Briony's Story
Kia ora, my name is Briony, and I am the founder of Pancreatic Cancer Aotearoa / New Zealand, otherwise known as PCANZ.
Here is my story so far...
As his only child, Dad and I had always been close, despite my parents separating when I was a toddler. Dad was the guy who always fed me whatever I asked for, took me on adventures, and let me stay up late. He was the 'good cop', and always spoilt his little girl.
And when I moved to New Zealand in my early twenties, Dad had no hesitation in making the long trip over every year, without fail. On one of those trips, we both experienced the tragic Christchurch Earthquakes of February 2011, an event which heavily affected us both, but especially Dad. He never quite got over the trauma of it.
In August 2018, we lost my Nan, his Mum at the grand old age of 97, and again, Dad wasn't able to cope well with this loss. I was able to travel back to the UK to stand and support my Dad during this time.
His health has been on the decline ever since, with the first big blow was him suffering a stroke on Christmas Day 2018. This was such a scary time for us, and I once again, was fortunate enough to be able to travel back to the UK to support him.
Initially, his recovery was good, but he never got back to 100%. He was suffering from a variety of symptoms, including sudden onset diabetes, stomach pain, loss of appetite, dramatic weightloss. He wasn't big on going to the doctor, but did go a few times and received a number of diagnoses such as IBS, kidney stones, and even tested for stomach cancer and prostate cancer, both which came back negative.
Fast forward to June 2019, Dad had a CT scan and was, devastatingly, diagnosed with Stage 4 Pancreatic Cancer, which has spread to his liver. It was a terminal diagnosis, and he was told he may have less than 2 months left.
And so, I faced the reality of having to head back to the UK for the third time in a year, leaving behind my partner, our cats, our house, and my job. It was horrible situation to be in, being my Dad's only next of kin, and living on the other side of the world, but I had to go and be with him. There was no doubt about that.
I travelled to the UK from Christchurch on Sunday 30th June 2019.
Walking into Dad’s house, I was very apprehensive, but nothing could have prepared me for seeing Dad the way he was. He was very thin when I was in the UK in February, but seeing him in July, sitting on the couch in the lounge, I can only describe him as emaciated - just skin and bone. Not only that, but his spirit had disappeared. This cancer was literally sapping the essence out of him.
The first 24 hours I spent with him were a rollercoaster of emotion - frightening, upsetting, confusing, frustrating, a sense of helplessness, but I also felt such a sense of love and adoration for him, which I have never experienced before. It is quite strange to see the first man in my life, my hero, the guy who also had such an adventurous spirit, reduced to a vulnerable, empty shell.
Over the next few days, I spent the time getting used to Dad's routine, figuring out his cocktail of meds, and trying to make a plan of 'what now?' Dad spent the majority of the day in bed, and then would get up around 2-3pm, come downstairs for a few hours to watch TV and then head back to bed around 10pm.
Pancreatic Cancer severely affects its sufferer’s appetites, meaning Dad only managed 1-2 mugs of Complan (liquid meal replacement) per day. He also had to take Creon supplements, which are digestive enzymes, to replace the ones his pancreas would normally produce. Trying to get him to drink more than a glass of water a day was also a challenge, and so he was very dehydrated, as well as malnourished.
Over the next 2 weeks, Dad deteriorated really quickly. He was spending more time in bed, and became so weak that he had a couple of falls out of bed, and when trying to get to the toilet. It was breaking me, seeing him so weak and vulnerable.
Eventually, I made a bed for him downstairs in the lounge, because he was no longer able to get up the stairs to his bedroom. From then on, I slept on the floor next to him, although I didn't get much sleep. I was so scared he was going to slip away in the middle of the night.
One morning, I woke Dad up for his meds, to find he had lost bladder and bowel control over night. That was when I realised I couldn't take care of him anymore, so I called the hospice and two nurses came out to assess him. Immediately they made a call and secured him a place in the local hospice. This was just over 3 weeks since I arrived, and just over 4 weeks since his diagnosis.
Being in hospice brought us both some relief - he was in great hands 24/7 and the staff there were just wonderful. It also gave me a bit of respite to catch up on sleep, do groceries and have a bit of 'me time'.
I would spend 4 hours every morning with Dad, then head out for 2 hours to run errands, then spent another 4-6 hours with him in the afternoon and evening, before driving back to his house for the night.
Dad could no longer swallow tablets due to dysphagia, and also had to have a thickening powder added to his drinks to prevent him from aspirating into his lungs. He had stopped eating completely by day 3 at hospice, so we were relying on him drinking as many fluids as possible.
I expressed my concerns about his not eating and possibly needing to go on IV fluids, but the doctor said, as this stage, his body doesn't want or need food anymore. As for the drip, it can cause more issues as it can build up in parts of his body due to him being bed bound. He also had a catheter fitted. Seeing the dark brown, grainy fluid in the catheter bag was disturbing, but I was told this was expected, and a sign that his organs were beginning to shut down.
At this stage, I was taken into a quiet room with the lead doctor, who very delicately told me that tests showed he likely had a matter of days left.
By now, Dad was not very responsive, but I would still read to him, watch TV with him, and listen to music.
On Friday 3rd August, I had spent the morning with him, and popped into town to run some errands, when I got a call from the doctor, advising me to come back, as Dad's breathing had changed. I hurried back and was there in 20 minutes.
I burst into tears as soon as I saw Dad, as he was a completely different colour from when I had been there in the morning - an awful grey complexion on his face, and the skin on his hands was mottled. I became very quickly aware of the change in his breathing too. He was exhibiting what I later learned to be called Cheynes-Stokes Respiration - very irregular breathing with a distinct rattling sound, often referred to as the death rattle.
I knew his time had come and so I put on his absolute favourite music and held his hand, reassuring him that he didn't need to worry about me, and that it was okay for him to go, and that his mum and Dad were waiting for him. One of the lovely nurses sat with me this whole time.
Dad took his final breath just before 4pm that day, an hour after I arrived back at the hospice. He was finally at peace.
***
I was incredibly lucky to have the incredible support of my partner, my family and my friends during this most difficult time of my life, but also found comfort, support and a sense of belonging in the various Facebook groups. There is something special about a group of people all going through a similar traumatic experience.
When I returned to Aotearoa / NZ in September 2019, I immediately sought out a local group, only to find that there didn't seem to be any specific pancreatic cancer support groups. There were groups for bowel cancer, breast cancer, prostate cancer and so on, plus there were generic cancer organisations, such as the Cancer Society, but I needed a group of people who understood and could empathise with the reality and the brutality of pancreatic cancer.
And so the seed was sown - I decided to create PCANZ, first with a Facebook Page and then a Private Facebook Group, and both have grown in members and followers, slowly but surely since then.