support....or lack thereof

    This thread is the result of a brief interchange that Raheeb and I had on another posting regarding lack of support thru this ordeal. I am not writing this looking for sympathy or by any means to downgrade my other half. Maybe it will open some other eyes to an important aspect of this ordeal that I personally found lacking. When I first recieved the results of my biopsy I contacted my wife immediately, we both knew in the back of our minds it was going to come out as cancer. She took the news over the phone very matter of factly and said we would discuss when we got home. At home no tears, no hugs just a matter of fact discussion about doing research prior to a meeting with the surgeon (several months down the road yet). I find it strange that my wife had really no desire to let everyone know. I did because I believe in the power of prayer and thought the more people on my side the better. I think that is because she gladly welcomes the weight of the world on her shoulders, she thrives on helping others. But in my case it felt that my situation would be a burden to others and she could just not have that. When we did meet and tell people she would give me her patented look, like don't bother them, and quickly change the topic to ask others about their problems and how she could help. All along her attitude was, you have a cancer that is highly cured, so why are you making a big deal out of it. Sorry but as I have posted before, my father died of cancer at age 60, which now I may believe was prostate cancer, my Mother died of cancer at 64 and I had a brother die when he was 15 from a brain tumor. So as you can see it was a big deal to me.

When we went in for surgery, the requisite 2 hours ahead of time there were no tears, hugging or any other emotion. Just another day another surgery. When I look back I think I did get a peck on the cheek when they wheeled me to surgery. Out of surgey again no outward sign of emotion (god when I write this it sounds terrible). I won't go into after surgery care too long.

When we went to get the catheter out, I also got my prescription for ED drugs and a brochure on a Vacumm Pump. Not once after that did the pump ever come up, she has yet to ask how I am doing in regard to penile rehabilitation. I don't think she wants to know. One comment made earlier looking at possible after effects of surgery being swollen testicles, she said "don't expect me to help with that".I did not even tell her I got the vacurect and god help me if that info should ever get out to anyone. God help me anyway for writing this because this would not go over well with her. As I told Swim my wife is very private and considers our life just that. That is why I went looking for a site like this and I am so glad I found it. Somewhere where you can have frank discussions and not worry about the outcome. You can see why I jokingly asked M.Kat to marry me. Reading posts from wives that 100% supportive and look for creative ways to help their men through this recovery kind of makes me jealous. I don't know what to do. After reading the above it certainly appears I made my wife to be some kind of ice cold person, Maybe this is her way of dealing with things. We have been married for over 34 years. Yes if you do the math I was 18 and her 20 at the time. How many guys do you know marriied at 18 this long. I hate to throw it away but I am young enough to start over. I have tried to get her to counseling but she would never have discussions with outsiders regarding us. I really apologize for this I could go on for hours. But as Pete says it good to get this down in writing because it does help. Thanks for listening.

Daveed, you are killin' me.  Cancer is a lousy deal even with all the support in the world.  It's lonely enough when those you love and count on are there for you.  I guess that's why we are here.  We love and count on each other.  My experience is not as unhappy as yours, but this disease has not helped our relationship.  I am envious of those who report a stronger and better marriage as a result of their cancer.  I admire your courage in being open and forthright about this issue.  I hope for the support of those more fortunate than you.

Good On Ya' My Friend,

Bill

Daveed - Thanks for deciding to post this thread. I am sure there are others out there feeling unsupported. We truly don't know how we are going to deal with these things until they are tossed in our path.

You know your wife best, and she does sound very private. I wonder, though, is she reacting this way out of fear . . . sometimes people kind of bury their head in the sand in a "this isn't happening" kind of way.

Thirty-four years is a long time . . . .just don't make any quick decisions until you are completely through the recovery from this journey with PC.

Thanks again, for barin your soul. . . . you are helping many others whether they be active, lurkers, or just quiet.

;o) Linda & Bob

like bill just said, lots of people have read this thread, yet very few responses.

I have read it a couple times, but i don't know what to say.

i can say that with us it has kinda been like one person collapses and the other is the pillar, and it goes back and forth. I was super strong for a couple days, just in the "well, we have to figure out what to do" mode, and then the crying my eyes out mode.

kind of like ying and yang. sometimes i lose it, sometimes he does. sometimes we both do.

I can't offer any expert advice on your situation. Maybe she is trying to be strong for you? i don't know? 34 years is a long time.

the part about not telling anyone seems unhealthy for both of you (to me) .... but like i said i am not an expert. I rely on not only this forum, but my girlfriends. He talks to buddies about it (he has a few from vietnam etc, that he talks to that have had it). and of course both our families know about it.

like i said i don't know what to say except blab on about our situation. which probably doesn't help you.

So, like i said don't know what to say. I am sorry.

But I DO KNOW that i think it is great that you shared that and got it out there. That i am sure of.

I have also read this thread several times and have not responded until now.  Daveed, you should not feel that you are alone.  While my wife has been supportive and has been open with friends and others about my PC she just does not understand the personal impact that having had PC does to you.  As I realized and was depressed about before my surgery I would never be the same again.  Just that fact is such a downer that it takes interacting with those that have been there to get your self esteem back and that is why this forum is really a family to those of us that have been active on it. 

As to the interest in helping the recovery from ED my wife has been there for me and I think that most wives would be that way.  Daveed, I am not sure what I would do if I was in your situation.  I can not even offer up a recommendation.  Knowing my personality I would probably meet it head on but that is just me.  Before the surgery one of the fears that I had was that the after the surgery our relationship would change.  That could have been me making the change as well as her.  While I have had days of concern about the impact to our relationship it has not changed and if to any degree it has brought us closer. 

My hope is that your relationship with your wife will rebound. 

Tamu

Daveed,

I wish I had an answer for you that would fix everything. I think part of your wife's response is from fear. We are afraid that you will die. we are afraid of cancer. we are afraid of how we should reacte to this new challenge and what we should or shouldn't do or say. has she ever been one to have frank, open conversations with you? if not, then this would definitely not be the time to start. maybe if she knows how desperate you are to make your marriage work, she would consider counseling. I have only cried once in front of Jeff and that was during the pre-op, but as soon as the tears came, he said "stop that now" because he started crying, too. I know that Jeff is going through a tough time right now with the ED (because he won't use the pump for rehab and has put me off when I've wanted to be intimate), but I know that we'll get through this. at least he doesn't tell me NO all the time. thank you for sharing from the heart. Some wives have posted where their husbands have been very standoffish. I know you will find your way on this road.... hugs to you! kat

Yes ~ this Thread… is a few days old as I type my posting…. but...it is a topic that truly doesn’t deserve a quick response!   And when you look at it being posted in the evening of the 19th… and within 60 hours…. 11 “very thoughtful responses”… are posted….. it’s well worth the wait!!!!! ~~~~~~~~~~~~~~~~~~~~~~~~~~~   Daveed ~ this forum allows us to be courageous !!!!!     And that’s what makes this forum so powerful ~   and makes us all such close friends….     Each and every one of us are dealing with our own “specific” stepping-stones that have been placed in our path on this journey….. and even when we can’t fully grasp…a specific topic… we can always empathize with those who are dealing with sensitive issues.   We can be here to listen. & That’s what friends are for!!!!!!   It takes only “1” special thought or word to trigger us into taking action on many things.   Hopefully ~ something said here on this thread will help guide you to a stone that will help you to understand why she’s reacting in this manner….   or come to the realization that this has always been her manner and now when you’ve needed the most support ~ it is not there.   You have a lot to think about and what better forum to do it in!!! A forum where others are dealing with… the exact same disease the same exact decision making process the same exact healing/recovery process YET….~ each different in so many ways.     Don’t ever apologize or be embarrassed…. for sharing from the heart!!!   This is the best therapy….talk it out and get feedback… good/bad/ugly. It allows us to see so many different scenarios.   And this will help you….to find a peaceful stone!     Stay with us and know that we care!   Keeping you extra close in our hearts, thoughts, & prayers. In Friendship ~ Lee & Buddy  

Okay, I've hesitated to respond to these messages because my initital reaction is to want to smack around these selfish wives, but that would not be constructive. Plus I have to admit that I have at times been a selfish wife - not to this degree, I can honestly say. But there have definitely been times when I put my self before my husband's needs. And I regret that so much now. I've cried over it and asked his forgiveness, and have assured him that when he's able to "perform" fully he's not going ot know what hit him.

Daveed, in one of my earliest posts you responded to me, I believe it was the day after you'd had your catheter removed. At the end you made a comment about your wife, "my wife can go more than a couple of weeks without (sex) so no loss to her right now." It stuck out to me because so many of the wives on the board were anxiously awaiting their husbands' return to normalcy in that area.

While I was doing my housework yesterday I kept thinking about your predicament. You mentioned that your wife welcomes the weight of the world on her shoulders, and thrives on helping others - but she's not doing that with you. I would guess it's because it doesn't get her as much attention helping you than others. I'm not saying that she doesn't have some desire to help others, but a lot of times when someone really "needs" this, a lot of the motivation is because of what it does for them and their ego. I would guess that there have been plenty of times in your marriage where she has sacrificied for the needs of others at your expense, especially in the area of time and emotional attention. You see, she's SUPPOSED to take care of you - there's no glory in that. But to take care of OTHERS, that's a sacrifice, and everyone notices and thinks how wonderful you are.

I'm not suggesting that to belittle your wife. It is very easy for any of us to slip in to that. We're human, and we like to look important. My husband and I are very involved in our church, and there have been times that we each have put too much focus in to ministry and not family, and we've learned through the years to balance that.

The problem is, this is who your wife is, and I'm sure it's been that way for years. This is the dynamic the 2 of you have established and lived with (maybe even comfortably?) for quite a while. A leopard doesn't change it's spots - at least not without serious help. We're dealing with that with my dad. My brother has been frustrated with my dad not being more proactive in his fight with cancer. Finally I told him that our dad has been that way all of his life, choosing the path of least resistence, just walking away if it gets too tough. You can't expect someone who's been a turtle all of his life to turn in to a lion.

I know that sometimes people have some kind of epiphany in a dire situation, step up to the plate and change for the better. But the truth is, these kind of situations usually just magnify what we are - good and bad. There's a saying I heard that says "Circumstances don't make us what we are, they reveal what we are." Your battle with prostate cancer has shown a bright light on some negatives and weaknesses in your marriage, that have been there all along, that you have been willing to live with and have contributed to, at least passively. I think it would be unfair of you to expect your wife to turn from a turtle in to a lion in such a short time.

I do, however, think you should be painfully honest, and let her know that you are aware of these failings, and are not willing for your your marriage to continue this way, that her willingness to ignore the situation is not an option you can live with if she wants the marriage to survive. It doesn't matter if she's private or not. A divorce certainly wouldn't be private - I'm sure she doesn't want that. Do everything you can to get across to her that you mean business. If she is as emotionally stunted as your description implies, you're probably going to have to really push it for her to crack.

You said you believe in the power of prayer. Find a counselor that will be honest and counsel you from God's perspective, and go without her if you must. Let her know that you are going to share EVERYTHING. Perhaps she will be worried about her own reputation enough that she will want her side of the story to be heard!

But just as you prayed over the cancer and your treatment, you need to pray that God will break her and soften her heart, and open her eyes to her selfishness. It may take a while, but He can do that. (And wants to!)

Okay, enough of my preaching on that.

Raheeb, I have no idea what religion your wife is, but I would have to say that pretty much any religion advocates compassion and servanthood. And while I'm not an advocate of throwing in someone's face the fact that they may be being hypocritical in how they live out their faith, I think maybe you could put it in such a way to make her stop and really take at look her actions and motives.

For instance, you could sit her down and say you're concerned with how this situation in your life has affected her faith, as evidenced by her worries over your choice of surgeons. She'll probably deny that. Ask her if her God is so small that His abillity to heal you can be hindered by your choice of who did the surgery. Did her God say, "Oops, I missed that one - Raheeb picked the wrong guy and now I'm powerless"? Does her God not hear HER prayers because of who YOU picked as a dr.? That's ridiculous. In that kind of thinking she is insulting her own God - no matter who that is. You said that she wanted to hold up a successful surgery as a testament to her religion. If that's the case, using the wrong surgeon really puts her God to the test, and will make Him look even more awesome when He heals you!

I think you could also say (ina very gentle way), "Honey, I know how important it is for you to emulate the actions of (Jesus, Jehovah, Mohammed, Buddha, etc.) You seem to really be struggling with accepting the whole incontinence and intimacy thing. How do you think He'd handle it?" (Hopefully her God would be nice about it). Hopefuly that will get her thinking. IF NOT, I would get extreme. Tell her that you feel that this is bringing to light some weaknesses in your marriage, and that you 2 need some help to get through it. Then tell her you are willing to go to a counselor of HER religion. Make sure it's a guy, so he'll be more sypathetic to your plight. I can't imagine a man from any religion who wouldn't encourage a woman to be sensitive to her husband's needs during prostate cancer recovery.

If she gives it enough thought, she may be convicted enough about her behavior that she wouldn't want another believer of her faith to know she'd blown it, and will changer her behavior accordingly. (Let's hope).

I know this is a long post, and these ideas may be totally stupid. I read an article the other day about how stressful situations inhibit healing. When we get in to a conflict, it releases a chemical in our body that causes inflamation, which hinders healing. It said every conflict sets you back 1-2 days. You 2 living in a state of conflict (or at least angst) can't be good for you. I hope the comments and ideas from everyone help.

bec

Bec,

Well stated!

Thanks.

Bent1

what a wonderful post bec!

Beautiful post, Bec! Sometimes, it's a fellow layperson who can offer the best insights - as opposed to professionals. Being in a marriage means being part of a strong team. It should be a soul bond that encompasses everything - passion, friendship, respect, love, humor, and so much more! It doesn't mean you have to be perfect - but you should be perfect for each other. And then, there's the "through thick and thin" part. Life is waaaaaay too short to not enjoy all those qualities in one person! A spouse or SO is your support system - somes the coach, sometimes the listener - and vice versa.

No words of wisdom, other than I hope you (daveed and raheeb) will uncover the support that you need right now. Cancer, even in recovery, is the traumatic blow we all dread. Don't feel selfish for expecting more.

(And what a team you all have here!)