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Sorry for not replying, Terry. I have read several of the articles and found some interesting. Lately I haven't been commenting as much because things have picked up here at work (this is where I catch up with YANA). However, I'm skeptical of most of the PCa "revelations" because I'm a hard science guy. I don't jump on the latest bandwagon until it's proven itself.
Hi Terry,
The references to me are a useful reminder to look at the site.
I have added it to my Favourites and guess that others have as well.Maybe a regular link to other such useful sites would suffice and save you time.
Whilst posting; I am sorry to see that those who do not update after a while are deleted. Some of these cases are surely of interest even if the conclusion is vague ?
There are details of treatments and survival time that are still of use and education I think.For example, those who have and have not made dietry changes, alternative approaches which did good or not.Treatment problems which prompt questions to be asked etc.
There are not many places we can look at treatments, case histories and ideas from an historical viewpoint.
Just a thought.
Regards
Rob
I do not always delete stories which are not updated. I retain ones that I feel may be of some use and merely note on them that I have not been able to update.
The stories I delete are those that I judge not to have any great value in themselves: their value is in the updates that demonstrate that the man is still with us and that there is life after PCa. I also feel that men who do not respond to my requests for an update, or who do not update their stories off their own bat are probably unlikely to respond to any requests for help from other men.
In my reminders I tell men who have not updated that I may remove their story.
Hi Terry,
Sorry for slow reply. Been away for a few days.
Fair enough answer; thank you. I obviously misunderstood in that I thought most were deleted if no updates.
I just don't want to see the great value in posted cases being lost. As mentioned, such information is actually quite hard to find. Particularly in the excellent access you provide via the charts etc.
I also think it's a good sign when men get too busy to check up on all the PCa news - it shows they're getting on with their lives and getting the disease into some kind of focus:-)
Sorry Terry,
Yes, have joined up on links
cancercare.org
PPML
"The "New" Prostate Cancer InfoLink Social Network"
Not getting much new info.
Participated in a telephone conference "Caring for your bones when you have prostate cancer" this morning by cancercare.org, was very good. I was lucky enough to have been treated using the best current method for my condition, and I was complaining to my HMO because I though I had been abandoned when I needed the most help.
KEEP UP THE GOOD WORK TERRY!!!!!!!
Faith, Hope, & Love,
Joe
Aloha Terry,
As to getting better answers, yananow.net has the most experienced men, and does provide closer experiences to one's own problems. The other sites, Mike's in particular have a very limited man base. I would hope some of the referenced Doc's get into the discussion.
The cancercare.org will take a while to evaluate as they provide oncology therapists to monitor each group. My first attempt to explain what was happening to me took 750 characters, you are only allowed 550. Had to drop a few problems just to get into the group!!!!
Faith, Hope, & Love,
Joe
I agree that the InfoLink site has a way to go until it recruits enough people who will participate in the various sections of the site, but I feel that Mike's postings of news events in the Prostate Cancerr world are useful, especially because his comments are informed and even if I don't always agree with him, at least he is putting these items into some sort of context for those who migth not otherwise gain value from them.
I was giving Mike a hard time, because it was evident from his posts that although he has seen and felt what was going on, he still has not been there. It is like the doc's, you know imediately whether they have been there.
I find these updates to be very informative. Being new to the site, I have reserved comments until I become more educated in this subject. That does not mean that they are not of interest. Quite the contrary!
I hope that you will continue to post them. It seems that moderators of lists like this are always wondering if anyone is listening.
I think you are right about List Owners and Moderators wondering if anyone is listening, although it is of course possible to establish what is happening on a site by way of the data available for analysis.
So, for example I know that there are almost 1,000 visits per day on the site at present, and I can get an idea as to how long the visitors stay, how many pages they accessed (about four pages on average), which are the most popular pages etc
From this I know that the site is meeting some kind of need and from the occasional mail and donation I receive, I know that some of the visitors find the site useful.
Those are all positive aspects of the job of running a site, but all the time I am wondering - can I do this better? Is there a way in which important information is highlighted in such a way that it is easily recognised as such. How can I make it more simple to find answers to questions if I don't know what the questions are? And so and and so forth...
I try to recall what would have been of prime interest to me 13 years ago, but it is sometimes difficult for me to remember just how little I knew back then or, indeed what I wanted to know.
Terry,
Personally speaking I can't think of a higher calling then for someone like you to manage this website. This site that you have provided and maintain is appreciated beyond your imagination. I just received an email from a guy in my state who had read my testimonial and asked me for any other advice that might help as he prepares for his surgery in July. He is having the same doctor at the same hospital and he was deeply grateful for your site just as I was a year ago.
Thank you for your efforts and your advice and your concern!! Good luck with your personal battle. Sincerely, Gary
Having been diagnosed very recently, I have a voracious appetite for information and have visited hundreds of sites and medical journals seeking answers to my questions. Along the way I found YANA. It has provided, perhaps, the best information I could hope to find with all the information and links you have established.
More importantly, the mentorship aspect of your site is to me, the icing on the cake. Since joining, I have received support offline by email from four members and started a ongoing dialogue with two of them. One is post treatment and one is in my boat awaiting treatment. Both these individuals have been enormously supportive and the willingness to share has been most gratifying.
You may wonder if you are doing all you can and if the site is serving the broad interests of the membership, but from where I stand, a tip of the hat comes from Ontario Canada to you. YANA is so well put together and well maintained!
Thanks so much for your dedication and effort on everyone's behalf.
Regards,
Bill Short
Niagara-on-the-Lake, Ontario
Canada
Sorry, Terry. I do find the link useful although I don't find that site very user friendly. I first went to it when you gave Paul A and myself the Krongrad story on PSA that didn't go down after robotic surgery, which is what happened to Paul A and me.
But I have not found any site like YANA. The mentor stories and the Forum are a huge resource and in my opinion the best there is. Your quip, "I also think it's a good sign when men get too busy to check up on all the PCa news - it shows they're getting on with their lives and getting the disease into some kind of focus:-)", is true of me though. Despite continuing ED after my partially successful (partially failed?) robotic, and PSA still coming out of my remaining bit of prostate, you know I just feel it is best to get on with life. I do get the Prostate Specific Anxiety just before each test, but mostly I don't even think about it anymore. So I don't feel motivated to keep checking up on the latest news or theories. If my guy goes bad again, I'll look around and consider how - or if - to deal with it. Meanwhile I watch and wait like I could have been doing without going through an incomplete op. (Incomplete, that is, apart from all the side effects!)
Like I say, for me the most valuable thing is to read all the other guys' experiences and there is nowhere better to do that than here, mate.
