Meet the Never Too Young project group
Here’s a fact: I am one of the many faces of bowel cancer. I was 32 when I was diagnosed, and my cancer had developed as a direct result of a genetic mutation. Life had changed in a moment and it was overwhelming. I had a lot of questions: about chemo, about surgery, about my future risk but it didn’t end there. I had questions that went beyond the medicine because let’s face it a life with cancer is still a life. Could I work? Relationships? What about a cheeky prosecco?
Over the years since my diagnosis I’ve learnt a lot about bowel cancer and what I’ve come to realise is that most of what I thought I knew was inaccurate. Early-onset bowel cancer is on the rise and we need a revolution in how we think about this disease because we really are ‘Never Too Young’.
“Eat more fibre”. “Probably IBS”. “You’ve been here a few times, I think it’s anxiety.” “You’re too young for it to be anything serious.”
Turns out, you’re never too young. I’m Sophie and I was 27 when I was diagnosed with stage 4 bowel cancer in my local A&E. It had spread to my liver.
The bit after diagnosis was a total blur. I didn’t know what to ask, where to turn, what anything meant. I needed to know more about my treatment options, but I’m young and vain - I also needed to know how to cover up my chemo rash, if there was any way I could keep my hair and how I could wear jeans with my stoma (thank you high-waisted!). I needed to know whether I could go back to work, to yoga class, or on holiday. I basically needed to know how to live, and I mean properly live, with cancer.
That’s why Never Too Young is so important. There’s a huge gap in the support available to younger people with bowel cancer. Before we’re diagnosed, we often get dismissed by doctors. And then after we’re diagnosed, we struggle to find the information we need to live our best lives. This project wants to change all that.
I’ve had multiple surgeries, heaps of chemo and more nights in hospital than I ever want to count. I’ve also got married, adopted a dog, gone back to work, been to parties, abroad, to the beach, to dinner, to Disneyland. I’ll never be cured, but I hope that by being involved with Never Too Young I can help younger people get diagnosed earlier and live better with cancer.
When I was diagnosed aged 32 I had been experiencing abdominal pain and had to see my GP four times before being referred for a colonoscopy. The cancer had spread to my liver and peritoneum. I was devastated to be told I was incurable and my life expectancy was just two or three years. Nearly six years later, I still have cancer but I try to live life the way I want to.
There have been ups and downs. I’ve lost count of how many rounds of chemotherapy I’ve had, but over the years I have also benefited from cutting edge treatment including HIPEC and stereotactic radiotherapy. Living with treatment long term can be tough, but I wouldn’t be here without it. It would be easy to define my life by this disease. It can sometimes be hard to remember what life was like before cancer, but I make the most of every opportunity. I work part-time, go on regular holidays with my husband, exercise regularly and volunteer for a few charities.
I’m really excited to be getting involved in the Never Too Young campaign, to help give a stronger voice to younger bowel cancer patients. I am particularly keen to see improvements in diagnosis and the recognition of the wider impacts of living with cancer on work, relationships and mental health.
At the age of 32, life was going pretty well. I was 10 years into a successful teaching career, was engaged, planning our wedding together, had finally got on the property ladder, and was starting to plan a family and life together in our new home. However, in the space of two months, I went from being a healthy, active individual to severely ill in hospital, needing blood transfusions and multiple antibiotics to keep me alive. It was during this time we discovered that I had stage 4 bowel cancer, which had spread to my liver and lungs.
Incurable. Inoperable. Palliative. I was devastated and terrified.
Since then, I have been on quite a journey including two x 12 cycles of chemotherapy, four major operations, having a stoma bag fitted and later reversed, clear scans and scans that have shown a reoccurrence of the cancer.
I am about to start maintenance chemotherapy and am slowly getting my head around the idea that I will need treatment for the rest of my life and what this means for me as a young person, especially with regards to work and fertility.
Whilst on this journey I have found that there is not only a lack of awareness that bowel cancer can affect young people, but a gap in the support given to young people with the disease. This is why I am involved with the Never Too Young project; to ensure young people who are going through a similar journey to mine have access to better help and support when they need it as well as increasing awareness that young people can get bowel cancer. You are simply: Never Too Young.
I was diagnosed in my 30s after going to A&E with what I thought was a bad flare-up of my Ulcerative Colitis. Two weeks later, in a hospital bed, I was diagnosed with what I then thought was an old man's cancer. Hmm not really me, but yup I had bowel cancer.
I’ve had no end of scans and tests, surgery, chemo and ended up with a little bag on my tum. After surgery, I sought that little extra support, not from a medical point of view or from my family and friends. I needed to find people like me. I needed to chat about treatments, laugh about poo mishaps, moan about cannulas, talk about that dreamy surgeon and what life will be. And you know I still need this today even though I’m currently in remission.
This is why I believe Never Too Young is super important, with more young people being diagnosed we want to make a community. We understand everyone’s journey is a little different, so no matter what cancer stage, what treatment you have, or where you’re from we want to support you live with and beyond bowel cancer.
My first thought upon hearing the six-letter word that everyone dreads but no-one aged 36 ever expects to hear was, ‘please tell me there is something that can be done about it.’ What I have realised over time is that cancer makes you both more pragmatic and more focussed on living life to the full. However, at the time I was just overwhelmed and terrified. I was incredibly lucky to have amazing support from family and friends during those frightening times but not everyone is so fortunate.
Bowel cancer among the under 50s is very much on the rise, a fact which many people, including some GPs, are unaware. It is this, together with the incredible treatment advances which have been made and the need to make these more widely available, which means that the work of ‘never too young’ has never been so important.
I was 37, married, two small children and in my final year of my law degree in a bid to have a career change. Life was going pretty well, then in September 2016 I ended up in A&E being told I had bowel cancer. I was stage 3, now stage 4, the most frustrating thing is that I had gone to my GP two years beforehand with symptoms and been told I was too young for them to worry about cancer.
When I was diagnosed I decided I wanted to change things, I set up social media accounts to raise awareness particularly in younger people and worked with Bowel Cancer UK to develop a symptoms diary. Then I met Sophia and she started talking about setting up a project supporting younger people with bowel cancer, I wanted to be part of that, and here we are now raising awareness and offering support because we are “never too young” for bowel cancer.
I have joined the Never Too Young project team to coordinate the project activities within the team using my project management skills.
I feel compelled to make a difference in earlier bowel cancer diagnosis for younger people under the age of 50 in order to produce better outcomes for the younger population and future generations and to make bowel cancer symptoms easier to discuss as well as providing support for younger patients more targeted to that audience. The Never too Young campaign and project team are urgently addressing these matters in conjunction with Bowel Cancer UK.
Being diagnosed at 54 with stage 4 cowel cancer presenting at A&E with a bowel obstruction after multiple trips to the GP surgery and being advised it was constipation resulting in emergency surgery, a stoma, followed by multiple surgeries and chemotherapy, I feel very passionately about this cause.