Remember back in my early early blog posts, I spoke of the Gastrenterologist who did my original upper endoscopy with biopsy in late 2013? Well I saw her again but this time, while visiting a family member I had never met before.
Until 2009, my mom had never met many people from her father’s side of the family. Mainly because he passed away from stomach cancer hours before she was born. After my mom found out she was positive for the CDH1 gene mutation she learned that her cousin was going to have a total gastrectomy at a local hospital. A cousin she had never met before. Mom was able to get in touch with her and was able to meet her for the first time while she was recovering. It was during this time, my mom made the decision to have her prophylactic (arguably curable) total gastretcomy.
Fast forward to now. Mom and I found out from her cousin that her son was going to be having his total gastrectomy at a local hospital. It would be performed by the same gastroenterologist I saw early last year. At the time, I was her first CDH1 case.
He had his surgery on Monday and mom and I were fortunate enough to be able to visit him on Tuesday as well as Friday. Just before visiting him on Friday, we ran into my original Gastroenterologist while she was doing rounds. I was super happy and excited to see her again. We were able to talk a little bit and she still offered to do more follow-ups with me locally as well as my screening for colorectal cancer. I mentioned to her that I had a post op complication and was getting dilations and she said she has only had 1 patient who had a stricture post op but that I was in very good hands with the physician I am seeing in Toronto. We were both puzzled about why one physician has patients who develop strictures while another does not. All and all, it was really great to touch base with her again and I’m super happy we crossed paths once again. Even though it was the first time, I have a feeling it won’t be the last.
Okay back to my visit with my 2nd cousin once removed (it took my mom, his wife and I a few minutes to figure out our relationship). Even though we had never met before, I didn’t feel like we were strangers, it just felt like I was visiting a family member I had known for a while. We shared stories and talked stomach-less shop. I had forgotten a lot about of a lot of the smaller things about being in the hospital (i.e. going for daily walks around the ward, the infamous wet sponge to keep your mouth moist, feeling afraid to eat your first stomach-less meal). His hospital recovery was amazing (even better than mine and I thought I was doing well!) and if he’s reading this now, I hope it’s from his home.
While we were visiting, his wife had mentioned that my blog was very helpful to them and I was really happy to hear it. I can see that people are reading my blog but it all became really real when his wife came up to me almost in tears telling you that the blog has been so helpful to them. It was really an eye opening moment.
On Friday evening, I was also able to meet his younger brother and his girlfriend who were also visiting. He is still deciding whether to be tested or not. I had forgotten about that time before being tested and remembered how stressful that time was for me. Since it was Friday evening, we all decided to go out for dinner before parting ways.
His brother said it best while we were in the elevator going to the main lobby, “It’s funny we are all brought together because of a gene that tries to kill us all”. Well said!
Dinner after the hospital visit
Cytosine Deleted - Life with the CDH1 genetic mutation 