What impact has NETs had on your life?
I was diagnosed a long time ago with MEN1 which meant I was being monitored for a long time in regards to the 3 P’s (Pituitary, Pancreas and Parathyroids). Short story there, I moved to a country town where an Endocrinologist who understood MEN1 was unheard of, let alone NET Specialist or anyone who had NETs diagnosed. So, several years had passed with not really having many scans done but I kept on top of blood work. I was to find out that normal bloods do not always indicate health or lack of tumours. One Doctor put me in the too hard basket and moved me on to several new specialists. One, I will be forever grateful for! He ordered some CT scans on pancreas (area). BOOM, life changed, forever. Tumours showed on my pancreas and life as I knew it changed. I had always been told that if I did get tumours, they would grow slow and this was no different to the one on my pituitary so wasn’t too concerned. I had gone back to my Sydney Endo by this stage and he referred me to a surgeon. I just figured we were going to have a chat about “watch and wait” as that is what I was used to. Wrong. I got to the surgeon to be told I was going to have surgery but before that, a multitude of tests. MRI here, PET Scan there, something called a GA68. Language that went straight over my head but having been in the world of “zebra” for so long, it was normal for things to go over my head at some point. So I did what I was told but started to be a little concerned. Scans revealed the best news (I can say that now, not back then), small and operable. Operable, are you kidding, surgery, uh oh! My surgeon was amazing. He told me he wanted to use a robot to take the tail of my pancreas out, keep my spleen and head if possible. Still another language really, I was still back at “do I have Cancer” without anyone being able to define it for me. So many trips from Dubbo to Sydney, time off work, not knowing, too much Googling. One thing I do know, is that I had more questions AFTER the appointment rather than during as it was then I got to digest what reality was. Surgery was tough, hardest thing I have ever done in my life but I try not to dwell too much on that as it has given me life, a different one, but still a life. It took a lot longer for me to get back on my feet and back to work (the surgeon said 4 weeks max – not this little duck). I had complication after complication. Emergency flights to Sydney etc so then there were more scans, tests, appointments and then they found more tumours, some on head of pancreas and some kind of spots on the liver. Off to Oncology and treatment. Treatment, that allows me to live a decent life today. Its been over 2 years now since surgery and 16 months on treatment. My tumours have shrunk so small they cant see them unless I have (yet) another Endoscope Ultrasound but I don’t want more anaesthetic in my body so choose to wait. Every month I get my butt dart (shout out to Mark for that saying) and I get on with my life. I am tired, I am weaker, I am foggy in the brain more often and verging on Diabetes (which they told me I would have within 2yrs) and a range of things I could list here that are changed. BUT, I am more positive, more cheeky, and absolutely living a wonderful life. I have been promoted at work (still working full time for now), I still run a dog rescue, I go on holidays and I wake up and get out of bed; every, single, day. I try to do things that make me smile more these days and I appreciate memories being made rather than things being bought. I’ve changed, and I am ok with that.
What has been most helpful to you in your NET experience?
I have a beautiful wife at home, a loving mother, a guardian Godmother and a small group of valued friends who have helped me all the way through. These people have watched me go through the most difficult thing in my life, call me out on my BS when needed but also hold me up when things got too much. Without them, emotionally, I wouldn’t have coped at all.
Information wise, the best thing for me was Kate at the Unicorn Foundation as well as the Private Facebook group. Some of whom I know call friends and family. I felt safe to say and ask anything and that is so powerful when fear sets in. These people get it, they understand that we are facing the scariest thing in our life and they do not judge the silly questions I asked because they too had them or at least thought them. Kate is worth so much more than I can say here. She was my go to, by phone or email and has a heart of pure gold. The Unicorn Foundation webpage was another resource for me as I got information to read from there.
Being such a zebra type cancer, no one is the same, the unknown is really difficult to digest and understand. Having other people who understood that I didn’t know what was happening but could relate was priceless and to this day, think of with gratitude.
Locally, I got the hospital kiosk to get on board for the NET Cancer Awareness Day and it was covered by the local paper and because of that, I was able to connect with the only other person in Dubbo who has NET Cancer. She read it and reached out to find me when she was diagnosed. Information and getting the word out there is important for our connections, particularly in rural settings like Dubbo.
What advice would you give to a newly diagnosed patient?
NEGU – Another shout out to my mate Mark. When I read this, I was like what is this guy on about, NEGU – “Never, ever, give up” and it took me a while to really feel this. I was so deep in my own world and pain and recovery and what next etc that I didn’t see that I needed to not just see this but live it. No matter what, don’t give up. This is not always a life sentence. I have Cancer but I am not sick. It is possible to live somewhat normally. Life will not be the same, but life is never the same after having a new experience. Stick close to those you love, allow them some time to digest it on their own as well as be there for you. Say yes more when people want to help. Find information that is by reputable people ie Unicorn Foundation. Use the Facebook private group to ask questions, all of them. Find a team of Doctors who understand NETs so they can help you navigate this. If you need to seek professional help via counsellor/psychologist, do it, I certainly did! Do whatever it is you need to do to get through this but always remember, you are not alone.
And whatever you do, don’t get onto Dr Google 😉