My mom's been fighting stage IV nsclc since June, and recently had a setback where they found a brain met had grown. When she was first diagnosed she was very proactive, writing down everything the doctors said, finding out about the meds she was on, etc. However, in my opinion, she didn't start taking steps that she could have such as eating better and exercising, basically taking care of her body to deal with the radiation and chemo. Her doctor said it didn't really matter what she ate, and she has lost a significant amount of weight. All along my family has done a good job of keeping on top of things; my two sisters and I all live far away but my mom's siblings live near her and have been great about taking her to appointments and keeping track of things.
With the recent setback, I have this feeling like no one really knows what's going on. Her radiation dr. wants her to go get a second opinion before doing gamma knife on the brain met, but has said for her to start taking Tarceva. Her oncologist basically said she could go get a second opinion but that she probably shouldn't bother, and doesn't want her to start the chemo. My mom has also gotten very confused, whether from the tumor or chemobrain or the effects of radiation or whatever. In any case, I feel like we're getting close to the whole thing spiraling out of control, with no one really knowing what she is supposed to be doing or what she could be doing.
On top of that, I feel there are a TON of things she could be doing that she's not. I've talked to her about it a lot, and she either gets angry at me or just placates me and says she'll do it tomorrow. She'll eat better tomorrow, or she'll look into support groups tomorrow. I'm just really frustrated because i feel like this is the type of thing where you just can't leave any stone unturned, and we're just breezing past a ton of them.
Any thoughts? Thanks for listening.