Did yoru memories help or hurt you?

newbride said:

Thanks
I feel better now knowing that someone else is in a similar situation. It's so hard living (or trying to live) when the other person is not the same. I feel guilty going out and having a good time.

My husband also lost 50 pounds but at least he has the peg and is now maintaining his weight

newbride said:

That's Exactly What I Did
today....went with 3 of my friends to a local tea house....was there for 2 1/2 hrs and didn't feel guilty -- he was in the same spot he was when I left...ok not the same spot - he moved from one end of the couch to the other :-)

soccerfreaks said:

Well said
As a survivor, the two words in your reply that strike me as most on point are 'depressed' and 'embarrassing'. Spot on, I would say.

As newbride herself indicates, and as others suggest as well, we DO feel different, different from others, which is embarrasing, and different from former selves, which is depressing for some of us, many of us. It goes with the territory and it takes time to overcome.

I would say, carolinagirl, that your significant other is showing great mettle in inviting himself to public events that you presume he will not want to attend. I would humbly suggest that you invite him to all events you would like him to be at, and let him be the one to decide whether he is up for them. It is really critical that he get out, that he expose himself to the world and it is great that he is up for it.

newbride, on the other hand, I would be concerned about hub's behavior, as you clearly are, and would suggest some additional support, perhaps via the telephone, or in this place, or even a counselor of some sort. With only your written word by which to evaluate, it seems that you are growing rather weary of his apparent lack of interest, his apparent lack of effort.

Reading your words, I sense, especially in the remarks that he was on the same sofa when you returned, if in a different position, that you are developing some anger and/or contempt, even if it is in a mild stage today. Please be concerned about this, too, if it is an accurate assessment.

You have rightly pointed out, newbride, that your position is more tenuous than that of others because your union is still a new one; you have traditional issues to deal with along with these new ones, and may even wonder if the man you married is the same person you thought you married, all because of the effects of cancer on him.

I would suggest, as others have, that you hang in there, that you continue to get out, so that you can live life, but that you also keep him utmost in your thoughts, that you talk about some sort of acceptable support for him (some of us don't even want to think about needing psychiatric help, particularly when we most often need it ), that you recognize that he is in a new place and trying to figure out how to live in it himself, that he is apt to be a bit selfish during this process even if he is not typically so, and that his lethargy, while it may seem like giving up or even laziness, is really despair, is really a sense of personal failure, is really the embarrassment and depression that carolinagirl mentions.

Cancer can take more than it is genetically predisposed to do, newbride. It often does. There is more tragedy in that, often enough, than what it is designed to take. Do not let it have that power.

Best wishes to you and your husband.

Take care,

Joe

newbride said:

Joe
Thanks once again for helping put things in perspective from the patients point of view and being pretty much spot on.

You are right, I am worried about his attitude and behavior and I have suggested he speak with someone but his response is "There is nothing to talk about" which only proves even more so that there is!! Since his treatment was done on an in patient basis I even had his oncologist set up to have a social worker so in to talk to him, but again he pretty much blew them off and of course you cannot force a person to talk or get help if they don't meet you at least 1/2 way or almost 1/2 way.

And you are also right when you say I am growing weary of his behavior. Here's my biggest beef about the situation, and please don't get me wrong I know he is still recovering, in pain, frustrated since there are still tumors in mouth and nose even though he has had treatment, still on pain meds, etc. BUT......I come home from work, walk into the living room and he's watching tv - he does even turn to say hello or even acknowledge I just walked in. I walk over to him say hello, he nods his head, I lean over to kiss his forehead - he doesn't even respond. I take his hand in mind, again no response. HOWEVER, if his kids or even his sisters and mother come over to see him -- it's like a totally different person just took over his body. He will ask them how school is, smile, lean forward when they go to hug him, respond to their questions. When I bring up this change of behavior to him he turns it around like I am being selfish expecting too much or I'm the bad one. After they leave I'll gently say "I'm so glad your feeling better" and he'll respond with a head shake. Then I'll say something like "How come you can't answer my questions, but just had a 1/2 hour conversation with the kids" and then he'll get mad and say things like "You don't understand I'm in pain when I talk" "It hurts like hell to talk to the kids but I wont' let them see me dying" "You are seeing the real me, unfortunately you get the pain which I won;t let my kids see". Stuff like that. Now, mind you and I have told him this -- I don't expect a 1/2 hour conversation but when I come home from work it would be nice to hear "It's good to see you" or even when I say I am getting ready for bed to hear "I love you" when I say "I love you" I get a nod back he doesn't even mouth the words any more.

Now -- here are some other things to point out to consider and why I don't get on his case about things much and pretty much vent my frustrations out here:

--- his father was diagnosed with "mouth" cancer in June 2008 (I have been trying unsuccessfully to find out the "type" of cancer because of all the HIPAA red tape it's almost impossible to find anything out
--- his father underwent radiation (and supposedly chemo) from July-Sept 2008.
--- when his father's treatments were over they found spots on his liver and lungs -- we don't know what they were (assume the cancer spread) since his father refused treatment from that point on
--- my husband was his father's primary caregiver
--- my husband was diagnosed in March 2009 -- had surgery on March 24
--- his father passed away March 29
--- my husband is the 3rd reported case in the world of the type of cancer he has, the doctors all tell us it is rare and unusual and they are puzzeled when it came back in June at a high grade aggressive state
--- the treatment my husband has been getting isn't "typical" but neither is his cancer

so, taking all this into consideration I can't see how he cannot be thinking/expecting the worse, especially since he is a pessimistic person to begin with.

Well, that felt good getting that all off my chest!!!

Thanks!!!!

newbride said:

Thanks Jim
I can't thank you and all the others enough for helping me get through this. Yes, I love my husband dearly and would do anything for him. And I love him and his faults (heck there were quite a few before we walked down that aisle). I can't even beging to imagine what he is feeling and going through and that is why when people at work tell me I have to push him - make him go out, tell him how I feel, etc I can't. Knowing the pain I am going through and trying to imagine what he is going through all I know is I can't even possibly have 1/10 of his pain and thoughts. Even when I think the worse about the outcome it can't be nearly what he is feeling because at the end of the day I will still be here, he might not and I can't imagine what knowing that can bring to a person. And that is exactly the reason I don't harp on him and take it out on him -- but instead of here to all you wonderful people.

I do everything I can for him -- getting him whatever he wants/needs and will continue to do so and try as best I can to keep my disappointment to myself. If we end up with bad news after the CT scan in a week and half I want him to live whatever time he has knowing that I love him with my full heart and nothing less. I don't want him to think that during our 4 months of marriage that he was a burden. I had 3 wonderful years before this and while I have all the positive thoughts in the world and really hope he makes it through this and really think that with the aggressive treatment he got that he has got to be ok -- after all when the tumor came back in June his nose doubled the size in a matter of 3 days.....right before he started treatment in July it started to come back again -- BUT.....it has NOT grown since he started treatment -- that has to mean something right?

The hardest part for me was tonight when he wanted to discuss his plans for funeral, burial, etc he told me he is writing a list for me. I didn't want to hear it - I told him that this wasn't a discussion we should be having until after the CT scan and then maybe we won't even need to have it. He disagreed and said I was only setting myself up for a huge blow. I sat, I listened and I cried. And now here I am on the computer again =(

Thanks again to everyone who has listened to me.....I hope my husband is dead wrong (pun intended) and I can report back to all of you with good news in 2 weeks and we can start our road to recovery -- we have a long road ahead of us, but that's fine....I'm not planning on going anywhere.