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support groups

Joey Bag of donuts
Posts: 1
Joined: Oct 2010

I belong to a man to man group in the Albany, NY area. The area I am most interested in is dealing with the fact that after treatment the mental effects of this disease are more distressing than the disease itself. My concern is primarily for the answers I seek on how to deal with this and furthermore how can I use this information to provide support and comfort to the other members of my group. Somehow most of the meetings we have all wind up discussing treatment for onset, not how to deal with it after. Any ideas,thoughts or suggestions on what we can do to truly make this support oriented. Does this occur in your group and if so, how did you handle it.

142
Posts: 169
Joined: Dec 2009

Does your group have a program (i.e. outside speaker on a selected subject)? If not, you might suggest to your co-ordinator that they ask local mental health agencies / facilities if anyone could do a focused presentation. Then the wrap-up meeting would be "baited" for this sort of discussion.

I belong to two groups, and both have "outside" presentations as part of the program. It takes a lot of work on the part of the co-ordinators to get professionals to donate the time and effort, but I think the value is certainly there.

Swingshiftworker
Posts: 1013
Joined: Mar 2010

I attended one support group meeting at Kaiser but I didn't find it of much use and didn't go again.

There were a couple of members who had received treatment -- surgery -- years earlier who volunteer their time to help others, but most of the other members where patients (like me) who were just recently diagnosed w/PCa (onset) and their (and my) concerns were mainly with what treatment options to consider and NOT how to cope w/the cancer following diagnosis or treatment.

There was also a physician in attendance, but he was a surgeon and would offer no useful information on other forms of treatment. I was NOT interested in surgery as an option and, thus, found the support meeting useless to me. I did my own research and made my own treatment choice based on that.

Not sure what you can do to make your support group more useful to you, except to be proactive in laying your concerns on the table to see if the others are willing and/or able to help address them. If they're not able to do that, this and other online forums are your best bet.

Good luck!

Trew
Posts: 920
Joined: Jan 2010

Joey, we are dealing with very personal stuff on the other side of PC. what do you expect from a man? In public? its challenginng enough seeking answers to terrible questions behind an assumed user name.

Every man knows, but how do you let others know- PC is a 1000x different than getting an appendix out, or a hernia repaired. women have a hard time understanding how much a man is defined by his manhood. I public, to admit "that" is gone- I"m somehow lesser than other men?

doc told me this week, normal function will never return. I think, and this sounds so stupid to a woman perhaps, but in some ways I think I would rather lose a leg than to lose urinary control and normal sexual function. Someone tell me I"m wrongon this if you can, but this has been a very hard journey for me. Excuse the word "hard." I meant challenging. I'm ok.

Trew
Posts: 920
Joined: Jan 2010

Joey, we are dealing with very personal stuff on the other side of PC. what do you expect from a man? In public? its challenginng enough seeking answers to terrible questions behind an assumed user name.

Every man knows, but how do you let others know- PC is a 1000x different than getting an appendix out, or a hernia repaired. women have a hard time understanding how much a man is defined by his manhood. In public, to admit "that" is gone- I"m somehow lesser than other men?

doc told me this week, normal function will never return. I think, and this sounds so stupid to a woman perhaps, but in some ways I think I would rather lose a leg than to lose urinary control and normal sexual function. Someone tell me I"m wrongon this if you can, but this has been a very hard journey for me. Excuse the word "hard." I meant challenging. I'm ok.

Trew
Posts: 920
Joined: Jan 2010

Joey, we are dealing with very personal stuff on the other side of PC. what do you expect from a man? In public? its challenginng enough seeking answers to terrible questions behind an assumed user name.

Every man knows, but how do you let others know- PC is a 1000x different than getting an appendix out, or a hernia repaired. women have a hard time understanding how much a man is defined by his manhood. In public, to admit "that" is gone- I"m somehow lesser than other men?

doc told me this week, normal function will never return. I think, and this sounds so stupid to a woman perhaps, but in some ways I think I would rather lose a leg than to lose urinary control and normal sexual function. Someone tell me I"m wrongon this if you can, but this has been a very hard journey for me. Excuse the word "hard." I meant challenging. I'm ok.

Trew
Posts: 920
Joined: Jan 2010

Slow posting tonight- personal stuff and multiple postings, sometimes.....

shubbysr's picture
shubbysr
Posts: 87
Joined: Jun 2009

I agree with previous posts -
"doc told me this week, normal function will never return. I think, and this sounds so stupid to a woman perhaps, but in some ways I think I would rather lose a leg than to lose urinary control and normal sexual function. "

It is not stupid. Your feelings are real! Of course, some say it is better that the alternative. Well, sure it is but, we are cancer survivors and now dealing with the urinary control and sexual function.

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