Bethany Purvis, Bishop’s Stortford
In September 2016 I was diagnosed with bowel cancer. I experienced constipation and diarrhoea with intermittent rectal bleeding over a period of time.
I spoke to my GP about my symptoms two years before being diagnosed but was told that it was probably IBS and anal fissure (a tear or ulcer that develops in the lining of the anal canal).
In April 2016, I went to A&E with a suspected rectal prolapse and had sigmoidoscopy followed by two colonoscopies. I was diagnosed at stage three bowel cancer as it had spread to six of my lymph nodes. I had surgery to remove the tumour which left me with an ileostomy for a year, which was reversed however after complications a permanent colostomy was formed.
After surgery, I had chemotherapy for six months but suffered from peripheral neuropathy, which has still not gone away. In November 2017, a CT scan revealed spots on my lungs, which are confirmed to be metastasis. I’m now diagnosed at stage four and have been advised that my cancer is now considered incurable. I am back on chemotherapy in the hope that the treatment will prevent further spread and keep the cancer at bay extending my life.
I struggled with the stoma at first, which has affected my relationship with my husband and two children, but also changed the way I felt about my own body.
I didn't feel attractive with the stoma, although my husband assured me I am, and I did not want my children to know about it or see my body with it. This was difficult as we are usually very open about our bodies, but I just didn’t want to get my head around it or accept it. I did not want my family to know how I felt about it therefore I managed to hide my anxieties. I hated seeing the stoma every day and, at times, it really got me down.
I put on a brave face but I think this leads to others forgetting what I am going through, which is what I actually wanted.
Since the colostomy was formed I have now come to terms with having a stoma and it does not affect anything I do, I travel, I still ride my horses, I do exercise and swim just as I did before. In fact I am now so confident about my stoma I have even shared pictures of myself on social media with my colostomy bag showing. It has turned out not to be the negative thing I thought it was at first, and simply become a part of who I am, and I have actually found some advantages to having a stoma over being a normal person without a bag! I now look back and wonder what I was so worried about, it has taken time to get to there though.
Chemotherapy makes me tired and grumpy, but I try and carry on as normal as much as possible. I put on a brave face but I think this leads to others forgetting what I am going through, which is what I actually wanted. I then end up resenting them when they do not make allowances, which is harsh of me but I don’t really want to be treated differently.
I was in my final year of my law degree when I started my treatment and managed to complete it despite everything. I had plans of qualifying as a solicitor but have had to abandon my studies and plans at least for now. The hardest thing for me is not knowing what the future holds, or just how much of a future I might have. I just grab opportunities as they come along; I might have once thought that I have plenty of time to do that another day, but I no longer feel that way.
But we’re leading change
Never Too Young is leading change for younger bowel cancer patients. Every year 2,500 younger people are diagnosed with bowel cancer in the UK. Our research has shown that younger bowel cancer patients have a very different experience of diagnosis, treatment and care.
What are we calling for?
- Improved clinical guidance and practice on bowel cancer in younger people
- Improved identification of people with genetic conditions and access to surveillance screening
- Improved information for younger people on bowel cancer symptoms
Together we can STOP bowel cancer
We have collaborated with Beth to develop a symptoms diary for people that are worried about their bowel habits. The symptoms diary, pioneered by Beth, supported by Coloplast and formally endorsed by the Royal College of GPs, aims to help keep track of a person’s symptoms before they visit their GP. This will give a good indication to their doctor whether they need further tests. Patients may not remember all their symptoms during the short appointment so having something written down can be useful.