CSN Login
Members Online: 10

expressing yourself does make a difference

TomBk's picture
TomBk
Posts: 58
Joined: Jul 2005

I know sometimes when you have cancer especially this cancer that it all seems so pointless telling a bunch of strangers how you feel and what you are going through. I wish to God my dad had told me how he felt when he had heart problems, my uncle when he had Prostate cancer, and all the rest of the men in my family with their serious ailments. I could have been there for them and shared their pain and it would have drawn us closer together and given me a better understanding as a young man. It would have prepared me for my own trials.

Maybe some or all of you guys feel that there is nothing a stranger can do to make you feel better. Wrong. I am from Oklahoma. We have been bombed, had terrible tornadoes rip through some of our cities and now the state is on fire all the time. The kindnesses of strangers means alot to us. It creates a knot in your throat and makes you want to reach out to help some other person in peril. The kindnesses of strangers is what separates us from the animals. It has helped us to rebuild our lives and to have hope and a positive attitude in spite of everything.
Everytime you share your thoughts and experiences you are helping another man to understand that he is not alone, what he can do to find help, how he can choose his treatments. Sometimes just expressing your feelings lets the rest of us know we are normal and that we aren't the only ones who feel this way. Sometimes we don't need a solution ; we just need to talk to someone. I thank each and everyone one of you who posts your expression where someone can read it. It really does help, it really does.

stuart
Posts: 88
Joined: Dec 2001

Tom, I'm 57 and was diagnosed when I was 52...I have been going to a man-to-man support group for almost five years and I'm about the youngest...No one ever talks about how they feel emotionally only about treatment options...So maybe you will get something going on this site and more guys will open up...So it goes.

TomBk's picture
TomBk
Posts: 58
Joined: Jul 2005

Stuart,
You are so right! I was 53 when first diagnosed and now I am 54. So I felt like I was way too young to deal with anything of this magnitude attacking my sex organs; I wasn't supposed to deal with anything like this until I was 80 or so.
How have you felt about what has happened to you? Are you comfortable enough to speak about it?
I know for myself I felt as though I was being robbed of something that was an important part of my life:sex. Also I felt like my identity was under attack. I don't know about other men but for myself I viewed myself as Tom the man not just Tom.

Morris
Posts: 12
Joined: Dec 2002

Tom,
I like Stuart am 57 and had Prostate cancer when I was 53.
You are so right about how great it would have been to know about it when I was younger ,but since I have had no living adult males in the family for many years and never knew anyone who had this cancer--I had nobody (or so I thought) to talk to.I wish I had known about this sight.
I found out I had it by accident , I was due for a PSI and I told my wife I was not taking the test.Lucky for me--she insisted on it--she saved my life.
My normal score was 4,at the time of the test it had gone to 7 since the previous year.The Dr. wanted to wait 30 days for a retest and it had gone to 10.
I had the RP in Phoenix/Mayo Clinic and have had a PSA of .035 ever since.
I posted MANY messages on this sight telling men and their wives if they needed someone to talk to who "been there - done that"-- to e-mail me-------so far "0" contacts.
I know there are lots of guys who dont want to talk about it because its not MACHO ---well--how mach is dying and leaving your wife and kids behind because YOU were too AFRAID to TALK about,get the low down on procedures etc., better yet "HOW MACHO IS BEING DEAD"

TomBk's picture
TomBk
Posts: 58
Joined: Jul 2005

Morris,
It does my heart good to talk to you guys. It was a rough go for a long time but I am making good progress. Of course I am still dealing with the changes it has left me with but I have been doing better since talking to all of you guys.
I agree with you that we need to talk about all aspects of this disease. Everyday guys out there are coming down with the disease and on the outside they are tough but on the inside they are scared because so much of it is unknown to them and they are not comfortable expressing their feelings especially if other men don't. But it helps us all if we do talk about it so we know what to expect and that the feelings we are having are NORMAL feelings.
I don't normally speak up but since having this disease and left to myself for so long to 'deal with it' I decided that someone needs to speak up about the emotional slam that sometimes comes with this disease. (probabaly often comes with this disease.) I am willing to talk to anyone; it helps me and I hope it helps someone else out there. Thanks again.

Willx's picture
Willx
Posts: 41
Joined: Jul 2005

Everyone here is expressing what I think most of us feel as men. That is, having prostate cancer and the treatments with the consequences they bring have a disastrous effect on us, as men. Being younger or older doesn't make it any easier, although I wish I had made it a few more years before getting my diagnosis. I was 58, am 66 now, and I'm still somewhat pissed that my dick won't get hard the way it used to and I honestly wish I could climax with an ejaculation again. I don't dwell in the past about this, but all the glory talk about being tough and positive won't bring back that part of me which has been lost. Sorry for my bad attitude.

TomBk's picture
TomBk
Posts: 58
Joined: Jul 2005

Will,
No, don't apologize. Your feelings are as valid as anyone else's. It pisses me off too. haha. I miss the ejaculating too but I have the implants and can get hard and have orgasms still. The penis is not as round as I wish it to be but I don't think it is noticeable. You are absolutely right. dwelling on what we have lost is futile and self-defeating but it is also hard not to think back to the way things were. That's why it is good to have someone who has been there to be there for support. we are all in the same boat: we have all been affected to a greater or lesser degree. I hope you find a solution that is agreeable to you and that you can live with.

stuart
Posts: 88
Joined: Dec 2001

Guys, lets face the facts, it's never going to be the way it was...I'm just trying to accept the facts and find a way to feel like a man...and it's not always easy...Sometimes I feel that if I knew what was in store I would not have treated...I have no sexuality...On the other hand I have kids so I must act like everything is ok...Sorry for sounding sorry for my self but today that's the way I feel...

TomBk's picture
TomBk
Posts: 58
Joined: Jul 2005

Hey Stuart,
I am so sorry I didn't reply to this message from you. How are you doing now? You are acting normal so don't worry about it. Hey, some days I want to scream but then I let go of it and talk to you guys. Since I know you guys are out there it helps me to get past this. You need to talk long and hard about all that you feel about your experience and don't keep it to yourself. You are still a man. You lost your prostate gland not your testicles, remember that. Nothing else about you has changed except the terrific shock this has put you through.

Sir, how long ago did you recieve treatment? Was it surgery or radiation or what? I went through a stage where I felt like an "it" but it was just a stage.

You are alive Stuart, you are beating the disease. The sexuality will surely return. Just be patient. Man, I had nerve sparing surgery except they had to remove one nerve bundle so my erectile function became a major factor. I had ED big time. But your body goes through shock as well and for a time you may feel like you have no sexual desire at all. It really freaked me out to go from heavy desire to no desire. I was not ready to give up sex.

Heal first and then concentrate on the sex. Your poor body has been through a lot. You sound depressed. May I ask if you are on any anti-depressants? If you are the wrong one will shut down your libido (sexual drive). I have had the penile implants and I am only 54. My penis was shrinking in size for some unexplainable reason before I opted for the implants and I was going nuts. I bit the bullet and went for it and never looked back. I have clinical depression so I found an anti-depressant that would not block sexual desire: Nefazodone. It works great. I can masturbate twice a day if I want and have explosive orgasms. Of course, it is a big change but I have adapted to the 'new me' and I am as horny as ever. You'll be alright.

Are you married or have a significant other? I assume you are married because you mentioned grand children. Have you talked with your wife about all that you are going through? If not, she may think you are drawing away from her. She could be your best ally. Talk to her. Talk to us. Talk to your closest buddies if they will let you. I will talk to you anytime you want, just don't let it get the best of you. Okay? You'll get back to good times again. You'll see.

HotMoCpl
Posts: 2
Joined: Mar 2006

This is getting rough. I'm a week from surgery and my wife still doesn't ask any questions or discuss anything with me. Tomorrow I'm cancelling my preop and surgical date, and I'm goinng to tell her today that she can't say, "its your body" and then turn around and get upset when I talk about NOT getting the surgery.

By the way, I feel everything you guys are talking about here. I've been in a lot of bad situations having been in the Army, but this one has me feeling like the red dot is on me no matter which way I turn. It really sucks.

rogermoore's picture
rogermoore
Posts: 265
Joined: Mar 2002

Hot,

I know it is tough, but not having the surgery is certainly NOT the avenue you want to take. Your wife is very apprehensive and rightfully so. This surgery will impact her life as well.

I haven't seen any of your postings so I know nothing about your situation. i.e. age? Gleason score? geographical location? other physical conditions? etc.

Have you suggested your wife visit this site, or read some of your research? She may be only aware of the negative consequences. What type of surgery have you decided to have. Have you gotten a second opinion?

Feel free to e-mail me if I can be of any further support or answer any of your questions.

Roger

TomBk's picture
TomBk
Posts: 58
Joined: Jul 2005

Hotmo,
Hey, relax. I think you should think this out. How long has it been since you were diagnosed with this cancer? Have you been given any information on your options? Wives don't always know what to do or what to say. Don't be so hard on her, okay? This is hard for both of you but you can come out on top. it can turn out much better than you think.

I totally freaked out when I was first told. keep coming to this site and let us know your fears, questions or whatever. We'll be glad to help. my ordeal was last year. i am almost 55 and I don't know how old you are but most guys in the Army are in good shape and that helps for a faster recovery. If at all possible ask for nerve sparing surgery. Trust me, you want to keep the two nerve bundles that cradle the prostate gland. But there are all kinds of options out there. Walking away from it is not going to make it go away and the sooner you act the better chances you have. please let me know how you are doing so I can offer some suggetions. the first thing you need to do is talk openly with your doctor. If he is closed mouth then find another doctor.

Subscribe with RSS
About Cancer Society

The content on this site is for informational purposes only. It is not a substitute for professional medical advice. Do not use this information to diagnose or treat a health problem or disease without consulting with a qualified healthcare provider. Please consult your healthcare provider with any questions or concerns you may have regarding your condition. Use of this online service is subject to the disclaimer and the terms and conditions.

Copyright 2000-2014 © Cancer Survivors Network