If I think back to my diagnosis 5 years ago when I was told I have a significant risk of breast, thyroid, uterus, kidney and skin cancer, to now when I live a ‘normal’, happy, fulfilled life where I embrace my Cowden’s diagnosis with a positive, lucky outlook, it makes me realise life really can be what you make it!
Having received the diagnosis after my Dad was found to have the gene mutation means we have two gene warriors in our family, but really my unit (my amazing friends and family around me) are all warriors helping embrace life and the challenges it throws in a positive outlook. Our strength was highlighted around 4 years ago when both my Dad and I received the C word diagnosis for our thyroids. The biggest personal challenge I had was accepting that I had cancer. For around 6 months I said to people I had ‘funny thyroids’ and my real diagnosis was like a dirty swear word. But when I accepted this I then accepted everything about me, my Cowden’s, my thyroid cancer, my big head (symptom of Cowden’s), my skin lesions – it all makes my ditzy, disorganised, scatty self!
The next realisation was after my cancer treatment when my genetic doctor listed all the areas of my body at risk of cancer and crossed out thyroid. Which cut the list by a quarter! My thyroid journey wasn’t close to what some people go through with cancers, but I had battled it and got it off my list! Maybe this challenge of life with my genes isn’t as hard as I thought it may be.
My third realisation was when I started helping PTENUKI. Suddenly, I was not the only person with a list, and helping other people with my outlook helped me to accept my diagnosis and me for me! The power of people is amazing. I don’t read medical documents or leaflets because I don’t know if that is going to be my outcome (no one knows when it comes to genes), but I read blogs, Facebook comments and listen to my PTEN friends as they are the ones living and breathing with a list!
My future looks amazing, I am marrying my best friend next year, I am happy in my career and have the best time with my family and friends. So my advice (if people want to hear it) – if you or someone you love gets a diagnosis to do with their genes, don’t worry about the unknown, embrace every challenge and remember they are what makes you you!