Rachel’s story – Bowel cancer

"I looked at my mum in utter shock and disbelief and thought, “my life will never be the same again.” I was 33 with stage three or four bowel cancer."

Tell us a little about yourself

I’m Rachel and I’m 39 years old. I live in South Wales with my husband and our dog, Sheldon. I work in health and in my spare time, I love to keep active with dance fitness, gym and love going to our caravan and being in nature.

Rachel is smiling at the camera while walking her white dog down a country road with green bushes along the side.

When did your symptoms of bowel cancer begin? What were they?

In 2015, I started to experience urgency to empty my bowels, exhaustion and pains in my stomach after eating gluten or dairy products. It became my normal and I thought that it must be to do with food.

I didn’t notice any blood in my stool or weight loss. As time went on, from 2017, my symptoms were occurring more and getting worse. I was admitted to hospital a few times with abdominal cramps and treated for a cyst on my ovaries which scans revealed. My blood tests all came back normal.

Talk us through your journey to diagnosis

A black and white selfie of Rachel who has taken it while she is laid on the hospital bed. She is wearing the hospital gown with her head on the pillow looking displeased.

In 2018, my dermatologist suggested I should get checked for my symptoms. I was on a prescribed a biologic drug, and we wondered if my symptoms were side effects of this.

I was referred to a gastroenterologist and had a colonoscopy (a camera to look at my bowels) and biopsies (tissue samples) taken from my bowel and appendix. When I was having my colonoscopy, I saw something on the screen that looked like a white alien and remember thinking, “thank goodness something has been found” but didn’t think for one second it could be cancer because of my age.

I had an appointment two weeks later, on 26th November, and I was told I had bowel cancer. I looked at my mum in utter shock and disbelief and thought, “my life will never be the same again.” I was 33 with stage three or four bowel cancer. I couldn’t believe it was happening to me. I shook with shock.

Talk us through your stoma surgery

Everything happened quickly after my diagnosis. I was in and out of hospital for CT scans and saw a stoma nurse, in case I needed a stoma. They reassured me the cancer had been caught early so seeing the stoma nurse felt more precautionary. I was taken down for surgery on 12th December.

Nine hours later, I woke up in recovery. My immediate thought was, “have the surgeons eaten as they’ve been operating on me all day?!” then my consultant told me they had to take more bowel more than they originally hoped and I had a stoma (colostomy – where the end of the large bowel is brought out of the abdomen so waste can pass into a bag). I also found out I’d had a hysterectomy (a surgical procedure to remove the womb) which was a big shock.

Rachel is lifting her yellow Lumberjack shirt up to show her tummy. She has an stoma bag and she is pointing to it with her left index finger.

I was in that much pain, I couldn’t cry. I just wanted to know if I was going to live. I couldn’t look at my stoma to start with and nurses changed my bag for me. Once I looked at it, I was fine with it and focused on trying to get used to how my stoma felt when it was working.

Did you need any other treatment?

After surgery, I started eight cycles of chemotherapy. However, my treatment plan had to be changed due to experiencing severe side effects. When I breathed in, it felt like the air was choking me, I had severe sickness and experienced severe nerve pains when trying to do everyday things like washing my hands. My husband supported me throughout and I’m so thankful for him.

Unfortunately, in September 2019, my cancer spread to my lung (stage 4). But in November 2019, I had successful surgery and further chemotherapy treatment through to April 2020. A follow-up scan was clear, much to my huge relief! That feeling was indescribable.

I also had my stoma reversed in 2021.

Rachel is laid down in her white long sleeved t shirt pulled up to her ribcage to display her stomach. She is starting at her stomach and pointing with her left index finger to show that her stoma has been reversed.

How are you doing more recently?

My focus is on rehabilitation and getting my fitness levels back up. I work out and go on lovely walks with my husband. I’ve got two more surveillance scans before I am discharged from cancer care.

I use my diagnosis to help other young people where I can, and I currently volunteer and fundraise for Bowel Cancer UK. I also am dedicated to raising awareness via my Instagram. The patient voice is so important, along with sharing hope and spreading awareness to encourage others to know their normal and when to get checked.

Rachel is grinning at the camera in a room in her house. She has her right hand on her hip and she is wearing the blue Bowel Cancer UK vest.

What’s your hope for the future for yourself and those affected by bowel cancer?

A cure is my number one hope. Before that, I am eager to help towards more young lives being saved through encouraging conversations surrounding our bowels, raising awareness, and promoting health education. Bowel cancer can happen to anyone, and it’s so important to be aware of the signs and symptoms and not to delay getting checked.

A Guts UK cartoon of a scientist in a white lab coat with their left arm raised in the air and right hand holding papers.Guts UK is proud to fund Professor Colin Rees’ COLO-COHORT study.

This project aims to develop a “risk stratification tool” to help determine which people are at higher risk of developing bowel cancer or polyps.

Though screening programmes are already in place, these only consider age. The COLO-COHORT study will explore other factors, such as lifestyle and family history.

This tool aims to better screen the population for bowel cancer in the future and determine who is at higher risk of developing bowel cancer or polyps.

But we can’t do it without you. You can save lives. Please consider donating today. Thank you.