My journey began in August 2022 when I was living a life full of energy and fitness. I had a routine that involved cycling, attending aqua classes, walking, and gardening. However, things started to take a sudden turn. I lost weight unexpectedly, dropping from 63kg to 55kg, experienced frequent urination, and felt extremely tired. I went to see my GP, who suggested that if I was tired, I should rest. My doctor also mentioned that my weight loss was unexplained and ordered blood tests.

After the tests, I received a call from my GP informing me that my sugar levels were elevated but not high enough to indicate diabetes. The doctor suggested that we retest in six weeks and advised me to make efforts to bring my sugar levels down. I, however, found myself unable to exercise anymore, which was incredibly frustrating. I read everything I could to better understand my condition, but despite maintaining a healthy diet, my retest results showed that my sugar levels had continued to increase.

Soon, I began experiencing other troubling symptoms: cramping, bloating, and urgency after eating. In the next ten months, I had numerous blood tests, a stool test, and was tested for Coeliac disease. I even followed a gluten-free diet for a month, but nothing seemed to explain my symptoms. After every test, I’d receive a message saying my results were normal, with no follow-up or suggestion of further action. Frustrated, I found myself constantly making appointments and returning to the doctor.

In July 2023, during a visit to a locum GP, things started to change. The locum took the time to thoroughly review my medical records. By this point, I was experiencing pain in my back and discomfort in my stomach. The doctor expressed concern, noting that I had first visited my GP in August 2022 with similar symptoms. He prescribed Omeprazole to help with my stomach issues and advised me to meet with my GP in person within two weeks.

The night before that appointment, I noticed a pulsating sensation in my stomach, which reminded me of my mother’s aneurysm. I worried that I too might have developed one. When I saw my GP the next day, I was hesitant to speak up, thinking the doctor might think I was overreacting. But when I mentioned my concern about an aneurysm, she finally performed a physical examination of my stomach—something that had not been done until then. She agreed something was wrong and contacted the vascular department in Christchurch to arrange an urgent CT scan.

My husband and I drove to Christchurch, and by 2:30 pm that day, I had an ultrasound. The doctor, apologizing for the delay, informed me that there was no aneurysm. However, he also mentioned that they were planning to discharge me, which left me feeling uneasy. I had previously given permission for an urgent CT scan, and when I expressed my dissatisfaction, the nurse agreed to send me for the scan.

After the CT scan, my world turned upside down. A doctor came in, sat next to me, and with tears in her eyes, delivered the news: “Helen, you don’t have an aneurysm, but you have a large tumor on your pancreas, and it looks like it has spread. It’s probably cancer.” The following hours were a blur. I was sent to the surgical ward, and my husband was sent home, leaving me to spend the longest, most lonely night of my life in the hospital. I couldn’t help but think, what if we had gone home after the ultrasound?

The next day, a young doctor explained that I was in the best hospital in New Zealand for pancreatic cancer and that I was under the care of a top surgeon. I tried to stay positive, cracking a joke about the surgeon needing to “sharpen his knife” for the operation. I thought that they would simply remove the tumor, and I would carry on with my life. But that wasn’t to be. On August 8, 2023—exactly one year after my first visit to my GP—the surgeon explained that the tumor was inoperable.

I was then given three options:

1. Go home and spend my remaining time with my family, as I likely had only three months to live.

2. Begin chemotherapy, which might not be effective and could make me sick.

3. Participate in a drug trial at Dunedin Hospital, which was funded by Sydney University, if I qualified.

In shock, my husband and I agreed to be put forward for the trial. We had no idea what the future would hold, and as we waited for news, we felt disconnected from the world around us. The weeks felt like a lifetime, and friends and family would ask when the trial would begin—but we had no answers.

I, being a control freak, found myself frustrated. How could I move forward when everything was out of my hands? Desperate for a second opinion, I took matters into my own hands. I googled pancreatic surgeons in New Zealand, found a highly recommended professor, and even discovered his phone number. Despite my husband’s suggestion to wait until after dinner, I called the surgeon that night. He answered. I explained my diagnosis and prognosis, and he gave me a glimmer of hope, reassuring me that chemotherapy had come a long way, thanks to supportive medications, and might give me more time.

On September 1, 2023, my husband and I traveled to Dunedin to meet with the oncologist running the drug trial. To our surprise, the oncologist said the trial wasn’t suitable for me, as I was in too good of health. Instead, the oncologist recommended starting 12 cycles of Folfirinox chemotherapy, which, though toxic, had a chance of shrinking the tumor.

I didn’t hesitate— I was ready. I began the chemotherapy treatment and, by February 2024, had completed the full course. The tumor had shrunk by 50%, but surgery was still not an option. Despite this, I remained grateful to the medical team that had guided me through this challenging time.

Now, nearly 12 months since my chemotherapy ended, and 18 months since my diagnosis, I continue my journey. I’m about to begin five weeks of daily radiation alongside daily chemotherapy. While I know that my treatment is not a cure, I am accepting of my reality. I have a treatment plan in place and remain optimistic. My outlook on life has shifted—I’m determined to carry on with life as normally as possible for as long as I can.

I urge others to listen to their bodies and to persist when something doesn’t feel right. I encourage people to advocate for themselves and not settle for being told everything is normal without follow-up. It’s vital to get a second opinion and push for further investigation, especially when a diagnosis remains elusive. Despite being given a terminal diagnosis, I choose not to let it define me. I believe in exploring all options and not focusing on the negative aspects of treatment. As I face each challenge with strength and a positive mindset, I remain deeply thankful for the love and support of my family, friends, and the healthcare system that has treated me with such care and compassion.