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Medical Forum / Diseases and Disorders / Prostate Cancer / May 2004Support groups for women who love men with pca
Know of any good ones? I could use one but all links I've tried from the urologist are apparently defunked. Any info would be appreciated. This one is great, but more for men than women. Sandy Really? I thought it was co-ed. The ladies here have been great! Hope we all can help! > Know of any good ones? I could use one but all links I've tried from the > urologist are apparently defunked. Any info would be appreciated. This one > is great, but more for men than women. > > Sandy > Know of any good ones? I could use one but all links I've tried from the > urologist are apparently defunked. Any info would be appreciated. This one > is great, but more for men than women. > > Sandy Geez it's hard enough to find a mens group! Read and post here.... the best bunch you'll find anywhere Sandy.  SignatureJK Sinrod Sinrod Stained Glass Studios www.sinrodstudios.com Coney Island Memories www.sinrodstudios.com/coneymemories I'm just trying to say that with Jeff's cancer, my life has also taken a big turn. I support him always, and that will never change...hasn't for 23 yrs. and won't now. I just feel the need to talk with women who are experiencing the same fears, hurts and sadness as I am, as well as the hopefulness I feel too. I'm just as much in this as he is......I am his biggest cheerleader. Sometimes though, i get really afraid and really tired.....and I need to have a real conversation with women, and except for Lillian once, I haven't been able to find that here. I have tried, but my concern always takes a turn somehow and the subject becomes something completely different. Maybe I haven't been loud enough......i just know I'm in this for the long haul. I feel like i have been Jeff's support for months, and sometimes to gain strength to further help him, I need to be able to be real to someone and really talk about how I feel too...that's all. Sandy > > Know of any good ones? I could use one but all links I've tried from the > > urologist are apparently defunked. Any info would be appreciated. This one [quoted text clipped - 4 lines] > Geez it's hard enough to find a mens group! Read and post here.... the > best bunch you'll find anywhere Sandy. hi sandy - this information is not the best, so take it for what's worth. i was going through the cancer support group booths that were out when bob dole gave his speech here last august. i talked with some of them, that is why i said the take it for what's worth, because i'm not sure of the names. i think this was man to man support group. but i was told the women were part of the group, but there was part of the session or a separate session - i don't remember - that it's men only. i never attended them. but you should be able to call your local american cancer society and talk with them and maybe they can steer to you a support group. hope this helps. ~ curtis knowledge is power - growing old is mandatory - growing wise is optional "Many more men die with prostate cancer that of it. Growing old is invariably fatal. Prostate cancer is only sometimes so." Privately email me your phone number and I'll call you. I know just having a real voice and a shoulder is so important. Bev > I'm just trying to say that with Jeff's cancer, my life has also taken a big > turn. I support him always, and that will never change...hasn't for 23 yrs. [quoted text clipped - 21 lines] > > Geez it's hard enough to find a mens group! Read and post here.... the > > best bunch you'll find anywhere Sandy. > Know of any good ones? I could use one but all links I've tried from the > urologist are apparently defunked. Any info would be appreciated. This one > is great, but more for men than women. Sandy, I did some searching around and found a group on Yahoo's discussion groups called "Women-Against-Prostate-Cancer". You can find it on the web at: http://health.groups.yahoo.com/group/Women-Against-Prostate-Cancer/ There's a button on that web page that says "Join this group". I think if you click it, you get access to the messages and can post messages of your own. The screen says there are currently 91 members. It's likely that some are inactive, but it might be a good place to try. I found another recently founded group on Yahoo with 37 members at: http://health.groups.yahoo.com/group/Intimacy_after_prostate_cancer/ All told, Yahoo seems to have 54 prostate cancer related support groups - though some are non-English and many are specialized and tiny. Hope this helps. And I hope that if you and any other women find a congenial gathering there, you won't forget to check in with us too. I think getting the women's point of view is very helpful to us men. Alan At every meeting (bi monthly) of my local USTOO group at least 30 to 40% of the wives/girlfriends are present. Most wives have been very supportive of my wife offerring phone number, calling her after my surgery etc. I'm sure there's something close to where yu are. worth a try. > Know of any good ones? I could use one but all links I've tried from the > urologist are apparently defunked. Any info would be appreciated. This one > is great, but more for men than women. > > Sandy Sandy: Call me whenever you need to talk. I think I still have your number as well. Email it to me again just in case. I did look at the yahoo womens group, but it seems pretty inactive. I find this the best group. I think I get a lot out of reading the guys comments. > Sandy: > > Call me whenever you need to talk. I think I still have your number > as well. Email it to me again just in case. I did look at the yahoo > womens group, but it seems pretty inactive. I find this the best > group. I think I get a lot out of reading the guys comments. I've never talked to anyone here in person but I am a 38 yo once-widowed (1992) already Mom who has a 40 yo very beloved husband with metastatic Prostate cancer who is just living. so far no Impotency ( which would totally freak him out and make him crazy) he still maintains his 6 figure income and is SO well regarded in his current profession ( 10 yrs in health care and back to flooring installation) He tried Paxil for his juststarted depression but it made him asexual so he quit taking it. now I need to convince his to try something else like Zoloft. ' I just realized that the Onocologist has never asked us if the life-savimg hormone suppresion therapy is making him impotent. Then he prescribes an antidepressant that adds to the problem. sh.t, he's supposed to be the best in the area...... SignatureLori Devoted wife of Curtis, Stage 4 Prostate cancer at age 40 PSA 865 Dec 30,2003 44 Feb 23,2004 17.3 Mar 15,2004 18.6 Apr 16, 2004 WTF?? n Q3months Casodex 50 mg daily http://community.webshots.com/user/lorismiller-date Hi, Lori..... I was concerned about the Paxil.... and I'm sorry to hear that it turned out this way for Curt. But there are many other AD's out there that might help. One of the anti-depressants that is often used and has the least sexual side effects is Wellbutrin. There is a new *extended release* version out at the moment. Actually, it is sometimes given to people taking SSRI anti-depressants (like Prozac or others) to *enhance* sexual function/desire. So it might be worth asking for a try of that. If the Wellbutrin didn't work, there is another group of anti-depressants called *tricyclics*.... names like Imipramine, Desipramine.... and others... that are a completely different family and also often have no sexual side effects. As for the *women's group*, all of the women here who want to could just start a mailing list (create a group mail with all the wives' emails included) and have your own little separate group. I'm sure Heather could tell you how to configure it ... would be pretty easy. I do hope you ladies will continue to read and post here, as well, as you often offer such great insight for us guys... but I can understand that there might be times you'd want to *talk amongst yourselves*. It's just an idea. Hope this helps a bit. Have a good weekend! MikeH > I've never talked to anyone here in person but I am a 38 yo once-widowed > (1992) already Mom who has a 40 yo very beloved husband with metastatic [quoted text clipped - 9 lines] > antidepressant that adds to the problem. sh.t, he's supposed to be the best > in the area...... Maybe what we need to do is exchange some phone numbers, get a list of the women here. Anyone willing can email a phone number and work out some kind of calling thing. Bev, you are good at coming up with ideas what are your thoughts? >Maybe what we need to do is exchange some phone numbers, get a list of >the women here. Anyone willing can email a phone number and work out >some kind of calling thing. Bev, you are good at coming up with ideas >what are your thoughts? If anyone wants to chat with me on MSN they are more than welcome. Just drop me an email and I'll give you my MSN id. Lee (wife of a 49 yr old PCA'er) I am not a phone person (10 hr days in a call center cured me real quick!), but I would be very interested in a email list for us gals. I currently subscribe to a few email lists through Yahoo for my neighborhood, dumb criminals, my Morbid Fact du Jour (don't ask!), and such. I assume they are pretty easy to set up. If one evolves, let me know! If everyone wants to send me their email addy and phone number I can set up a list. Bev > Maybe what we need to do is exchange some phone numbers, get a list of > the women here. Anyone willing can email a phone number and work out > some kind of calling thing. Bev, you are good at coming up with ideas > what are your thoughts? Bev or Heather, why not set up a newsgroup, alt.support.cancer.prostate.wives, or something similar. It shouldn't be difficult to do, and you can share with others beyond the comparatively few spouses who are currently here? DanR Well, here's my problem with setting up another newsgroup. I barely have time to be here - in fact I have to make time. So if I set up another newsgroup then I'd need to be there and here because here is where I am going to keep up with the latest news. But if someone else wants to take on the responsibility of setting up another news group I'd try to support it. And if there was a A.S.C.P.Wives would you guys run every wife out of here and tell them to go there? I sure hope not. Because alt.support.cancer.prostate is really a terrific place. I'm sure there are quite a few women who lurk here but dare not post out of some sense of modesty. But if we had an email circle type of thing I'm sure there would be lots of women who just might join. There's a half dozen of us (females) who have already chatted on the phone or email privately. So really a list would only be an extension of that. For that matter I know a bunch of the guys here who chat regularly on the phone with each other. Anyway I guess what I'm saying is we would wind up with a mirror site for the women and in the long run possibly lose valuable input from the guys. Bev > Bev or Heather, why not set up a newsgroup, > alt.support.cancer.prostate.wives, or something similar. It shouldn't > be difficult to do, and you can share with others beyond the > comparatively few spouses who are currently here? > DanR Bev.......I have to agree with all you say. I am busy with MS help groups, the antivirus ng's, run a Genealogy List and monitor 4 others.....not to mention Ron likes a meal cooked now and then, grin. Plus am running fast to get ready for our trip of a lifetime..... But I would hazard a guess if all of the women who post here met in person, we would be strikingly similar in personality (aka *outgoing*). It was a bit hard for me to post at first, and I am no shrinking violet!! But the input from the males was wonderful......not to mention Bev talking to me. I wasn't quite sure where the durned gland was. (G) I had no clue on prostate cancer till Ron was diagnosed, but now that we are a year later on this *trip*, I don't mind helping other wives who have just been hit between the eyes with it......it is devastating for us too....but in a different way. Plus I think there is enough of an age difference for us to cover all questions pertinent to each woman's questions at their stage in life. I guess I am probably the oldest, so could cover the 'silver surfers', grin. Bev.......well, you can cover a lot of them with your wider knowledge. (pumps, etc......lol) So if you don't mind our adding info re our views and experiences with hot flashes, stress incontinence and so on......then I think I speak for all of us.....we like being here. Our problems are not all that different from the men when it comes to hormone shots and the like. Just my 2 cents worth......Heather > Well, here's my problem with setting up another newsgroup. I barely have > time to be here - in fact I have to make time. So if I set up another [quoted text clipped - 23 lines] > > comparatively few spouses who are currently here? > > DanR I am not a wife whose husband has an often fatal disease. So, it is difficult for me to put myself in your (plural) position. But, here is how I see it. Without exception, every wife came here to find out about prostate cancer for their husband. With rare exception, those who stayed, did so in lieu of their husband. I've never heard from George, Jerry, John, Don, etc. Their wives came here for them. They started to learn about their husbands' disease and those that stayed did so to help other wives' husbands through it. Only occasionally have any of you poured your hearts out, gone on a wife-of-a-PCa-patient rant, or otherwise looked for support for yourselves. When you did, I believe you were fully supported, but you clearly are hear first and foremost for you husband. As such, you are, in my view, and I believe the shared view of all us men here, just a wonderful set of women. That said, I don't believe an alt.support.cancer.prostate.wives would last long with you ladies among them. I think there are many ladies who would be happy to join and that have no interested in this NG; my wife comes to mind. I think you would become frustrated by them and they would be intimidated by you. The phrase, "Jesus! Just blow him!" comes to mind. On the other hand, if we drummed you all out, we would lose our top expert on Brachy and that last remaining advocated of the Canadian Health Care System. While I am jealous of their husbands, I would also miss hearing women championing the cause of post-RPP sexual satisfaction regardless of the activities required. And, quite frankly, there are men here who want and need to know what their wives are going through. So, in short, I guess my answers is, "No, I would not, and I think we would not, run out the wives under any circumstance." SignatureProstate Cancer Survivor (so far), not a doctor PSA 16 10/17/2000 @ 46 Biopsy 11/01/2000 G7 (3+4), T2c RRP 12/15/2000 PSA .1 .1 .1 .3 .4 .8 EBRT 05-07/2002 @ 47 PSA .3 .2 .2 .2 .3 Erection 05/12/2003 @ 48 HTbegins 07/21/2003 @ 48 PSA .1, .1 Lupron 7/03, 8/03, 12/03, 4/04 > Well, here's my problem with setting up another newsgroup. I barely have > time to be here - in fact I have to make time. So if I set up another [quoted text clipped - 23 lines] > > comparatively few spouses who are currently here? > > DanR > So, in short, I guess my answers is, "No, I would not, and I think we would > not, run out the wives under any circumstance." Amen to all you said in your post, Steve! I, too, value the input of these wonderful women we have in our midst on this newsgroup. If there is some need for *private time* amongst the women and they need a place to chat amongst themselves, then I'm all for that if someone wants to start it up. But I hope that it would not mean we would lose these great ladies here in this newsgroup. Often, the insight and perspective from a female point of view is exactly what we need. I often find myself wishing my own wife were more of an advocate like all these great gals here! I admire them all.... and I hope their husbands realize just how LUCKY they are to have them!! MikeH > > So, in short, I guess my answers is, "No, I would not, and I think we > would [quoted text clipped - 12 lines] > > MikeH My feelings exactly. However, if the ladies would like to chat amongst themselves I think a new Newsgroup would be a bad idea. ASCP has been very lucky so far with respect to interference from outsider trolls who only want to spam or disrupt things. A new N/G, besides being difficult to set up, would be open to outside abuse. I might suggest that the gals set up a closed chat area on Yahoo or some other service that offers it. Just my 2c. Age - 69 8/12/02 - PSA 3.7 10/13/03 - PSA 4.69 11/11/03 - PSA 4.8 11/18/03 - Biopsy - 10 cores one core-25% of core-Gleason 4+4=8 all other cores benign tissue 12/10/03 - Consult - Oncologist 12/16/03 - Consult - Radiation Oncologist Treatment Plan - Northeast Ga Cancer Center HT - started 12/17/03 - Eulixen & Lupron (2nd 4 mo Lupron-4/26) 2/10/04 - Started - Flowmax and Megastrol Radiation - IMRT to begin 3/30/04 - 42 treatments Awwww.......you old softie!! Thank you for the lovely compliments and your reasoning for our being here. In my case, it is true. And I do get a kick out of the lot of you. I have learned more stuff that I never knew about men (no brothers, no dad).....and sometimes my jaw drops. (G) Big Hugs.....Heather, The Canadian Health Care Advocate, grin. > I am not a wife whose husband has an often fatal disease. So, it is > difficult for me to put myself in your (plural) position. But, here is how [quoted text clipped - 58 lines] > > > comparatively few spouses who are currently here? > > > DanR > Bev or Heather, why not set up a newsgroup, > alt.support.cancer.prostate.wives, or something similar. It shouldn't > be difficult to do, and you can share with others beyond the > comparatively few spouses who are currently here? > DanR I think that either a mailing list for wives or a separate newsgroup for wives would be wonderful. I would participate, and I would be very thankful for the opportunity. > > Bev or Heather, why not set up a newsgroup, > > alt.support.cancer.prostate.wives, or something similar. It shouldn't [quoted text clipped - 5 lines] > for wives would be wonderful. I would participate, and I would be > very thankful for the opportunity. The big problem is that setting up a new news group is a long, involved process.....and a List would be even more impossible. Perhaps a group email or some such......not sure how well that would work. We have a private 15 person *group email* re spyware, etc.....this works. But only because there are a few MS MVP's in it that have websites where all the newest malware is posted and the fixes for it. And we can send people there. That would not work with Pca wives. Bev.......any thoughts? Mine are that we should just stay on this group and perhaps post our email addresses for those women who do not want to post on the group. My address is munged, of course.........but I could add a Hotmail or Yahoo address in the body of a post. I get enough spam at Rogers now...(wry grin). Cheers.....Heather To me the simplest thing would be for those willing to share email addy and phone numbers can do so via me. I will keep the list and that way if someone wants to contact another on the list via phone or private email they may. Bev > > DanR <dr2354@hotmail.com> wrote in message > news:<sYudndLhAehRigndRVn-uw@comcast.com>... [quoted text clipped - 24 lines] > > Cheers.....Heather Excellent idea, Bev!! This way we can cover all age groups, different treatments and locations...not that I wouldn't help someone half my age, in Timbuktoo. But you were a lot of help to me privately and I would certainly like to return that favour to any of the women lurking here. And several of the men were very caring and generous with their advice and just listening to one very scared wife. But we do have our own set of problems and questions......so I second that idea and think the lady lurkers should write you for the addresses and numbers. I will certainly forward mine to you, in case you lost my phone number. Cheers....Heather (Toronto area......HDR brachytherapy husband) > To me the simplest thing would be for those willing to share email addy and > phone numbers can do so via me. I will keep the list and that way if someone [quoted text clipped - 34 lines] > > > > Cheers.....Heather I'll try to put together a short database of who's who. Bev > Excellent idea, Bev!! This way we can cover all age groups, different > treatments and locations...not that I wouldn't help someone half my age, in [quoted text clipped - 55 lines] > > > > > > Cheers.....Heather Don Cooley now has a Ladies Only list serve. I did not mean to imply that I didn't want the ladies in this group - their input is most valuable and their perspective is unique and insightful. I was just trying to suggest a way to satisfy the perceived need for a group where they could exchange thoughts, feelings, and ideas without us guys hanging around. DanR I started this whole thing, and I can't believe it's still going on. Anyway....ya'll are great, but I just wanted to be able to talk to women sometimes...never intended to start a fury. Don Cooley's group is great...joined on the advice of Bill and it has helped me alot already. Sandy > Don Cooley now has a Ladies Only list serve. > [quoted text clipped - 6 lines] > guys hanging around. > DanR This is not a 'fury'. We haven't had a really good fury since Martin died and Pops found religion. You started a very interesting and beneficial discussion that sounds like is going to end up with a positive resolution. That's the way this NG is -- everybody working towards postive solutions. SignatureProstate Cancer Survivor (so far), not a doctor PSA 16 10/17/2000 @ 46 Biopsy 11/01/2000 G7 (3+4), T2c RRP 12/15/2000 PSA .1 .1 .1 .27 .37 .75 EBRT 05-07/2002 @ 47 PSA .34 .22 .15 .21 .32 Erection 05/12/2003 @ 48 HTbegins 07/21/2003 @ 48 PSA .07 .05 Lupron 7/03, 8/03, 12/03, 4/04 > I started this whole thing, and I can't believe it's still going on. > Anyway....ya'll are great, but I just wanted to be able to talk to women [quoted text clipped - 11 lines] > > guys hanging around. > > DanR You know Steve, you're right! > This is not a 'fury'. We haven't had a really good fury since Martin died > and Pops found religion. [quoted text clipped - 18 lines] > > > guys hanging around. > > > DanR I'm glad you found some extra support. When I started out here I wound up pouring my heart out to a few of the guys who somehow managed to wipe my tears and ease my fears. It was a very difficult time. Bev > I started this whole thing, and I can't believe it's still going on. > Anyway....ya'll are great, but I just wanted to be able to talk to women [quoted text clipped - 11 lines] > > guys hanging around. > > DanR Here's an established group we could join without the work of setting up a new group. Just click on "The Circle" on the left menu for a description: . http://prostatepointers.org/mlist/mlist.html |
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