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Posted 5/2/2008 11:22 PM (GMT 0)
Are there many people involved in local or national support groups? If so please share the dynamics.
Posted 5/3/2008 3:51 AM (GMT 0)
I just support on here.

kw
Posted 5/3/2008 4:05 AM (GMT 0)
I have attended USTOO meetings and donated to the prostate cancer foundation. But the best outside support I have received came from right here. I like to think my best contributions were here as well. It certainly is great to have this place 24 hours a day.

Tony
Posted 5/3/2008 4:14 AM (GMT 0)
Our best support is here. Bob also participates in a "Ride for Dad for Prostate Cancer" motorcycle ride each year.
;o) Linda & Bob
Posted 5/3/2008 5:15 AM (GMT 0)

Hi Linda & Bob-

I am curious about your motorcycle ride.  Is it a local or national event?  What a great idea!!

Posted 5/3/2008 12:55 PM (GMT 0)

Hi Doting .

We are in Canada.  The ride originated in the east I believe.  Last year it moved west . . Calgary had theirs and it was a great success with around 150 riders. . . Edmonton did their's next (on father's day) last year (our first one) and had over 400 riders.  More are expected this year.  Of course people sign pledges for donations first.  I cannot remember the total donation amount, but it was a huge success.

If you google "edmonton ride for dad" you will find information and pictures.  I'm sure this is done in other areas.

Side note . . . do you ride??  Bob got his first motor bike at age 60 (two years ago) when we all thought he was going through his second childhood. He loves it . . I'm terrified but suppportive but do not ride myself. . . . look funny on back of a bike with both feet planted firmly on the ground.

Take care!

;o) Linda

Posted 5/4/2008 7:48 PM (GMT 0)
thanks to everyone for finding a means of reaching out that fits their needs. It is so important that patients and caregivers find an outlet to express those real human emotions. healing well provides that, as I am sure many local events do. When depression creeps in, please reach out, help is close.

peace and love
Dale
Posted 5/4/2008 8:10 PM (GMT 0)
Our Us Too meetings usually have a speaker and then the group breaks up into smaller groups broken up by the therapy/path one is interested in. There are groups for surgery, radiation, WW, etc. In each group there are experienced guys to answer the questions of the newbies and their wives.

The speakers have ranged from local docs, dietitians, mood therapists, social workers, etc to Dr. Peter Scardino. I think it's a good mix of professionals and peer to peer discussions (as we have here).

-Les
Posted 5/4/2008 9:40 PM (GMT 0)
I think I will check into starting an Us Too chapter here in my hometown.
Posted 5/5/2008 1:26 AM (GMT 0)
Like TC-Las Vegas, I have been involved with the local Us Too group.  The group meets once a month and each meeting features a speaker on a subject related to PCa.  There are also opportunities to mingle and meet others with similar situations and concerns.  Unfortunately, they meet on the third Thursday of each month, when, without fail, my wife is either at school (persuing her master's) or up in Utah on real estate business. So, I'm home in charge of the feeding, homework etc. with my 13-year-old.  So I miss most of the meetings, but help them with publicizing the group's efforts.

I think the strongest aspect of our local US Too group is its founder and leader, Lew, who started it many years ago.  When I was first diagnosed, the ACS gave me his number and from there forward he was always there to pick up the phone, open the door to his home, and help in any way possible.  He's over 18 years out of surgery and doing fine.  He's extremely knowledgeable about the latest local and regional resources for guys with PCa, in terms of diagnoses and/or treatments.  And he continues to be an advocate for us guys -- working with the politicos, watching for potential legislation in our favor etc.  He was a God-send for me.

BUT -- like TC-Vegas (Tony) said, this forum has been invaluable because of the range of PCa guys and spouses who come here with their questions, suggestions and encouragements.  I never thought I'd find such a place on the Internet.

Best to ya,

Tom  

Posted 5/5/2008 1:29 AM (GMT 0)
how did you find out about your local Us Too group? I sent them an email a couple of weeks ago and have not heard from them yet. They do sound like a good group.
I am working on starting an independent support group if all else fails.
Posted 5/5/2008 3:06 AM (GMT 0)
When I was diagnosed, I asked my former (repeat former) urologist if there were any support groups and got kind of a non-response.  He said there were some resources out there, but he wouldn't endorse any of them because of some issues he'd had with them.

Next, I called my local chapter of the American Cancer Society and they gave me a name and contact. 

Start there. 

If you have a problem hooking up with someone from US Too, let me know and I'll talk to our local guy.  I'm sure he can help.

Posted 5/5/2008 1:22 PM (GMT 0)
I attend the UsToo chapter in Danbury, CT. It is called Ann's Place and is a great resource for ALL cancer patients.  about 20 men meet the first Wednesday of the month. One neat aspect is that their partners/wives meet at the same time down the hall. As often happens, I find that what I get is not support for me, per se, but the fact that there are guys there in MUCH worse situations and I can help them - that is what makes all the difference for me. In helping them, I'm the one who is blessed.  It reminds me of how fortunate I am and how grateful i should be for my health. I am doing just fine and don't need it for me anymore, but this perspective keeps me going.

This place still ranks tops for info and knowledge.

Paul

Posted 5/5/2008 10:27 PM (GMT 0)
That is my main goal for a support group, to help others, and in turn that helps me. I have been blessed that i have not gone thru the normal phases as of yet. No depression or denial. I know many that are suffering so if I can help them I am happy.

Thanks for all the info
Dale
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