Ladies on the forum

Just on a whim the other day I hit the button to take me to the oldest page on the forum. It was interesting to see a few people still here. The most interesting part was how many ladies were on here talking to each other. It was good to see the perspective of a spouse and how this disease can effect them. I so see a few ladies no here now, but not at the same velocity of posting that was here in the earlier days.

Makes me say "HMMM" about what changes may have happened in the past 10 years or so.

I still read here most every day. I don't post very often because we don't know very much about what's going on with Randy. We only know that he hasn't had any radiographic progression, since we can't know his PSA (clinical trial). Also, I think the tone here has changed a little from when I first came here 4 1/2 years ago. Could be just me. I still like to check in. While I don't really know anyone here, I feel like I know the regulars and like to see that everyone is still doing OK.

Donna.

Union98 said...
Facebook groups perhaps? I'm a moderator for a group Stage IV Prostate cancer...

I believe you are correct that FB has likely taken much of the traffic from message boards. Personally I hadn't used FB until my mesenteritis diagnosis last fall, and I could not find any online support groups other than a small presence on FB.

Also I'm not in any FB prostate groups, but started several private groups for specific conditions for which there did not appear to be any existing groups. Women seem to outnumber men there 4 or 5 to one. But I think men may feel more comfortable with the message board format as many of us were involved in the early days of home computing thirty years or so ago, when message boards flourished.

Some folks are only here to offer help.

I am beyond any news that is beyond extreme trials, so don't post much, but I try to offer help to new folks.

This (HW) has been the best combination of frank/informed/wife-friendly board I've found. I was on here constantly at the start of our journey, but I've been more intermittent recently due to just where we are (right now we're at a point with little drama...and I'm hoping it stays that way for a long while).

It's an interesting thought that FB or other social media groups have whisked wives away from here - I have at times desperately looked for support of other wives with husbands fighting this disease and it's been a struggle for me (part of it is that we're all in different live phases and the support needed for different prognoses can vary so wildly). So if all the wives are going somewhere else, I have no idea where that would be!

I'm eternally grateful for this board and what it provided me when I came here about 36 hours after a G9 diagnosis for my husband. I hope I can offer the same support and hope to others for a long while to come.

I found this forum when my husband was first diagnosed back in April 2012. It has been beyond helpful. My husband does not want to be on the forum or even look at it .... he relies on me to tell him the things he needs to know from it. I love being able to tell him that some of the folks that were G-9's in 2012 (like him) are still around and doing well ... even some with high PSA's. I've learned so much from the people who "have been there, done that". Y'all help more than you realize. Thank you!

Thanks for all the great answers ladies! I think my wife is a little afraid to look. She has done some research and bought a couple of books about nutrition. She tells me what I can and can't eat. She will ask me sometimes what I have learned recently. She is very active in my appointments and asks lots of questions.

Yep - I joined up for hubby after his diagnosis and surgery. He did not want to do any research about the disease, as it just made him very anxious. So I took it upon myself to learn as much as I could, so at least I could ask the right questions at his appointments etc.

Everyone could not have been kinder and more supportive when I signed up - it was amazing. I was (still am) so happy to have found you all. The advice and encouragement we have received here has been second to none, and I would encourage all partners of men with PCa to sign up.

I am not on Facebook so this is it as far as our PCa "journey" and interactions go.
Thanks again for making us women-folk feel so welcome, and healing wishes to all of you and yours.

After reading that some folks might have gone to Facebook groups, I looked at a couple to see what was out there. Nope, not for me. First of all there is all kinds of conflicting BAD advice posted. Second, there is no accountability. I saw a post where a wife was asking whether a PSA of 26 was 'bad'. Her husband was scheduled for a uro visit, and hadn't yet had a biopsy. She was obviously worried and upset. Some jerk (sorry for name-calling) simply posted "dead man walking". Several told her that with a PSA like that, he definitely had aggressive cancer. Another posted "yawn" in response to a question about incontinence.

So, for me, I think I'll just lurk around here. I might not post as much as I used to, but I'll be checking in on you guys and will post on occasion.

Donna