Dan, VIC

Diagnosis: High grade neuroendocrine gastric small cell carcinoma

This was supposed to be my youngest daughter’s year. All the pressure of Year 12 and I come home and hijack it by dropping the C word. A week earlier I went to the local GP because I couldn’t burp, other than that I was feeling fine, and thought that this was a total waste of the doctor’s time. I was given a prescription for some tablets and was convinced that I had nothing to worry about. Two days later the symptoms were worse, and so I went straight back to the GP and asked what the next step was. I wasn’t really in any pain, just a grumbly tummy and annoyed that I still couldn’t burp. The next day I was booked in to have a gastroscopy, and less than 48 hours later I was told that I had a rare aggressive small cell cancer in my stomach…

Things happened quickly from that point onwards, scans, meetings with surgeons and oncologists, the discovery that whilst I had cancer in my stomach it wasn’t stomach cancer but a high grade neuroendocrine gastric small cell carcinoma. Within a week I was starting chemo and my exponential learning curve about cancer and my body. I discovered I had one of my kidneys located in my pelvis (least of my worries), I found out what role the stomach plays and that you can live without one (mind blowing), I learned how to self-inject, my hair fell out, and water started to taste metallic. I also realized that the battle with cancer is just as much about the mental game as it is physical.

I win my mental game by staying positive and keeping my world big. I’m learning to be more vulnerable and honest with people about how I feel, I use every opportunity to catch up with different friends for a coffee, or a dog walk, and I actively avoid people that steal my energy.

Even though I have an amazing family and group of friends, I often feel sad, angry, lonely, confused and struggle to articulate all this to those closest to me. I’m sure that this is a common feeling for those that have been diagnosed with a rare cancer. I know that I don’t have all the knowledge or tools in my kit to win the mental game by myself, so my family and I reach out to the amazing, experienced resources that are available at NeuroEndocrine Cancer Australia. It really helps to have someone that can validate how I am feeling or explain the processes and cycles that I will go through.

My three months’ worth of chemo has now come to an end; the latest scan has shown that the aggressive cancer has shrunk in size and I’m now ready for the next process that involves major surgery. Once again there will be a physical battle ahead as I get better post-surgery, but also a massive mental game as I adjust to a total lifestyle change without a stomach and living life from scan to scan with everything crossed. Wish me luck!