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Sounds like you need to talk to palliative care people...those health professionals who look after those people who are living out their last days. I don't think they can tell you precisely what to expect because everyone is different. If you don't feel like it's the end then it probably isn't. From a medical perspective, doctors may feel that there is nothing else they can do for you except make you comfortable.

My article was intended to educate people, patients and families on what do expect with these conditions and symptoms, not deal with such a prognosis. I don't know that anything can really prepare you for that (although I have a more "religious" perspective on that that I'll share through the messaging board if you like). Perhaps you would like to contribute to Empowher through a HerShare article, or series of. Kind of chronicle what happens from here. It would certainly help those patients and families who are in the same situation, wondering the same questions. It would be a great legacy to pass along.