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Posted 4/13/2013 6:23 AM (GMT 0)
Wessy,

I would highly revcommend going online to www.UsToo.org and searching for a Chapter in your area.

This is an International Prostate Cancer Support Group which holds monthly meetings and gives you the opportunity to personally share your experiences and concerns with fellow Prostate Cancer Survivors.

I am currently Co-Chairman of the UsToo Group at

Hackensack UMC in NJ and have been attending meetings there for the past 9 years (my Prostatectomy was in February 2004).

I have found great comfort and support in this Group and, also,

like to be able to offer help to both recently diagnosed men, as well as, those dealing with PCa Treatment side-effects, such as ED.

I believe that you could definitely benefit from personally interacting

with fellow Prostate Cancer Survivors.

This is not a burden you have to bear alone!!

Best Wishes,

Bob

  

 

Posted 4/13/2013 7:56 AM (GMT 0)
I am glad that I have read these posts. I am a wife and we are only at this pc stuff for just a few months. I hope I act and say the right things and give my husband all the support for as long as he needs. I know once we heard the C word our lives have and will have forever changed. Every woman handles things differently. I have been accussed of blowing up or snapping at him over what my husband thought was x, y, or z. When it had nothing to do with anything he thought. I was mad that he didn't compliment my new hair do...or he didn't pick up his mess...or he hasn't taken me to dinner and a movie forever...or recently he just bought a new gun when he was diagnosed. I passed a kidney stone a few days before his RP maybe I should go buy me new new shoes or a purse or both! Women don't try to figure us out too much...just roll with it!!
Posted 4/13/2013 11:34 AM (GMT 0)
Must say, buying a gun right after a cancer diagnosis might be something to talk to him about.
Posted 4/13/2013 12:39 PM (GMT 0)
wessy,

My wife and 3 daughters want me to move on with my life. They still talk to me about PCa but they want me to move on for my mental health. I still am having major issues with my blood counts and no T in the system so it is hard for me to move forward. I try and limit my PCa talk with them because if you do not have cancer you just cannot under stand our stress of every day life.

Take care,

Dave
Posted 4/13/2013 2:11 PM (GMT 0)
dvg - I say, buying a gun when one gets a cancer dx. doesn't sound like a healthy sign, lol. that could send the wrong signal to the spouse.

as far as your shoes, go out and buy yourself two new pairs for general principle. my wife just walked out the door to go clothes shopping, I encouraged her, and threw in some extra money for the heck of it. besides, when do most women need an excuse to buy clothes? There are 4 major clothes closets in my house, and my wife has taken over 3 1/2 of them. I am only allotted 1/2 of one, and that's in a Study. All the bedroom ones are spoken for, lol.

david
Posted 4/13/2013 2:42 PM (GMT 0)
Dave in MD...

I'm not sure I want my two children to fully understand my stress and anguish of this bullshi that hit me at 40. That's not how I want them to come of age and not how I want them to view me. That said, they are perceptive, especially my son, so they do tend to respond to me sometimes with an understanding of what they think I'm going through. Admittedly this is much more pronounced when PSA testing time comes around.

I don't think we can or should fully leave cancer behind even when our doctors tell us we are cured or in remission, but I do think we should try to find ways to move on and enjoy/live life to its fullest.

Today I woke up and went to the gym at 8am for 90 min and continued my gym reprise and enjoyed some sights in spandex. I'm not the guy who reads the Economist while on the elliptical quite yet but fear I might be ggetting there soon. Later I'm taking my son to the seediest parts of NYC for a walking tour and to take some seedy urban pictures before finding a Vietnamese restaurant for dinner. I look forward to that.

I don't want to sound patronizing, but you have a wife and three daughters, enjoy it, man.
Posted 4/13/2013 2:45 PM (GMT 0)
As always the group here comes through ,all comments are right on. Everyone handles this PCA different , who's to say what's right . Some want to keep it secret because it may make seem us less masculine , but in reality anytime you overcome something hard it makes you better and you learn from it , and you have the ability to pass it on and help others, only if their willing to listen . Spouses are part of your cancer they have to deal with it too , and sometimes should be part of support groups also .Everyone of my family has had some sort of cancer ,some taking their lives ,so I am kind of conditioned if you will ,but the most important thing I learned is cherish everyday you wake up and be thankful for the good you have . it sounds like you have more to say about your having cancer so say it and we will listen , it only works if you get it out ,then build off it use it to your advantage. We are the same age ,ed is still present but I am doing everything I can to be active and enjoy therapy and can see improvement with pills ,vac and injections , it's not as good as before but neither is anything else so what the heck , I still wake up , fish and hunt whenever I want ,work when I want ,so life is good .I hope you can make it good for you too.
Best of luck WESSY!

gams
Posted 4/13/2013 3:39 PM (GMT 0)
For those of you worried about the gun purchase, if you check out Dame Fineview's profile you will see that m'lady lists "hunting camping dirtbike ridding snowmachining" as interests. That her husband responded to his diagnosis by buying himself a gun is almost certainly a good thing. That isn't saying that she isn't entitled to a couple of pairs of shoes...
Posted 4/14/2013 5:54 AM (GMT 0)
Thanks for clearing up the gun issue...my husband LOVES fire arms. In fact on our ride home from having surgery on Wednesday...Utah to Idaho..he had to call all gunstores and ammo dealers to see if they had any 22 long rifle shells in stock. Fortunately no one had any in stock...don't tell him I said that!!
Posted 4/14/2013 1:16 PM (GMT 0)
I understand where your wife is coming from, Wessy.   You had surgery to remove the PCa and she believes it is gone.  You're cured, so let's put this behind us.  My husband and I do not discuss his cancer except when he goes for his PSA testing.  We get the results; we are relieved; and the subject isn't discussed until the nest PSA test.  This is a protective measure for her so she won't be worrying all day and night about the cancer.

It is good that you are working together on the side effects and solutions, so she hasn't completely shut you out.  You could join a support group or discuss your fears here with us.  If something really important is bothering you, write a letter.  Just a suggestion which then allows your wife to approach you IF she wants to discuss the matter.  This is her way of dealing with denial.  Please be gentle.

Oh, I like the idea of taking her to dinner and/or buying a bottle of wine.  Or take her shopping.  Or go on a vacation.  If you have Grandbabes, do something with them.  I am teasing just a little bit.  I hope things do work out and that you are indeed cured!

Peace,

Aimzee

Posted 4/14/2013 10:30 PM (GMT 0)
As the partner of a man fighting this disease, and somewhat knee deep in the hoopla right now, I can only share my thoughts about this subject. I am wondering if she is just so scared to even go back and think of what you both went through earlier. My guess is she needs some down time to also recover.

Seeing what my man is going through is so tough. I want for him what I want for myself. Little if no pain, a quality of life that could rival what we had before. The lovemaking has changed, almost not discussed once we began the HRT dance. We have always been affectionate, but the pain makes it hard to cuddle, but we do.

You have a good group of men and women here that are willing to listen. My guy doesn't dabble in HW or any other support system. I am it, and so willingly so. But you are not alone, and neither am I. (Thank you HW members). She will come around, so don't put up those walls too high.

Susan

Posted 4/15/2013 4:52 AM (GMT 0)
Wessy,
Read a thread of yours from 2 weeks ago--"Why? When?"--Taken with this threadI can see how you could be very depressed! I saw that you are retiring shortly. Many men, myself included, find retirement and PC a double whammy.
Maybe a discussion with a professional would help? Regardless, do treasure your wife of 40 years-good luck to you.
Bill
Posted 4/15/2013 11:19 AM (GMT 0)
Wessy,

My wife started to get the same attitude about my PC as your wife about this time last year. I was 9 months past surgery and undectable PSA. I took her to the GFMPH gathering in Baton Rouge and she told me on the drive down that since I was "cured" the gathering would be my last and she wanted me to leave HW for others and put my PC behind me. After spending 4 days with some great  guys and gals she told me on the way home she wanted to go again this year and that I should stay active in HW, as the support we give each other is so important. She now asks about how members we know are doing and is more involved in PC treatment and finding the cure. She became part of HW through our gathering.   The time she spent with the wives opened her eyes to how scared and worried all wives are in dealing with their husband's PC. I think putting faces on the people I talked about all the time is what helped to turn her around.

Terry

Posted 4/15/2013 11:47 AM (GMT 0)
To build on what Terry said, I think we wives are in a very peculiar place. We don't have the cancer...and yet we do. There are reasons for what our husbands are feeling, what are ours? I know before I found HW and learned that I was NOT alone, I felt very alone and that I should not talk about it. (This isn't anything my husband said - I just felt I should move on). But we do feel what our husbands feel and I learned here I am not alone in that. So many wonderful wives and husbands here on HW, all sharing the pain, the humor, the reality.
And Terry is right, it is beyond our own little abode. Once you join this journey no one wants to be on, I think it matters to continue to share and help. If I can help someone, I am so happy. If someone helps me, I am so grateful.
So yes we are all scared and worried but it really helps to know we are not alone. I think Terry's response shows that it really does go beyond just the cancer connection. True friendships are found here.
I wish your wife well; I know how hard it is.
Posted 4/16/2013 2:15 PM (GMT 0)
Hi Wessy,

My wife doesn't like when she sees me surfing HW. Nor does she like  taking about my PC. Bottom line: it makes her nervous and stressed thinking about the possibility that my PC will come back and ultimately get me. She also assumes incorrectly that my regular viewing of HW means that I'm consumed and depressed about my PC. I'm not but I still take a proactive role in my PC journey and that definitely means I continue my education about PC and the best place to stay informed for me is here.

My recent PSA went from .02 to .064. I'm hoping the fact that I used a different lab is the reason for the jump. I try to assure her when I talk about the bloodwork because she will get sick with worry. I suspect you and I are having the same problem; our wives love us too much:)

Keep up the good work!

Mike

Posted 4/16/2013 11:34 PM (GMT 0)
Well there is not much I can add that hasn't been said here already.
I know when I got PCa, I am sure my wife's future was being played on fast forward in her mind and she saw the possibility of her life without me. After surgery, my path report showed positive margins. Even though my first post-op PSA was undetectable, I still was not confident that I had beat this thing yet. My wife didn't want me to talk about the possibility of me having a recurrence because she felt we had made it through okay. She was probably in denial that it would someday come back. I can understand that and I love her for it.
I am a recovering alcoholic and the ONLY people who understand me and where I came from is another alcoholic. It is the same with us. The only people that can really relate to how we feel is another PCa survivor.

Bill
Posted 4/18/2013 12:42 AM (GMT 0)
Have your wife get a thorough physical exam for starters. Guns? I've bought and sold 20 or 30 in the 4 years since my adventure into PCa. So what? Did several hundred in the years before.
Posted 4/18/2013 1:46 PM (GMT 0)
 

I can understand some of the conversations here.

My wife stood by me when I was told I had (bladder) cancer. We cried together not knowing where it would lead. Went with me to some of the chemo visits. Stayed with me at night durnig my 12 day stay in the hospital (when some days it looked bad for me to make it out). Took me to the 13 or so procedures that I went through, some with very severe complications ( I had a reaction to an antibiotic that was real bad) during some "minor day surgeries".

She watched me almost bleed to death one day when a bandage change went bad. I know she has been effected by all of that.

Watched me wear a condom cath, leg bag and diapers, bed pad for several years. Even today, I smell of urine half the time.

I wear a bladder cancer bracelet. She does not.. Wants to forget cancer. I am on two blogs, Bladder Cancer (BCAN) and this one. I have a healing well .org site. I visit (and she sometimes if times permits comes along) others in the hospital.

 But by and large....

We do not talk about my Cancer unless it concerns her. And these days it mostly does not.. It affects my not able to get life insurance or health insurance any more. She has helped me get on with the VA however.

My ED, She is happy with us not having intercourse apparently, will not discuss it. I try to bring it up but is content with sex being a one way ticket to paradise. Does not understand or want to my need to have that ability.. so the money I would spend on Trimix she has not encouraged it and in fact discourages it without explanation.

For better or for worse.. We still have close times together but only on her terms. one way street. But I am ok with that. We still share our lives togehter. Have great kids and run a business together. I am blessed.

NEO 

Posted 4/18/2013 9:00 PM (GMT 0)
well, the wives do go thru a lot of grief and mental anguish as you go thru the treatment. It sounds like your wife's coping mechanism is to put it all out of her mind and look forward.

If I were you I would let her handle it in her way. Hey, unless a PSA test comes back bad...odds are pretty good she is right. So stop poking the lion with a stick!

Is she supportive in other ways? If not...there may be a bigger problem. Post on here. Maybe join a support group in your area. Plenty of chat rooms out there to talk to others.
Posted 4/19/2013 2:34 PM (GMT 0)
   Wow!

   Your outpouring has been unbelievable. I could never imangine a response like this. Thank you, Thank you, Thank you!

   I have taken all your words in and usually read it everyday. It helps alot. I have learned to understand her feelings because of your help.

   I do go to a mens group at a local hospital for prostate cancer support. We meet once a month and share our experiences and problems.

   I wrote more about this in   "a part 2" of wife dosen't want to hear it"

   I do not get the feedback I do in here. We are only a small group of about 6 that know each other pretty good by now.  We seldom have any new members. THAT'S why this forum is so great.

   Here we are all going through it at different stages in our journey.

   We all step up and help as best as we can.

   This is why all of you have been a blessing to me.

   Thanks,

           Wessy

 

Posted 4/19/2013 2:38 PM (GMT 0)
BTW, you guys DO realize you can have sex without using your penis! There are plenty of other ways to please your wife while waiting for Mr. Happy to learn how to stand at attention again.
Posted 1/9/2014 7:56 PM (GMT 0)
I know I'm a bit late on this...but when my husband got diagnosed--it felt like I was handed a death sentence. I have and will continue to do EVERYTHING I possibly can to learn, help ect . He is actually the one who is less likely to talk about the downside of things...he does not want to hear or believe that anyone dies of this---therefore I am only allowed to tell him optimistic stories...So basically after everyone in the house is asleep I am hiding in my bathroom bawling like a baby. I know that he "knows" what can happen, but he just does not want to believe it...so I guess we all just go on in our own way---and those of us that want to talk about it---come here:)
Posted 1/9/2014 10:19 PM (GMT 0)
Wessy, I feel for you. When my husband was diagnosed in Aug 2011, I was totally stressed out from being in a job I had hated for 6 years (stayed for the health insurance - a good thing I did) AND my mom was in late stage Alzheimer's. I don't know if it was because I had so much I thought one more thing might make me fall apart (I struggle with major chronic depression and bi-polar disorder) or if it was a defense mechanism, but his diagnosis and surgery happened so fast, it was like a blur. I'm not sure it even registered with me until months and months later when I went with him to the follow up visits. He didn't need any follow up therapy either and has had clear reports since then as well as virtually no side effects, so we were very lucky. He told me about HW and how it had helped him when he was first diagnosed and he even attended 2 GFMPH gatherings (without me). We never really discussed his PCa unless he brought it up. I would like to think I was supportive, but now I can see I could have been much more present for him. about 6 months ago, my best childhood friend was diagnosed with breast cancer. I couldn't stop talking about it. At one point, he commented that "you didn't talk about it this much when I was diagnosed." Wow, talk about a V-8 moment! I could have smacked myself in the face. Since then, I've joined this message board and also I attended the GFMPH gathering in Rochester last fall. What a great bunch of people! We are also going to the next gathering in March in Florida. I know it has helped NolaVette so much to be around these guys. He really looks forward to them and now so do I. So the upshot of all of this is, maybe your wife needs some more time or a trigger that will make her realize she try to support you when you need to talk about it. All she need do, it sounds to me, is LISTEN when you want to talk about the PCa. This message board is a FABULOUS place to VENT. Having said that, should you FIND a way to get her to listen, please patent it.....because (shhh, this is a secret).....women like to TALK....even though the good Lord gave us 2 ears and 1 mouth which I've been told means we should listen twice as much as we talk. Hope you get a giggle from my twisted sense of humor.
Posted 1/9/2014 11:05 PM (GMT 0)
I find it frustrating as far as my wife is concerned I have had surgery had prostate removed
I'm cured she gets cannot understand my stress when my PSA test comes around her attitude
is don't get stressed you are OK you had the prostate remove why are you getting so stressed.
Only others with PC fully understand.
English Rodger.
Posted 1/10/2014 1:09 PM (GMT 0)
My wife also resists talking, or hearing me talk about, my cancer. In fact, she has always reacted to illness -- especially her own -- with denial. It is her coping mechanism, though it often hurts me. Don't take it personally. My wife shows through her actions that she understands what it is going on and cares, even if putting it into words scares her and makes it seem too real. She has also found others to talk to. I am proud that she can even do that, which is hard for her. For me, the talking is a kind of intimacy, but for her it is a sort of acknowledgement of defeat. We just have to accept that we each have to find our own way to deal with this terrible trauma and our own ways to give comfort. The alternative is festering anger that wastes what little time we have together. Sometimes my wife surprises me by doing or saying something that shows that she is trying hard to support me in the ways I need. Be patient. Our wives' suffering does not end when we die. And some, like my wife, have a high risk of suffering from cancer later -- without my/our support.
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