I have stage 4 lung cancer at the age of 40 and I have to constantly 'fight' for treatment because UK is falling behind

Jules Fielder, 40, has stage 4 lung cancer, the most advanced stage. She was diagnosed with the disease in 2021, which has since spread to her spine and pelvis. As her cancer is incurable, she relies on her three-monthly CT scans to tell her if she has another three months to live.

She continues to live life to the full with her partner and son, but said she constantly feels she has to fight to get the care she needs.

Jules said: “I feel like if I didn’t fight for myself, I’d be left behind. When I’ve had a scan, I have to be on the case a few days later emailing my health care team to see if my results are in. If I don't push for it, I don't know how long I would sit in the system before I'd get the phone call I’ve been desperately waiting for to be told whether I have another three months to live.

“As a stage four cancer patient, it’s terrifying to think that I could be failed by the medical system. It’s essential that I get the timely care I need because my life could change dramatically overnight. The new government needs to truly listen to our health needs. We deserve to be healthy and happy.”

Jules said she was unable to see her doctor face-to-face during summer 2021 due to coronavirus restrictions and was given exercises to treat suspected ‘tennis elbow’.

In November 2022, she said she was ‘angry’ that her symptoms ‘weren't pieced together sooner’. She said: “Instead, I was diagnosed with sciatica for my back pain, tennis elbow for the shoulder pain and a swollen gland for the lump in my neck.”

Jules’ story comes as Macmillan Cancer Support said this week that cancer survival rates in the UK are as much as 25 years behind other European countries.

The charity said its analysis shows that the UK’s survival rates for several common types of cancer are only just now reaching what countries such as Sweden and Norway had already achieved in the early 2000s, or even earlier in some cases.

The charity said that cancer care across the UK is making people feel ‘left behind’ but that better is possible. It added that its analysis suggests if the UK’s survival rates matched the best in Europe, thousands more people who are diagnosed each year in the UK would survive their cancer for at least five years.

It said the research shows that the latest five-year survival rates for men with colon cancer in England and women with colon cancer in Wales are still below what Sweden had already achieved by the early 2000s, with a similar picture for prostate cancer in Scotland as well as one-year survival for male colon cancer in Northern Ireland. In some cases, the gap is even larger, with survival for women with cervical cancer in England lagging 25 years behind Norway, the charity said.

Gemma Peters, Macmillan Cancer Support’s chief executive officer, said: “Behind today’s shocking data are thousands of real people whose entire worlds have been turned upside down by cancer. Helping people with cancer live longer is important but so is the quality of their lives. They shouldn’t have to spend their days worrying about delays to their treatment or how they’ll be able to afford the petrol or bus fare they need to get to their next appointment; cancer is enough to have to deal with.

“It’s clear that cancer care is at breaking point but this is a political choice and better is possible. Cancer has led the way in changing the healthcare system for the better before, with Macmillan driving the creation of Cancer Nurse Specialists to ensure patients are treated by professionals with the right skills and expertise, and by developing ground-breaking digital assessments to ensure every person diagnosed has the best chance of receiving the care and support they need. It’s time to lead the way once again.

“Together, with politicians and partners, we can transform cancer care for a more hopeful future for people with cancer and the people who support them. We urgently need the next UK government to prioritise a long-term cross-government strategy that revolutionises cancer care and ensures everyone with cancer has access to the care they need, every step of the way.”

Macmillan Cancer Support is inviting members of the public to contact all their local candidates, using an online tool, asking for a commitment to transform cancer care if elected. People can support this effort by visiting macmillan.org.uk/general-election-2024.

For anyone concerned about cancer or their care, call the Macmillan Support Line on 0808 808 00 00 or visit macmillan.org.uk.