Hi Chris
Im so very sorry to hear about your husbands illness. I'm sure we all here know what a burden BC is for not only the person with the illness but the (often unsung) people around them. I myself sometimes forget the effect that this thing I'm going through has on those around me. In fact my twin sister got pretty angry with me a few weeks back for feeling too sorry for myself. She was right too and it snapped me back out of it again! Your response to my email is a reminder for me and others about our responsibilities to other people and I thank you. And it was beautifully put.
I have already decided now to go ahead with my cystectomy on October 18th. I'm not happy about it (!) but I am satisfied that its the way ahead for me. I feel anxious now to get on.
Im no expert on the health system in the US (I'm English and I am assuming you are US) but maybe it's easier here in UK because of the health system. I'm not sure. But I haven't had to pay for my treatment. We have something called National Insurance here which is kind of a mandatory insurance premium. As far as living expenses go Im stuffed! But i'll get by. And I agree totally with you about the lifetime of poverty thing you said.
My whole decision making process has been tortuous. I've often thought of stopping treatment myself and just walking away from the whole deal. It's also too easy sometimes to just decide to forget its happening. I have no symptoms and all the decisions I've made are based on things I've been told and cannot feel. I've been through all kinds of mind changes. But I'm ok with where i am now. You don't say why your husband refuses treatment. Is it the money? Is he anxious about the treatment? Has he been given a prognosis? Is he getting advice from anyone or counselling? When you say you know in your heart that it's too late is this from something you've been told? Because in my experience with cancer (i lost my dad and my sister to it recently) the only one solid thing I know is that nobody knows! We all make guesses based on other people's experiences but the future is unwrit for each of us. Sometimes no matter what the experts say even.
Lou is on the money with what she said too. And there are lots of similarly positive stories out there. Try not to give up no matter how dire things seem. Although it can be exhausting trying to be positive all the time (and a bit weird, frankly!) Has you husband talked with others and read stuff on this site? I have found it incredibly useful speaking to patients from the hospital I am at. Actually, the most useful thing I've done. Oh except for visting the Web Cafe of course