I mentioned in my first ever post that if it weren't for this forum I'd never have been prepared for this chemo. The blank stares from Onc's seem to be a part of their job...
Funny thing is I've had cancer and chemo before. In 1992 at age 2 I was on very intense treatment for Rhabdomyosarcoma. Then at age 10 I was on very intense treatment for Osteosarcoma. Then again for Osteosarcoma in the other leg at age 21, which recurred at 23. Now, at 25 I have colon cancer. My current onc didn't even bother to check for it when I presented with symptoms because I'm supposedly too young to get it; and all he told me was that I might have some numbness and tingling in my hands and feet and not be able to drink or touch cold things, and compared to all my previous chemo, this FOLFOX course will be 'nothing'.
I finished my first round today, and I can say without a doubt this treatment has some of the worst side effects I've experienced so far. My jaw is locking, my eyes hurt, and I reek of chemo so soon. Now I find out in this thread that the neuropathy may be permanent? That really takes the cake.
I do feel onc's need to be more upfront about symptoms and especially long term ones. Sure, be grateful that you're still here (it's a heck of a ride and anyone who can make it through deserves huge bragging rights) but I don't think we should be kept in the dark about what our bodies will be like afterwards.
Best of luck with the lingering effects - I hope they are at least manageable at some point.