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Grainne's story

Grainne O’Neill, 30 from Armagh, has a Foundation and Honours Degree in Event Management and has subsequently trained as a Life and Business Coach. As well as being a tireless campaigner and fundraiser for pancreatic cancer, Grainne has also gone into local politics as an SDLP Councillor

Grainne (then 21), is one of a number of children and young people who have lost a parent to pancreatic cancer taking part in NIPANC’s 2022 #TimeMatters Campaign. Its aim, to raise public awareness about pancreatic cancer, the need to understand the symptoms and be persistent in seeking early diagnosis and treatment. They are telling their stories so other families don’t have to face the trauma they have.

Grainne lost her mummy Anne to pancreatic cancer in January 2014. Grainne was just 21 years old, her mummy 54 and the emotion and grief is still raw.

It makes family get-togethers and special birthdays and occasions something to avoid, she says, because it is a permanent reminder mummy is not there.

Grainne from Armagh, recently celebrated her 30th birthday. She 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.

From left to right: Grainne, Tom, Sinead, Anne and Fergal

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.

“I’ve just celebrated my 30th birthday and I couldn’t decide whether to get everyone together or not because it still hurts. Even simple things like having a family meal hurts. I still feel it massively when we are all together around the table and mummy isn’t there.”

The O’Neill family are tight knit, Grainne growing up in Armagh City with an older brother and sister. “I’m the baby of the family. My dad Tom O’Neill was a bookmaker. When we were born my mum gave up her job to take care of us.”

“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.

“She had an ultrasound scan and they thought the pain was coming from the gall bladder. An MRI scan showed that the gallbladder was fine. Her appetite started to drop and she started to lose weight, almost a stone and then she started to get jaundiced.

“I remember it because it was around the time of the 12th of July holidays. 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. The doctors knew I was coming home and didn’t put any restrictions on me being able to see mummy.

“It was my turn to hold it together. I was told to be prepared because she was quite yellow. Looking back on that time, the day I left for America was the day I left behind a normal life. Any time I go away now, I have triggers.

“My mum lost her mum at 22. When I walked into the hospital that day, she knew the life I was going to have face without her. She knew how hard it was going to be. People think it’s all about Mother’s Day but it’s the everyday things that really get you. Little things I want to tell her, or getting a hug from her when I came home. Other people don’t always get to experience that type of love.

“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. I kept thinking, we don’t have time here. Why are these people taking forever.”

“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.

“Mummy ran her own coffee morning which raised 3k. When I turned 21 I did a run which also raised 3k. I had also found out about a woman in England who was mounting a petition about Pancreatic Cancer and needed more signatures so I became heavily involved in that.

“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. She told me she would be with me wherever I went and if I wanted to go back to America again, to do so and how sorry again she was for me having to come home.

“She went for a final scan around the time of my exams in January. The news wasn’t great the pancreatic cancer had spread to her liver, lungs and then a bone in her back.

“I remember the day I helped her to get dressed to go for a blood transfusion. She was weak and I was trying to help her into her trousers but she couldn’t lift her legs. I was thinking, I’m the child but here I am dressing my mum who was only 54. After that she technically never got back up again.

“My mum died the following Thursday. After that scan the cancer really took over. She died on January 30th 2014, seven months after she became sick. We were with her in hospital when she died. I remember dad saying to me, Grainne this is the beginning of the end. Don’t be hopeful your mum is coming out of this. She’s not going to get better.

“She died on the Thursday night, very peacefully with us all around her. It was a very difficult time but I had lots of family support and people were do kind. I really feel I’ve lived two lives, one with mummy in it and the other with her gone.

“I was fundraising before mummy died but I continued to do it to keep her memory alive. I threw myself into getting the petition signed. I went into overdrive. Before I wouldn’t do public speaking but I rang the Frank Mitchell Show on U105.

I told them my mum had died and I needed to get these signatures. That led to more interviews. I really did go on the rampage for about two to three weeks and ended up on UTV Live. Everyone in Armagh got behind me and my family.

“I did everything I could to keep mummy’s memory alive because I wanted to share how special she was. I set up a fund Fight for Annie and it raised over 10k. I’ve had people out in purple t-shirts for balloon releases and did a trek to the Great Wall of China and have run gala balls. We’ve raised a total of about 60k so far.

“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 more about the symptoms of pancreatic cancer HERE


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