Our beautiful Dad — father of four, Pop to nine grandchildren, and loving husband of 41 years to our Mum — was tragically diagnosed with Stage 4 Adenocarcinoma Pancreatic Cancer in late March 2025, at just 67 years old. One of the deadliest cancers in the world, it came as a huge shock to our whānau.

Dad had always been active. Right up until a week or two before his diagnosis, he was biking hundreds of kilometres some months and playing golf two to three times a week. He had no obvious symptoms apart from a gradual increase in fatigue over the previous 6–12 months. During that time, he saw his GP multiple times and had several blood tests, all of which came back “within normal range.” The last set of tests, on 24 December 2024, was also deemed “normal.”

In early March 2025, Dad caught a virus from his grandchildren. Although the initial symptoms went away after about a week, his fevers continued. After several GP visits, he was sent to hospital for more tests due to suspected pneumonia. A chest X-ray on 22 March showed his lungs were clear, but the top of his liver was visible — and it revealed multiple spots. This prompted further testing, which ultimately led to the devastating diagnosis of Stage 4 Pancreatic Cancer.

From that moment, everything became a whirlwind. We were all absolutely shattered but quickly put our “education caps” on and began researching and advocating for the best possible care for Dad. As a family of well educated health professionals we’d seen firsthand the disparities that exist within our healthcare system. We knew how vital it was to advocate fiercely for him.

Following his diagnosis, Dad spent around two weeks in hospital. During that short time, he went from having no pain to experiencing significant abdominal pain, showing us how aggressive the disease was — and how precious time had become. Dad was referred to oncology through the public system, where the initial appointment could have taken up to six weeks, even with the urgency. Thankfully, Dad had excellent health insurance through AIA, and our brokers at Finsol were proactive and compassionate from day one, securing prior approval immediately and throughout the 5 months. We’ll be forever grateful for that.

We requested a private referral (which we were not initially offered) and personally called the clinic, begging for an urgent appointment. The oncologist kindly extended her Monday clinic — just four days later — to see Dad. During that appointment, Dad asked where he would be in a month if he didn’t begin treatment. The oncologist paused and gently said, “Considering the speed of how things are moving… I don’t know.” We understood what that meant.

Dad was scheduled for a port placement the following week, but again we requested an earlier date, and it was moved up to Thursday — just three days later. Chemotherapy began the following Monday, exactly seven days after his first oncology appointment.

During that first appointment, we asked about genetic testing — something considered standard care overseas but not routinely offered here. The oncologist agreed, though it likely wouldn’t have been suggested without our request. We also asked about a celiac plexus block, a nerve procedure used to manage severe abdominal pain from pancreatic cancer. Research shows that performing this procedure early can greatly improve quality of life and reduce the need for heavy pain medication. Our oncologist agreed to put through an early referral for this. However, in New Zealand, it’s often not offered until pain becomes unmanageable with medication or not at all.

The oncologist wasn’t sure if it could be done locally and advised us to ask hospice, while she also looked into it. While Dad was having his port placed, I spoke directly with the interventional radiologist, who confirmed he could perform the procedure and Dad was booked in for two weeks later. In hindsight, that decision was a blessing — Dad never had to increase his pain medication for the rest of his illness. He stayed as mentally clear as possible and avoided the heavy side effects that strong pain medications often bring.

At one of our early consultations, I also requested Creon, a pancreatic enzyme replacement therapy routinely prescribed for all pancreatic cancer patients overseas but not here. Again, this was agreed to after we asked.

Dad’s fevers — a rare symptom of pancreatic cancer — were eventually diagnosed as part of a paraneoplastic syndrome, where the immune system reacts to the cancer. He was put on steroids, but these alongside everything else that was going on medically caused severe muscle wasting. After researching alternatives and consultation with the oncologist, we requested to decrease the steroids and introduce naproxen, which has shown equal or better results in managing this syndrome. The oncologist agreed, and thankfully it worked well for him.

Dad began FOLFIRINOX chemotherapy one week after his initial oncology visit. He handled the first few infusions well, but the side effects, especially fatigue and weakness, became increasingly difficult. To prevent neuropathy — a common side effect — we ordered special iced gloves and socks after learning about them through research. They worked for him: Dad never developed hot-cold sensitivity or neuropathy.

Genetic testing later revealed that Dad wasn’t a carrier of the major targetable mutations, but there were some minor mutations linked to clinical trials overseas. Sadly, mainly because of his paraneoplastic syndrome, he wasn’t well enough to travel and take part. If he was, we would have jumped at the opportunity.

Eventually, Dad stopped responding to FOLFIRINOX, and it became too toxic to continue. His oncologist switched him to Gemcitabine and nab-Paclitaxel, another first-line treatment overseas. Unfortunately, nab-Paclitaxel is not publicly funded in New Zealand. Once again, insurance came through quickly, and Dad started this combination the following week. Although it caused fewer side effects, his cancer was simply too aggressive and did not respond.

Dad passed away only weeks later on the 27th August 2025 — the worst day of our lives. But we take comfort knowing we did everything possible and gave him the best chance we could. This is only a small snippet of what he went through in those 5 months. He remained comfortable, alert, and mainly happy during his final months, and we spent as much time with him as possible — taking him out every day and keeping him home, as he wished.

We know this experience isn’t everyone’s reality. Not everyone has a large family, a medical background, or access to health insurance. That’s what breaks our hearts the most. Everyone diagnosed with this disease should have access to the same information, options, and support — without having to spend hours researching or fighting for care.

That’s why we believe a foundation dedicated to pancreatic cancer awareness, advocacy, and education is so important — a place where families can find up-to-date, reliable information and learn what’s possible, not just what’s standard.

We are deeply grateful to Dad’s surgeons, oncologist, nurses, hospice, and everyone who cared for him. They were all amazing; kind, compassionate, and receptive to our questions, doing their best with limited resources. Dads oncologist looked into every request I made, almost to the point where I thought I would be driving her mad; she gave every one of these requests careful consideration and acted where appropriate. But the truth is, the system is stretched to breaking point. In regional areas especially, doctors simply don’t have the time or capacity to stay up-to-date with every medical advance worldwide for every cancer, disease etc. It simply is not possible for any human being.

For a disease as aggressive as pancreatic cancer, this delay in knowledge can mean the difference between months of quality life or none at all. Dad’s story — and the story of our dear family friend, who died within weeks of her diagnosis after long delays in the public system — shows just how deep the inequities run.

Dad’s journey has shown us that advocacy matters. Information matters. Equity matters.
For every family who walks this path after us, we hope the foundation can provide a space of comfort, information and support in one of the darkest times you will ever experience.