When Grainne O'Neill was just 21-years-old, she lost her mum to pancreatic cancer.
The Co Armagh woman is still feeling that raw grief nine years later. Anne O'Neill was diagnosed with the disease after feeling unwell and developing a pain in her side.
Seven months after she became sick, Anne died surrounded by her loving family in hospital. Now her daughter is doing all in her power to raise awareness of the symptoms and importance of early diagnosis.
READ MORE: Belfast man dies after showing cancer symptoms on daughter's 16th birthday
Grainne said: "The reality is, mummy and I have both lost out on the important milestones in my life. She never got to see me graduate, will never know when I get engaged, help pick my wedding dress or be there on the day I get married. The kids I may have will not get to know their granny.
"I feel like I have been robbed of another 40 years of being with her. She died at 54. I thought I would have her forever. On the one hand I feel I have really lost but on the other I am so grateful for having had her in my life for 21 years. She lived for her kids.
"Those 21 years to me are worth their weight in gold. Some people don’t have a great relationship with their parents. My mum was the best edition of a mummy and I’m so lucky to have had 21-years with her. The fact she will never see me get married or be a granny to my kids really hurts a lot."
The O’Neill family are tight- knit, Grainne growing up in Armagh City with an older brother and sister. Anne gave up her job to take care of her children.
“I’m the baby of the family," Grainne added.
"My dad Tom O’Neill was a bookmaker. At the end of May 2014, I was finishing up at University for the summer and asked mummy to come up and help me pack up. She said she felt unwell, like she had flu and told me my dad would come up to help me instead.
"A few days later, I was sitting beside her on the sofa watching TV and she told me not to bang into her because she was so sore. That’s the first I knew something was wrong. That summer, I was fulfilling a dream of visiting America and I said to mummy, can you go and get that checked out before I go away. They said it was a kidney infection and she got some antibiotics for it. I said goodbye to mummy and daddy at Dublin airport.
"Then she got a pain in her right side which is a symptom of pancreatic cancer. As mummy and daddy were supposed to be relocating to Spain at the time, having brought us all up, she went to get the pain checked out in early June. The pain persisted and she went for further testing because my parents were due to be going away on a one-way ticket on July 16th."
Anne had an ultra sound scan as it was thought the pain was coming from the gall bladder - the scan however was fine.
Her appetite then started to drop and she started to lose weight and then she started to get jaundiced.
“I remember it because it was around the time of the 12th of July holidays," Grainne continued.
"It was then that a doctor came in to her when she was on her own and told her she had cancer and that it could be pancreatic. To this day my dad remembers exactly where he was when he got the call from my mum.
“I still don’t think she should have been told this on her own because that left her having to be strong for my dad. The pressure it would have put on her knowing she would have to hold it together to protect him. I know that would be hard for her. By this stage I had been in America for six weeks and was getting dribs and drabs of information over that holiday weekend mum said, I think you need to come home.
"They told me she needed her gall bladder removed to prevent me from stressing out too much when I travelled but I always knew there was something more to the story. I kept grilling her but she said they had to put a stent in. There was definitely a lot of emotion. mum felt so guilty about bringing me back from America.
"On July 13th , I was met by my daddy and brother at Dublin airport. When we got home, daddy called me into the sitting room and told me mummy had cancer. When they told me it was pancreatic cancer, I knew it was a really bad one to get. I knew subconsciously it didn’t have a good survival rate.
"I remember her looking very yellow with jaundice. The bile duct had been blocked but it was the 12th of July holidays and because there was no surgeon around to do an operation, she was sent home. In the end she had to go to Limavady to have the surgery. A biopsy was done on the same day to determine what stage she was at and it came back inconclusive.
"With pancreatic cancer time is definitely not on your side so it is frustrating when tests come back inconclusive. It wasn’t until the end of August and after I had been home for a good month that she was seen.
"We met the oncologist at the beginning of September but chemo didn’t start until the end. By that stage she had lost so much weight and was told she had four to six months to live and that the chemo would be given as palliative care. At first, she didn’t want chemo but I asked her to try it out.
"By that time, it was the beginning of October when I started doing my degree in events. My tutors were brilliant and allowed me to run an event to raise money for pancreatic cancer. That’s when we started doing what we could do to raise money and awareness around the illness.
"Mum was getting very frail when it came to Christmas. We were living for Christmas and had a really lovely time. The New Year was different because we knew this was going to be our last year with her. But she was still being really positive saying, 'I’m going to be a miracle story'. But she had Stage 4 pancreatic cancer. Each of us went to her room to have that last conversation with her."
Anne's cancer had spread to her liver, lungs and then to a bone in her back. She died on January 30, 2014, surrounded by her family.
Since then, Grainne has become a tireless campaigner to raise awareness about pancreatic cancer. Today she is adding her voice to NIPANC's #TimeMatters campaign, along with other children and young people to encourage the public to learn about the symptoms of the disease and be persistent in seeking early diagnosis and treatment.
She is telling her story so other families don’t have to go through the trauma hers has.
“Time really does matter when it comes to pancreatic cancer. Early diagnosis is the most important thing. You don’t know if you will have six months or three years. It’s the only chance you have. pancreatic cancer doesn’t respond to chemo like other cancers. It’s badly positioned behind the stomach and the liver.
“It can be so quiet and easily misdiagnosed. Every minute really does count because options aren’t there and time is so precious because of your loved one. My heart shattered when I heard mummy’s cancer was pancreatic.
"It’s also a cancer that’s not glamorous or easy to market. The slogan I have developed for pancreatic cancer is – The Purple Sheep of Cancer – Everyone knows what the colour pink means so for me, the colour of pancreatic cancer is purple. We want to establish that. The purple sheep reference is because purple sheep, like black sheep is the forgotten one."
READ NEXT:
- NI doctor acted dishonestly over death of nine-year-old girl, tribunal rules
- Ardoyne community worker on why local GP surgery needs to stay
- 'I was fainting in pain': NI woman on ulcerative colitis diagnosis
- Councillor calls for GP out-of-hours to reopen for 'concerned young mums'
For all the latest news, visit the Belfast Live homepage here. To sign up to our FREE newsletters, see here.
