What impact has NETs had on your life?
NETs has definitely changed my life. I went from being monitored for MEN1 from the age of 12 so was used to blood tests and scans and seeing specialists but routinely rather than rushed or just told to do something without much explanation. I went from a CT to surgery in a very short time. Primary was Pancreatic. I was one of the few in the country who had a distal pancreatectomy done with my surgeon using a robot. With that came questions, no one seemed to be able to answer, including the surgeon who was renowned for his work. I trusted him but unknowns are hard for most people really. Sometimes the Doctors heard that I worked in Health and assumed I knew more than I did so had to ask for a better explanation. I didn’t even know what a Gallium 68 scan was until people helped me understand on the Unicorn Foundation site and Facebook group. I’ve had more time off work than ever in my working career and after surgery it took a long time to get back to full time. In fact it was 6 months, and that came with complications. I had a pseudocyst diagnosed which was the complication. Between the diagnosis, tests, stents being put in and then a blockage, I’ve seen far more hospital than ever and I work in one. I have less energy, and feel like each day is a push to just get through. What has been harder than I expected is that people see me and “think” I am well. Invisible illnesses are seriously a tough road as people assume you are well. Emotionally, its been a rollercoaster ride but I am fortunate in my beliefs and write a gratitude list every day to remind me that there are still good things happening even when it feels like things are tough. I have an amazing life partner who has been by my side every step of the way and my Mum has played a big part too. I’ve been hit hard in a short time but I have an amazing network of support which is ultimately the thing that holds the glue together.
What has been most helpful to you in your NET experience?
The Unicorn Foundation would have to be the one place that I know, with certainty, I can rely on for information, help of any kind and direction to where to find answers. Kate is amazing, she is kind and understanding and although she probably answers the same questions so often, you wouldn’t know it. Her compassion is something that I am sure everyone would agree is a beautiful asset to have. The other thing is the Facebook group for Unicorns. People are supportive and informative in a way that makes you feel comforted and surrounded by love. I can honestly say anything and ask anything knowing it’s a safe place to share and not be judged or looked at sideways or even bullied. Whilst those outside the home supports are absolutely necessary, having family and friends has also been a great foundation to go home to. Knowing that home is safe and I am able to just be whatever it is on that day is also helpful in the long journey. The thing is, this never goes away. I have had one surgery and now have just found more tumours on my pancreas and I know I have a pituitary adenoma so things don’t just stop once they remove x or reduce y, it’s a forever thing.
I am fortunate that my immediate Manager at work is also supportive as its important for me to “get back to normal” in some form when I am able to. Getting away from “health” that is constant is important to just take a break. Ironically, I work in health so at the moment, not much of a break but my job is also important for me to feel like I can contribute to my home, my patients and the staff who work for me.
What advice would you give to a newly diagnosed patient?
Don’t panic. I panicked at first. The word cancer doesn’t mean the end. I had a tonne of questions and needed them answered NOW. Nothing will change in the 24hrs of not having all the answers. Take time to breathe, talk to others who are in the same position to get a better idea of what lies ahead and whatever you do, don’t use Dr Google, it will only make things harder to understand. Use online tools sure, but make sure they are reputable articles or from a source that is reliable. Make sure there is time for you, just you, to reflect, or to enjoy life. I have just decided to teach myself guitar as I needed an outlet and due to my physical energy wavering at times, I am sometimes just too tired to do the things I used to do. So I have found a new creative outlet. Getting things out of your head and onto paper, out to another person or any other way is so beneficial to anyone starting to go through this. It’s not easy but it is definitely something we can all get through. You, newly diagnosed person, will never be alone on this journey!