Finding hope through the heartache of pancreatic cancer
Survival rates for major cancers have improved dramatically in recent decades yet pancreatic cancer continues to claim the lives of the vast majority of those who develop it
FORTY years ago few children survived childhood leukaemia – now the survival rate is 80 per cent. Forty years ago only 46 per cent of women diagnosed with breast cancer survived five years or more– now that rate is 80 per cent. Forty years ago 3 per cent of people diagnosed with pancreatic cancer survived five years or more. That figure is still 3 per cent.
In Northern Ireland in 2015, 273 people were diagnosed with pancreatic cancer, and due to the low survival rate of just 5 per cent only 14 of those patients are likely to survive into 2020.
Pancreatic cancer occurs when a malignant tumour forms in the pancreas. It is the fifth biggest cancer killer. There is no test for pancreatic cancer and sadly due to late recognition of symptoms or misdiagnosis, around 80 per cent of pancreatic cancer patients are diagnosed at a point when the disease has spread to other organs and curative surgery is not an option.
Newtownards man Gary Carson knows all too well the heartache of pancreatic cancer, after losing his beloved wife Sandra to the disease, at the age of 52.
"2014 started like any other year. But at Easter Sandra started to get some pain and sickness, but nothing we were terribly concerned with. Then she had back pain, which crossed into her abdomen and her energy levels dropped significantly.
"Throughout May and June 2014 she attended a number of doctor and hospital appointments. She would tell them she was going on a cruise to Alaska on September 1 and they told her that hopefully by the end of August they would get to the bottom of this and she could go," he recalls.
However, with pains increasing and having developed jaundice, a visit to the out of hours doctor on July 20 led to a hospital admission. A CT scan the next day delivered the news that Sandra had an inoperable tumour in her pancreas and had only weeks to live.
"You could tell by their faces they were not giving us any false hope. Sandra turned to me and said, 'It's OK, I'm in God's hands now',” recalls Gary, who said his final goodbye to Sandra less than a month later, a week before their 28th wedding anniversary.
Five years later, Gary has built on the experience of those terrible days to write a book charting his life with Sandra and the impact of pancreatic cancer. He hopes Thank God We Met Sandy will help others affected by the cancer, as well as highlight practical advice some of the common symptoms of the disease.
Proceeds from the sale of the book will be given to Northern Ireland Pancreatic Cancer (NIPanC), of which Gary is secretary. Formed in August 2018, NIPanC is a local group working in partnership with Pancreatic Cancer Action and the Pancreatic Cancer Research Fund to promote awareness of pancreatic cancer, support affected families and fund vital research. Its president is Jim Dornan, whose wife Lorna died of pancreatic cancer aged 50 in 1998; its patron is their son, the actor Jamie Dornan.
"At the start it was hard to see the keyboard with tears," says Gary, who found writing Thank God We Met Sandy an important part of his healing process.
His advice to those going through bereavement of a life partner is to "appreciate the positive aspects of what you have experienced together in your life".
"I remember going to an occupational health appointment and telling the officer all about the worst summer of my life and losing Sandra, and being dumbfounded when she said, 'You're one of life's lucky ones'. I thought she hadn't listened to a word I had said. Then she went on to say about how she listens to stories of debt, divorce and unhappiness. 'You and your wife have experienced a lot of what others haven't'," he recalls her saying.
Gary never expected his married life to be brought to an end so abruptly and tragically by pancreatic cancer and appreciates that, for Sandra, any treatment would have been too late to make a difference.
"Surgery is currently the most effective treatment, but it must be carried out at an early stage of the disease. We need to fund necessary research to find better ways to detecting pancreatic cancer early and better treatments to tackle it effectively," he says.
Former Dr Feelgood guitarist Wilko Johnson is one of the small number of people who have survived pancreatic cancer – which is the disease from which popular west Belfast singer-songwriter Bap Kennedy died in 2016.
Another survivor is Belfast man Ivan McMinnn, who was a fit 49 year old, who was in training for the 2012 London Marathon, when was diagnosed in November 2011. Radical surgery known as the Whipple's procedure – which involves an operation to remove parts of the pancreas, small intestine, gallbladder and bile duct – followed by six months of chemotherapy meant that he didn't run the marathon, though he fought back to complete it in 2013 and again in 2014.
Seven and a half years post-diagnosis Ivan is still living life to the full and doing his best to help others.
"That same determination drives me to do all I can to defeat this terrible disease and I am very proud to be NIPanC's treasurer playing my part in what is a wonderful team of folks who all share that same goal of increasing awareness, supporting those impacted by pancreatic cancer and funding research.
"I had little knowledge of pancreatic cancer or it's stark statistics. I remember the doctor telling me 'the bad news is you have pancreatic cancer but the good news is you are one of the 15 per cent that has a chance of surgery'.
"Then it was a case of taking my chances with the rest of statistics. Thankfully I was one of the lucky one, but the biggest hope of progress in improving survival rates is research."
:: Thank God We Met Sandy by Gary Carson can be ordered by messaging the NIPanC Facebook page or by calling at the Ards Evangelical Bookshop and Faith Mission bookshops.
Pancreatic cancer symptoms
LAST month, Pancreatic Cancer Action launched a multi-targeted awareness campaign in Northern Ireland, among the general public, pharmacy teams and GPs. This was in response to results from a recent survey which showed awareness of pancreatic cancer in the north is the lowest in the UK, with only 2 per cent of the population knowing a lot about the disease.
What are the main symptoms of pancreatic cancer?
:: Jaundice – yellowing of the skin and whites of the eyes, and/or very itchy skin
:: Unexplained weight loss
:: Upper abdominal pain or discomfort, which may radiate to the back
:: Mid-back pain or discomfort
:: Indigestion which does not responding to medication
:: Pale and smelly stools that don't flush easily.
Other symptoms may include:
:: Loss of appetite
:: Pain on eating
:: Nausea and vomiting
:: New onset diabetes – not associated with weight gain
:: Low mood or depression.
The symptoms and severity can vary for each person but it's important that if you are experiencing any, which are persistent and not normal for you, you visit your GP.
:: For further information visit Pancreaticcanceraction.org or Nipanc.org.