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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Samantha

My Story is about My Mum, Teresa Leaper

 

This event took place from 10 December 2017 to 11 December 2017

 

The Discovery

My beautiful Mum worked at our local hospital and one day at work, she had a funny turn. She called me at work to let me know and asked me to bring her some pyjamas and toiletries after work because she thought they’d keep her in overnight. She told me not to leave work but as she was telling me that, I was logging off my computer and getting ready to leave. Mum had been unwell recently and she was undertaking some blood tests, etc and I just thought that if these range of tests could be done at the hospital then this would be a quicker way to get the results we needed.
I’ll never forget Mum’s friends, the faces of the Drs and Nurses she worked with and her friends crying and being devastated as her diagnosis became evident. At that stage, I didn’t realise the bleak outlook for those with pancreatic cancer. I thought Mum had a battle to fight but that she’d do it and then we’d continue on with our lives. After going home and searching through the internet, my eyes were opened.

 

This is My Story

Any other cancer and I would have backed my Mum to kick its butt. She was an incredibly strong, loving woman.
I’m grateful I was able to bring my Mum home to live with me and my family. That we got to spend so much time together- all hours of the day and night.
On the day she died, Mum was in so much pain. One of my daughter’s asked if she was going to die that day. I remember recoiling in shock. My siblings and I talked about what to do – should we take her to hospital, and how could we watch her suffer for another 5-7 months if it was going to be worse than what she was suffering. At about lunchtime, with my brother and I in the room, my Mum had a seizure and stopped breathing. We called 000 and I started CPR. While we’d had lots of discussions, I hadn’t spoken with Mum about whether she wanted to invoke a DNR because I thought we had more time. I was traumatised for a long time after that. I kept working on her until a number of Ambo’s arrived – many of them her friends. I’ll never forget one of them standing outside my house with tears streaming down her face. Mum had worked at the local hospital for almost 40 years so she was very well loved within that world. They transported Mum to hospital but we knew she was gone. Mum’s friends all got to come and say goodbye to her and share wonderful stories with us about how much she meant to them. I’ll always be grateful for that time because while we knew Mum was an amazing woman, it was wonderful to see that others knew how incredible she was. At 67 years young, one month after her diagnosis, our beautiful Mum was gone.

 

The Impact of Time

With Mum’s diagnosis, our world shrank to days, hours and sometimes minutes. We tracked mealtimes and medication times, sleep times.
My daughter planned her wedding quickly in the hopes her beloved Grandma would be there. She wasn’t and the wedding took place one month after she passed away, exactly two months after her diagnosis.
The gift of time, even though it was only a month, was that we really focused on our family. We have always been close and expressive in our love but we used this time to have some really important conversations and just appreciate the relationships we all had. Mum had been shocked when she was given the potential timeframe of 6-8 months to live. I’m grateful she didn’t realise it would be much less than that and I’m glad she didn’t suffer any longer than she did.

 

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Amanda

My Story is about my older brother Richard Millar, Jr.

 

The Discovery

My brother Richard had been attending hospital for over 18 months complaining of shoulder pain, itching, weight loss, stomach and back pain also with toilet problems – but every time he went they said he was fine. He was at A&E during the last week of July 2020 the doctor said his bloods came back ok and all vital organs were fine. On the 10th August 2020 was the last time he was taken away in an ambulance to hospital. He was in severe pain. They took biopsies and a few days later they diagnosed my brother with pancreatic cancer.  They said it had spread rapidly and that there was nothing they could do. My brother deteriorated very quickly and passed away 4 weeks later, he was only 42. Richard was a hard working fit young man. He did attend the hospital because he knew there was something wrong, but we personally feel that they missed all the signs and my brother was neglected.

 

The Impact of Time

Time is very crucial. If you have any symptoms at all I feel that you need to push for answers so that you can be treated. Unfortunately for my brother he did have the symptoms and did attend hospital but they failed to detect the cancer. Because we were never aware off the symptoms of pancreatic cancer and never knew that much detail about it we never knew how fatal it can be. TIME IS A GIFT.

 

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Kylie

My Story is about Mike Nelson

 

This event took place from 26 May 2020 to 20 October 2021

 

The Discovery

My grandpa Mike was sick, throwing up, back pain. So he went to the doctor and they ran a bunch of tests, that’s how they found his cancer– stage 3 pancreatic cancer.

 

This is My Story

My grandpa was 72. He fought for a year and a half. When we found out he had cancer, he was already at stage 3. Early detection is not a want, it is a NECESSITY. Could early detection have saved my grandpas life? Maybe. Could it save someone else’s? Absolutely.

 

The Impact of Time

My grandpa had his whipple in April of 2021. It was a 10.5 hour surgery and afterwards he was declared cancer free! Amazing! We were ecstatic. He had fought so hard for this. On October 7th 2021, he had a follow CT scan and blood work. His CA-19 levels had skyrocketed to over 10,000. His cancer was back. His oncologist said he had 6-12 months left as he had previously maxed out on chemotherapy, radiation, and there were no more surgery options left. There’s that funny thing about time. I was set to be married in September of 2022, so we changed that and I got married in my grandpa’s living room on October 10th 2021. Two hours after I got married, my grandpa Mike started throwing up blood. We brought him to the hospital, it was worse than we thought. The cancer was everywhere. They offered palliative care, a stent in his bowel, but he refused. He was tired, he wanted to go home. He was ready to go home and lay down his fight. On October 12th, 2021 we brought my grandpa home on hospice care and had The Best Day. We laughed, joked, he was awake and lucid and he was My Grandpa. I spent the next 8 days working with hospice and my grandma to care for him as he rapidly declined. We made him comfortable as best as we could, spoke to him, sat quietly with him, sang him quiet tunes, read to him. On October 20th, 2021 at 7:35pm he left his earthly body, his cancer, everything behind. He died. We were next to him. I held his hand, kissed his face. My grandma sat by his head. It was quiet, peaceful. He was 72.

There’s something funny about time. In the span of 12, 13 days we went from thinking we had years left, to 6-12 months, to days. We soaked it all in well we could. Even when he wasn’t awake, just sitting there holding his hand I remember begging God to let me pause time, let this moment last forever.

 

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Sonya

My story is about ME.

 

This story begins on 11 November 2014

 

The Discovery

I started with melanoma in 2009.spread to my lungs in 2012 back of knee 2013 and brain same year. pancreas in 2014. Given 6 months as they couldn’t operate where the tumour was. I am truly blessed to be still alive. 🙏🙏🙏

 

This is My Story

Never give up! If it’s your time god and his angels will look after you. My moto though is never give up. Xx

 

The Impact of Time

I was told I had six months. It has a massive impact on my family. They did my children’s Christmas shopping crying as the picked my two young children’s presents up. I knew there was nothing they could do, but I never thought I was going to die. I got a trial drug and it worked.! I live to tell the tale.

 

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Effie

My story is about my Family.

 

This event took place from 15 June 2008 to 30 September 2009

 

The Discovery

In June 2008, my sister-in-law, noticed that her husband, my brother, Larry Townsend, was jaundice. She reached out to a GI doctor and an ERCP was performed. A tumor was blocking the bile duct which biopsy diagnosed as pancreatic cancer. Larry went to ETMB (Galveston) where after a complete workup, he had the Whipple surgery. The surgeon was unable to remove all the cancer because it was too close to the vein. It was hoped that the remainder could be eradicated with chemo. Larry passed away September 30, 2009.

My oldest sister, Mae Frances Gardner, went from NC to Texas to help care for Larry. While in Texas, she became ill and saw a couple of doctors without a diagnosis. In August 2008, she was brought back to NC and we continue to seek answers for her abdominal pains, nausea, and weakness. She went to the ER twice, once being admitted to the hospital for five days. Still no diagnosis. In September 2008, a new PCP ordered an abdominal CT scan. It was discovered that she had a mass emanating from the tail of the pancreas. It had grown into the stomach, encased the splenic artery. There were multiple lesions through out the liver and other organs were involved. She passed away two weeks from this diagnosis.

After two siblings were diagnosed with pancreatic cancer, it was suggested that the rest of us consult our physicians about a scan. A growth was noticed in the pancreas of my youngest sister, Nellie Townsend. Surgery was performed in February 2009 and the tail of her pancreas, spleen, and lymph nodes were removed. The pathology showed that the tumor was Stage 1 pancreatic cancer. She received 6 months of chemo and is now a 12 year survivor!!
After checking with other family members, we discovered that our mother’s sister died of pancreatic cancer. Mother’s bother had two daughters who died of pancreatic cancer.

This is My Story

For 58 years, we were the Townsend Ten. Ten siblings who loved and cared for each other. Pancreatic cancer quickly changed our number, but will never change our love and care for family. April 30, 2022 will be the tenth year for our PurpleStride team, Townsend Ten Team.

The Impact of Time

It’s time for early detection.
It’s time for doctors to put pancreatic cancer on their radar when someone complains of unexplained abdominal pains.
It’s time for more awareness in the general public.

 

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Mark

My story is about my mom – Shirley Weber

 

This event took place from 01 March 2012 to 30 September 2012

 

The Discovery

My mom was experiencing stomach pain in early 2012 and went to see her doctor after several weeks of pain to have it checked out. As a retired nurse, she was of the belief that a kidney stone or a gallbladder issue was to blame. She was diagnosed with Stage 4 pancreatic cancer in March of 2012.

This is My Story

After losing both my mom and father-in-law to pancreatic cancer, I returned to my home in Charlotte, North Carolina in the fall of 2012 and launched my journey into pancreatic cancer advocacy that continues to this day. I am one of the three co-founders of the Charlotte Pancreatic Cancer Alliance. We raise awareness for pancreatic cancer 365 days of the year by doing 3 things: we build community, we share stories, and we create purple buzz.

The Impact of Time

Time was a theme throughout my mom’s pancreatic cancer journey. She was diagnosed about 7 years after my beloved father-in-law, Jim Benson, passed away from pancreatic cancer. My mom passed away 5 months after diagnosis in August 2012. I will forever remember the time I spent with my mom at her beautiful log home in the Idaho mountains in the summer of 2012 as the cancer progressed. Since I fortunately had the ability to work remotely, I had precious time to spend with my mom to talk about her love for her family both near and far, and to talk about the sense of peace she felt as she prepared for her eventual passing.

 

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Catherine

My Story is about My dad Rogelio “Roy” Garcia

 

This event took place from 14 August 2020 to 21 October 2021

 

The Discovery

My father had pain in his back so he went in to get it checked out. They didn’t find anything. He went back in because the whites of his eyes and skin tone was turning very yellow. His bile duct was blocked and they put in a stent to help it. Then they found the mass that was growing on the head of the pancreas in august 2020 he underwent chemo therapy treatment once every two weeks right away in sept of 2020 and after that radiation treatment everyday for about a month and was finished with all treatment June 2021. Passed away October 21 2021

This is My Story

I never thought my dad would pass away from cancer. Cancer doesn’t Discriminate, it doesn’t care how old the person is or what nationality they are. I think people should be aware of pancreatic cancer just as they are aware of breast cancer. When my father was diagnosed that was the first time I heard about pancreatic cancer so I had no clue how vicious it was. And not all symptoms are the same. If any type of cancer is present in other family members you need to be checked regularly to catch it before it is to late. I wish the medical field was advanced enough to catch it before it is to late.

The Impact of Time

I think early detection would have worked for him. He has a long family history of cancer and he was the first with pancreatic cancer. The lord blessed us with 15 months of hardly any suffering. Chemo treatment was a breeze, no nausea and he could still do what he loved to do, work on cars. His appetite changed a little down the line. Foods tasted sweeter and he became full quicker. I will forever tell my fathers journey with pancreatic cancer, and how lucky I was to get 15 months with him from his diagnoses. I feel terrible for the lives lost so quickly and the families left behind in shock, not knowing what the heck just happened.

 

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Cindy

My story is about my Queen: My mom

 

This event took place from 25 March 2020 to 5 February 2021

 

The Discovery

It was discovered when I decided to take her to the Emergency Room.

This is My Story

My mom started having a rare stomach and back pain last year around March 2020. She would go to her doctor at the Community Clinic. She would tell the doctor about her pain and loss of appetite as well , but all they did was send her medicines. They would say ” try this medicine ” ,” maybe it’s this, maybe it’s that”, they even had the nerve to tell her “Maybe it’s something mental.”

My mom couldn’t sleep at night anymore.. it got to the point where she couldn’t handle the pain, so she would take Norco, tylenol, advil, ibuprofen 400mg just so it could help. Until , the medicines were not helping anymore. She started losing her appetite. She would drink tea, eat yogurt, but nothing.
Until one day her primary doctor sent her to get an MRI. The doctor at the MRI center, told me to take her to the ER. To not pay attention to what her primary doctor tells her. To just take her straight to the hospital because this seems like Cancer.
Even tho he said that, I called her primary doctor to notify him of the situation. He said “to not pay attention to him, that he didn’t know what he was talking about, to wait 2 weeks for her next appointment with him.”

I didn’t wait. I couldn’t help seeing my mom in horrible pain. It was devastating seeing my bestfriend, my all , suffering from this undetectable disease.
When I took her to the ER, she was there for a while.
The doctor told me what this was. She was diagnosed with Stage 4 Pancreatic Cancer. My dad & myself were in absolute shock. We never expected this to be Cancer. When she was released to us, she was fragile, she would hardly talk or eat, she would sleep alot.
Her neurologist Sent her sooo much medicine it was unbelievable how much she had to take. When she would take her Morphine , she was hallucinating alot! It was scary. On the night of February 4, 2021, she was back. She was perfect. She started talking like nothing was happening. She even said she didn’t want to take anymore medicine because all she would do is sleep and couldn’t watch her favorite television shows haha.
That night she told my dad if he could make dinner for the 3 of us so we could eat together & watch TV. I gave her a shower, brushed her hair, put perfume on. She loved smelling good haha.

February 5, 2021 10:50am.
I woke up and she recognized me , my dad asked her ” who is that walking in?” She said ” that’s my baby, that’s my daughter ” . 11:00am, she started feeling alone of pain again, she didn’t want to take her morphine like the doctor recommended for pain. When she finally took it, she kept moving around on the bed, she was really cold, she told us that ” she was going to die” …. we got scared, we didn’t know what to do but to tell her to lay down and relax.
When we told her that, when she laid down… she took two long breaths… then we couldn’t see her breathing anymore.
My dad turned her around and that was it. . We called 911 , they came , they did EVERYTHING EVERYTHING to help…… they told us she was gone.
We were devastated .. we felt our lives crumbling into pieces..

Throughout that pain, we were grateful that she was able to spend her last days with us. Her family. She was surrounded by love & joy. Even though it was tought, we tried our best to keep a smile on and push thru.
We tried making her laugh, we would treat her like nothing was wrong.

My queen was gone.
Now it’s just my dad & me pushing thru life. The entire family is in Colombia so my mom was our rock.

Pancreatic Cancer has a shock over me. It’s dangerous.

The Impact of Time

It happened so fast. One day my mom is singing & dancing , and in a blink of an eye.. she was laying down, sleeping all the time due to the stomach & back pain she had. It was just fast.

Sadly, this was detected late. When I took her to the Emergency room, the doctor called me saying she was already in stage 4 of Pancreatic Cancer. We didn’t know the symptoms, we never imagined a stomach pain would be Cancer. I took her to the hospital on January 7, 2021. She spent the days in the hospital alone because of covid. We couldn’t visit her so it was hard for us. We had the blessing of her getting released from the hospital, to spend her last 2 weeks with us. She spent it at home with her family, with the people that loved/loves her, in her own bed, her own home.

 

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Janice

My Story is about My Husband

 

This event took place from 14 October 2020 to 7 March 2021

 

The Discovery

He started with a small cough and for a few months would have a loud hiccup in the middle of the night which we laughed about as it was loud enough to wake me up. He also complained about itchy skin which we put down to dry air. He also lost interest in things he loved such as watching soccer and playing his guitars telling me he was bored with them, we put it down to all the restrictions with COVID. He also lost weight but he was fussy about staying slim and I did notice he was eating less.

In mid February he said he couldn’t taste his food so we got tested for COVID which was negative. he then went to the local clinic who did a chest X-ray that was clear. Our son in Law is a Surgeon and said we needed to go to emergency which we did and they did more blood work and a cat scan. Two days later we had a phone consultation with our Doctor who informed us he had terminal pancreatic cancer that had spread. He had non stop hiccups that no amount of medication could stop and he was unable to get a liver biopsy because he couldn’t keep still. He never really had any pain just mild discomfort. We tried to keep him at home but he was so weak and disoriented from the medication which they couldn’t regulate we had to take him to palliative care.
Just before that we had a video consult with an oncologist in Victoria who really wanted to help him with new treatments but he was already too sick and was too weak to make the 2 hour journey to the cancer centre.

The Nurses and Doctor in the palliative care were wonderful and he was much more comfortable plus I stayed with him. At this point he wasn’t eating or drinking and he lived three more days before passing away at age 76. He was never in pain and even the lowest doses of morphine were almost too much for him to take. Since he passed away I’ve checked the early signs of pancreatic cancer and the itchy skin is one of them. He never had the yellow skin but he did have terrible night sweats in the last two weeks he was alive.

This is My Story

We had 29 wonderful years together and it was so hard to see him lose his fight to live when he had so much more he wanted to do and see.
Because he had always been the fittest one of our group it made us all think about our mortality and how we need to make every day count as you just don’t know what is in store for you.

The Impact of Time

We should have taken more notice of his symptoms but because of all the COVID restrictions we were more worried about getting COVID that dealing with what we’re mild symptoms in the early stages from October to February.

He had always been one of the fittest people I know and an athlete but once he received the diagnosis later in February he only lived two more weeks so we had little time to get all our affairs in order. We did manage to get the Family together which was difficult because of COVID.

 

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