Survival rates for pancreatic cancer are frighteningly low and have remained so for 40 years – now one York grandmother wants that to change

MARGARET Clark would love to see York Minster or the Mansion House lit up in purple this month.

No, it's not an extension to the Illuminating York project, but a desire to raise awareness of pancreatic cancer – a devastating disease that has seen little change in survival rates for 40 years.

Pancreatic cancer is the UK’s 10th most common cancer, yet has the worst survival rates for all 22 common cancers with just four per cent of patients making the five-year milestone. Shockingly, the average life expectancy on diagnosis is just four to six months.

Actors Patrick Swayze and Alan Rickman are just two of the most famous names who have battled the disease.

York grandmother-of-three Margaret is just one of many speaking out this November to mark Pancreatic Cancer Awareness month.

Margaret, aged 60, says she is one of the lucky ones. It's an amazing statement to make when you consider that she was diagnosed with inoperable pancreatic cancer and has undergone six rounds of chemotherapy and 30 sessions of radiotherapy. But she is defying the odds and is three years on from her original diagnosis; the treatments have shrunk her tumour and the disease is stable.

Not all patients are so lucky. Pancreatic cancer is the UK's fifth biggest cancer killer, claiming 26 lives each day – more than 9,000 a year – and yet only one per cent of cancer research funding goes into finding a breakthrough for patients.

Survival rates are so low because the majority of patients are diagnosed when their cancer is at a late stage when surgery to remove the tumour is no longer an option. The symptoms, which are varied and can mirror less serious problems, can include back pain, new-onset diabetes not associated with weight gain, vague indigestion or abdominal discomfort that doesn't respond to prescribed medication, loss of appetite, nausea and vomiting, pain when eating, steatorrhea (fatty stools that are often pale and smell foul), jaundice and depression.

Margaret's story begins back in the summer of 2013 when she saw her GP about acid reflux. The tablets she had been on for six months, Lansoprazole, had stopped working, she was losing weight and complaining of lower back pain as well as feeling full after only eating a few mouthfuls.

Margaret underwent an array of tests, including two endoscopies (where a small camera on a flexible tube is put down your throat to examine your digestive tract) and a PET scan, (which produces 3-D images of the inside of the body).

Doctors considered a range of possibilities from pancreatitis (inflammation of the pancreas) to gastroenteritis (inflammation/irritation of the stomach and bowel) to gallstones.

Margaret felt quite well and didn't think it could be anything too serious. So she was shocked to be diagnosed with pancreatic cancer.

"The doctors found a tumour around the artery at the top of my pancreas. I didn't think it could be possible, as I felt reasonably well. I asked them: 'how long have I got' and they said to wait and see how the chemotherapy went."

And so began five months of treatment: six chemotherapy treatments spaced at three weeks apart at York Hospital followed by 30 cycles of radiotherapy at St James's in Leeds.

It was gruelling and Margaret suffered from nausea, loss of appetite and debilitating fatigue. Margaret recalls: "You can't know what that is like until you experience it. You just don't want to get up and have to force yourself to do anything. You are always falling asleep, but that is when the body heals itself."

Margaret managed to remain positive during her treatment, despite the dark prospects. "It really upset me to begin with. My daughter-in-law was eight months pregnant and I wondered if I was going to see my grandchildren grow up."

Living with the disease focuses your mind on the present, says Margaret, grandmother to Emily, six, Sam, two, and one-year-old Charlie. "I don't plan too far ahead. I won't say I will have a holiday in six months' time. The furthest I will plan is a couple of weeks ahead and I try not to think about it. I have written my will and paid for my funeral."

Margaret is grateful for her treatment and the support she has received, particularly from York Against Cancer which provided a minibus to take her to Leeds daily during her radiotherapy treatment, alongside a dozen or so other cancer patients from York.

She said: "It was marvellous, the two drivers were fantastic and kept your spirits up. Everyone was going through the same as you. When the bus arrived in Leeds, we would go straight through to radiotherapy and all the patients on the bus would be seen straight away which meant we'd all get home around 2pm."

Out of all the patients she met on the bus, she was the only one suffering pancreatic cancer. Sadly, says Margaret, this is because many patients do not live long enough to have the treatment, with many dying just weeks after diagnosis.

The great news for Margaret was that the treatment shrunk her tumour – from 25mm to 15mm. Her latest scan just last month showed no change, suggesting her cancer is stable.

Given the dreadful statistics of this disease, Margaret acknowledges she is one of the "lucky ones".

"I know I am very lucky. When the diagnosis is very late, people often don't have the chance to have chemo or can't tolerate it because they are so weak by then. There are some good news stories however with some people surviving for five years who have not been operable."

Margaret has not been able to return to work as a home care giver because she has been unable to gain insurance because of her illness. However, she is an avid campaigner for cancer research, taking part in Race For Life and the Pretty Muddy Race which involved being splattered in muck and facing an obstacle course. "It was hard, because there was an obstacle course, but I did it."

Last year, she tried to have a civic building lit up in purple, the colour of the charity Pancreatic Cancer Action, to no avail. Instead, she ran a stall in York giving out awareness leaflets to the public. Next year, she would love the Minster or the Mansion House to be lit up in purple to lift the profile of the cause.

She says early diagnosis is the best way to improve outcomes, and doctors need to do better at recognising the disease in patients, while researchers need to find better ways to diagnose it.

Self awareness is so important too, says Margaret. "If you have any symptoms that are not normal to you, you should go to your doctor. If you have got more than one of these symptoms such as back pain, indigestion or jaundice then go to your doctor and tell them what you think it is. You know your own body."

Find out more at pancreaticcanceraction.org