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
What I've read in your post doesn't tell me what your husband is facing is hopeless, believe me as I've been through this myself. I had deep muscle invasive fast growing TCC and I've only had RC with an ileal orthotopic neobladder. I've had no chemotherapy at all, and I'm 2 3/4 yrs cancer free. Tell your husband it doesn't necessarily mean his life is over, and there are many options out there for him. It's also possible that it could be a superficial BC, and that's something he'd have to have a urologist confirm by his having a TURBT (where they do a biopsy and remove the tumor). I hope he will listen to you and consider other possibilities to his situation other than death.
Let us know how it goes, and you're in our prayers.
Ps...24 September. I just reread your post and see where I missed that your husbands doctor called it muscle invasive, but he doesn't know how far. I apologize for suggesting it might be superficial, which it wouldn't be if it was muscle invasive. However I continue with my assertion that his life is not over, and he can have a very full and active life still. I do hope you'll be able to get him to read some of the story's on the WebCafe, he will most certainly find many stories of people who continue to do what they've done in the past (some don't, but). Both Rosie and Wendy have given you great information about how to find medical care that doesn't have to cause you to go broke in the meantime, maybe if he knows about that he might be able to think about having a future after all. Good Luck, and I continue to include you in my prayers.
Here is something to think about when considering whether to have your surgery or not. I am the wife of a man with BC. He had gross hematuria for 1 1/2 years before saying anything to me or seeking medical attention. The reasons he gave me were, #1 he thought it would go away. #2 We didn't have insurance. Well, I forced him to the doctor. The doctor did the IVP, the cystoscope, found a 1 inch tumor, removed it. But, the doc told me then, it had started to go into the wall. How much, he didn't know. That my husband would need a CT scan. So, I said do it. In 1 1/2 weeks and over $10,000 in medical bills, guess what? Yep, there is thickening of the bladder wall. Guess what else? My husband won't have further treatment. He refuses. Won't even consider it. His job is also physical and a high risk group for bladder cancer. We tried going to the state's insurance. That was a joke. So, I search & hunt sites like these trying to find someway to help him. I myself am on disability. We have 2 teenage sons. I am trying to negotiate, beg, plead with my own doctors, so I might be able to go back to work of some kind to help my husband. But, I know in my heart, it is too late for him to have surgery. He has given up. He chose death.
When you make your choice, think of yourself as a small ripple in a pond. That ripple grows and spreads to reach the edges of the entire pond. So does each and every life touch this world. If you said hi to a man at the grocery store and made his day. He turned around and let so one cut in front of him in traffic, they in turn let...... See the effect?
I am sorry. I am going to miss my husband. I would rather go through years of poverty than to go through years without him. :'(