Tag Archive for: Real Stories

Ana Paloma

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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Kerry

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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Iga

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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Megan

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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Bill

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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Lucy

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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Federica

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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Sandra

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.

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Damian

My Story is about Myself and my father

This event took place from 26 Sep 2018 to 31 Dec 2018

The Discovery

I had a CT scan

This is My Story

My Grandfather died of pan creatic cancer in 1959 at the age of 44, back then there was no research or information that there is today but it paved the way for what was to come. In September of 2018 my father was diagnosed with pancreatic cancer after months of pain and misdiagnosis from several G.Ps he was finally given a CT scan which showed a mass in his pancreas , he was admitted to hospital 3 weeks later where he underwent a Whipple operation, all went well and he started chemo 12 weeks later, during his chemo I started to suffer from the same symptoms he had , so I went for a CT scan also never expecting it to be anything serious but when I got the news that I also had pancreatic cancer it was so hard to believe, Grandfather, father and then son all diagnosed with pancreatic cancer. My father had 2 months of chemo buy was given the bad news that it had metastized to his liver and he died 2 months later, I on the other hand was lucky that it was caught in time and after 9 months of chemo and 2 years later I am still here and getting on with my life, only for my father I probably wouldn’t be here. I decided to pursue this further as all 3 generations had the same cancer so I sent blood away for genetic testing along with my father’s blood and discovered that we both had a gene called cdk-2na which basically means I am more likely to get cancer that someone who doesn’t have it. So it is so important that this cancer is caught early like in my case, if my father had of been sent for a scan sooner he would still be alive today. I am 2 full years clear now and hope that continues for a long time to come..

The Impact of Time

Time relates to my story on a way that it is precious and so so important that it is detected early.

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Anna

My Story is about Virginia Murphy nee Cahill (my mother)

This event took place from 01 Dec 2020 to 21 Jun 2021

The Discovery

My mother had red flag symptoms in December 2020 (Nausea, belching, vomiting etc.) and was unable to get a GP appointment that month. Following a local a&e hospital admission in early January 2021, scans had showed a mass on the head of her pancreas (circa 4cm) and multiple liver lesions consistent with metastasis. It wasn’t until near the ned of January that a biopsy was taken and only in February 2021 did she receive the biopsy results confirming pancreatic adenocarcinoma. The family (we) were told that my mother would have anything between 3, 6 and 9 months to live, but closer to 3 months given the extent of the disease. My mother had several hospital admissions due to complications such as a gastric blockage, blocked bile duct and ascites. We did not hear from an oncologist for a long time and there was no true offer of chemo. Virginia sadly passed away on 21st June 2021, just 3 weeks after her 62nd birthday, leaving behind a husband of 42 years, her only sibling (brother), 5 adult children and 5 grandchildren.

This is My Story

My beautiful mother died at 62 years old. We (the family) cared for her morning, noon and night and never left her side since the day she was diagnosed until the day she took her last breaths. Virginia left behind a husband of 42 years, her only sibling (brother), 5 adult children and 5 grandchildren.

The Impact of Time

We are in Northern Ireland. Two months were wasted before my mother’s cancer was found and confirmed. Had my mother’s cancer been picked up in December we are sure that my mother would have had the opportunity to have been offered chemo, perhaps even delaying or preventing complications such as gastric blockage, bile duct blocks, and ascites.

PanCan is not like any other cancer. The prognosis for this cancer is remarkably short as it is often caught much too late. Patients of other cancers are often given 2 years prognosis, we had many well-meaning family friends and people in our community tell us not to worry about Virginia because they survived breast cancer and they were still here many years later after being given a 2 year prognosis. Patients with 2 years prognosis have a little bit of time to wait for procedures and treatment, whereas PanCan patients with only a few months prognosis have no time to wait. Each day in their journey is highly significant. GPs, physicians, oncologist and multi-disciplinary teams need to act fast and be involved in their patient’s care from day 1.

There was no early detection in my story, my mother suffered from back pain 2 years prior to her diagnosis (pre-pandemic). Even then, the GPs did not see her face to face and just prescribed over the phone without any further investigations. My mother continued to manage her own back pain herself at home for those two years. Could this back pain have been early symptoms of her pancreatic cancer? We will never know now.

Time is the most valuable resource in the world. Time is something that we can never get back, more valuable than money. Act now, live now! My precious mother never got time.

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