Have you found someone you can *really* talk to?

I'm not sure about even posting this question, but it's been bothering me.

Other than this forum, where have people found someone who will truly listen, and with whom you can be totally honest? Maybe this takes a professional?

There are restrictions on most relationships that constrain honest open communication about such a difficult topic. A spouse may be understanding but they have their own involvement as our partners, and can't necessarily take the full load of our concerns and would want to hear that everything's ok so we may pretend it is (it will all be ok, we'll get through this just fine, odds are really in our favor, blah blah).

Friends seem fairly limited in ability to absorb information, and will be supportive but want to hear that everything's ok so we'll pretend it is (oh yeah, feeling fine, things are going great, really confident in good outcome, blah blah).

Clergy want to hear few details but push specific types of coping, handling it the way we're supposed to, so we pretend we are (oh yeah, I'm trusting in whatever for the outcome, blah blah).

The range of questions, fears, the up and down mind game of this disease, are still messing with me. I'm feeling a little frustrated I guess. Who do you tell that you're actually scared witless, may be facing a really unpleasant outcome in anywhere from a few years to a couple decades (or not), but will definitely have serious side effects from the treatments? We have actual discussions and decisions about the best way to be effectively castrated, for heaven's sake!! Let's attack the primary physical aspects of being male, our entire psyche developed over a lifetime of experience and programming.

Just venting here a bit, I guess, maybe one of the down days. But I am curious if people have found someone they can just be completely open with about this mess...

For me, and in this order:

1. My wife
2. My daughter
3. My last boss

david

..Sometimes I think we must be our own best friend, I talk to myself constantly. I think I'm full blown nutz brother, but I try to make sense to myself. Of course that only helps so much, we need to communicate our ideas and or feelings to people we trust and respect. I have a few family and friends I give bits and pieces to, but like you said, when I get to deep or to real for them they say hopeful wishful things without a basis. Nice but not always reality. Hey, I hope they are right :) You see I am nutz LOL...
.......in good faith brother.......Nick.....

P.S. this place is a great place to share, they understand like nobodies business.. Thanks HW PCa Family..

This is a really good post. A great post even.

I'll try to respond from my own reflections, but these are down the road reflections. This is an evolved perspective.

I've had my understanding wife from the get go. I've had HealingWell along my rout, too. But when I first started out I felt alone and it's the worst feeling. I was a young guy that had few peers. My friends here were supportive but knew my case sucked. I could not turn to my friends other than to hear the "you're gonna get through this" voice which I doubted. And don't get me wrong I needed to hear that anyway. I was a near stage 4 guy and had poor prognostic indicators and I still do. I never said anything to my clergy at the time though I eventually did. And when I did I had new clergy that really didn't know me they couldn't comfort me with advice.

To add gasoline into the fire I had started early HT and added radiation. In an era that was not advisable.

I adopted an early slogan. That was to stay positive. I made it a message pointing outward to other folks but I think I did it for myself. The truth was that I wasn't positive at all. I had depression setting in and I was in denial. And when my mother died in the middle of all this I was not in a good frame of mind.

Eventually I had to cope on my terms. The support helped but it was up to me to accept that this disease is what it is. I had cancer and while I felt alone I only hoped that the fear would go away. But it only did to a point. Still today I have to get those PSA tests with all I saw though it's not so bad anymore..

My advice?

Redwing hang in there. You are not alone but you probably don't see it that way. You are not like anyone else and you have to balance that. Stay positive and I mean that.

Your post made me go back to a darker day but it was healthier for me right now than likely for you. That HT sucks and it plays games on people. Don't let it I say.

Vent away. But then get back to winning this battle! That will solve a lot.

Tony

I can talk to my wife about every single aspect of PCa.
I can talk to the docs about 90% of stuff. (I don't feel the need to talk too much to them about my sex life, but I guess that if I had ED it would be talked baout more)
I can talk to very few others about any aspect of PCa. But I don't for instance feel the need to talk to my children or many other people about stuff like ED any more than I had the need to talk to them about my sex life before PCa.

I have a couple of friends who are smart enough to have appreciated what may be wrong and when they have been the first ones to mention say ED or incontience then I can almost talk freely to them - interestingly they are both female friends.

Alf

I found a good head shrinker (psychologist) years ago to help me work things out.

You don't get different opinions and or wear your friends out from talking about YOUR problems.

Another point specifically to how you deal with wife and friends. Take this in the spirit in which it is given. Stop the "Blahs Blahs" with friends and wife and communicate your feelings, they are there to help you in these instances. They are not there in, these instances, for You to help them feel good. Their instances will come in time, then you reciprocate. I know, as Señor Wences {google} used to say, " easy for you deefeecult for me." Play on…...

i was lucky, wife, sister, dad and mother and good friends. All them always available and very good resources as they were not only smart people, but well in tune with my personality and emotions.

My two best friends are driving up from Rome right now to have dinner with me cause they could tell from my voice that i'm at my limit here with my mum's situation.

Human spirit at its best. Only problem is that sometimes that isn't enough either, we all have our very dark moments we have to tackle alone.

My wife is the person I talk to. She has been with me through the whole experience, from diagnosis through surgery and now rehabilitation to help me recover as much continence and potency as possible. She keeps me grounded and gives me encouragement when I get discouraged. I try to stay positive because she lost her mom to breast cancer four years ago and I don't want her to relive that experience. It helps that she's a Registered Nurse and can understand all the medical terminology we've encountered along the way. But she's no expert in prostate cancer; so we've both learned a lot over the past two years. She helps me celebrate the successes, which on a daily basis are often small, and picks me up when I have setbacks. I don't think I would have gotten as far along as I have without her help.

Redwing,
This is such an important topic. I have written here about how my wife has problems with empathy, so I really can't share much of the emotional stuff with her. She is, however, a problem solver, so she's great with the logistical stuff.
I have one good male friend and he can listen well, but it's hard for non-PCa people to fully relate. After all, they don't pee in their pants :). I've got a great therapist, so that's my best resource for the psychological stuff: fears, frustrations, etc. Just got out of a bout of depression thanks to her.
I can't say enough about the camaraderie here on the forum. It's one place I've found where men are willing to share their feelings.
Best of luck!

I didn't mention the GFMPH crew, since the context of the post was people met in places other than HW. 

So yes, if you consider that over the last few days I've been on the phone with more GFMPH folks than all other calls together, it takes a different light. And I did walk into the back yard at Cajun Jeff's the first time without having met a one of them in person before.

They convinced me to be a Mod, so there is power there that can overwhelm even the good sense that told me not to do it ...

My wife is my best friend. Second marriage for both of us. In fact we were friends for a few years before we became romantically involved. But that said, I guess I don't believe in total honesty or in worrying too much about what condition my condition is in. I'm a 50s kind of guy. Where I come from you trust your own judgment, sit in the back of the room, and keep an eye on the doors and windows. My wife is kind of the same way, which I guess is why I trust her and why I know she worries about and researches things I sometimes do, and sometimes don't, bother to worry about myself.

English Alf - yeah, that is the unpleasant outcome probably everyone here is endeavoring to avoid. While I try not to spend time thinking about that specifically, being diagnosed as I have been has certainly made me face my own mortality in a very new, very real way. Pondering that road leads to dark thoughts that I'm not really ready yet to entertain. I haven't talked to *anyone* about that....