My Story is about My sister Viola Irving-Powell

This event took place from 26 Jan 2013 to 29 Jan 2020

The Discovery

My sister Vi had been having back pain, abdominal pain and weight loss. She was being treated for these symptoms but misdiagnosed as to what was causing them. On June 26, 2013 the pain and weight loss got so severe that she was taken to the hospital . It was at that time she was told that she had pancreatic cancer. Our lives were changed forever.

This is My Story

I lost my sister on June 7, 2013, after only four short months of battling pancreatic cancer. She was schedule to participate in her first PurpleStride on June 15, 2015, but instead we were having her funeral on this date. How could this have happened? How could I be burying my 53 year old sister and best friend. I promised her a month earlier that if she did not survive the disease I would continue to support PanCAN and the cause. The day after burying my sister I remember asking myself , “What do I do now”? The answer came to me quickly…You keep fighting so that others don’t have to experience what you are experiencing. It is through this fight that I have met some amazing individuals who are(were) in the fight with me. One was my brave friend Adam Deal who instantly became my virtual brother and we fought together until he finished (not lost) his battle in December 2020 and my dear friend Sang Watts who finished her fight in May 2021. They fought with the bravery and courage of a fearless warrior. It is hard when you do get the outcome or healing that you pray and fight for. It knocks you down hard, but you get back up and remember you are now in charge of keeping these individuals in the fight and their memories alive. That is what I owe them. It is the least I can give to them. When I leave this earth I pray that part of my legacy will be that I helped change the outcome of this disease. Year from now history will pay homage to all those who fought to change the story a face of pancreatic cancer!

The Impact of Time

We had very little time from diagnosis to death with my sister. She was diagnosed on January 26, 2013 and died on June 7, 2013 which was my brother’s birthday. I wish I was more educated on the signs and symptoms of pancreatic cancer before my sister was diagnosed . I think about daily how educated I am on the disease and the resources available through PanCAN. Not a day goes by that I don’ t regret not taking the “TIME” to be more aware about this disease. I had heard of several high profile people and even a colleague being diagnosed. It always gave me a pause and their stories captured my attention, but I didn’t follow my gut instinct to learn more. I think about that all the time, but this this is my first time writing it or even admitting my feelings, regret and guilt. How I wish I had followed my instinct to read and learn more. Time is the more precious thing we have . Always wishing for more, but are we careful not to waste or misuse what we have? Since unexpectedly losing my sister and mother, I use every second of my time to make a difference in the work. It is our most valuable commodity.

My Story is about Steve Kelly

This event took place from 01 Jun 2013 to 15 Apr 2015

The Discovery

Stomach pain that spread to the back

This is My Story

As an avid runner, “time” to Steve Kelly usually centered on achieving a personal best. But pancreatic cancer was a harsh awakening that time is something much more precious.
Steve was preparing for the annual Broad Street Run, a 10-miler through the streets of Philadelphia, when he first began experiencing stomach pain. A journalist at the Philadelphia Inquirer, he chalked it up to stress and took antacid tablets to ease the discomfort. But when the pain migrated to his back, he saw his physician. A series of tests, first an ultrasound, then an MRI, a CT scan and finally a biopsy, confirmed the diagnosis: stage 4 pancreatic cancer that had spread to his liver. Suddenly, “time” took on a whole new meaning.
Steve was just 53, fit and didn’t have any of the traditional risk factors for pancreatic cancer. He sought aggressive treatment, participating in two clinical trials — first a new chemotherapy combo and then an immunotherapy treatment designed to activate the body’s own immune system to fight the growing cancer cells. The treatments were difficult and often-times debilitating with side effects. But they also yielded some promising results. Steve was able to enjoy what his wife Kerry calls “a six-month gift to our family” in which his tumor growth stalled and he was pain-free. In his final year, Steve white-water rafted and ziplined with his family in Costa Rica, ran a 5K with his daughter and delivered an emotional survivor speech at New Jersey’s PurpleStride event.
Steve Kelly died in April 2015, 22 months after his diagnosis. He has inspired family and friends to create Kelly’s Heroes, a nonprofit that established the Steve Kelly Fund for Pancreatic Research at Johns Hopkins. And Steve — a husband, father and clinical trial hero — continues to give future pancreatic cancer patients the precious gift of hope — and time.

My Story is about My Dad, Brian Richard Jones

This event took place from 31 Jan 2012 to 26 May 2012

The Discovery

Pancreatic Cancer was discovered after my Dad’s continual visit to a Doctor with 3 symptoms:

1. Weight Loss
2. Back Pain
3. Heart Burn

Further tests would reveal a mass on his Pancreas.

Attempted Whipple surgery was conducted on the 5th February – to no avail – the mass had wrapped around his portal vein – he was told to “get his affairs in order”

17 biopsies, countless blood tests, testing of ascites fluid in his stomach – could not truly diagnosis him – Yet the Doctor’s 99% opinion it was pancreatic cancer was evident on his death certificate.

This is My Story

My life changed forever on the 31st January 2012.

My Dad visited me and sat me down on the lounge and uttered the words “I have Pancreatic Cancer”

What the hell was Pancreatic Cancer I thought to myself? I hit Dr Google and I knew my Dad had no chance – in 2012 a mere 5% survived.

Knowing he was so fit, I thought he stood a chance

“Why doesn’t anyone know about this cancer?” Was a continual thought in my mind

I would soon learn that his failed Whipple surgery , inconclusive biopsies and countless blood test should have flagged us all to his impending death His ascites riddled stomach resembled like a keg – he looked 9 months pregnant. Nurses would hydrate Dad via a drip, his stomach would grow larger and the 2 taps strategically placed on either side of his stomach, drained this fluid – only to start the cycle over and over again.

I wish I didn’t demand my Dad into Palliative Care to ensure his last days were as dignified as him, as I wish i had more TIME with him.

I wish I knew that my Dad would be gone in just 120 days – so I could tell him I loved him one more time.

My aim now is to ensure Pancreatic Cancer Matters too in his memory

Thank you for your TIME

The Impact of Time

Time is SOOOOO precious – something we never had with our Dad.

120 days is all it took to take my Dad.

Do I have regrets? Yes – if only I had pushed Doctors more – If only I had demanded more testing. If only specialist appointments were expedited due to a Pancreatic Cancer diagnosis – all these appointments take TIME

TIME is all my Father deserved

Just one more birthday
Just one more Fathers Day
Just one more Christmas
Just one more I LOVE YOU

My Story is about My dad, Stuart Hobson

This event took place from 20 Aug 2018 to 01 Sep 2018

The Discovery

On August the 20th 2018 my dad was diagnosed with pancreatic cancer. He had only really been experiencing symptoms from July time. Unfortunately, he passed away 12 days after his diagnosis. Obviously that was difficult enough, just going through all that, but he actually passed away the day that my sister was due to get married. Because it was so aggressive, we didn’t know until the Thursday that it was progressing more quickly than the doctor’s thought. It was the day before that we made the decision to postpone my sister’s wedding.

It wasn’t until July time that he noticed his urine had gone really dark. He went to the doctor, and I have to say his GP was very good, and straight away said that they’d do a blood test. It came back that there was a problem with Dad’s liver enzymes. During that time he started to get a bit of back pain, and he’d also been trying to lose weight for my sister’s wedding but he’d kind of stopped trying and noticed that that his weight was still going down. So he had another blood test just to check for an error and it came back exactly the same. The GP requested a CT scan, however, when my dad got to the hospital, he had an ultrasound instead. They couldn’t see any signs of cancer.
My dad then went back to his GP still feeling the same. He said to my Dad that he hadn’t seen the results of the scan but if you’re feeling OK by all means go on holiday, as my parents had planned to do. It was during the holiday that he really started to take a turn for the worse. He started to struggle to eat, started to get jaundice. He didn’t want to ruin the holiday. So when they go home after two weeks, he went straight to A&E.
It was the CT and endoscopy that confirmed that he’d got pancreatic cancer. They were also concerned it had also spread to his liver, which is why he was experiencing the jaundice. He was in hospital for a few days at that point and he was really struggling with the jaundice: he had really severe nausea, and all the symptoms that you get with jaundice. The hospital weren’t very good at managing those symptoms. When he was discharged, he was originally being given no medication at all. He couldn’t eat, he was constantly retching. So we spoke to them about the symptoms that he’d got and they gave us some medication for it, but we had to be quite pushy to get that really.
During the time he was at home, he just started to get worse. The jaundice was getting much worse, the nausea was getting really bad and he was pretty much eating nothing, not even drinking anything. So we went to a pharmacist and to an out of hours doctors, and it was through those that we were told that, the medication that my dad has been given is what you and I would get if we had a bit of travel sickness or were a bit constipated. These are the tablets you need and you can only get these tablets from a consultant.

The following week we saw the consultant to get the results of the biopsy. He was shocked with how much Dad had deteriorated and was immediately readmitted. Dad then got those tablets and instantly the nausea was gone. If he’d been given those in the first place, he would’ve had a week at home where, he probably would have been quite comfortable. that’s pretty much when I think he knew what was happening and that there was no fight, he knew what the outcome was going to be. It was the day after that the consultants told us that he will be going into hospice. That was on the Thursday and he passed away on the Saturday. He went from him not being able to hold a cup of tea to not being well enough to talk.

This is My Story

I just want people to know what happened to my dad and that this happens to normal people, this happens to fit and healthy people. It’s helped me. In terms of the grieving, it’s been quite a physical process for me. I’m still going through all that, and It’s really hard, but I find that channelling my energy into something positive, to remember my dad as well, It helps me as well. Don’t get me wrong, I have really dark days, hopefully it helps other people see that there is life after something like this. Your life’s not over; you kind of think that to start with but there’s positive things you can do from it.

The Impact of Time

When I look back, it almost seems quite surreal because it was, it was just so, so quick. Hour by hour you could see a change in him and I think at the time it’s hard to kind of get your head around what’s happening… I remember talking to different doctors and different consultants and there’s certain parts of the conversation that I don’t remember having, I don’t remember things being said and I think my brain just kind of blocked those things out. Time was lost in my dads illness. He basically had no time and we watched him rapidity deteriorate.
What was important for us as a family was being there with him, being strong for him and trying to keep things as normal we could for him. It was by no means easy. We’d leave the room and we’d be in absolute pieces but you just do what you need to do at that moment in time. It was more afterwards that you know when the bereavement and grieving really kicks in. That’s when it’s hard.
We’ll never really know this, but had he not gone on holiday for those two weeks it probably would’ve been picked up, maybe a couple weeks earlier. We needed those extra two weeks. Although I don’t think he would have survived maybe he could’ve had a stent and maybe he would have had a bit longer. Those days, those hours, they matter.

My Story is about Me

The Discovery

It was discovered while on holiday celebrating being in remission from breast cancer,
one of my daughters said “Mum your skin is yellow”. I then knew that something was really wrong. I used to be a nurse, so I was hoping for a blocked bile duct caused by a gallstone because I knew the alternative was pancreatic cancer and that was a death sentence.

This is My Story

i don’t think my story is that unique, but if sharing it just helps one person going forward then that makes me really happy.

The Impact of Time

My outlook on time has changed dramatically since being diagnosed. I try to make everyday count in some way. I also try to make as many memories as I can with the people I love. I try to use my time helping as many people as I can. Initially, I was very lucky and was diagnosed at stage 2B. Which enabled me to have a Whipples Procedure and 6 months of Chemotherapy, then nearly 2 years of remission before my cancer came back stage 4.

Time is the biggest gift you can give a person suffering from cancer, in my opinion. It enables you to not only get practical things sorted like your will, finances etc but it also allows you to spend time with the people you love.