I don't mean to put pressure on you guys

marosa
marosa Member Posts: 334 Member
in Kidney Cancer #1

Hi!  I know very well we need no pressure and should do as we please or feel comfortable with, but... we are here to give support and to learn from our disease.  Looking for info in the web is frustrating, scary at times and "paint by numbers" by wich I mean stastistics, numbers, studies, old stuff and just very clinical.  It all leaves you wondering and making sometimes weird scary stories in the mind!

Please excuse my english!  Anyway, to get to the point. Many of you I read often your comments and know by name (alias). But in some cases, if I want to go back and see something about you... it's blank!  It would be so helpful if we know something about you and the truth is we do but it was writen in some comment that you made way back and it stayed there!  So  we might not remember your case because even thou you might have told your story, it was "swallowed" by the new topics.  This is why the"About Me" page is so helpful!

To fill this page, at your wish, short, long, detailed or not so detailed,  helps us go back when you make a comment and we want to remember your case.  It's also very helpful because I, and I guess many others, like to see how those who had a partial or open neph, when they had it, what was your stage, grade, type... it heps us as we go along the road to see similar cases and how you are doing. 

I always worry about the way I put my thoughts to ink in english ... (or virtual ink in this case).  I hope you understand what Im trying to say and its not all gibberish!

 Good weekend to you all.   You are all very special to me.  Sending good wishes and love.

 

 

 

 

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Comments

  • icemantoo
    icemantoo Member Posts: 3,361 Member
    #2
    I agree

    I agree and have raised this issue before. I try to make my response appropriate to the poster and where they are with RCC. If it is not in their post it is harder to  respond correctly.

    Icemantoo

  • APny
    APny Member Posts: 1,995 Member
    edited May 2016 #3
    I agree, but...

    It took me forever to find where and how to enter that info and it's not like I'm unfamiliar with computers. I work with them daily and used to administrate a message board. So I think if it was a bit more user-friendly, most people would have filled out the information :)

  • APny
    APny Member Posts: 1,995 Member
    #4
    Speaking of user-friendly, I

    Speaking of user-friendly, I just tried to post the above with an emoticon and it kept rejecting it, directing me to email them. When I clicked the email it said it's not configured properly, lol. But with the graphic version of smiley it took it no problem.

  • rja3d
    rja3d Member Posts: 35
    #5
    your communication is fine Marosa!

    I updated my about me page initially, then it disappeared and i did it again the other day with new info.  thanks for the reminder!

     

    Jay

  • medic1971
    medic1971 Member Posts: 225 Member
    edited May 2016 #6
    I had trouble too

    I'm a bit of a computer nerd, and I also had trouble, initially, with the About Me page.  It kept disappearing, like Jay said.  

    I think the webmaster could have made it a little more user friendly.  

    Marosa, your post was extremely well written.  I love the term "virtual ink"...  I am going to steal it :)

  • medic1971
    medic1971 Member Posts: 225 Member
    edited May 2016 #7
    medic1971 said:

    I had trouble too

    I'm a bit of a computer nerd, and I also had trouble, initially, with the About Me page.  It kept disappearing, like Jay said.  

    I think the webmaster could have made it a little more user friendly.  

    Marosa, your post was extremely well written.  I love the term "virtual ink"...  I am going to steal it :)

    freaking hell

    It's gone, again!!!  Anyone else having this problem???

  • daisybud
    daisybud Member Posts: 541 Member
    #8
    Yup!!

    Mine disappeared too!

  • CSNSupportTeam
    CSNSupportTeam admin Posts: 229
    edited May 2016 #9
    daisybud said:

    Yup!!

    Mine disappeared too!

    Thanks for reporting

     




    Apologize about the inconvenience and thank you for making us aware of the About Me disappearing. This has been reported to our IT web support team. 

    Kim

    CSN Support Team




  • APny
    APny Member Posts: 1,995 Member
    #10
    And thank you, Kim, for being

    And thank you, Kim, for being on top of this. Could you also look into why it won't accept a post with an emoticon but does if I use its graphic version such as, :)

  • foroughsh
    foroughsh Member Posts: 779 Member
    #11
    It's great suggestion Marosa,

    It's great suggestion Marosa, I've done it myself, but it's really hard to find similar cases if members don't complete their bio, I was searching for similar cases to communicate with them and ask questions once I was just diagnosed but it was a really difficult and sometimes impossible. Having a completed bio is going to help newbies a lot.

  • jason.2835
    jason.2835 Member Posts: 337 Member
    #12
    Yes, but...

    It's a great point, but the problem is that this website is not the most user friendly and I am sure there are many on here that are already hesitant about using computers in the first place.  Like posting pictures, for instance.  The whole CSN site is in a major need of overhaul to update it.

    - Jay

  • marosa
    marosa Member Posts: 334 Member
    #13
    Foroughsh

    My way to try keeping track of some members who had a very similar case but had not filled the "about me" page,  was putting them on my "favorites" list.  But regretfully only one shows up from time to time, all the rest (about 6) have never been around again!

    It sure is not user friendly,  I am very much on the nerd side computerwise but yesterday I even managed to update my page... not without some effort and trial and error!  For those of you who want to fill it, please try again when you have the time.  It helps a lot, saves time for making comments and helps us follow similar cases.

    Medic, you are welcome to steal my "virtual ink"!

  • foroughsh
    foroughsh Member Posts: 779 Member
    #14
    Thanks Marosa, good point
     

    Thanks Marosa, good point

     

  • Jojo61
    Jojo61 Member Posts: 1,309 Member
    edited May 2016 #15
    Good post, Marosa! The "About

    Good post, Marosa! The "About Me" is very helpful. And you taught me something....I didn't realize the value of the "favorites" list! Thank you!

    And your English is perfect, by the way!

    Hugs

    Jojo

  • foxhd
    foxhd Member Posts: 3,181 Member
    edited May 2016 #16
    I have

    had similar complaints. I often message members to fill out their profile so we can keep track of them. Glad to know it's not just me.

  • Bellweather
    Bellweather Member Posts: 102
    #17
    Done, needed the pressure lol

    Thank you, you are correct, I have updated my data!

  • Airie
    Airie Member Posts: 45
    #18
    Marisa-

    Marisa-

    I have completed my "about me" page twice-only to have info disappear. Frustrating!  Hopefully now that CSN IT team is aware of problem there may be a solution soon...

  • Airie
    Airie Member Posts: 45
    edited May 2016 #19
    Aaaaahhhhhh!!! Spell check

    Aaaaahhhhhh!!! Spell check also changed Marosa to Marisa! Sorry!

  • todd121
    todd121 Member Posts: 1,448 Member
    #20
    Please fill in your profile!

    I agree, and you said it very well. It would really help us keep up with you if you filled our your profile with information like, when you first found you had RCC, what the initial tumor size/location and your diagnosis was (and your RCC type, Stage, Fuhrman rating) and any followup treatments/findings you had.

    Instructions (hope this helps):

    At the top of the page is Click here to create or update your member "About Me" page. Click on "Click here". Then click on "Edit". Then click on "About Me" and you can answer the questions there and fill in any information you want us all to know. I'm pretty sure this information is public, so I'd keep that in mind.

    Warm regards,

    Todd

  • lcsvb
    lcsvb Member Posts: 41 Member
    #21
    I added mine again

    Hopefully it sticks this time!

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