The support that I see mounting around this group that has CDH1 is phenomenal. Everyone is so very supportive of each other and it’s good to hear everyone’s experiences with Doctors and health facilities and their recoveries.
It’s nice to hear about the trials and tribulations of the recovery and what I could possibly expect.
My fourth endoscopy is in a month, I see many people getting their first and a malignancy is found. I feel for each one of these people that not only have they just found out about their genetic mutation that they right away have to jump into getting their stomach removed.
I don’t know if it’s normal or not but waking up in the middle of the procedure thinking that my esophagus is going to be ripped out is excruciating. Slowly waking up hearing the doctor, getting panicky and falling back in to la-la land. It’s always an adventure, but at least I get 2 whole days off work and I am taking control of my health. You’ve gotta see the bright side of things every day. Live one day at a time and enjoy every minute of it.
My Auntie is the next in our family to get the surgery, it wasn’t supposed to be until the end of next month, but it was moved up to Monday next week. It has been a while since we have gotten together as she doesn’t live in town. She and my Uncle came down this past weekend to have a big turkey supper before the big day. I realize I need to make a better effort to visit with family no matter how far you need to go. They are so important and such an amazing support system.
Please find it in your heart to say a few good words for her while she undergoes surgery on Monday.
Hoping all of you out there are doing well if you are recovering, getting treatment or making tough decisions. Stay strong, empowered and keep your chin up!