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Posted 4/12/2013 3:29 PM (GMT 0)

sad      I have been in this forum for almost a year now and have learned alot from it and have shared some of it with my wife.

    My surgery was a sucess and as far as I know I am cancer free.

    Last night I was talking about my grandfather having cancer a long time ago but I didn't know what kind. Than I said maybe I got it from him.

    Then it happened.  In no unserten terms she reminded my I don't have cancer any more and she didn't want me talking about it anymore.

   We can talk about contenance and ED issues but not cancer.

   So now I WILL NOT mention cancer anymore and probably nothing else.

   Now I will just talk to myself about what I am going through.

   I will keep to myself what ever I read on here now.

   Now it seems I have no one to talk to.

   Am I wrong, I don't know.

Posted 4/12/2013 3:40 PM (GMT 0)
I'm not sure people who have never received a cancer diagnosis can really understand what it's like for those of who have.  I suspect that your wife means well.  That she wants you to put this terrible chapter behind you and move on.  What she doesn't understand is that most of us simply cannot do that.  Cancer has become a part of our lives, and we always feel its presence and hear its footsteps behind us.

It sounds as if she's in denial, and that she herself is having trouble dealing with your cancer, and that she wants, or needs, to put it behind herself as well.  That's just my opinion, of course.

I hope she'll eventually move beyond that and comes to understand that cancer is something that you'll be dealing with for the rest of your life.  Be patient with her.  This may be just a temporary reaction on her part.

Posted 4/12/2013 3:45 PM (GMT 0)
Get hooked up with a local (live) cancer survivor's support group, volunteer at a hospital that treats PCa patients, find a HW person in your area who would meet you for lunch once in a while -

I have people who were friends, supposedly, who just stopped talking / calling as the PCa proved to be a serious issue for me, rather than the "good cancer" they tried to tell me I had.

Posted 4/12/2013 4:04 PM (GMT 0)
Wessy, if it makes you feel better, my mother will also not talk about my dad´s PC. For example, she will come home and talk about her friend´s toothache for half an hour and not say one word about PC. She never asks how he is feeling, etc. It is a form of denial. Whether it is associated with a particular personality type or just a coping technique, I am not sure. You will have to find your support elsewhere. I know it is not right and does not feel right, but that´s the reality and that is what you will have to do. Take comfort in your really good stats and other things you enjoy in life.
Posted 4/12/2013 4:11 PM (GMT 0)
Wessy, I can't add much to what clocknut added, please consider the points he is making.

For what it's worth my wife never asks me about my PCa, and the only time it comes up is if I mention something about what may be happening out here on HW, or about a study I've read about, and so on. Initially I thought that she either didn't care or was too scared; despite the fact (or perhaps because of the fact?) that things continue to go extremely well for me, the topic just seems to be avoided.

Again I think it goes back to clock's very first sentence "I'm not sure people who have never received a cancer diagnosis can really understand what it's like for those of us who have."

Hang in there, remember it's tough on the ladies here too.

HW sisters, please weigh in and give Wessy the perspective from your point of view. . .
Posted 4/12/2013 4:12 PM (GMT 0)
To paraphrase a famous phrase, "It takes a village to support someone with cancer". While it can be disappointing that someone as close to us as our wife does not want to talk about cancer, it's not that unusual.

We find support where we get it, online, in group support, with an understanding friend. When I got diagnosed with PCa, I met for lunch regularly with someone who had been through cancer (bladder) and supported me through that difficult time in ways my wife did/could not.

And when I revealed to friends and family that I had prostate cancer, I was met with mostly silence, after the initial requisite 'I'm sorry to hear that' reply.

Forums like this one are a godsend because everyone here 'gets
it' and will support others in the same way that they are supported. I'm not as active here anymore because I work and care for my elderly parents.
Posted 4/12/2013 4:20 PM (GMT 0)
Wessy, It's Friday so let me tell you a joke.


A young man is traveling by night train to a business meeting and, since the meeting is first thing in the morning he books a bed in a sleeper car so he can arrive rested. There is an elderly lady in the bunk under him and he wishes her a good night as he climbs the ladder and pulls the curtain shut. The rhythmic noise of the wheels on the rails is soothing and he is almost asleep when he hears the lady muttering.

Oy, am I thirsty. ... so thirsty. Ah me, so dry. ... thirsty...

He tries to ignore it but he gradually realizes that he will be unable to sleep so he climbs down, goes to the water fountain at the end of the car, pulls the white paper cone out of the dispenser and gets a glass of water. He offers it to her and she gratefully accepts it with effusive thanks. He climbs back up. The clickety-clack of the wheels is soothing. He is almost asleep when...

Oy, was I thirsty. ... I was sooo thirsty. Ah me, I was dry. ... thirsty...


My wife is a trooper. She will help me with anything I need to do. But she doesn't much like to help me worry about things I can't do anything about, or with second-guessing things that can't be changed. She has worries of her own.

Looking over your list of things your wife will and won't talk about it strikes me that she is on board for the stuff that still needs to be dealt with -- ED, incontinence, and probably, although you don't mention it, your ongoing PSA monitoring -- but less interested in the cancer itself which she hopes has been eliminated.

Your signature ends with a complaint about ED ("Pills don't help at all.") Have you talked to your urologist about that lately? Pills aren't all there is. Perhaps if you had a project with some actual goal in mind...
Posted 4/12/2013 4:46 PM (GMT 0)
I will agree that unless the person has had the medical diagnosis they rarely can understand the myriad of emotions. I think this holds true with any serious medical diagnosis.
Posted 4/12/2013 5:03 PM (GMT 0)
prostate cancer is the second cancer that harold has had to deal with. he had lymphoma 2 years ago and is in remission. he goes for a pet scan every 6 months and i am a nervous wreck till he gets the results - so far so good.
i know i will be a wreck when he has his first post treatment psa test in june. i know he is scared since every one of his siblings had cancer and his brother died from colon cancer.
we live life one day at a time and take joy in the small things. it is scary.
Posted 4/12/2013 5:16 PM (GMT 0)
Your wife believes as, you should, that this season of your life is over and I agree with her. Did she support you while you were going thru this? Sometimes people, for whatever reason, hang on to the events of there life , like friends and oddly are hesitant to let them go. My take is you are still mad you got this disease and are grieving for the life you had prior to it. She wants you to go on and you don't want to. You have ED, deal with it. Now you excescerbate the situation by " not talking about anything"
and sharing things about your wife with this forum. I for one would like to hear her side of this story. My God man, you are in all probability cured, based on pathology. heal the relationship with your wife and stop grieving your past. Sorry Wessy, but thats my take. you and others can interpret this "take" anyway you want.
Posted 4/12/2013 5:35 PM (GMT 0)
My husband is the most upbeat, optimistic person you can find. But he is that way partly because he doesn't focus on anything negative. He is always hopeful and positive that things will turn out well. Although he is well aware that his cancer could return and he would need additional treatment, and he is following an ED recovery program, he doesn't like to talk about it. I don't force the issue. He will talk about anything we need to discuss though.

He has an intense job with a lot of overtime so when he is home he wants to decompress, not talk about PCa.

I don't talk about PCa with my friends. It's not that they aren't interested; it's just that I consider our journey with it very personal, especially the side effects from surgery. This forum has been a lifesaver for me because it is the only way I can connect with others dealing with PCa.
Posted 4/12/2013 5:44 PM (GMT 0)
My wife and I have evolved on this type of communication. We are very open and transparent with each other. However, there comes a point when it is somewhat time to move on with the conversation. We did not explicitly agree on the timing but it just happened naturally, between us. Now, we may make passing reference to cancer. We still laugh about some of our experiences. We know a recurrence is possible. But, we don't talk gloom and doom anymore or rehash ground taken in my cancer battle. It is, more and more, a background item in our lives.

Another key point in our relationship: my wife will not accept any remarks from me that somehow our sex life is diminished .. at all. She thinks we could put our sex life up against any couple our age (quality, frequency, enjoyment, etc) and they would say "wow!" Yes, we have to make some accommodations with pumps, rings, and toys. But, to her, that is just fine and the associated creativity just makes life more interesting. In her mind, if my erections come back, that is icing on the cake.

SC
Posted 4/12/2013 6:23 PM (GMT 0)
for what it's worth every time I mention cancer or allude to fears about it returning my wife and kids roll their eyes. My daughter actually says "oh my God Dad, you DON'T have cancer".


So here's the thing I have understood and learned to appreciate. They are the ones that need to live with that belief even more so than I do.


Why? I don't know. Probably because I have run that movie Peter mentioned in another thread over in my mind so many times I can deal better.

Even on the sex rehab thing. I still try to play that card with my wife. "come on, it's rehab" and now, unlike the first 18 or so months, she says "bullcrap, you have no issues, I'm tired and going to sleep".

 

Posted 4/12/2013 7:01 PM (GMT 0)
Wessy: We all deal with differently and usually we say that we are in remission. However, I totally agree with your wife saying that you don't have cancer anymore! You had a very low PSA that triggered your surgery, you were Gleason 6 and if it indeed stayed a Gleason 6 after pathology, you really don't have cancer anymore. You had similar statistics as I did and the chances that this cancer will return and affect your life is incredibly small. My wife is the exactly the same and she tells everyone that it was totally removed and I will be fine. Both of our wives are correct. They simply want to believe that we are cured and in your case and mine we really are cured!

Next I was still 100% ED at one year, but now at 21 months, I have 0% ED! It does take most of us that long to recover.

We get so involved in our cancer, urinary control, ED, etc. that it truly must get tiring for our spouses to listen over and over again. PCa is indeed more than just cancer and we have extra hurdles. But I am sure that you will make it over all of them just as I did.

Good luck.
Bill K. from NJ

PSA 3.3, Free PSA 21%, Gleason 3+4=7, 1 of 12 cores positive and 30% of that core. Neg.DRE
DaVinci Surgery 7/2011, Downgraded Gleason 3+3, 10% involvement, contained, immediate urine control. Total ED though. All following PSA's < 0.015. Now at 21 months, everything works just fine without any pills or injections.
Posted 4/12/2013 7:06 PM (GMT 0)
Wessy,

You are not wrong.

I believe your wife should be "with" you and be able to talk about and through anything that is concerning you (and vise versa for anything that is concerning to her).

You know, this has been (and is) a life-altering and life-threatening event in your life, and she is your life partner.

But what do I know, because I'm single for reasons I suppose :o)

Take care and I hope the best for you.

Posted 4/12/2013 7:17 PM (GMT 0)
Your diagnosis is still fairly young, it's quite natural that it still is high-lited in your mind, especially with the daily reminders of continence, ED, etc. And I'm guessing you're still trying to find an explanation for it happening to you, possibly trying to combat the natural fear of it's returning? If that's the case, share your reasoning in wanting to talk about it with your wife!
I had an extremely abusive childhood, and some people who had my experiences wear that 'label' throughout their life, never moving beyond it. If you aren't sharing your thoughts, fears, reasoning with your wife, she may be afraid of your 'labeling yourself', not beginning the healing journey past it...
But she also needs to understand one doesn't just 'get over having cancer' immediately, it's such an ongoing process from what I've observed, over quite a period of time.
I have read on here it can take up to 18 months+ for ED to get dealt with. Have you checked into things beyond pills? If not, why not? Get 'creative' is what I've read on here. ;)
Southern Comfort, I loved your post. I pray that's how it will be for my husband and I. :)
Posted 4/12/2013 7:34 PM (GMT 0)
sounds like your wife is having serious issues dealing with you having cancer. it's a shame she's going to shut the subject off with you. i'm lucky i'm married to a nurse, she's use to talking about and thinking about all kinds of medical stuff all the time. perhaps over time, your wife will come to a different understanding with what you are dealing with. hate to see how she would react, god forbid, if you ever have recurrence. definitely not an issue you can force on a person, for sure.

good luck, we are always here for you vent, sound off, or discuss whatever you want.

david
Posted 4/12/2013 7:54 PM (GMT 0)
Check out this article - I thought it was fantastic - should be required reading for all human beings:

articles.latimes.com/2013/apr/07/opinion/la-oe-0407-silk-ring-theory-20130407
Posted 4/12/2013 8:06 PM (GMT 0)

        Thanks everyone for listening and your words of incouragement.

I do need to change my signature right after this post.

    I have been on bimix for a month now and we are still fine tuning that.

      This site has been a real blessing to me.

        Thanks

Posted 4/12/2013 9:08 PM (GMT 0)
wessy, in time your wife will talk about it again. Maybe she just needs a temporary break.
Posted 4/12/2013 9:42 PM (GMT 0)
Truth be told, most of our wives, friends, kids, etc, don't want to hear about it or think about it. It's depressing, and really, if you don't have talk about it, it's easier to think and talk about more pleasant things.

Older people have a tendency to talk about their dictir's appointments, ailments, surgeries, medications, etc. Many of us are approaching older people status in life.

I'm kind of on your wife's side. Let's talk about retirement, the weather, grandkids, etc., but leave the PC on the back burner. Doesn't mean we don't think about it, or come here to HW to talk about it, but many of my friends, family, etc., think like your wife, had surgery, took care of thar, next issue. Kind of like a talk bladder, or hernia.

Deep down, she knows, is scared, and really does not want to think about it. Let her cope with it her way.

Good luck to you. That .09 is a little concerning to me, but with a Gleason 6, is probably no big deal, maybe some left over tissue.
Posted 4/12/2013 10:07 PM (GMT 0)
Wessy,
Take your wife out for dinner shortly with a good bottle of wine--tell her that you love her. It's time for YOU to move on regarding this issue since she's past it!! Many women handle things very differently and some--my wife is one--consider bad things in the past as done and will not talk about them..I was talking with my grandson and my wife heard us--""I thought that you were cured" was her comment..I didn't correct her..She has MS and when she went blind in 1 eye she and I talked about it for a few days and it ended. Same thing when she was bed-ridden for a week from a "pinched nerve?"...She is a strong woman and doesn't want to be perceived as "weak"..
Yes, I could say that she's in denial but after 46 years of marriage she won't change so I have to!
With your stats, you will live far longer than me so put it behind you and stop being a "wuss"...Sorry, that word slipped out since I wanted to get your attention--Now, I'll go flog myself!
Love your wife and transfer your concern for yourself to her...She will appreciate it..
Posted 4/13/2013 1:47 AM (GMT 0)
I think Goodlife nailed it. Your wife must cope the best she can. I know my wife is there whenever I need her, but we rarely speak of PCa.

Best wishes in working through this and good luck with your PCa!
Posted 4/13/2013 2:34 AM (GMT 0)
my mother is 86, her favorite topic of conversation is her BM's, followed only by detailed accounts of what she took to the town dump that week. gotta love it.

david
Posted 4/13/2013 2:54 AM (GMT 0)
Wessy,
One of the female warriors here. You've gotten some real good input on here and will continue to get support here. I can't really totally get into your wife's head - all of our journeys, personalities, etc. are so varied. I would say since you can talk about the ED and incontinence that she's not shutting you out, just the cancer. I think the suggestion of finding a group is a good one. Our journey has been long and we discuss it regularly now, but it's in our face now. Initially we talked some through each bump. He was more the one who needed to move on and I supported him in that need; but for me it was always out there. I wish so much early in our journey we had had a group like this. It would have helped immensely.......so rant, complain, share away.
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