Unclear where there is support/ feel isolation

Posted by deemold @deemold, 1 day ago

Hello everyone- I've posted before- most recently on struggling with the decision to stop immunotherapy (I did). ..I am a 51 year old woman, diagnosed with stage 3 esophageal cancer in July 2025. I had my esophagectomy Nov 2025...and by what most people can see- I am "back to normal"- exercising and working, the only visible is some scars and the weight loss.

The issue I'm having is that everyone assumes that since I now look fine, I am fine. I had a village of support while in treatment and immediately around surgery...but it has been the post surgical world that has been a major challenge and when I try to discuss it with family and friends, I typically receive a reminder of just how fine I "should" feel...or that they seem to need validation from me that I am OK. I am having frequent eating and digestive issues (delayed dumping, frequent dilations due to strictures) resulting in procedures and other nonsense, had a horrible time with immunotherapy and had to quit it after 3 months, and really just don't always feel to great. I know many of you get it.

I know it is normal that I feel how I feel....but I don't know how to feel that way and feel isolated because everyone around me does not seem to be OK with me not being 100%. :(.

I suppose this is more of a rant than a discussion...but thank you for entertaining it.

Dana

Interested in more discussions like this? Go to the Esophageal Cancer Support Group.

goldenshadow | @goldenshadow | 1 day ago

I get it Dana once you’re done with your treatments and surgery. Everyone thanks your back to normal. I feel good most of the time. But you have days you don’t. I had my surgery first week of January 2025 and finished my chemo in April of 2025. I didn’t have immunotherapy didn’t need it. But I still have dumping once in awhile and days I’m fatigued. So I know where you’re coming from. Hang in there it will be get better! Scott

wklapp | @wklapp | 6 hours ago

I talked to a therapist who specializes in cancer patients and was herself treated for cancer. I’m very tired of answering the “how are you “ and choose to ignore it and change the subject. Frankly I’m so sick of me and this disease. More than anything I hate “positive attitude “
“your so strong “,etc. I’m functioning on anger fumes to fuel my motivation.

johnnyw | @johnnyw | 5 hours ago

I suppose support groups such as this are the best places to find those experiencing what we do. Yet, there is no substitute for in person contact. Friends, family, and, curiously, even your doctor, are made uncomfortable when a cancer patient discusses their emotional travels. Best wishes and healing to you!