Hi. My sister has advanced bladder cancer-- so far it has spread to her kidneys and her lungs. She is a very private person and so she is not always telling us everything. She's also understandably very scared and it doesn't seem she is always asking her doctors for all the information. She has told them she doesn't want to know about prognosis.
She did two kinds of chemotherapy, both of which did not produce a response. Not sure if she did MVAC and cisplatin, or GC-- she didn't tell me when I asked and I'm not sure she's totally clear on it. They've said she should maybe look at clinical trials but they are not giving her a lot of information, maybe in part because she is saying she doesn't want to know.
Her urine is being redirected. She seems quite weak to me and is losing a lot of weight. Her mind is as sharp as ever but I worry about the amount of anxiety she is dealing with.
My biggest concern is that she seems to be in a lot of pain, and that pain is not controlled. She has had chronic UTIs, was on Vicodin for a while, and then Oxycontin and the suppositories. She is still in pain and is having a lot of trouble digesting things, has become hesitant to take the pain pills. I think they should give her a Fentanyl patch, but what do I know?
I want to know how best to help her. Most of all, I want her pain managed, which isn't happening now. I am worried about her quality of life and don't know how to advise her-- whether she should travel for clinical trials, whether some treatments might be more helpful than others (like radiation to reduce swelling in her pelvic area, where she has a lot of pain). I don't have much information and I'm not in a position to get it. I want to respect her privacy and still help her as much as I can.
Also, we live at opposite ends of the state and I know she won't tell me when she really needs help. She lives alone and I am afraid that things will be really rough and she won't let me know so that I can be there with her. I want to give her indepedence and privacy, and also I need to be at work when I can, but she comes first, always. I am having a hard time figuring out what my role is and what I can do to help her.
Advice, anyone?
Jules