My story is about John Wright

This event took place from 09 Aug 1988 to 24 Feb 2012

The Discovery

My husband developed Pancreatitis in September 2010, which was when I feel his sickness started but his official diagnosis came in December 2010 when he started to turn yellow and felt very ill. He went to the doctors and they did a CT scan and found a blockage on his bile duct. He went in to have a stent put in on 21st December 2010, which was when we got the diagnosis. Stage 4 Pancreatic Cancer with secondary on his liver. 3 days before his 50th Birthday.

This is My Story

Our story was my husbands cancer was detected in the very late stage of his illness, so when we went to the Oncologist at the beginning of January 2011 he had 3 treatment options available to him, but we was also told his was terminal at that appointment, I wanted to know a timeframe but my husband didn’t so we didn’t ask anymore.

He started his first treatment a week later and things were starting to look positive after a few months, his cancer markers were coming down and then they started to increase again, which was when the first treatment stopped working and we went onto the second one a couple of weeks later, that one lasted a couple of months as well until we went onto the 3rd treatment option which was successful for Breast Cancer but only trialed on Pancreatic Cancer.

We thought we was going to loose him in July 2011 because he became so ill but he had such a fighting spirit that he kept fighting until his death in February 2012.

I became his carer, nurse, wife all at the same time but I wouldn’t have done it any differently.

We were so blessed because we actually had 14 months with him through this illness. He died with just me beside him, which I knew was exactly how he wanted it to be. We have 2 beautiful children together so he still lives on through them.

Found out after he passed away they would have given him 3 to 6 months to live. So was so grateful we got as long as we did have him here with us.

The Impact of Time

We had a love story for 24 years, we have 2 beautiful children and now have a beautiful granddaughter who was born last year. We made so many beautiful memories together that I will always cherish and remember. Always take photos of everything because one day that might be all you have is your memories.

Our daughter married and had the exact same venue we celebrated our wedding at 20 years earlier, which was a beautiful tribute to his memory.

We all still miss him everyday and I am writing my story about our lives together hopefully to help other people cope with grief, when it is published.

I also donate 10% of my profit from my business to Garvan Institute for Pancreatic Cancer Research.

My Story is about My mother

This event took place from 26 Mar 2013 to 03 Aug 2014

The Discovery

In March 2013, my mum was diagnosed with pancreatic cancer. In hindsight, we believe she was exhibiting symptoms for 12 to 18 months prior to diagnosis. In the leadup to her diagnosis, her sugars were fluctuating and she lost her appetite. She was also having stomach pains and back pains. As she was insulin resistant, she was already under the care of an endocrinologist, who sent her to a gastroenterologist for further testing.
Originally, mum was believed to be a candidate for surgery. But upon further investigation, doctors found that the tumour was wrapped around the portal vein. Chemotherapy was recommended in the hopes that the tumour would shrink.
Mum ended up not being able to have the whipple. In total, she had 13 rounds of chemotherapy, 10 intensive days of radiation, several attempts to insert a stent to fix a blocked bile duct and multiple drains of excess fluid from her abdomen.

This is My Story

After mum passed away, my family and I created #PurpleOurWorld – a social media movement dedicated to raising awareness of pancreatic cancer. We are so proud to work alongside our pancreatic cancer community in Australia – Garvan Institute of Medical Research, GI Cancer Institute, Pancare Foundation and Pankind – and to be an inaugural member of the World Pancreatic Cancer Coalition. We have made friends for life (only those who fully understand the devastation of pancreatic cancer can truly empathise with what we’ve been through) and we honestly feel like we are making a difference.

The Impact of Time

Five months after my mum was diagnosed, my now-husband proposed to me. It was a beautiful time for us as a family, but throughout the wedding planning process, there was a very real possibility that my mum wouldn’t make it to walk me down the aisle. In fact, at one stage, there was talk about bringing forward the wedding. But mum continued her treatment and continued to live her best life, as much as she could. She organised my engagement party, and came with me to every appointment with my dress-maker, the decorator and the caterers. She sat at the dining table, lovingly dictating what songs the band was allowed to play and what they weren’t. She even managed to come to choose my bridesmaids dresses with me and the girls. In between these appointments, we went wig shopping, I drove her to the hospital to get her chemo bag removed, I spent time with her in the emergency department when she experienced symptoms of jaundice. It was a time of true juxtapositions.

I’ll never forget, when she did show symptoms of jaundice and we rushed her to the emergency room, my dad turned to me and said “this is usually the first sign of pancreatic cancer”. By that stage, mum had been receiving treatment for approximately six months.

Knowing that it would take a couple of months for her to regain her strength following her treatment, mum took a break in early 2014 so she would feel strong on my wedding day. And on my wedding day, she not only walked me down the aisle, but she made her speech and spent the majority of the night boogy-ing on the dance floor. Of course, there were moments of pacing the foyer in pain, but she made it through. And I will forever be thankful that the treatment she had gave us those moments together. As I said during my speech at my wedding, she absolutely lit up the room and was the most beautiful person there – I was the bride, I was allowed to say that.

Following my wedding, my mum went downhill. By July, we were being told there was nothing further doctors could do. On 2 August, my mum’s breathing started to slow. Over the course of the weekend, our immediate family never left her side, and on 3 August at around 2pm, my mum passed away, holding the hands of my dad, my sister and I. There were about 30 other family members in the room with us.

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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.

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The Discovery

Testimony of our founders, Carmen Delgado and Olga Lamarca in words of her son Nico and her sister Marta Lamarca respectively. Olga and Carmen did not have time to share their story, so their beloved ones tell us how they learnt to enjoy the gift of live. This video is a personal testimony, in first person, from letters that Carmen and Olga wrote a few months before they passed away.

This is My Story

The two videos with our founders testimonies are available in our Youtube channel:

Captions in English available in the video settings.

The Impact of Time

Pancreatic cancer changed everything for Carmen and Olga. However it also brought a lot into their lives. It gave them a different pespective of life. It helped to value those things that really matter. The dissease made them wiser and better people. It help them prioritize things like solidarity, and help them become stronger. But all these learnings are meaningless without TIME to practice them and to enjoy live. Pancreatic cancer took it away from them.

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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.

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My Story is about Kasia Chmielewska

This event took place from 03 Jul 2014 until now.

The Discovery

It all happened unexpected. I was at work and I felt strange stomach ache. I knew it was a kind of pain I’ve never felt before… I took a step and I went to a doctor. However since that moment it has took a year until I’ve heard that I had a pancreatic cancer. I haven’t suffered from any serious disease or chronic condition till then. I was 33, a mom of two years old boy, married to love of my life and my best friend, getting promotion at work. It was all not what I have planned …

This is My Story

At the beginning rather unconsciously, after some time with all that new experience of chemotherapy, surgeries and psycho-oncologic therapy I’ve started to build a strategy to stand up to the monster the disease seemed to be. I’ve started to gain knowledge about pancreatic cancer and cancer at all. My husband motivated me searching for successful stories. I’d discovered that my attitude had an influence on how I feel and how I cope with all the difficult treatment.

Healthy diet, physical activity both adjusted to my conditions and actual preferences, and celebration of everyday life had become a solid mainstay of my strategy. Being on the chemo I’ve started running. I’ve started very cautiously, from 300 meters. Quickly it turned out that I can do better. Day after day, week after week I had trained and after couple of months I run first in my life 10 km distance. I’m still trying to jog at least twice a week. In July 2016 to fulfil my dream I climbed Glossglockner (3798), Austria highest mountain. It was challenging, however it also gave me wings.

My fight isn’t finished yet. I’m still facing the disease believing I can fly just a little bit longer. Hoping all pancreatic cancer patients can.

The Impact of Time

You know the feeling when you go on a vacation to some exotic place and first few days seem so long and fulfilled. Time is extending because there is a new territory that you need to recognise. It’s similar to what I had felt at the time of diagnosis. I clearly remember how it was like.

Like in many cases as mine life brings an experience of a disease not waiting for one’s consent. Not bothering if we are ready or not. And naturally we are not … All I felt at the beginning was fear. Fear coming from the bottom of my heart. Strait from my guts. For a couple of days I’d felt like hounded animal.

Luckily for me when I heard the diagnosis I had already been after a successful Whipple procedure (July 2014). So soon, with a “little” help of my wonderful husband, family and friends, it allowed me to rise in HOPE. Although the reality didn’t give me much reason to hope. Soon before I begun the chemo it turned out there are four metastasis in my liver. But HOPE already aroused and I wasn’t giving in I had too much to lose. In January 2015 I had a surgery, as a result a right lobe of my liver had been resected. Three months later in April 2015 I had to have laparotomy due to intestinal obstruction. It was adhesion on the peritoneum that had to be operated. To sum up in last five years I had 5 big surgeries, 5 smaller medical interventions, chemotherapy total lasting for over a year. Since April 2017 I have diabetes as I had my pancreas totally resected. I can hardly believe I’ve survived it. But I did. And I believe that others can do as well.

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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

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My Story is about William Price

This event took place from 30 May 2006 to 02 Mar 2008

The Discovery

My father became jaundice. Got checked out and the pancreatic cancer was discovered.

This is My Story

I had heard about pancreatic cancer long before my dad, William Price, was diagnosed with this horrible disease in May of 2006.

My friend, Todd Cohen, lost his dad, Richie, to pancreatic cancer several years earlier, and I knew Todd was heavily involved in the Pancreatic Cancer Action Network. But it wasn’t until my dad was diagnosed and I started to do deeper research that I realized just how awful it was.

Like anyone, hearing a loved one has pancreatic cancer is devastating, and that’s how I felt that day. But my dad never lost hope, never gave up, never got down. He had the Whipple procedure less than a week after being diagnosed, and for a time it appeared as if the cancer has been eliminated. But it resurfaced in his liver about 6 months later. Still, he didn’t get down, was determined to fight, taking trips to a local hospital for chemotherapy and occasional trips to Sloan Kettering in New York.

I always knew my father, despite being one of the kindest men you would ever meet, was tough, but I didn’t realize how tough and how strong he was until this ordeal. And he vowed to not let it beat him.

In fact, in December of 2007, less than three months before he would die, he flew to Florida with my mom for a relative’s wedding. He knew the cancer was getting worse, it had spread to his hip at this point and he had started radiation treatment, but it wasn’t going to stop him until he decided to stop.

When he died, of course I was shattered, but I was inspired by his courage and fight and the hope he showed. It’s now 13 years later, and though strides have been made in the fight against pancreatic cancer, we are nowhere near where we should be. In that time I have lost friends and relatives to pancreatic cancer, I have joined a charity in the name of my good friend Steve Kelly, and I make sure to get to Purple Stride NJ every year.

This is an awful disease and none of us can give up the fight until there is a cure, or at the very least, early detection.

It’s taken way too many people.

The Impact of Time

The jaundice was actually a lucky break for my dad as the tumor in his pancreas was discovered early, he underwent the Whipple procedure almost immediately, and for about six months or so, appeared to have beaten it. But the cancer came back.

Still, for a man who was around 80 years old, he lived 18 months after the cancer was discovered, so the early detection, I would like to believe, gave him more time.

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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.

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My Story is about Andrea Spinelli, patient

This event took place from 18 Oct 2013 until now.

The Discovery

Pancreatic cancer was diagnosed in 2013 when Andrea was suffering stomach and back pain, and suddenly his skin and eyes became yellowish. The tumor, in the head of the pancreas, was locally advanced and non-operable.

This is My Story

It is a story that gives hope! Andrea Spinelli, 47 year old from Sicily, was diagnosed with inoperable pancreatic cancer in 2013 and 9 years after his diagnosis, he continues to fight, write books and walk. Since the doctors told him he had only 20 days to live, Andrea did not give up and began to walk thousands of kilometers, often alone, reaching very remote and beautiful places. His pedometer has just passed 24 thousand kilometers. Andrea began walking small distance routes, from home to the hospital, and then moved on to more challenging walks, such as the “Camino de Santiago” in Spian and the “Via Francigena” in Italy. The pain caused by the disease is still strong, but “thanks to my physical activity, the body produces endorphins that help tolerating the pain, at least mentally”, Andrea says.

From his experience, Andrea wrote his first book “Se Cammino Vivo” (If I walk, I live), he is still sharing his daily adventures on his blog. On September 2021, Andrea presented his new book, “Il Caminante”, in which he tries to answer a very frequently asked question: “How can you be so calm?”. Andrea said “immerse yourself in reading and, perhaps, follow Andrea’s footsteps.

The Impact of Time

The concept of time is very important for Andrea. “From having 20 days to live to 8 years after, how many places I visited, how many people I met on my walks, how many pages I wrote. Time is a big gift and we have to use it in the best way we can.”

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