Just starting---too scared to ask

Option B

My husband was just diagnosed, Prostate cancer, stage 4 with bone mets all over.  Lupron is working together with blood transfusions, but with low kidney function, we'll be adding procrit this week.  Too far gone --- with bad kidneys, chemo and radiation aren't options.

However, right now, he feels to good to be dying.  With the treatments, he actually feels better than he has in the last year when he didn't realize he was dying.

It's all in the denial stage because the painkillers and treatments are keeping his pain under control for the most part... at the moment.  I know this is very temporary.   That's the part that scares the hell outta me.  I know that constant pain and nausea and severe sickness has been alleviated temporarily, but can kick in again at any moment.   He's only just gotten better with treatment... but the doc says we won't really know whether or not the hormone treatment is slowing down the cancer until the bone scan in September.   

So that's how it's gonna go.... 90 days at a time.  If he doesn't take a nosedive.   Family that were sympathetic at first are backing off and offers of help are getting backed out on because he doesn't appear as sick now.  Like these minimal treatments to slow down the disease are somehow a cure.   As if a year or less is suddenly not true.  Let's hope it's longer, but face it.  Cancer follows it's own timetable.  Too many people are offering me the "but my --- was given only 6 months to live and lived for years" attitude.  I WANT to cling to those hopes.  I WANT to believe.  But that's only because I don't want to ask what his real end stage will be like.  

PLEASE DON'T tell me what it will be like.  I know, but I'm not ready to face it quite yet.  I'm just trying to focus on how to build some special memories while there's still an opportunity.  While he can still travel, still taste and smell food, still see the beauty around us.  His eyesight is failing, too, with the diabetes complicating things.  So tactile is important.  He's snuggling with our lab at home right now as I'm typing at work.

So, yes, I'm too scared to ask.  I don't want to know, because the short time he was that ill was just a forbearance of things to come... and it will be much much worse before the end comes.   I'm not ready start saving for his funeral...  I want to spend that money living with him!

Somehow I am hoping to know when that nosedive will be coming.  Some foreshadowing to know when to kick the job, the problems and joy killers to the curb and just spend every spare minute and dime making him comfortable.   He'll be harder to be around when he's meaner because of the pain.  Then the suffering will really begin.  I know it.  I'm just still in shock and am embracing the denial for the moment.

Any encouragement and platitudes are welcome at this point.  Just no miracle stories or "face it" in my face just yet.  Just prayers to help us with what is to come.   Not one doctor has mentioned "fighting it" so I guess that's not really an option.  Health foods?  Baking soda and honey 3 times a day seems silly to him, but I'm trying to get him to at least take his meds and eat healthy.  That's about it as far as self-directed treatments.  

And I won't even open that Pandora's box of trying to make sure you are "right with God".  Just being a Christian isn't apparently enough.

So let the support begin.  And my fellow caregivers, you are the only support I have.  So thank you for your time.

 

Ladylacy

Just Starting

I remember what it was like when my husband said no more treatments.  Can't really tell you anything because each individual is different.  Some say their loved ones got mean, mine didn't, he just kept going until he couldn't and then it was all downhill.  I knew and so did he.  Don't beat yourself up  if you get mad at him and yell.  I did and then I would tell him I was sorry and how much I love him and that I wasn't mad at him, only the cancer.  

My biggest regret is that I didn't record his voice so I could just hear his voice when I need it for comfort.  We took some pictures with our sons and their families, but he didn't particularly like those pictures because it showed how much damage the cancer had done to him.  We traveled as long as we could but at the end were not able to attend a grandson's high school graduation and another grandson's wedding.   He loved being outside and working in the yard but I would have to go out and tell him enough was enough.  Visitors were welcome as long as they weren't sick.  

It won't be easy but you have to remember to take care of yourself and take time for yourself because you are important too.

Wishing you and yours peace and comfort.

JerzyGrrl

Even if...

Even if someone told you what the end would be like, their answer would really be "what the end MOST LIKELY" will be, "maybe." I was told what the end would be like for my mother, for my father, and for my spouse. Ha. Let's just say the end score was 0 for 3, not even close. Somehow I persevered through it all, no special pointers. The sun rises again, you get yourself out of bed, you do it all over again. Be sure to take advantage of nap times for yourself, eat well, take a walk or two every day. 

One thing you said, about how difficult he'd be to be around once the pain returns. Do make sure that you have someone on your (plural-your) care team who has the role of pain management. It'll keep you and your hubby from going totally crazy, and you'll feel better emotionally, mentally, and physically. Lots of happy memories you can create then, as long as the pain is managed. Not everything has to cost money. You can reminisc about funny or sweet or bizarre things you've been through together. You can borrow movies from the library. You can play music. Read books, short stories, funny stuff. Listening to favorite comedy shows.

Also, there are chair yoga, chair Tai chi, and chair fitness DVDs that are pretty good. I did those, too. 

Sorry you have to be here, but glad you found us. Keep us posted as you're able.

All the best -- 

Jerzy