Beating bowel cancer together

Neil Barker, Peterborough

I was diagnosed with stage two bowel cancer in July 2003 when I was 41 years old. There is no such thing as ‘never too young’ with bowel cancer.

I already had crohn’s disease which was diagnosed in 1993. The symptoms are very similar to bowel cancer, and over the years experienced flare ups with blood in poo, weight loss, extreme fatigue and blockages that cause extreme discomfort.

I just thought it was the IBD getting worse. I mentioned this when attending a routine appointment with my Gastroentrology team at my local hospital who said I was due a colonoscopy. I knew there was an increased risk of me being diagnosed with bowel cancer due to crohn's, but the hospital was monitoring me so I felt in good hands. The colonoscopy revealed a colon stricture which the camera couldn’t get past and a subsequent CT scan showed a tumour.

I was diagnosed with bowel cancer and had surgery to have my colon, rectum and anus removed, which has left me with a permanent ileostomy. I then had six months of chemo punctuated by having a brain tumour identified and successfully removed, luckily this was not connected to bowel cancer.

It might sound strange, but I actually felt much better after my bowel cancer diagnosis. Whilst crohn’s is incurable, since my operation to remove my bowel and rectum, my symptoms were less severe. I guess every cloud and all that!

But then in 2010 bowel cancer struck my family again. My father was diagnosed with the disease and died a month later. He was 74 and had very few symptoms.

So when in 2016 I heard about Lynch syndrome from my sister in the States, I immediately mentioned this to my GP who thought it worth looking into given my family history. An appointment was arranged with the genetics team at Addenbrookes. They took my family history and tested a sample from my tumour. A few months later the test results came back negative. It was a huge relief.

It might sound strange, but I actually felt much better after my bowel cancer diagnosis

What I’ve learned from all this is to keep routine hospital appointments, ask questions and get symptoms checked out. If you have IBD, then do ask when you will need a colonoscopy since many symptoms a the same. There really is no such thing as a silly question. It could save your life!

With everything I’ve been through, that’s a lesson I really wanted to spread. After finding out about Bowel Cancer UK in 2017 I asked how I could volunteer to do just that.

I’m passionate about healthcare and I have a communication and training background, so the health promotion awareness talks are something that really appealed to me. I’ve now done several talks which are great for increasing awareness and you can tell that the audience is engaged and it strikes a chord with them by the questions they ask.

That ‘lightbulb’ moment makes it all worthwhile! I now have run a training session to train new awareness volunteer speakers and the East of England Cancer Alliance conference. I look forward to running more of these training sessions as there is much work to be done to address health inequalities around cancer and bowel cancer in particular. 

I want to keep raising awareness of bowel cancer symptoms, healthy lifestyle and taking up screening – these are positive messages that need to be spread. You never know, it might just save a life!

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