Yesterday, I attended the Gastrectomy Support Group. The idea was that it might be helpful to hear from others who have gone through the surgery. After a nice presentation by a genetic counselor, I spent most of the session, wanting to not go through with this. Everyone agreed that they hated the nasogastric tube after surgery. It was painful, uncomfortable and they all couldn’t wait to get it out. Most of them also hated the feeding tube. The pain led some to give up on using it. One of my concerns is that they were all disciplined about tracking what they were eating. When I asked for advice they told me not to worry about it. “You’ll eat something, throw up and after a while you will want to stop throwing up and know not to eat that anymore.” And, “The pain and diarrhea from eating the wrong thing will force you to be organized”. Story after story about pain, vomitting and diarrhea. In spite of these awful stories, I realized one thing, they were all happy. Some had gastrectomy because they were diagnosed with cancer. Others were like me, CDH1 positive. Those that chose gastrectomy because they were CDH1 positive all had a similar story. After watching someone they loved fight cancer, the decision was easy. Just as I had read, everyone there had a different story. Someone couldn’t eat meat, another ate meat all the time. Some used wraps for sandwiches while another could eat bread and rolls. Some ate salads as soon as they got home, others didn’t start vegatables until months after surgery. Some couldn’t sleep flat because of reflux, others slept on their back. After listening, I realized some of my goals may be ambitious. For some, it was a few months after surgery before they were cleared for cardio. I guess that is part of the reason for me writing, just to keep track of my progress.
I was asked if I thought it was helpful to go to the meeting pre-surgery. I told them the truth, made me want to cancel my surgery. It also made me know that whatever challenges I face that, I will have support. There are others who have been through this. They offered pleny of advice. Which protein supplements work for them. Make sure to add probiotics. Liquids and chewables are required, no more pills. The one thing they all agreed on was that WINE was an important part of their diet. I’m grateful that there are people out there who are open and brave enough to share their experience. While last night was the first time I panicked about surgery, I have a better vision of what to expect, and I know that with each passing day, week, month, things will improve.