This is Eric's story written by his daughter, Erin, with help from her mum, and Eric's wife, Michelle.
“Dad was a skilled mechanic and tiler. Growing up there was always cars in the driveway and new projects. We came home once; he’d decided we didn’t need a hallway and knocked it down! He never did a job by halves.
Dad was diagnosed with fibromyalgia (a disease that affects muscle and soft tissue). He couldn’t get the pain under control, and this was when he started drinking. He started getting intense abdominal pain. He described the pain as a red-hot poker in his stomach. Even though I was young, I have vivid memories of him being in pain. He’d go to A&E but was always sent home. People assumed it was his liver because of his drinking.
He was eventually referred to a gastroenterologist. The gastroenterologist diagnosed dad with chronic pancreatitis with acute attacks. Mum scoured the internet for information or support but found very little. It was difficult for her, to suddenly be looking after your husband. My dad’s illness didn’t just affect him, it affected our whole family. Mum is an incredible woman. I don’t know how she did it, now I’ve had chance to reflect as an adult. She kept our family afloat.
The school that my brother, Brad, and I attended struggled to understand that dad’s illness wasn’t life-threatening then, but it was disruptive. For us it was just a part of who we were but for others it must have been odd.
Dad was eventually referred to another specialist and had surgery. Before his surgery, the consultant told him to stop drinking for a year. And he did just that. He was finally able to have his surgery. He had his spleen, gallbladder and 70% of his pancreas removed. For 6 months our lives were normal. We didn’t do anything particularly special, but it was nice for dad to be at home with us, not in and out of A&E. But eventually dad’s pain started again. He was in so much pain and lost a shocking amount of weight.
Dad was also left with neuropathy so he couldn’t walk. He had bladder problems so had a catheter. He was also left with diabetes which was so unpredictable.
The next three years were difficult. My mum had to leave her job. Carers were coming into the house. Our living room had a hospital bed in it. It was all hands-on deck. Brad and I were cooking for the family, nurses were teaching us how to change our dad’s dressings and empty his catheter. We just cracked on with it. It became our normal.
Dad was fine, and then he had a fall. We all remember it the same way. Dad was in a wheelchair, and he’d lost so much weight. The man he was and the man he became were two very different people. I was only 12 but knew how unwell he was. Our dad before could take us to the park to play cricket, but now he couldn’t even leave his bed.
One day, we went to the shops and dad was fine. But the next morning, we called an ambulance as he stopped breathing. The paramedics managed to restart his heart and in hospital, the whole family surrounded him. We shared jokes and stories about dad, and we said our goodbye to him as he passed away. Dad was one of seven children; the room was full of people who loved him.
There’s never a day that goes by that we don’t think about dad. Not a single day that he doesn’t cross our minds. Things are different now; Brad is getting married next year, and I’ve been to university. I don’t think grief ever goes away, but it changes over time. Dad is always around.
After dad died, mum became a counsellor. She’s doing things now she couldn’t when looking after dad. She’s keen to not let people forget him. We love talking about him. When people die, they shouldn’t be forgotten, and even when people were unwell, they were more than just their illness.
We want to share dad’s story to raise awareness. People don’t tend to know about pancreatitis or the impact it can have. Mum and I say that dad should have been referred to a specialist sooner. We want people to keep pushing if they know something is wrong, don’t take no for an answer. If this story helps just one family get the support they need, I think dad would be happy with that.”
There is no effective treatment for pancreatitis. There is no cure.
Guts UK is dedicated to finding an effective treatment, a cure for this misunderstood and underfunded condition. We are building a community affected by pancreatitis, comforted in knowing they’re not alone.