It was in the middle of one of Victoria’s lockdowns on a Saturday in September 2020 that my life quickly turned upside down.
My wife, Kim and I were running errands, picking up produce from local growers around the Bellarine Peninsula where we lived. After arriving home, I developed severe abdominal pains, from what I thought was from a dodgy croissant I had eaten earlier.
The pain became more intense over the day, and Kim recommended I head to the A&E department of Epworth Hospital in Geelong. Being a typical bloke, I was sure that the pain would naturally pass, and everything would be alright in the morning. Afterall, I was a 51-year-old male in good health.
This was not the case.
Early Sunday morning, I presented to Epworth’s A&E department, received a CT scan, and given strong opiates to relieve the pain. The scan identified a “mass” where my appendix would normally be. I was lucky, and grateful that a gastric surgeon who was on rounds that morning saw my scans, noted that they looked odd and booked me in to see him the next day.
I started suspecting I had some kind of cancer but could not rationalise that I felt fine the other day but could have something seriously wrong with me. I had no symptoms otherwise and could only recall a similar abdominal pain six months prior.
The next Monday became a chaotic day of meeting the surgeon, and being referred to another specialist surgeon, getting bloods done and booking a Dotatate PET scan. It’s not until you are inside the system and need the specialist equipment and incredibly talented medical professionals that you appreciate that, here in Australia, and particularly in Geelong, how wonderful our healthcare system is. I have lived overseas and appreciate how good we have it.
By Wednesday, I had undertaken the PET scan, spending 2-3 hours at Geelong University Hospital and on Thursday, seen my new surgeon who told me I had a suspected 5cm NET on my large intestine, and that I needed to head for the hospital the following Monday. I went home to my family; we cried and spent the next few hours completing a jigsaw mostly in silence as the gravity of my situation sunk into all of us.
Weirdly, apart from the initial shock, I went into full project management mode, working in my head all the things that I needed to do before going into surgery.
I wasn’t prepared for the surgery. Back then, no visitors were allowed in the hospital. Kim and I held each other for the longest time, not knowing how or if I was going to come out of this.
Surgery lasted for 6 hours. The surgeon removed a 5cm tumour and 50cm of bowel via laparoscopic resection along with a bunch of lymph nodes. My recovery took a long time. The physical scars healed relatively quickly, but mentally, it took longer. I began questioning the choices I had made, particularly choosing work and career over family. I had missed too many significant events over the last 30 years, and it finally dawned on me that without my health, there is nothing. At that time, I decided that I needed to wind down from work.
It was soon after my surgery, Kim asked me if I have had any regrets or if I wanted to do something that I had always wanted to do, but not had the time.
I responded that I never finished my wine making degree back in the late 1980s and that it would (excuse the pun) fill my cup making some wine and hopefully selling some of it.
At that point, around October 2020, my epiphany began to take form. With a clear PET scan in March 2021, I had found 80 acres in Port Arlington, with 15 acres of vines and we bought it mid-year! My life was starting to take an unusual, but totally affirming detour.
Though this, I kept getting the Chromogranin A blood tests and Dotatate PET scans on a six-monthly basis.
On my two-year anniversary scan, in October 2022, I didn’t feel right going into it. I had no symptoms that I could put my finger on, but I was more anxious than other scans on this one.
My intuition was right. I had the scan on a Thursday. On Monday morning my surgeon called and asked me to come in right away. I was at a café on my own and returned home to Kim with the news. Both our hearts sank. We knew what it meant.
At lunch, we were in the doctor’s rooms. I had another NET, around 50cm from the original one. The good news was, that she could operate on me the next day.
So that was that. I followed the same routine and within 5 days of getting the scan, I had another smaller (but faster growing) NET removed from my small intestine, along with another 15cm of bowel.
According to my Oncologist, reviewing my file and seeking a peer review, I am a “curious case”. Having two Primary NETs two years apart is incredibly rare. It highlights that there is still much to learn about this kind of cancer, and of the importance of continuing research. Moreover, it reinforced the need to continue to get testing done, and not to become complacent.
Recovery was quicker this time around, but I had seriously experienced a drop in enthusiasm for my corporate role, and by November I had expressed my desire to retire from my job.
It’s July 2023 now and I have 3 weeks to go before I am finally out of full-time corporate work and into viticulture and winemaking with my label, Circulus Wine. I am in remission thankfully, getting the all clear after my six-month scan.
I couldn’t be happier. I am not travelling long haul like I used to, I am more connected with my family, community and to my life’s passion, winemaking.
The change has been good for my soul. Cancer has changed me, in a positive way, and perversely, I am grateful for the NETs. They forced a rethink of my priorities and to focus on happiness. I am also mindful that I am lucky to have caught it early and surgery was an option for me. It has allowed me to take stock of what really matters and what are the important things in life. Life really is short, and how you spend it, and who with is critical for enduring happiness.
For anyone who has read to the end of this story. If you have a NET diagnosis, act quick, keep up the tests and referrals, and make positive choices around the people and passions you love most and who love you.
There is light at the end of the tunnel.
