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Did yoru memories help or hurt you?

newbride
Posts: 142
Joined: Jul 2009

When you were diagnosed and going through treatments. Did your memories help you get through the rough times or hurt?

My husband has just finished up his last radiation/chemo rotation (5 rotations in all so it's been a long 10 weeks for us).

Anyway I thought since we just got married less than 4 months ago that he would love to watch our wedding video and remember how happy we were just a few months ago and how much he has to fight for.

He has no interest in watching it or looking at the photos.

In some ways I understand since he doesn't look like the same person anymore - he's lost 51 pounds, lost his hair, his face is messed up from chemo/radiation, ete.

I just don't know what to do to cheer him up or get him motivated. All he does is sit on the couch day in and day out watching tv. He won't even sleep in our bed as he says he's not comfortable laying down (but when I get up in the morning to get ready for work, he's laying down on the couch sleeping).

When I question him he said it's because his skin is burning, he's tired, etc. WHen I tried to get him to go outside for a walk or to the park or soemthing to do he says he is too tired and just wants to stay home and recover.

Any thoughts. Did anyone else feel this way while they were having treatment or just finished?

AppraiserGirl
Posts: 20
Joined: Jul 2009

Newbride:

My brother just finished 38 rad treatments on September 17th. He was diagnosed back in June with squamous cell carcinoma at the base of the tongue with lymph node involvement. Radiation was all he would agree to do although the rad oncologist recommended that he see a medical oncologist regarding chemo.

Like your hubby, my brother's attitude is way less than positive. I guess we need to understand that the normal life they enjoyed is over and they will have to get used to a "new" normal life, the extent of which is currently an unknown. A good positive mental attitude would probably help the healing process, but I'm like you, nothing I suggest seems to go over well.

My brother lives alone in another town (2.5 hours away) and is having trouble getting enough nutrition cause his throat is so sore. He rejected the PEG tube too and while he had weight to lose, has lost 50 lbs. I sure hope his throat gets better first so he can drink and start maintaining his weight!

All I can suggest is that we be there for them and hopefully they will let us know when they want and need our encouragement and support. Maybe as time goes on and the treatment side effects lessen, their attitudes will improve and they will realize all that they have to live for.

I'm so thankful for this website and all the great survivors who provide so much information and encouragement. One day our loved ones will be among them giving out great advice and information!

Take care, you're doing the right thing!

newbride
Posts: 142
Joined: Jul 2009

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
Posts: 142
Joined: Jul 2009

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

pk's picture
pk
Posts: 192
Joined: Aug 2009

I have just been talking to my husband about this. He too is exhausted and tired and kind of sick or me pushing. We will end rads on Fri. 9/25. We are going to work towards this goal: Be off the tube and eating enough to maintain weight by mid Feb. so that the tube sight can heal and when we spend March & April on St. Simons Is. he can enjoy the pool and the ocean and the sun..Set a goal - maybe it will help.
PK

pk's picture
pk
Posts: 192
Joined: Aug 2009

I totally rely on my girlfriends. They keep me optiimistic. Your hub. can manage without you for awhile. Go out and shop, drink, workout - whatever your need.
PK

newbride
Posts: 142
Joined: Jul 2009

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 :-)

carolinagirl67's picture
carolinagirl67
Posts: 153
Joined: Jul 2009

Hey Newbride,

We have our last rad tomorrow and we are finished with chemo. My husband too is tired and a little depressed. I don't ask him if he wants to do things, I am doing my thing and sometimes he will decide to do them with me and sometimes not. I am giving him space to come around. We are too newlyweds and I think that makes it harder because they have to let you take care of them and that is hard for a husband let alone a new husband. I think sometimes he has been embarrassed by this and me having to see him like this. Anyway, I made plans to go to dinner with my mom saturday night and I didn't ask him because I assumed he wouldn't go and then he said, I think I'm going to go with you. I was shocked but very happy. Your husband will come around too. Hang in there, Donna

soccerfreaks's picture
soccerfreaks
Posts: 2801
Joined: Sep 2006

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

carolinagirl67's picture
carolinagirl67
Posts: 153
Joined: Jul 2009

Joe,

Thanks for you comments. It will help a lot coming from someone who has gone through it since I can only imagine how he feels. I will invite him on outings from now on, I just didn't want to push too hard and I wanted him to come around on his own. He actually went out yesterday and played nine holes of golf, I couldn't believe it since his last radiation is today and he just finished his last chemo two weeks ago. I have tried all along not to treat him differently but I know he is different. As a caregiver it is so hard. You are stuck between a rock and a hard place. You don't want to push to hard but you want to be supportive too. This sight was so helpful for me and I thank you for your help. One day at a time! Donna

newbride
Posts: 142
Joined: Jul 2009

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!!!!

carolinagirl67's picture
carolinagirl67
Posts: 153
Joined: Jul 2009

Newbride,

All I can say is "wow". I am so sorry for you and your husband. I will put you on the top of my prayer list and I really really hope things turn around. I hear your frustration. My father had a brian tumor and died 13 years ago when I was 30. Now I am battling throat cancer with my husband and I feel like it's deja vu. I just hate cancer and I am scared. Peace be with you!
Donna

delnative's picture
delnative
Posts: 452
Joined: Aug 2009

Poor Newbride ...
It practically brings tears to my eyes to read your message. But, speaking as one who's been through it and is coming out the other side, all I can say is please, give it time. Love him despite his faults, love him if he's hurtful, love him no matter what.
Even though he's so dear to you, there's no way you can feel what he is feeling. There was a saying back in the heyday of LSD, and I think it came from Timothy Leary.
Asked what it was like to take LSD, he replied: "To those who have had the experience, no explanation is necessary. To those who haven't, none is possible."
Being a cancer survivor/patient and former long-haired hippie freak (those were the days!) I can say that applies to what your husband is going through now.
Be there for him, and he'll come through this -- and he'll likely be a better person for it.
You'll be in my prayers.

--Jim in Delaware

newbride
Posts: 142
Joined: Jul 2009

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.

carolinagirl67's picture
carolinagirl67
Posts: 153
Joined: Jul 2009

Good Morning,

I am sitting at my desk in my office tears rolling down my face at what you are facing. Even though you husband has a rare cancer, we all face the possiblity that our loved one might not make it and it has crossed my mind many times over the last four months. I cry and then pull myself together and tell myself to just take it one day at a time and enjoy every single day with him not matter how bad it is. Yes, men do want to control things and that is all he is doing. During these months my husband has "tied up loose ends" with some property we have and other stuff and I know it is because if the worst happens he wants it to be easier for me and I am guessing that is what your husband is doing. Trying to make it easier for you. So let him, listen and cry if you need to. I have put you both at the top of my prayers and I am asking God to take away the cancer and the pain and to give you back what you deserve. I don't know if you ever watched Steel Magnolias but there is a line that she says...I'd rather have a a short time of something wonderful than a lifetime of nothing special and that's how I look at my time with my husband. No matter what our future holds today is special.

Peace to you!
Donna

MadelynJoe's picture
MadelynJoe
Posts: 96
Joined: Sep 2003

Dear Newbride:

I realize that as a new bride, you want to do everything possible to make your husband happy. As a 41/2-year lung cancer survivor, I can tell you that each person'e reaction to a cancer diagnosis is different and very personal.

Give hubby some time to recover before you remind him of how wonderful things were just a few short months ago. One day, when he is feeling better, he will enjoy seeing your wedding photos and films. Right now, I'll bet he is still emotionally reeling from his diagnosis, not to mention the horrible side effects from chemo/rads. Just step back, take a deep breath, and promise yourself that whatever he wants right now is OK. You can make him feel better just by being by his side. Let him know how much you love him without smothering him. Don't ask too many questions - let him do the talking when he's ready. Your quiet presence and loving reassurances will go a long way toward helping him recover - I am sure of that.

All the best,

Madelyn

Bonj
Posts: 17
Joined: Aug 2009

Because at various points in time, your husband could be my husband. His attitude, his demeanor, the way he acts towards you, the way he acts towards others. At this point, I have been in this loop long enough to acknowledge that it's not really "him" that is treating me this way. It's difficult when you are the sole caretaker, the person that is always there. You are the one who gets the good, the bad, the wrath, whatever. It used to bother me when he would be in a fantastic mood for others, interested in what they had to say, or did, but he couldn't ask me how my day was.

Me personally, I wouldn't ask him to watch our wedding video. It's too new, and I think it would harbour resentment for him as the thoughts of "This is how it used to be, why can't it be like that again" can surface, which then brings back the whole anger thing, and you are back into the cycle. If all he is doing is watching tv how about set aside some time to have a movie night or something? Something that the two of you could enjoy together?

You just have to slap on the brave face, drag him places, get him moving. Be there to listen to him, to be there when he needs you. But you have to also understand when he really can't go places, that he's just too sick, too tired to do anything. It's a tough road, and it's especially tougher for you since you are dealing with the dynamics of a new marriage.

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