Tag Archive for: Real Stories

Tania

My Story is about Me – Tania

 

This event took place from 12 February 2021 until now.

 

The Discovery

I was initially feeling lethargic and tired, and I wasn’t sleeping properly. When I went to my GP, she assumed I was going through menopause.
Following this, I got severe glandular fever in July 2020 and went back to my GP after I had recovered. I got blood tests done the results came back normal.
In November, I started to feel severe lethargy and shooting pains under my breastbone to the point that I couldn’t finish my workouts at the gym. I stopped going to the gym and I thought my lethargy may have been related to low iron (which is something I had experienced in the past). I also started losing my appetite and losing weight, but I attributed that to stopping my workouts. Initially I did a few sessions of acupuncture but when the pain did not subside, I went back to my GP. When she started talking about menopause again, I insisted that there was something else going on. I got a blood test on 27th November and based on the results, my GP thought I may have had an issue with my gall bladder. I got an ultra sound on 1st December and they found a cyst on my pancreas which raised alarm and I got sent to do an urgent CT scan on 2nd December. I got the call that afternoon with the news that it was a tumour and I was diagnosed with Stage 4 pancreatic cancer — metastised to the liver. I was 44 years old.

 

This is My Story

I’m a big believer that your mindset dictates your behaviour and what you attract into your life. I’m a big fan of Joe Dispenza and his meditations and teachings helped me a lot. I believe mental and emotional health plays a very big part in your healing journey as a cancer patient.
Trusting my gut and listening to my instincts helped me immeasurably. I googled ‘successful pancreatic cancer stories’ often because I wanted to know what others had done to get to remission. This was something I did often and not only did it give me hope, it gave me ideas on what to include to help treat my cancer.
I asked my oncologist not to tell me my prognosis, I believed it wasn’t up to her and that I wasn’t a statistic. I also believed if I carried this information with me, it would be a detriment to my mental health and my recovery.

I attribute a big part of my journey and my healing to my faith. Prayer helped me immensely.

My message of hope for others is to never give up even if you have dire circumstances. Hope is what gives us the power to endure what we think we can’t, to heal. You can defy the odds, you’re not a number or a statistic. Always follow your gut, don’t be afraid to challenge your oncologist and if you’re not happy with how you are being treated get a second or third opinion. Always advocate for yourself, no-one knows you better than you know yourself. Steer your own ship and be open to alternate therapies that can help assist with your treatment and boost your immune system. And lastly, don’t dismiss your mental health, it’s just as important as your physical health.

 

The Impact of Time

Most people are diagnosed at late stage with pancreatic cancer which means time isn’t on your side.. in one instant second, your world is turned upside down
It has been a tough journey for me emotionally especially in the early stages of diagnosis. I had never before had to face my mortality and looking down the barrel of death was pretty scary and traumatic.

I couldn’t understand how I got pancreatic cancer — it wasn’t genetic, and my family has a history of breast cancer, so it didn’t make sense to me. I was living a healthy lifestyle (eating well and doing weights and resistance training 4 times a week as well as trying to walk 10,000 steps a day) and didn’t have any of the typical pancreatic cancer risk factors (I don’t smoke or do drugs, I’m not overweight or obese, I rarely drink alcohol, I don’t have diabetes) and I had never been to hospital or had any major health issues.

Time became a precious resource to me..I vowed to spend quality time with my loved ones when I was able and I wanted to spend my time doing things that brought me joy such as going to the beach, spending time in nature, going on little getaways and creating memories. I feel so blessed to still be here and although my cancer journey isn’t over yet, I now choose to use my time wisely, not sweat the small stuff and let go of control and surrender.

 

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Julie

My Story is about John

 

This event took place from 24 May 2014 to 25 September 2014

 

The Discovery

It was discovered because of a trip to the ER for continous heartburn that had been going on for about 2 months

 

This is My Story

My fiancé, my daughter’s dad, only 43 years old, was diagnosed memorial day weekend 2014 and passed only 4 months later. He was diagnosed stage 4, metastasized to stomach and liver.

At first they thought it might be liver cancer and never would I wish for someone to have cancer but I was really hoping it was liver because I already knew the outcome for pancreatic cancer. He went in every 2 weeks for chemo. I believe it was about 6 hours that he had to sit in the treatment center then he had to wear a chemo pump for almost 2 days after that. Out of the 2 weeks he was lucky to get 2 really good days where he would want to get out of the house, eat, go outside, do anything but lay in bed or on the couch.

So much changed so quickly. Up until then he didn’t have the weight loss typically associated with pancreatic cancer. He didn’t have any of the typical, more well known signs. The only things that could be considered out of place was lack of energy and persistent heartburn. Well he was in his early 40’s, loss of energy happens right? About 2 months earlier we had tacos for dinner and we used fresh jalapeà±os (which we never did) so heartburn happens right? He didn’t mention to me it had been pretty much continuous for a few weeks. He waited until memorial day weekend to go to the ER because he didn’t want to interrupt the last couple of weeks of the school year. I think he knew something was really wrong but didn’t let on to me about any of it.

Our daughter was only 6 at the time and I felt bad having to go to work leaving them to basically take care of each other for the whole summer. Mid September came around and he noticed his stomach was looking bloated. We went to the hospital and they drained the fluid off. Two days later the fluid started building up again so that landed him in the hospital. The first couple of days was ok until the doctor came in and told us that despite the chemo treatments the cancer had spread to the abdominal wall. They could try a different chemo to try and keep that cancer at bay but he refused. Who could blame him? I certainly couldn’t. Seeing him go from the person he was to the person he had become was awful.

He spent his last 10 days in the hospital. He passed at 4am September 25th. I should have expected nothing less from the man I had been with for over 10 years, who enjoyed his weekend bonfires and beers and typically would not come in until the wee hours of the morning. We will never forget him. I will never let our daughter forget him. He will forever be missed by those he left behind.

The Impact of Time

You truly don’t realize how short time is until you find out you don’t have much left. Knowing that the time left won’t even be quality time because of the attempted treatment is even worse.

 

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Jessica

My Story is about My mum, Geraldine McLaughlin

 

This event took place from 26 November 2016 to 19 February 2017

 

This is My Story

Prior to my mum getting diagnosed, I had never heard about the symptoms of pancreatic cancer, the causes, or ways you may be more susceptible to the disease. For this reason, I take every opportunity I can to spread awareness for pancreatic cancer. The more people who are aware of the symptoms might be able to help themselves or the people around them.

 

The Impact of Time

The value of time related to pancreatic cancer is enormous. Pancreatic cancer can progress in such small period of time, which is why it’s so important that people are aware of the symptoms to catch this disease as early as possible.

My outlook on time has changed significantly because of pancreatic cancer. My mum had the operation only a few weeks after being diagnosed; unfortunately, her operation was unsuccessful. We had hope, and we did everything we could to get her strong enough for chemotherapy. Weeks started to feel like months and my mum was only getting weaker. The doctors told us she was too weak for chemo, the only thing we could now do was make her as comfortable as possible, time was not on our side. I often wonder, “what might have happened if we had caught it earlier?”… An earlier detection may have completely changed how things panned out. Time is definitely a gift, and it is certainly a thing I shall never take for granted again.

 

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Maria

My Story is about My daddy

 

This event took place from 1 June 2014 to 13 May 2015

 

The Discovery

June 1, 2014 my healthy 53 year old daddy had his first pain. At the ED, we heard the words that changed our lives forever “a mass on your pancreas.” The hospital took a biopsy and didn’t get any positive cells so they said they had mistakenly diagnosed this and it was pancreatitis. They sent him home with suggestions on how to prevent flair ups. In the 3 months after that, he was in pain on and off and we went to a bigger more specialized hospital where they did multiple ERCPs and a total of 7 tests before getting a positive cell. My boyfriend at the time walked into my parents house to ask for my hand in marriage about 5 minutes after the doctor called him to deliver the news of the positive cells.

 

This is My Story

We traveled 2 hours away where in September 2014, he had the Whipple and vein resection done. The surgeon told us there was a 90% chance he would not make it. When this news was told to my dad, his response was I have a 10% chance. I can do this. A few weeks later, I got engaged and I knew I wanted to quickly get married because of his diagnosis. We got married in November 2014 and in the 2 months from my dads surgery to my wedding day, he lost so much weight and began to look so weak. March 2015, the ascites started and my dad started going to the hospital twice a week to get it drained. We knew this was bad but we didn’t give up fighting for him and with him. April 2015, he had blood in his stool and he went back to the hospital where the admitted him and eventually sent him home on hospice. A former college football player, 54 years old now on his death bed. We watched him waste away into nothing but bones. My brother, my mom, my husband, and I spent everyday soaking up every moment we could with him. On May 13, 2015 my daddy peacefully passed away with my mom, my brother, the hospice nurse, and myself by his side. I found out I was pregnant 2 weeks later and my daughter which would have been my dads first grandchild was born exactly 8 months after he passed. My brother is now married to my dads hospice nurse. Losing my dad at 24 years old shifted my life in a way I will never recover from. Pancreatic cancer took the strongest man I have ever known and if my story can help 1 person, I will be fulfilled in my life. Advocate for your loved ones, educate others on this awful disease!

 

The Impact of Time

I know now just how important time is. I am always wishing for just one more moment. Time is so important.

 

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Briana

My Story is about My Dad Vincenzo

 

This event took place from 1 June 2015 to 18 August 2017

 

The Discovery

Unexpected weight loss, jaundice and loss of appetite.

The Impact of Time

Our outlook on time has deeply changed, there were days we took for granted before Vince becoming sick yet weren’t aware of how precious those days were to us. The role of early detection in Vince’s diagnosis played a major role the demand for furthering test gave us the results we didn’t want to hear yet brought us time to make the best memories we could have, the gift of time relates to our story as it allowed us to make memories that we now cherish and look back on to honour Vince’s life, The precious gift of time gave us two years to go on that last family holiday together, to go out for dinner together as a family, to have one last coffee date with his wife, to have one last brunch date with his daughter, to go to one more footy game with his sons, to have a family dinner at his parents and in laws, the gift of time gave us memories and those memories now give us comfort the gift of time is precious and something to be cherished and never taken for granted.

 

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Margarita

My Story is about my mother Galina.

 

The Discovery

It was diagnosed when she was taken to hospital and operated on. She lived for about 5 months.

 

This is My Story

My mother had a hard life and just when life could have been a little easier for her Pancreatic Cancer took her life. I was 21 and had a Downs Syndrome sister who was now my responsibility. I basically looked after my mother at home, taking time off work. It was a horrible, sad time and I was with her when she took her last breath. I was devastated. I have since been petrified that I also would get Pancreatic Cancer because of the hereditary factor. I have thought about having a genome test but have not done this. I follow all the scientific studies and as I have been a volunteer with The Garvan Institute of Medical Research I am pleased that they are doing a lot of research. It changed my life.

 

The Impact of Time

It was a late diagnosis after an exploratory operation and time ran out very quickly. The ‘Gift’ was taken away from my mother. She died in 1969 at age 64.

 

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Beverly

My Story is about Me

 

This event took place from 11 April 2019 to now.

 

The Discovery

My cancer was discovered during an early screening program via endoscopic ultrasound in April of 2019.

 

This is My Story

In 1998, I watched helplessly as my mother was shuffled from specialist to specialist, and from one hospital to another over a 5 week period just to get a diagnosis. Within 6 months she was gone. Had it not been for early screening, that might have been my story. I always had an inner voice that told me it was a matter of “when” and not “if”, but I never pictured hope as part of the equation. Because of early detection, I now have HOPE!

 

The Impact of Time

Early detection didn’t just play a role in my story, it IS my story. My mother had died of pancreatic cancer in 1998 and my maternal grandfather in 1974. I also believe there were others in my family tree based on vague death certificates discovered on ancestry.com. Every year at my annual physical, my PCP would go over my family history and the response was always the same. “Unfortunately there are no tests for early detection when it comes to PC.” It was through self advocacy that I happened upon the CAPS5 study through John Hopkins University and I signed up immediately. I had 2 yearly screenings with no findings. On the third year a 1cm mass was found on the tail of my pancreas. I had no symptoms. Within 2 weeks, I had a distal pancreatectomy/splenectomy followed by adjuvant chemo and radiation. I was staged at 1a with no lymph node involvement. I am currently NED.

 

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Novocure

My Story is about going beyond the diagnosis

 

This is My Story

A pancreatic cancer diagnosis impacts an individual, their family, their friends and loved ones. At the time of diagnosis, it can feel like the world stops. This diagnosis can change a person’s pace of life quickly, and it is often up to a person’s internal dialogue and external support system to find strength and tenacity. A diagnosis can be a turning point to redefine one’s life and what it looks like to live with cancer.

After a diagnosis, it can be easy to forget what came before. There is “before” and “after,” and whatever brought joy “before” may start to look different. The WPCC mission, to drive transformational change for all those affected by pancreatic cancer, empowers and educates a community for patients and families in the fight against this disease. Novocure is grateful to partner with the Coalition and work collaboratively to raise global awareness of pancreatic cancer and support each other’s efforts.

With gratitude for the patients we serve, we come together as individuals, many who have known and loved someone impacted by a pancreatic cancer diagnosis.

We do this work in loving memory of Stanley K., beloved brother, dad, uncle and grandpa; we honor the memory of Paul Z., a dear friend and mentor.

Patients- unique individuals- with cancer remain at the heart of the work we do every day, and patient feedback helps refine our scientific approach. The health and lives of patients, their caregivers, and their families guide us forward in the fight against pancreatic cancer.

Learn more about the PANOVA-3 clinical trial.

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Sirli

My Story is about My mother Piret

 

This event took place from 15 December 2020 to 10 September 2021

 

The Discovery

My mother got admitted to the hospital in December 2020 after she had severe abdominal and back pain and was unable to eat. A tumour was found on the tail of her pancreas and further testing ordered for January 2021. She had to wait for over a month due to peak of Covid-19 in Estonia at the time. More tests were required and she finally received her actual diagnosis in March 2021 – stage 4 pancreatic cancer.

 

This is My Story

I look back and am so grateful to not have listened to my mum when she said to wait to go over to see her. I’m so glad we got to spend a lovely summer together and that she got to be a grandmother to my daughter. To travel during such stressful times as covid is hard enough on its own, let alone for reasons such as someone so close having stage 4 pancreatic cancer. I would not have forgiven myself if I had not gone over. I am sad I didn’t get to be there for her when she passed but the 3 months we had are the most precious time that we will always have together.

 

The Impact of Time

I live in Australia and had wanted to go over to Estonia to visit my parents for a while at the time I received news of mums diagnosis. My daughter Rubi was born in 2019 and my mum had come over to visit when she was 2 months old but the rest of my family hadn’t met her at all.
Australia’s borders were and had been closed since the beginning of the pandemic with no sight of them opening any time soon. I knew in the back of my mind that I needed to go over to see her earlier rather than later. She insisted that we waited until the Covid situation had settled more but I just couldn’t wait any longer knowing that time is so limited. My mum was never given any estimate on how long she had left.
So I applied for an exemption to leave Australia with my 21 month old daughter which got denied the first time – my mother’s diagnosis was not enough of a reason unfortunately. So after seeing my doctor and getting a mental health valuation I then got my exemption approved if we left for a minimum of 3 months. With heavy hearts Rubi and I left my husband behind and flew to Estonia in the beginning of May 2021.
My mother had turned down chemo as she wanted to live life as normal as she could for as long as she had left. The first month in Estonia was hard as she suffered great pain and was not able to eat or sleep properly. Luckily she eventually started receiving palliative care and we had the most beautiful time enjoying the summer together. My daughter and my parents formed such a great relationship – I knew then and there that I had made the right decision to go.

As our time in Estonia was coming to an end we encountered many difficulties with returning to Australia due to the incoming passenger caps being halved again by 50%. For a while it seemed we were stuck there for at least another 6 months however after a lot of research and a lot of money paid towards new tickets, Rubi and I flew back to Australia at the end of August 2021.

It was so hard to say goodbye to my mother as it was potentially the last time we’d see her. But because the pain treatment had been so efficient my mum was in great spirits and very positive, talking about coming to visit us when border restrictions eased and even going back to work maybe. We arrived back in Australia on the 17th of August and were under hotel quarantine followed by another 2 weeks of home-quarantine. During that time my mum’s condition worsened very quickly and she ended up in the hospital with internal bleeding. After 5 days since being admitted, on the 10th of September 2021, she sadly passed away at the age of 57. She lived for 6 months since receiving her diagnosis.

 

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Catherine

My Story is about No Symptoms

 

This event took place from 17 May 2020 to 7 September 2020

 

The Discovery

By a 2nd biopsy

 

This is My Story

I feel the nhs let us down badly, It was so quick and such a shock. I seriously think that once they decided it was pancreatitis they ever looked back on his notes to see that cancer had been diagnosed 10 weeks earlier. I would never trust the hospital again. I also think that your campaign to recognise symptoms isn’t always true as my husband had none till too late.

 

The Impact of Time

My husband was a fit & healthy man of 66. Just retired, having never had a day of work through illness. We had just been on a 6 weeks fabulous, on the go holiday to New Zealand.

5 weeks after returning on the Sunday morning my husband didn’t get out of bed as he said he hadn’t slept very well due to a feeling of an upset stomach.. We had been married for 43 yrs and I had never know him not to get up.

He got up after a few hours and tried to go to the toilet and couldn’t, so went back to bed.

I made an appointment to get a covid check, as it was while in lock down. We went the next day. (Monday) He still wasn’t feel great. He went back to bed soon as we got home. one minute really warm then cold.. still hadn’t eaten anything since the Saturday night.

At 11 pm he started having a rigor.( shaking uncontrollably) I didn’t know what it was at the time. I dialled 999 The paramedics came and took him to hospital. They did a blood test and told him he had a marker on his liver?

He had a ct scan later that morning. We were told that he had a tumour on his pancreas and that it was cancer. The next day they change their minds and said it was pancreatitis. I did a lot of research, and he hadn’t had any of the symptoms for that.. but who am I to know.. He then spent the next 10 weeks in and out of hospital because of rigors because of an infection they said they couldn’t find. He was pumped full of antibiotics every time then sent home. He was loosing so much weight as he couldn’t eat. He had a stent fitted in his bile duct as they said it was narrowed, and a biopsy that came back negative I finally demanded that he had more tests as he was going downhill. They did another ct scan which now showed new lesions on his liver and another biopsy that came back positive. We were told it was terminal but he could have chemotherapy to extend his life up to a year. He never got the chemo as he died 6 weeks later. He wasn’t over weight, only smoked in his younger years having been stopped nearly 35 yrs. and was only a social drinker. He started with high blood pressure at 60 and was on one tablet for that.

 

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