Stacey Heale, 37 from Southampton
"My partner, Greg, was diagnosed with stage four bowel cancer in November 2016 at A&E at 39 years old. We were told this news on our second daughter’s first birthday.
"At this point although it was the worst news I’ve heard, at least we had a plan of action. After four years of not knowing why Greg was suffering so much, at least now we know.
"Greg had an MRI scan at the same time he had a CT scan, and the consultant did say that they could see something small there, but he was so flippant about it we weren’t worried at all. A week later, the plan of action changed as the tumour had in fact spread to his lungs. He was now deemed inoperable and would just have chemo to extend his life.
"I went into complete shock. I vomited, I had diarrhoea, I was shaking, freezing cold. Greg was calm. We had a weird conversation that our daughters shouldn’t live in fear. I just focused on getting him home as he’d been at the hospital for two weeks. We cancelled all our plans, including our daughter’s first birthday party. It was Greg’s 40th birthday and I had planned a surprise party as well as going to a nice hotel for the weekend.
"There’s only so much the NHS can do with advanced bowel cancer. It’s not a personal approach, it’s a ‘one size fits all’. We went to a chemo workshop and we were the youngest couple by decades, the nurses were chatting about extending life so they can continue to play with their grandkids – our kids are toddlers.
I couldn’t live with myself if I didn’t think of every option, I wanted to leave no stone unturned.
"Through my own research, I found a drug called Avastin – not available on the NHS. We went to a private consultant as we wanted a second opinion on his treatment and they were astounded we didn’t have medical insurance. They said treatment with them will cost £100,000 a year. We don’t have that money, we’re just normal people. I suggested we sell the house, but Greg was opposed to that and where would we live?
"The only thing I could think was to set up a GoFundMe page. I didn’t want money to be the reason Greg didn’t survive. I couldn’t live with myself if I didn’t think of every option, I wanted to leave no stone unturned. Greg didn’t want me to set it up as he thought raising £100,000 is just too ambitious and didn't want me to be disappointed. I spent the next few weeks researching the successful people that raised money on GoFundMe.
"Our friends have been amazing, for the first four months after Greg’s diagnosis they came up with a rota that ensured we had a home-cooked meal every night. They bought toys for the kids, cards, flowers and groceries. It was an astonishing amount of support.
"It’s taken its toll. I’m now on medication; I’ve been signed off work for stress since November 2016. I speak to my friends but I’ve started seeing a counsellor. It’s just too much for one person. I feel lonely and isolated as I’ve got no one else to talk to who understand what I’m going through. The worst thing about it is that we’re just stuck, we don’t know what the future holds – there are so many unknowns. We just have to take it one step at a time."
Read more about Stacey on her website, Beneath the Weather
But we’re improving access to treatment and care for advanced bowel cancer
Nearly 10,000 people in the UK are diagnosed with advanced bowel cancer each year. This is when the cancer has spread to somewhere else in the body, such as the liver or lungs. People with advanced bowel cancer typically have poorer outcomes but access to surgery and drugs can help to extend life and can sometimes be curative.
We are determined to improve survival rates and support for people with advanced bowel cancer. We want to see improved access to high-quality treatment to ensure longer survival and a better quality of life for people, including:
- Increasing survival rates and improving holistic support for patients and their families
- Reducing inequalities in access to potential life-saving liver surgery
- Improving access to cancer drugs based on clinical need and not postcode
- Providing better communications and support for people with palliative and end of life care needs