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I don't mean to put pressure on you guys

marosa's picture
marosa
Posts: 333
Joined: Feb 2015

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.

 

 

 

 

icemantoo's picture
icemantoo
Posts: 3280
Joined: Jan 2010

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's picture
APny
Posts: 1987
Joined: Mar 2014

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's picture
APny
Posts: 1987
Joined: Mar 2014

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's picture
rja3d
Posts: 35
Joined: Mar 2016

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's picture
medic1971
Posts: 199
Joined: Sep 2015

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's picture
medic1971
Posts: 199
Joined: Sep 2015

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

daisybud's picture
daisybud
Posts: 490
Joined: Jan 2016

Mine disappeared too!

CSN Support Team
Posts: 48
Joined: Sep 2014

 

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's picture
APny
Posts: 1987
Joined: Mar 2014

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's picture
foroughsh
Posts: 779
Joined: Oct 2014

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
Posts: 337
Joined: Nov 2014

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's picture
marosa
Posts: 333
Joined: Feb 2015

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's picture
foroughsh
Posts: 779
Joined: Oct 2014

Thanks Marosa, good point

 

Jojo61's picture
Jojo61
Posts: 1310
Joined: Oct 2013

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's picture
foxhd
Posts: 3183
Joined: Oct 2011

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
Posts: 100
Joined: Jun 2013

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

Airie
Posts: 45
Joined: Mar 2016

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
Posts: 45
Joined: Mar 2016

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

todd121's picture
todd121
Posts: 1427
Joined: Dec 2012

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's picture
lcsvb
Posts: 41
Joined: Jan 2016

Hopefully it sticks this time!

CSN_Hillary's picture
CSN_Hillary
Posts: 16
Joined: Sep 2013

Hello,

I'm working with our IT team to fix this issue, but we need a little bit more information. For those of you whose About Me infromation disappeared, do you remember when you entered it approximately? It would be most helpful to know if the information was entered before or after 4/29/16.

Thanks so much!

medic1971's picture
medic1971
Posts: 199
Joined: Sep 2015

Mine was before 4/29/2016.  Thank you!

marosa's picture
marosa
Posts: 333
Joined: Feb 2015

keep this post from dissapearing.  I really believe that if we fill our about me page, more people would stick around and that means much more info at hand, and much easier to help and be helped.

Footstomper's picture
Footstomper
Posts: 1238
Joined: Dec 2014

Maybe if we just wrote about our cancers there, they too would disappear?

Airie
Posts: 45
Joined: Mar 2016

CSN Hillary-

My info was entered twice prior to 4/29. Both times it disappeared. Thx for the fix!

hardo718's picture
hardo718
Posts: 853
Joined: Jan 2016

I originally entered my profile on January 6th and I just checked it and it's gone!  Arghhh.  Lots of issues lately and I've been in contact with CSN about all the issues......posting new topics, use of emoticons, etc.  What the heck!  I'll update my profile soon. 

Great suggestion Marosa, didn't realize my profile had dropped off into oblivion.

Donna~

APny's picture
APny
Posts: 1987
Joined: Mar 2014

"Maybe if we just wrote about our cancers there, they too would disappear?"

What a marvelous idea!

marosa's picture
marosa
Posts: 333
Joined: Feb 2015

and I know people in some countries firmly believe if you take their picture you steal their soul with it. It sure would be wonderful if by writtting about our cancers they would be "stolen' by our written words and gone forever!  Yes, it would be wonderful, magical... poetic even.

We do what we can and sometimes wonderful things do happen!

foxhd's picture
foxhd
Posts: 3183
Joined: Oct 2011

please update everyone

magpie49
Posts: 5
Joined: Oct 2016

Great Comment Marosa, I just joined but will try to find and update the "Me" section.

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