It’s been 24 hours since I discovered that I have a mutation in the CDH1 gene, and what an emotional 24 hours it’s been. As soon as I read the words “The CDH1-mutation has been detected in your blood sample”, I broke down and sobbed uncontrollably.
I know a lot of people won’t understand and some may say it’s nothing to worry about – but when it hasn’t even been a week since my uncle’s funeral, the news hits even harder.
Everybody hates the C word (I’m referring to the six letter one), known as the “K-ord” in Norway. People don’t want to talk about it and I bet almost everyone has been or will be touched by it in some way during their lifetime. After the third person in my family was diagnosed with stomach cancer, doctors soon found a link and realised that a mutation of the CDH1 gene was to blame.
I didn’t know what my odds were of having the mutation since my dad hadn’t had the test done, so in August, I took it upon myself to see my doctor in Norway and was referred to the genetics department in Bergen.
5 weeks ago, I was sitting anxiously in the waiting room with Bjørnar at the side of me. We were both invited into a room with two Doctors, where we sat and talked at length about stomach cancer, genetics and the tests I could have done if the result were to come back positive. I was also told that I was the first potential case in Norway with the CDH1 mutation, so they were very excited to be meeting with me!
They told me that I would receive the results in 4-6 weeks and during this time, my family insisted the test would come back negative. I on the other hand, did try to mentally prepare myself as much as possible for the latter. After all, I knew I could potentially be opening up a can of worms!
So since I’m back in England now until late December, my next appointment isn’t until January where I will be having genetic counselling and discussing what to do next… Annual gastroscopies or to have a total gastrectomy?!
On the plus side, since I’m the first case in Norway, I can be their guinea pig! 😀
(I’ll be keeping my readers updated with my healthcare journey in Norway not only to help raise awareness, but also for my own sanity. After all, I think if I bottled it up and kept it in the dark, it would eat me up alive!)