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.

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.

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.

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.