Neo,

Normal is kind of what we can learn to accept.

When you are wet and cursing the appliance, remember your cancer is gone and that prostate removal alone can result in incontinence.

As far as sex, some lucky men get back into action within a few months. Some need help and some don't. It is never "the same". But with open dialogue, you can learn to accept the new "normal". There are options.

Much of the physical we know is related to the mental and emotional. So, how compromised we feel about ourselves and our sexuality relates to how our bodies might respond, how one can be intimate, how open we are to options, etc.

Maybe I get the "no erection" thing more than most being TG.

I am glad that men and women are finally beginning to openly talk about life after (whether it be prostate removal or masectomy...)

http://www.vancouversun.com/health/prostate+removal+surgery+very+same+before/3600403/story.html

Thanks for the link SG, interesting. And I'm assuming that you being "TG" is in relation to you being a part of the LGBT group and not that you're a Top Gun?


From the article, "Prostate cancer throws mortality and sexuality in the ring together: If you win your life, you could lose your erection." I can totally relate to this sentence.


I'm ok with all this though, at least I'm sure I will be. I enjoy pleasing my wife, there'll be no problem there. As for me, well there's this thing called a "dry orgasm", which makes me think I'm physically reverting back to being a pubescent boy now, where "shooting blanks" will once again become a reality. {smile} I may end up trying the miracle drug viagra, something I never would've dreamed I would need in my life. You see, the biggest thing, no pun intended, is that I've never had a problem with getting erections. Never. So it's turning out to be a bit of personal culture shock for me, like I've been put out to pasture or something.


But again, I'm going to be ok with this. I'm 57 years old and have had a very active sex life in the last 40 odd years. This all could've turned out so much worse. I realize this and I'm therefore happy for it.

You're welcome.

Yes, the TG is part of that community. So I have lots of experience with having a happy and healthy sex life without a penile erection.

You are a brave and strong man to show vulnerability.

Thank you for all you are doing for other men and those who love them.

Hi Neo

I don't know if you have a different type of bladder bag than my husband did? His was changed regularly everyday. It seems to me the  acid in the urine   erodes  it ?  At night for sleeping he used  a larger bag (with a long tube)  that was attached near the floor to  the bed frame. The bag broke once or twice in the daytime during some months , not often at all that I recall. The bags may be overstocked meaning old stock ( weakened?) sometimes. I don't know, they are  made in China.

He received some compensation from the gov't for the cost of the bags, not enough but it was a help. His dr. had filled out and sent in the necessary  forms. Perhaps your health plan pays ? He didn't have a plan. He was a senior.  He also claimed his own cost on his income tax return.

We were both close to age 70 when he got sick so we weren't exactly  chasing each other around the room  frolicking. He didn't talk about it but I would say  sex is an extremely important issue for a man so I understand what you are saying. It must be almost like the loss of one's self image.  I'm sure my husband was depressed about it even if he wasn't the youngest. I wasn't bothered at all.....long gone over the hill....lol. I was happy he was alive and well.

I can identify a bit with you since I've been wearing a little gadget the size of an iphone (but thicker with 2 AA batteries)   on my person  at my waist called the pico wound therapy system ( a vaccum). Its attached to a long tube in my stomach  wound  and it goes flying down my  pant leg sometimes. Its a nuisance!  I don't have pockets to carry it in. I think there's a strap of some kind I can get. I'm on a break from it for 2 weeks and I feel more free.

I'm so sorry this had to happen to you at such a young age. When we are in  our 70's we're not too surprised. I  have cranky spells and I  yell at my grandson but I'm doing better lately.

Neo, I echo what SG  says about you being a strong and brave man to show vulnerability.........

After major changes it's no easy thing to accept the "new" normal.

I empathise what you say about serious illness developing our understanding of love.

It's my wish that your journal here will be of benefit not only to you, but to others facing major health changes in their life.

I recently heard a fascinating lecture by an author on what constitutes "the good life."

In his opinion we tend to think it's about happiness and pleasure. He thinks we err in this assumption - a good life is a whole life.

By that he means experiencing life in it's entirety - our fears and trials are just as important as our pleasures. He suggests that it's precisely in these "dark moments of the soul" that we develop our empathy and compassion for others and enrich our understanding of love. (as you have done).

Stardust, I wear a two piece urostomy appliance bag system now. Once things are settled down I should be able to wear a single appliance and bag for about a week. I hook up to big plastic bottle at night, no worry about it breaking. That must've been pretty gross to have a bag break on you. I'm always conscious of the tube when I sleep and can't sleep for long on my left side. I can never sleep on my stomach again.


I'm can claim all this paraphernalia through extended health, so that'll be some relief, though I don't know how long extended health lasts after I'm retired, (which will still be years away).


Thanks again for well wishes Stardust. I hope you're feeling better, and it sounds like you're not going to miss your pico gadget when you do.

Neo

Oops...I think I'm not familiar with your bag system. Pardon my French but yes....the tube is a bitch, tell me about it ...and I'm  sleeping with an iphone (pun) on my stomach....I think we sleep with one eye open.  Poor you....you can't get free....but it sounds like things will improve and be more easy as time goes by. I hope so....!

We, as people and as a society, need to understand what "normal" might be. Our "normal" may not be another's "normal" and how we see, think, feel about "normal" or "our normal" may make what is difficult on them harder or impossible.

Threads like this help immensely. The human voice and face given to them makes us think and rethink. We feel for the poster and we listen. We learn to understand. We are struck with empathy. We may not know their "normal" but we can start to include it in our sense of "normal".

It can provide comfort and hope to those who find it in short supply.

A very close friend needed a colostomy due to cancer. He was not saying, "I am glad to be alive".He was propbably silently wishing the cancer had killed him. He was vital and fit. He was also a social butterfly. His colostomy, or response to it, ruined his life. Now, it was not because of the appliance. It worked perfectly. He, however, felt unattractive and repulsive. He blamed his colostomy for his impotence. It was a side effect, because of nothing pysical but everything emotionally and mentally. (Sex is mainly between the ears.)

Instead of pulling his wife closer, he pushed her away. He was stoic and silent. He refused to go to support groups, because he did not want to talk about it. He moved to another bedroom.  He also pushed others away. He had become a recluse. He would not attend church. He would not go out to eat or to dinner at anyone's home. The likely reason is that the noise from the colostomy embarrassed him and because people are ignorant of those noises, because it is not "normal", the embarrassment was amplified. People can turn and stare and make faces. They do not understand that the sound of flatulence is "normal".

His marriage ended within a few years.

That should not be the "normal" in our society.

Sadly, it can be.

Threads like this can change that. We all need a new normal.

SG

Thanks for sharing this sad story. I well believe there are many more like it. Its educational because its  something most of us would never think about.

It is a sad story SG. Tolerance and compassion should be the keynotes to our new world. We're on our way, with things like wheel chair accessibilities in our society, but we still have so much farther to go. I'm sure that, with the life style you're living, you find prejudice and unacceptance to be a huge factor around you.


Regarding sex being "mainly between the ears", this is very true. As I said above, I'm sure I would be seeing things differently, likely with a bitter attitude, if I had to go through this as a younger man. I don't "feel" very sexy with this plastic lamprey attached to my side.
I do, however, have a smaller bag that I can attach and I am going to order a silk cummerbund that I saw on line. Now if I could only get the private to stand at attention... {wink}

Too funny! Don't ever, ever, ever lose that sense of humour!

Nice to "see" you, Neo......

I'm going to interpret the photo of you as your new avatar as a symbol of you accepting and feeling comfortable with your life. (For no other reason than I choose too!)

Yea, that's about it Pilgrim, it's good to be alive. I'll probably change it to something more interesting one day, like a crop circle or maybe a UFO.

i liked your previous 'upside down avatar' more; your topsy turvy life :3

keep up the writin' and the experiencin'

Thanks Inanna.

Hey Neo...you're one cool dude....lookin' good........you look fit.

Thanks stardust.


We had a good laugh last night, 'cause I just pulling some banana bread from oven, after I had done the dishes, and after I done the laundry that day, and I said to my wife "you've never had it so good, I'm a new man whose been broken to domestication". She laughed and said "Yea, we should've done this a long time ago".

Well, she's kept her sense of humour, as well as her marriage vows, in the face of adversity. Good for her!

In sickness and in health,

For richer or for poorer,

Till death do us part.

LOL@Neo..that's so funny.

good story Neo!  Your wife sounds like a real gem.  My own husband is retired, and I must say he's become a stellar househusband - cooking, cleaning, laundry ... I'm feeling very spoiled!  Keep up the good work my friend!

Hey Neo:    yay viagra

So yesterday I went out on my first social in months. We drove up to meet my in-laws so that we could take them out for lunch, in lieu of Mother Days, which we had missed.


My friends where also camping near by so after lunch we stopped in for a beer and ended up staying for dinner. There were few "ostomy" jokes during the day, but we all had a great time. Especially me, it was good to get out socialize again.


I was worried however. The day before I was doing laundry and suddenly felt a pain in my abdomen, a pain that felt like a hernia. I immediately dropped everything and sat down for the rest of the day. While visiting my friends yesterday, a couple of us drove over the Scout Camp to check it out. We were hiking to the end of the property line when I felt this pain again. I instinctively put my hand on my abdomen and kept it there while we walked back. I think it's ok, I just have to be careful and not try to do too much. (I'm a typical guy, I guess)


Jlin, I agree, "yay viagra", but even that may still have to wait a little bit until I'm fully healed. I also had to back out of a 7 day canoe trip with the Scouts in July. Even though I'm expecting to be "almost" fully healed by then, I'm pretty sure that 7 days of canoeing would not be a good thing for me this summer.

That's some pretty good thinking, Neo.  Caring thoughts continue to be with you.