'I lost my mum to the same cancer as David Bowie and Alan Rickman... now all their memories will help to save lives'
Grainne O'Neill lost her mother Annie to pancreatic cancer, which claimed the lives of the two celebrities last week. She tells Una Brankin why she is shining a light on one of the deadliest forms of the disease.
The recent deaths from pancreatic cancer of David Bowie and actor Alan Rickman, both at 69, have reawakened painful memories for Grainne O'Neill.
The young Armagh woman lost her mum Annie to the disease - the UK's the fifth most common cancer killer - at the age of 54, just seven months after she was diagnosed.
Since that tragic winter's day, in January 2014, Grainne (23) has raised £40,000 through her Fight On For Annie campaign for cancer research and awareness raising, a cause supported by actor Jamie Dornan, who lost his mother to pancreatic cancer when he was only 16.
"It's terrible to hear of anyone dying of this awful disease but, in a way, David Bowie and Alan Rickman dying of it - and Steve Jobs and Patrick Swayze - helps raise awareness, and that's something that is priceless, because of the importance of early detection.
"Jamie Dornan has millions of fans and they have been so supportive since he posted a photo, with his dad, of him wearing our fundraising purple wristbands. I contacted him through Twitter and he was kind enough to do that for us. It's funny, that's the colour associated with pancreatic cancer awareness raising, and it was mum's favourite colour."
Annie O'Neill's flu-like symptoms first emerged in May 2013, when she woke up aching all over. Unfortunately, she was misdiagnosed twice.
"Her whole body was sore; there was blood in her urine and the doctor thought it was a kidney infection and gave her antibiotics," recalls Grainne, a softly spoken sports events manager. "That settled the symptoms a bit and she wasn't in as much pain, but there was still this niggle in her side.
"So she went back to the doctor and was given more antibiotics and was sent for an ultrasound and an MRI, because her gall bladder was sluggish and they thought that was it. We started to get really worried when she stopped eating. Even the smell of food made her feel sick. Then, she became jaundiced." Annie was in Craigavon Hospital being treated for the jaundice when she was diagnosed, in July 2013.
"She was alone; she was told by a doctor doing his rounds one morning," says Grainne quietly. "It's ridiculous. Not the best way to be told. She had to text dad and once he got the text, he knew.
"We'd suspected it was cancer by that stage, when she couldn't eat. When dad told me, in the living room, he burst into tears. All I could say was 'where?'. When he said 'pancreatic', I instinctively knew that was one of the bad ones to get. I just knew it was the beginning of the end. Mum stayed positive though.
"The doctors were very, very negative. They told her it was stage four and inoperable, and that chemo wouldn't work, but she told them she would be a miracle. She had great faith."
Grainne is the youngest of the three children of Annie and Tom (59), a retired publican (he and Anne ran the Shambles bar in Armagh). Grainne has an older sister, Sinead (28) and a brother, Fergus (26). As the baby of the family, she was particularly close to her mother, whom she describes as her best friend.
On July 11, 2013, Annie was due to have a stent inserted in a blocked bile duct.
Grainne explains: "Because of the Twelfth, it took a while to get that done, and time is so precious when you're fighting pancreatic cancer. Mum was always healthy - she'd given up smoking 20 years before, and she was never heavy, so when she lost a stone and-a-half, she looked like a little girl. She was very frightened - she knew this thing was taking over her body, so she decided to go for the chemo anyway. She had three sessions of it and kept her hair, thank goodness, and wasn't too sick with it."
In September 2013, Annie was told her life expectancy would be three to four months. She battled on for seven.
"She was stronger than any of us - she took it on the chin and still said she'd be a miracle.
"The doctor said that would be nice, but quoted statistics and said it wouldn't happen. He was rude and he deflated her. But she had some lovely alternative therapies and that was nice for her."
Anne was due for more chemotherapy over Christmas 2013, but was too weak for it. A further scan showed the cancer had spread to her backbone.
"We had a lovely Christmas and New Year, despite everything, but mum went downhill fast after that. She was readmitted and went into a coma, two days before she died. It was very peaceful, with all of us around her.
"It's very tough, but I think mum is somehow giving us the strength to get up and keep going every day. She'd give us a good shaking if we didn't. Dad adored her; he talks about her all the time. And I've had different experiences and wee signs over the last two years.
"On the night after her burial, I felt someone squeeze my hand when there was no-one there, and we constantly see a robin, which is supposed to be the sign of a loved one coming back to see you. Mum always told me she wouldn't be too far away."
Grainne launched the website, www.fightonforannie.com, in October 2014 and has been raising funds through the sale of purple wristbands, the internationally recognised colour associated with pancreatic cancer.
Armagh Gaol was lit up in purple in support of the campaign and last October, the Fight on for Annie Purple Gala Ball was held in Belfast's Europa Hotel to raise money for both Pancreatic Cancer UK and Pancreatic Cancer Action UK in memory of Annie O'Neill, who personally raised £3,000 from a coffee morning she held before she died.
Tragically, only 3% of pancreatic cancer patients survive the disease for five years or more. Pancreatic cancer is one of the hardest tumours to detect and treat. Just under 9,000 people are diagnosed with it in the UK every year. Although it has the lowest five-year survival rate of any common cancer and one that has barely improved in 40 years, a new treatment has been developed by researchers at the Ulster University which, they claim, could lead to a five-fold reduction in tumour size.
The treatment involves injecting tumours with oxygen micro bubbles that are coated with a drug which is then activated by ultrasound.
"The poor rate of survival is shocking when compared to developments in other cancer areas - it needs to change and our goal is to help to achieve this sooner," adds Grainne.
"The campaign is also helping us keep mum's memory alive. She was the most caring, lovely person and she had a beautiful smile. She lost her own mother, when she was 22, to a heart attack, and she knew what it was like to grow up without a mum.
"That broke my heart and when she became ill, our roles became reversed, and I was the parent, in a way, looking after her. Her loss has become more of a reality now. I realise she's not coming back, but I know I'll see her again, one day."
Survival rates still poor
- Pancreatic cancer is the UK's fifth biggest cancer killer with a survival rate of 4% ■ Just 3% of GPs who responded to a recent survey, commissioned by Pancreatic Cancer Action, said they felt fully confident and informed about the symptoms of the disease, and the difficulty in recognising these was deemed to be the main barrier to diagnosing patients early
- The pancreas, which is a gland, produces digestive enzymes that help break down food; and hormones, such as insulin and glucagon, that help to control blood sugar levels
- Common symptoms can include the following: painless jaundice (yellow skin/eyes, dark urine) related to bile duct obstruction; significant and unexplained weight loss; new onset of persistent abdominal discomfort; persistent dyspepsia/indigestion not alleviated by modern day medication; loss of appetite/quickly feeling full when eating; and unexplained back pain, often eased by sitting upright