My husband, my mom, my dad, and I sit around a round table at the hospital waiting for the genetic counsellor to join us. My husband is playing with a peg game in the room while my mom, dad and I discuss where to eat lunch that day after the appointment. It’s 11am. The genetic counsellor joins us at the table.
‘We received the results from your blood test and unfortunately, you tested positive for the CDH1 gene mutation’.
On December 5th, 2013 I had a solid 5 year plan. On December 6th, everything changed. Missing Cytosine…frameshift mutation…risk of hereditary diffuse gastric cancer.
This is my blog and my story about living with the CDH1 gene mutation
UPDATE: Dec 8, 2018
When I first started blogging, there were only a handful of young bloggers out there blogging about this “CDH1” mutation and contemplating or living without a stomach. This was back in 2013. When I first found out I was positive – like many 20 year olds at that time – I searched google for anyone else out there with this mutation. Social media hadn’t quite caught up with CDH1+ and there weren’t any support groups on Facebook.
Initially, I decided to start my blog as a way to keep my family members up to date regarding what I was going through and why I was going to remove my stomach. This quickly spread to them asking if they could share my blog with other members of the community. Eventually, I decided to go public to help others with their decision making progress and to spread awareness about hereditary diffuse gastric cancer syndrome.
Currently, it is a lot easier to find bloggers who are blogging during their contemplation phase as well as early after having their total gastrectomies (within the first year or two). However, there are few of us who have continued to blog through the years and I believe it is because we all doing so well – we are too busy to blog (myself included)!
At this point, my goal continues to provide a dialogue regarding living with the CDH1+ mutation and the stomachless life after removal at a young age.
Thank you all for continuing to follow my journey – it’s been a great 5 years blogging and counting!