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Joe

Posted by: Joe 21 May 2019

Joe shares the story of her Dad, who was diagnosed with pancreatic cancer in 2016.

Joe and her Dad

I'm going to start my story from the end. I lost my Dad in May 2017 after a 14 month journey with pancreatic cancer. My amazing Dad donated his pancreas to research. This was a unique opportunity and gift towards the research into pancreatic cancer, and I hope that in the future this can be made more widely available. This is something that I will always be grateful for. 

 Being diagnosed

In March 2016, Dad woke up one morning to find that he had turned bright yellow, his skin and the whites of his eyes were luminous yellow. This came after a few weeks of not feeling quite right but not being able to say exactly what was wrong. 

Dad went straight to A&E that morning and the initial blood test showed that his bilirubin level was extremely high. The doctors thought this may be a virus. In the couple of weeks following, an ultrasound and a CT scan were performed. The consultant confirmed there was a blockage in the common bile duct, along with the high bilirubin level, he suspected pancreatic cancer.

A metal stent was fitted and this alleviated his symptoms. Dad had an endoscopic ultrasound and this showed that there was a small mass at the head of the pancreas. Dad’s diagnosis was a pancreatic adenocarcinoma, terminal, there was nothing they could do for him.

The district nurse scheduled Dad into a routine of visits, focusing on basic medical checks.

Making plans

Dad met with another consultant in May 2016, he was told that he should opt for the Whipple’s operation as his fitness level were so high. Dad declined this as there was no guarantee of extra time or a cure, he had already researched this prior and decided against it. He felt that quality over quantity was important now. He didn’t want to spend his time in and out of hospital, exposed to other illnesses, not feeling well enough to get out and about.

Dad wasn’t frightened by his terminal diagnosis, he quickly accepted it. He remained focused and pragmatic, jumped straight to planning and putting everything in order. Funeral arrangements were of the upmost importance. He wanted us to be part of this planning and didn’t want us to have to think about this when he was gone. Mum and I weren’t ready for this regimental process, it was an unreal situation and often felt like an out of body experience.

Quite quickly we were discussing funeral songs, visiting crematoriums, wake locations, confirming the guest list and even considered sampling sandwiches and menus – it was all too much. Brave faces were put on and feelings switched to numb mode. Looking back we were all at different stages of this terminal sentence. It was like watching a movie and not having a pause, rewind or stop button. It affected each of us differently, the pain of knowing he was going to die was our common thread. We respected that this was what Dad needed to do before he died, to put his life in order. After all, this was to be his final plan and who could stand in the way of that?

Managing Dad’s symptoms

Mum became Dad’s full time carer. He remained independent and this made decisions along his journey difficult to watch. Dad had led an active and healthy life, yoga, tai chi, meditation along with healthy eating. Strong, disciplined, didn’t drink very much, didn’t smoke, healthy diet, so how could he get terminal pancreatic cancer? Why are we here watching him die?

Mum created a spreadsheet, firstly this was to record that Dad had had his medication each day, then it became more about an indicator for when the pain was increasing, always resulting in the cancer taking hold and that next decline.

The months ahead found him struggling with his diet, being advised to eat high calorie, fatty foods, which went against his lifestyle and beliefs. He met with a fantastic dietitian, that respected his fitness and desire to remain healthy to the end. Balancing the amount of Creon (Pancreatic Enzyme Replacement Therapy) at every meal, all much to his frustration. Certain foods made him feel sick, sometimes it was just water that did that. This went on for a very long time. He suffered so much, the pain was intolerable and he tried so hard to hide it from us. Sickness, tiredness, pain and sweats. It was heartbreaking to watch my Dad suffer.

Dad’s mindset was not to take a tablet to ease the pain, he had always relied on meditation and yoga as part of his daily routine. This made the work of the medical team near on impossible, but they never gave up, eventually getting the base pain under control and Dad driving the medication for the breakthrough pain. We were so lucky to have had the Hospice at Home Team supporting us all. They were angels without wings, always there.

I remember heading over to take them out one morning, to our favourite coffee shop. Dad was struggling with the pain and generally not feeling well, he decided to do 20 minutes of yoga, well, I couldn’t believe my eyes. After the yoga session he leapt down the stairs, missing two steps due to his long legs and new found energy. It was easy to forget that he had pancreatic cancer. It lasted for us to enjoy a cup of coffee, only to be reminded of his illness once the crippling pain came back.

Yoga gave my Dad an opportunity to not just be a cancer patient and he called on it when times were tough, but like anything amazing, you always come down with a bump. That felt like our punishment for losing ourselves in happy conversation. We had many trips out together, the busier the place the better, somehow the bustle and noise of other people made it easier to talk about dying and how life was going to be without him.

In September, Dad visited St Michael’s Hospice for a short time. This was some respite for my Mum and the opportunity for the medical team to introduce a pain plan for Dad. However this still wasn’t an easy task.

In October, Dad had his stent replaced with a plastic stent, as the tumour had grown extensively and the metal stent could not be removed. The procedure was tough for Dad, it took him a few days to recover from this. We were thankful for another few months, we couldn’t believe he had had eight months with the first as we were advised they last usually around 3 months. Dad has always amazed us and was not text book. His cancer journey was unique and one he owned.

In January 2017, after the results of a CT scan for increasing abdominal pain, Dad was considered for the coeliac plexus block (a nerve block). Though more urgently the results showed the severe narrowing of the portal vein, so Dad had the plastic stent replaced. It took Dad a little longer to recover from the procedure this time. We knew this was the last time the stent would be changed, so the journey was to take a different direction – no more options now. It became very real at this point, how long would he have? Time was now against us all. The clock started ticking.

My friend in the dark hours was Google. Different scenarios, what if’s, cures, how could I fix this? Empty answers equaled difficult days. Some of the information on the net was quite graphic about how the end could be for someone with this cancer. This frightened me.

Getting support

I came across the Pancreatic Cancer UK helpline offering a chat with a nurse specialising in pancreatic cancer. I wrote a list of questions ahead of my telephone call. The nurse was so helpful, with the information I shared about Dad she gave me the confidence to know what to do if/when we reached any of these possible endings. This enabled Mum and I to take the necessary steps should any of this happen. Along with the support from the Hospice at Home Team we had everything covered as much as we could.

In March 2017, Dad started to spend more time in bed. We would take the moments when they came, sometimes grabbing a coffee at our favourite place, though he would spend the rest of the day in bed. Dad visited the hospice again for a short stay. I didn’t know at the time that he was at end of life then and they were closely monitoring him now.

Dad came home and it was decided that this is where he was to spend his last days. We spent our time together as a family, reminiscing about our lives, family members coming to see Dad, thinking it maybe the last time every time. I prayed that one day we would get one more outing together, but that never came. We saw his energy be taken away, his appetite decrease, he became insular, less interested in the family and the outside world. The hospice nurse visits became very regular, quiet conversations about how long have we got together. In the midst of all this I bought a puppy, a chance meeting and a second dog to my family, it gave us all another focus, a real comfort. Especially for my dad, he loved Peanut, the new baby of the family, often cuddling up together in bed.

in May 2017, the conversations became less, Dad slept more and more. He had no appetite. With the introduction of the syringe drivers, this ensured that dad was comfortable and pain free, he started to slip away from us. Without the Hospice at Home team’s support I know the story would have been a very different one, one of which wouldn’t have left us with our special memories, just all the pain. In the last week, we all relied on the specialist care from the team and knew the time drew closer. Dad died peacefully at home, with my mum and I at his side. He was finally at peace, no more pain. I am grateful for being part of my Dad’s journey.

This is for you, my brave and selfless Dad x

May 2019

Read more about caring for someone at the end of life

Read more about managing the symptoms of pancreatic cancer