My name is Linda Wilson. I am a wife, mother, sister, auntie, friend and a registered nurse. Oh, and I should mention that I am a fishing fanatic, (the latter I believe is my therapy). And I am living with pancreatic cancer.
In June 2012, I experienced some vague symptoms of reflux, upper left abdominal discomfort, and the most unusual thing; my dogs Bailey and Millie were practically shoving their snouts in my mouth every morning. They usually want a cuddle and are prone to licking but this was different. Something was not right. After a visit to my local doctor I was ordered routine bloods, with an ultrasound order if I felt I was not improving. The dogs continued to be overly interested in my mouth so within a few days I had the ultrasound. Unfortunately, this showed a lesion on the pancreas and a CT confirmed it was probable cancer. The phone call with those results totally changed our lives.
I looked at my family and wondered how long I had to share my life with theirs. I knew the average survival time was around 6-8 months for pancreatic cancer. My decision was made. I was not going to waste a minute of my life being miserable! The support from family, friends, colleagues, and of course, the great team of health professionals, has been humbling. I don’t think for one minute this is my journey — it is our journey.
In July 2012, I had a distal pancreatectomy and splenectomy. The results of the surgery were very promising; no lymph node involvement and the tumour was contained. Then there was six months of Gemcitabine chemotherapy, which commenced in September and was completed in March 2013. All test results were good; I didn’t have to be seen for two months. Unfortunately at my two month review the tumour markers were rising and more scans were ordered. The Pet scan and tumour marker results indicated the cancer had returned. I was feeling really well and was not convinced of this decision so I decided to seek a second opinion.
The second opinion confirmed I was to start a new type of chemotherapy, Folfirinox. This entailed about a five-hour infusion on the Wednesday, going home with a pump pack of chemo on and having it taken off on Friday. I would return to work on Mondays and this helped to retain normality in a life that was filled with uncertainty. I know some people thought I was mad but this worked for me. I did delay commencing treatment, as I needed some mental health time, which entailed a fishing trip to Marlo, a beautiful town in East Gippsland where the Snowy River meets the ocean. This is the perfect spot for fishing, kayaking and the most incredible sunsets from the deck of the Marlo Hotel; a good for the soul place. I remained on this treatment until December 2014.
In the month leading up to December my blood tests for neutrophils were low and I had delays in treatment. The tumour marker started rising and I was advised at a visit to the oncology clinic that my treatment was being stopped. I asked about having the injections to assist my bone marrow to recover only to be told this was not normal protocol. When I asked why, I was told because I was not considered curable! (Any wonder pancreatic cancer hadn’t made any progress with increased survival rates!) A letter to The Minister for Health was in order — not that it changed anything at this point but it was very therapeutic!
After further discussion including another oncologist, I recommenced chemotherapy with injections to help my bone marrow to recover. I was advised it was time to change to Abraxane and Gemcitabine combination. This was to be organised.
Then came the phone call from one of the chemotherapy unit nurses asking me who was paying for the Abraxane. I explained it was now on the PBS. But alas, more bad news; Abraxane was only funded for someone diagnosed with advanced pancreatic cancer as their first line of treatment, not their third line of treatment. God love those chemo nurses — I was told not to worry. The nurse would make some enquiries.
The next thing I knew, I was answering my phone to Katherine Logan from the John Logan Foundation. Katherine explained the work of the Foundation, how it was founded, and what their mission was. She asked me some questions and on the same day I had a phone call to say the John Logan Foundation had agreed to fund my treatment, for which I am eternally grateful.
To give hope isn’t always about a cure. It’s about allowing someone time to spend with their loved ones or time to achieve a goal; the reasons are as individual as each person is themselves. It may be allowing that person the peace of mind that they gave it everything they had, trying to beat the odds stacked up against them.
I have tolerated the chemo well, with the help of injections to assist my bone marrow to recover (even though it is not normal protocol!). One thing I have learned through this journey is you need to be your own advocate. By achieving more time, an oncologist with a new set of eyes reviewed my file. The CT and Pet scans ordered just before Christmas were normal, though my tumour marker had started to rise slightly. I was referred for a radiation oncologist’s opinion. The area that lit up on the Pet scan in 2013 is now being targeted with 30 rounds of radiotherapy; 23 down, seven to go (FINGERS CROSSED!).
It’s never over while there is HOPE. Thank you John Logan for your vision.