After treatment: Unclear where there is support, feel isolated

Posted by deemold @deemold, Jun 17 10:27am

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.

Colleen Young, Connect Director | @colleenyoung | 5 days ago

In reply to @deemold "Thanks to everyone for support. I think what adds to this is also a funny coincidence...I..." + (show)

@deemold, I can imagine that needing/want support or understanding from others is a reversal of roles that stands your world on its head. You're usually the listener, the shoulder, the guide. I bet the burden of people expecting you to bounce back to be the reliable rock is annoying to say the least.

Where does one go with fear of recurrance? That's a good question. As a therapist, how to guide people dealing with fear? Are there any parallels to draw on?

deemold | @deemold | 4 days ago

More than anything- both professionally and personally, it's about validation. The fear is so very real for all of us- I don't let it run my life, but rather accept that is is there...and in fact, likely normal given going though and living with cancer/treatment/surgery/etc.
Sites such as these are a solid source for validation that what I am thinking/experiencing is normal...Things just feel sideways when my loved ones either cannot validate that something might be scary for me. I am often just seeking a solid "That makes sense" or "Of course you would feel that way"....rather than the typical response about how I am strong or that "You can't think that way".
If I had crawled into a hole I'd get the desire to try and pull me out of it...but honestly, since that was not the case, the fact that people feel the desire to blow sunshine up my ass at times is exhausting. I get it...and I know it is well meaning....but still....

russg8946 | @russg8946 | 3 days ago

My only thought would be to not think about what others think. Of course people want you to be 100%. That’s normal. You’re not alone with that. I have esophageal cancer, and I had part of my esophagus removed. It’s a long road. What was normal, is in the past. I live in a new normal now, or whatever it’s considered. The nutritionist I have always tells me relax, take your time, and enjoy your food. I am trying, it’s not easy.
Don’t think you’re alone though, many of us are here with you.