My wife wants me to be well. Please advise.

[52TELE]

Hey gang , how are you guys fixed for spousal advice?

When I started treatment in March , my wife made me promise that I would always be completely honest with her about how treatment is going and how I really felt , good or bad. I have pretty much stayed with that up until now. We had a talk on Saturday about how "negative" I am about treatment , side effects and potential results of the treatment. I don't think she wants me to be completely honest anymore.
I am always , or mostly always upbeat with my son. I don't want him ,as a 15 year old to have to worry about his old man to much and with my wife I pretty much tell it like it is. When she said "completely honest", I don't think she was anticipating how bad it could get. The problem is/has become, that when she says "how are you", she doesn't want me to just say "fine", she wants me to BE fine. She obviously wants me to participate in family activity a little more , go places with her a little more , try and enjoy my life a little more , etc..etc...

I'm afraid that if I start "being fine" , she is going to have me off doing things that I really don't feel I'm up to and the problem is that is how I feel pretty much all the time. I'm not saying that I just sit in the house and do nothing , I do the best I can , but I'm thinking I'm going to need to do more.

Question: How guilty should I feel about not being able to provide my wife with the companionship she needs and am I being selfish for not wanting to be out and away from my house more?

Please , your honest opinions.

[Rogirl]

I think now is the time to be completely honest. And from what I understand it is difficult to project from one point to another how you will respond to ongoing tx.
I just started tx--I've had two shots and so far other than constant fatigue I feel like I did before I began. But I know that can change at a moments notice. So an okay day now doesn't guarantee okay days in the future.
I don't know that a spouse or any significant other can really understand. I know my husband tries--but he says "well it's just for one year"--yeah--one year--to me this is a big deal and a year is a long time.

[sfbaygirl]

I know how you feel with the spouse. John has been nothing but supportive and always wants to know how I am. Most of the time he doesn't even have to ask, he can see all the blood has gone out of my face.

A few weeks ago we ran into some problems, because he doesn't think I am paying enough attention to him. He wants nurturing too. I have so little energy and libido it is hard to do this. So I try and make sure he knows I care. I go hug him while he's watching the game, or ask him if he needs something. Sometimes I SURE don't feel like it, but I do it anyway.

Yesterday I took his daughter to get a father's day gift at Nordstroms. He wanted Barnes and Noble too. I couldn't do it all. So we got some shirts wrapped at Nordies, went to Safeway and bought Barnes and Noble and itunes gift cards and home I went for a 2 hour nap! He loved it and said he felt very taken care of.

I think it is the little things that the family needs. I can sit and visit for a while, go to a movie (although I may sleep and have) and I can cook simple meals. All seems to be apprieciated.

At one point I asked him,"do you want me to stop tx?" Of course he didn't. It is really hard on the family. John says he feels like he is on tx too. I know what you mean about not complaining or saying how bad you feel. I really don't think people want to hear, and frankly I get sick of saying how I feel. It's bad enough to feel it!

[Dale_Ray]

I have little advise but confirmation that this treatment is as bad if not worse for the spouse as it is for the patient. My wife was exactly the same in wanting to keep up with me emotionally as well as any side affects. It wore her down and I've gotten to where I keep it inside. I push myself to take her to dinner and a movie or to do this or that. Mostly just trying to prove to myself I am still a man. I certainly don't feel like one some days. For me I let guilt and trying to make her life a little more livable take me to a place where I over exerted myself and tried to fake everyone off and make them believe I was doing great. I wasn't and for every time I over did it I would suffer through increased symtoms of the medication. I know one thing if you don't take care of yourself over this next many weeks and get as much rest as possible your probably pushing the medicine's gains backwards. My new deal with my wife is that I am sick of talking about being sick and for her to just love me and forgive me for the stupid stuff that just jumps out of my mouth. I know what you are going through I just wish our wives could comprehend it as well. Get her a metal when it is over:) I'm taking mine to an island where she can't get away - ha! Dale PS: Remember to that she is feeling guilty everytime she goes somewhere and enjoys an outing. She is thinking about how you must being feeling at home feeling like c**p.

[fishdoc]

going through the same things, but not with hubby, I only see him on weekends, and he comes in and does my laundry, goes grocery shopping, etc.  Pats me on the Behind as he walks by the bed, which is pretty much where I stay on weekends (shot 19, 8 riba a day).  But, my mom is staying with me, and she is getting pretty bored, and I am not the entertainment committee.  Essentially, they cannot have it both ways, it can't be about us, and long term health, and about them, and their need for immediate gratification.  I suggest if you 'cover' and make the effort to participate in normal activities, you're gonna wind up on your @ss, and then it takes three weeks to get back to our semblance of normal...better to be brutally honest......although I agree, children are a special case... spouses and parents.... can take a backseat for 11 months...just my opinion...

[FlGuy]

I'm not one qualified to give spousal advice, but I'll tell you how it worked for me.  During tx my kids were 15 and 10.
Early on in tx I realized that I could not keep up my normal routines, especially on the weekends. IFN was more 'demanding' than riba.  Although I missed only 1 day of work - weekends were mostly lost time. The expections were set early, don't count on my being my usual self and don't expect to be involved in normal social events (get togethers, malling etc).  I realized that for the good of the family I had to deal with tx, do what it takes and basically sequester myself for the duration. Weekends were not just IFN days, there were also recover time from tough work weeks. I was a grouch too and in order to have some level of domestic tranquility I hunkered down, did't share details of my misery and basically absented myself.  The family recognized it, knew and supported it. It had a beginning and and end - someday they would get me back.  
I surmise that you are not a selfish person.  But sometimes you need to be and those around you need to accept it and support it, even if they don't like it.  You all (the whole fam)need to go thru this together and it will be better for all if you're all on the same page.  Kids at 15 are more astute than you think and can find the facts, it's the emotional level-setting that's important.  The to-do list might get ignored, the social contacts may be limited and you may have some making up to do later on.  Your focus should be on getting better now so that there is a better you later.
We still haven't found the best way to tell the kids I relapesed.  That's still an unwritten chapter of this book.  Good luck 52.

[amirtracy]

I hear ya. Can't I just feel like cr*p without feeling like cr*p because I made you feel like cr*p???

I don't complain much anymore. I don't wanna hear it either.  I'm not as attentive as i usedto/shouldbe. But hey. I feel like cr*p. I figure I'll make it up to him in 30 weeks. Deal.

But then again I could just be having a bad day...