In 2015 I was diagnosed with bowel cancer. It was a shock; it was also quite lonely. There seems to be an element of camaraderie around some illnesses, but with bowel cancer you are on your own.

Three years later my brother died of the same disease, and I discovered that it had been rife in my family, but nobody ever mentioned it. So, I became involved in advocacy, helping charities and the NHS to raise awareness of bowel cancer and cancer rehabilitation.

Local support

Roll forward to February 2020: I was just about to launch a local bowel cancer support group when COVID-19 struck. The launch was cancelled. However, the pandemic was not going to slow down the rate of people getting cancer. I considered setting up an online group.

There are many online support groups, and some are poorly run. This gives the all of them a bad name among clinicians. I was determined that this group would be different. It would be responsible and supportive.

Bowel Cancer Support Group UK on Facebook is now three years old and has more than 3,500 members. It is moderated by a team of committed volunteers, focused on support.

What is support?

It took a while for us to realise that support is mostly about caring for the mental health of the members. Everyone afflicted by cancer will be affected by it, from the basic fear of the unknown, and anxiety around medical procedures, to deeper psychological issues around fear of death. When I read a new post, my first thought is ‘is there anxiety here and if so, how can we reduce it?’.

Information and explanation are a big part of our activity. Having the correct information can remove unnecessary anxiety. The information is out there; we do the job of finding it and helping the member understand it.

Signposting is the second string to our bow. We tell members where to get further information, services and support. This may be for straightforward issues such as rehabilitation classes or stoma supplies, or more serious issues where we spot ‘red flags’ and point members towards urgent professional support.

Then there is advice. Not clinical advice, but the kind of advice that can only be given by someone who has experienced what you’re experiencing.

So far, I have summarised what the moderators do, but by far the biggest contribution comes from the members themselves. They bring empathy and experience. New members tell us how relieved they are to be able to talk about their situation to people who really do understand.


Increasingly we are finding our members are using some form of digital health app that enables them to access their records. We encourage this.

When someone asks a question about their diagnosis, there is a big difference between ‘what the consultant said when I came round from the operation’ and a detailed staging, test results and biomarkers as shown in their records.

With a little help from us, this information can enable the patient to self-advocate much more effectively, especially with Stage 3 and 4 cancers. It makes real, the possibility of shared decision making. You have the same data as the clinician. You may need support to understand what it means, but you have it.

Easy access to our records is going to become a necessity. In many ways, colon cancer is not one cancer, but thousands of cancers, each unique to one person. Already WGS (Whole Genomic Sequencing) and NGS (Next Generation Sequencing) of tumour DNA are providing significant advances in understanding each individual’s disease. This gives us, the patients, the opportunity to research the specific treatment options, consultants, and trials we might need.

We are a large and active group. Typically 1000 – 1500 members will check in daily. They are bringing expertise and experience, but also learning every day. Discussions about the details of diagnosis encourage more patients to access their own data and become empowered.

Stephen Rowley has a wide background in science, engineering and the arts. As a cancer advocate, he represents patients on his local NHS Trust and the regional Cancer Alliance CRC Clinical Advisory Group. He is an awareness speaker for Bowel Cancer UK, and is also involved in awareness campaigns for Bowel Cancer West. He is a patient advisor on several trials and research programmes and is member of patient cancer insight panels for Pfizer and Illumina. Internationally he is a member of the Patient Advisory Council for Digestive Cancers Europe and the cancer advocacy group Inspire2Live.

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