Derek’s Story
This is Derek’s story written by his daughter, Donna, with help from his other daughters, Judith and Emily and his wife, Denise.
Dad was fiercely competitive. Growing up he’d never let us win. We’d have 7-hour long monopoly tournaments. It was a family tradition that everyone would play a game of squash against him. No one was ever able to beat him, even when he was unwell.
Dad was a workaholic; he was the definition of the word. He was crucial in building a small company and put his heart and soul into doing so. This meant his health wasn’t a priority. Dad had type 2 diabetes and it’s fair to say it wasn’t managed well. He enjoyed life too much to give up any of the good bits. When he first began to experience severe abdominal pain in 2010, he fought through it. Dad was never one for going the doctors. He broke his foot playing football, but he refused to get an X-ray until five weeks later.
Eventually the pain became too much, and he went to see the GP. It turned out he had gallstones, and it was decided he would need his gallbladder out. This was the beginning of Dad’s journey into the unknown world of pancreatitis.
By 2011, Dad was half the man he was. He had dropped around 8-9 stone, was in constant pain and had no energy. He went from being such a happy, jokey, and cheery person to someone who could barely manage to get down the stairs.
In 2012, Dad eventually had his gallbladder removed. Even after his gallbladder removal he was still in so much pain and was given a diagnosis of acute pancreatitis. Routine scans found that he had a pancreatic cyst that was 30cm long! Before Christmas 2012, the cyst was drained to try to alleviate the symptoms. He had renamed his pancreas and its associated cyst “Patricia”. We could see daily how big and angry Patricia was, despite being drained, she (the pseudocyst) continued to increase in size.
Between 2011 and 2013, Dad was in and out of hospital. This time was difficult for dad and us, when he would go in, he was always asked the same question, “Big drinker are you?”. We felt like he was being treated like a second-rate patient. His scans and appointments were constantly cancelled and rescheduled. Early 2013 Dad had a surgery to try to remove the cyst. Unfortunately, the cyst was so big and attached to the pancreas, that it couldn’t be removed.
In September 2013, Dad finally saw a consultant and his recent scan had shown that the pseudocyst was now massive. We could even see it through his clothing. Finally, it was being taken more seriously.
On September 23rd, Dad collapsed at home and an ambulance was called. He was vomiting up blood and couldn’t move. He was rushed to hospital and given a blood transfusion, plus antibiotics to treat a possible infection. Dad started to feel better and was admitted for overnight observation. We left him laughing and joking with the nurses.
At 3am the hospital called. Dad’s heart had stopped, but he was still hanging on. We rushed back to the hospital. He was taken for a scan and admitted to ITC. His pseudocyst had ruptured and torn through his pancreatic artery. He was bleeding internally. He was one of the first people in the UK to have a balloon inserted into his oesophagus to try to stem the bleed, so he was stable enough for surgery. Over the next 12 hours Dad had endless amounts of blood and needed oxygen too. It was a strange day. There was lots back and forth. I also felt our case wasn’t handled very sensitively. A group of medical students were around Dad’s bed chatting about a night out. My sister asked them to leave and not to be so insensitive. We never received an apology.
The consultant decided that there was nothing more that could be done for Dad. He was heavily sedated to allow him to pass peacefully. At 4pm that afternoon, our Dad passed away. Pancreatitis had finally taken him from us.
Six weeks before Dad passed away, I got married. He was so poorly the day of, but he managed to walk me down the aisle. You could see Patricia through his suit though. I treasure this memory. It upsets me though that Dad never got to see my wedding or honeymoon pictures.
One of my Dad’s mottos, that sticks with me to this day was, “Knowledge is power.” There is so little knowledge and funding into pancreatitis. Without this we cannot have power over this hideous, debilitating and life-changing disease. I hope dad’s story can inspire people to live each day to the full and to appreciate the severity of pancreatitis. This is one of the reasons why our family has supported Guts UK in Dad’s memory. We collected donations at his funeral and in September, I ran 70 miles and didn’t drink alcohol for the whole month too. Maybe one day there will be a cure, or at the very least a better understanding of the condition.
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.
