Just as I was settling into retirement with my high school sweetheart and husband Craig, we received some shocking news.
The doctor told me I had a rare form of pancreatic cancer, which had spread to my liver.
I was at first confused. I had very recently survived almost a year-long battle with breast cancer, but this new cancer was unrelated. I’m told chemotherapy and surgery together aren’t enough this time around.
My prognosis is dire unless the regrowth of the rare cancer can be prevented. And it seems the only effective medical treatment is a drug, which for reasons I’ll explain, is effectively unaffordable.
So that’s why I’m telling you my story – thank you for taking the time to read it.
Jan with pump and flowers after first chemo March 2023
The drug I need after chemo and surgery is called Olaparib. Without this medication, my life expectancy is very limited.
With it, there could be many years of watching my three sons, daughters-in-law and seven gorgeous grandchildren living life. Living to see my grandchildren find partners, even having great grandchildren.
Nanna and Ronin (Left) and Nanna and Juniper with their completed jigsaw puzzle (Right)
With it, Craig and I can make plans for our next stage of life together – spending time each other quietly at home, or travelling or camping. And I can stop investing in my now extensive collection of scarves, turbans and hats!
Olaparib stops some BRCA (genetic) cancers like mine from growing back but because mine is such a rare cancer they haven’t done enough research yet for the drug to qualify for a government subsidy under Australia’s Pharmaceutical Benefits Scheme.
That means a four week supply of Olaparib will cost nearly $7000 – way beyond our means.
My oncologist is an amazing doctor and she is working really hard to get a free supply of the drug for me.
She has asked Astra Zeneca for free compassionate supply. She has asked for free supply in exchange for the research data she could give them. She also applied for me to be part of their drug trials of Olaparib in people with BRCA pancreatic cancer. It was heartbreaking to learn that I wasn’t accepted for the trial because I’ve already survived breast cancer.
That’s why we’re doing this. Crowdfunding doesn’t sit well with us, but our own financial resources are limited so here we are.
Jan and Craig camping
I’ve gone through six months of chemotherapy for a second time in just over a year, completing all twelve cycles of Folfirinox, one of the harshest chemotherapy regimens.
Chemotherapy has been very effective in reducing the size of the lesions and I’m now waiting for surgery - a liver resection and removal of the affected lymph nodes.
But access to Olaparib is so far, the missing piece in the future treatment puzzle.
I’ve been very blessed to be so well supported by Craig and all of our family, by wonderful friends and our local church family. I’ve received excellent care from so many people including doctors and oncology nurses, and I’ve had so many people praying for me, even people who don’t know me personally!
Last Christmas was a such a joy – I was seemingly back to my happy, healthy self after the successful breast cancer treatment – the Christmas cooking traditions proceeded as if nothing had happened, my gingerbread reindeer a particular favourite with the grandkids.
Noah and Gingerbread Reindeer
2023 hasn’t gone as we expected – but we’re hoping and praying for many more wonderful times ahead. Thank you again for reading my story and thank you in advance for anything you’re able to give.
Jan and Craig at Mt Tamborine