Melinda,
My husband knows, but he's sick and tired of people ( meaning me ) who keep on reminding him. So what we've tried to do is look at this as a chronic and ongoing illness, that he will have to always be in some form of treatment, whether it be chemo, or radiation of some sort.
I also think what really helps is that my husbands' oncologist is a no BS type of person, he tells it to him straight and my husband respects him for it. He doesn't hide things and in fact even told my husband the last time he saw him, that he honestly thought he wouldn't be alive right now with what he has. ( hey, told you he was a no BS guy). Even though my husband may not want to understand it, he knows, it doesn't mean that he has to think like a terminally ill person.
Hey, my husband talks to me about buying another house, moving from where we are at. Planning on going to Europe in a couple of years. Planning next Christmas. How when he gets back to work. When I hear him talk like this, what can I say or not say? I just listen to him, he has a great attitude, I think it's what has kept him going.
Does it tear me apart, yes, I know the envitable, like his dr. and I know he knows, but he doesn't want to think about that, but rather, think about living. I can't fault him for that.
He hates all the treatment he has to go thru, he hates the fact that he can't take a break, I think he's going to have a nervous breakdown. He's the consumate entertainer around everyone, but me, of course, I tell him, he doesn't need to entertain everyone and make them feel happy, when he himself feels so lousy.
The way I would like to see and believe that the goal is to prolong his life, with some quality, without pain and suffering. We don't use the word "cure", we never have since knowing about ext sclc, it isn't an option.
Oh Melinda, you know I know, I too hate having to be the strong one, the realist, and yes the pestimistic one. I hate having to do everything, I hate that my once "marriage" with my husband has now become, how do I define it...."caregiver" - buddy.....nag...almost like 2 very old crabby people.
I hope you can have at least a somewhat peaceful and not so chaotic holiday. I'm here if you need me...
Grace