks, please ensure you attend these appointments. If you don’t, there is that small risk of things turning bad, and it may be too late.
- Keep a positive mindset: I believe this helps you prepare mentally and recover quickly if you have a positive “glass-half-full” approach to everything. It’s not difficult and there is no such thing as “I can’t do that”. You can do this, you got this, focus on the positives and don’t dwell on things you can’t change. Accept what you have, and what can be done and relinquish control to the hands of the surgeon and specialists supporting you. If you don’t it will be a tougher journey for you.
- Take the available help: You can’t always do this on your own. Don’t be stubborn, and don’t be fiercely independent, accept those who want to help you recover, and help you go on that journey with you. If you don’t have that support around you, reach out to the charities or the clinical team who can put people in touch with you. You don’t have to do this alone.
- Plan for events in the future: Set goals. Don’t rush into things, don’t run a marathon a week post-surgery. Manage your expectations but maintain the dreams and goals you want in life. The original plans you had don’t have to change, but you may have to evolve the plan a little to adjust to your new lifestyle.
- Eat often and little: A side effect is something called “dumping syndrome” Usually if you have high sugar content your digestive system can’t cope, giving you stomach cramps and instant diarrhoea. For some people it can happen within 15 minutes of eating, others could be 1-3 hours. So, it’s very important to keep an eye on what to eat and when. You will learn and get into a routine. You will still have three meals a day but will find you may snack two to three times in between those meals.
- Join support groups, and forums and read other people’s stories: This helped me tremendously as it helped me understand that I’m not alone. But be cautious about the information out there. Your situation will be unique to you and the internet is full of so-called “doctors” who may give you bad advice or their personal opinions. Try and obtain information from trusted sources, such as HCUK’s support groups, and not so much what they do in the USA where the health care system is very diverse and different. They seem to have a clinic for everything from bunions on your feet to brain surgery!
Finally, try not to change too much and be your usual self. Be patient with loved ones, they are there to help and support you and they don’t want you to be alone in this life-changing event. Remember, this isn’t a short-term change of life, this is your new life now for the rest of your life, embrace and accept what you have.
