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It has been a while since we've asked, so I thought this was a good time to ask again...
Do you have suggestions to improve things around here, or are you perfectly happy with things as they are? Is it easy enough to decide where to make a post, or would you suggest other forum names and descriptions?
Any feedback is encouraged!
If I'm not mistaken, this was you post no. 2000 Scott.
A tremendous effort, that cannot be acknowledged enough.
Thank you.
Jens
Scott,
I was just thinking of this yesterday. Maybe it would be nice to have stats on how long members have been free from Cancer and maybe some kind of way to chart this. I have a feeling that many members stray from the forum after they are cured. Also, I would like to encourage them to stay tuned in to the forum, and give feedback to others in need of advice. I know that many already do this, but just a reminder of how important this is to the ones that dont. Thanks Scott.
Would it be possible to do a cleansing of the Member list as 70% of the names listed no longer post or became members to ask 3-5 questions and then they never post again. I know this would not be a popular idea but the site should consider initiating a member fee(even if it is a little as $1.99 per year) just to keep tire kickers from joining. If some one joins I would like to see them bringing some relevance to the table and maybe the money collected could go to LAF or american cancer society as a donation from our web-site!! WHAT DO YOU THINK????
Sorry I haven,t benn posting to much-- Been a little busy with the relocation efforts and I have finally gone back to work(only 20-25 hrs a week but it,s a start)!!!!!!!! :) :) :)
I just cleaned things up a little for now by deleting usernames that had no posts if they were a) registered but hadn't visited in over a year, b) still waiting for e-mail confirmation and more than 60 days old.Quote:
Originally Posted by yvonne
Larry, this may not be exactly what you had in mind, but I'm interested in feedback on whether this will be helpful. I just added optional fields to the member profile: Cancer Status, Diagnosis Year, Stage, and Treatment. Please let me know if you would add to or change any of the available choices.Quote:
Originally Posted by Larry B.
The forum software can require a minimum number of posts before displaying a user in the Members List. I increased it from 0 to 3 this morning.Quote:
Originally Posted by yvonne
How about User Titles? Should we branch out from Registered User? I believe at one time titles automatically changed with number of posts through Newbie, Junior Member, Full Member, Senior Member. Or we could use Survivor, Caregiver, etc.
Scott,
I like the additional fields idea. I think that would be helpfull. As far as charging for use of the forum, I would think that may have a negative impact for some. I would not want to deter anyone from seeking support in any way. There are some people that would not go thru with paying for it and giving personal information out. I just want some kind of way of getting the point accross of how much help survivors can give if they stay active after they get on with there normal lives. I dont mean reading post or posting everyday, just staying in touch and helping others would be of great value. Maybe a "joining forum policy with a agree - dissagree option stating that by joining you would be stating that you would actively become a member and provide feedback to the other members" Something on that line.
Those extra fields really could be useful, if enough members update their profiles, starting by clicking the "User CP" and then the "Edit Profile" links, or just click here!
Please let me know if the choices need adjusting.
This is an interesting idea. Mybe it is time to slightly separate those with one post/year and regular users.Quote:
Originally Posted by Scott
Scott:
I can't keep track of who has upcomming chemo or an RPLND. Is it possible to have those as calendar items so I know who needs good karama and when.
On the treatment user options, the staging could be a bit confusing for newbies given the way the choices are laid out. For example, if you judge staging purely by metastasis, then I was stage II (lymph nodes). But if you go by the AJCC groupings, I was stage IIIC due to high AFP levels. It's a minor quibble, but a quibble nonetheless. I also understand the need to keep it fairly simple.
Other statistics suggestions:
- high water marks for tumor markers (pick list)
- additional treatment options (for those of us who had 4xBEP)
- pathology (could get somewhat involved)
- seminoma/nonseminoma/teratoma
Scott, does the forum have the ability to track other specific dates? Users could put in their profile when they were diagnosed, when chemo started, when RPLND happened, when they got the "all-clear" and these would appear on the calendar so we could celebrate people's anniversaries.
I took care of the easy suggestion right away and added 4xBEP as a treatment choice. What do others think about tracking the AJCC groupings? Is it helpful or too detailed?
I'm not sure that we can have user profile fields automatically populate the calendar. We may be able to have members add their own annual events, though.Quote:
Originally Posted by Vinny
I think is would be really nice to have the "All Clear" anniversary dates:
1) because it is a date each individual will celebrate for the rest of their lives
2) it would be reassuring to those in treatment to see how many of us are still here 1,2,5,or 10 years post chemo/surgery!!!!!!!
I would almost rather see the "All Clear" dates rather then the Birthdays...... :)
Great idea about the extra fields on the profile!
I understand the idea behind the "joining forum policy", but I wouldn't want it to scare people who are concerned about whether or not they have TC or just need some quick advice.
Is it possible to let it be optional to add a user title, such as Survivor or Caregiver? Then people could add those if they like.. although most people lists these things in their signatures now.
As for seperating users with just a few posts from regular users, I think that's already possible by checking the number of posts made by that user.
You should be able to add events to the Calendar now.Quote:
Originally Posted by Scott
Also, I added a user profile field for Cell Types.
Seeing as though we will not have a membership fee to be a member at this site(which after reading everyones comments I also agree with not having a fee) maybe we could start a collection.. Not to help any one particular person, but to make a combined donation to cancer research from TC-cancer.com.. We presently have 1601 registered members on this web site. If each member could contribute just $10.00 we would be able to donate over $16,000 to Cancer research. I have offered to donate all contributions I receive for LAF fundraising to SCOTT as a Thank you for all the Time and effort you contribute to this website. I would love to start a collection and contribute the total to LAF in SCOTT's name if it is OK with Scott and my fellow members.
We could collect donations Via Pay-Pal for a designated amount of time and then make a lump sum donation to LAF in Scott's name(which I would be willing to oversee along other moderators and Administrators if need be ). If anyone deserves it it's SCOTT for all he does for this site and it' members... WHAT DOES EVERYONE THINK???? suggestions--comments??I could have a Pay-Pal account set up for this with-in 2 hours!!!!!! Can You Say " YELLOW JERSEY" for the JOY family this year at the RFTR ???? :) :D :) :D DON
Let me know when this gets set up. I'm definately in!
Count me in as well!
I have also committed to help with Scott's Yellow Jersey. Any donations I receive for my LAF work I will add to the PayPal account.
If my information is correct we can start donating to the 2006 LAF campaign as of Jan 16, 2006. I will have the account set up in the next week or so and we can begin. If my dates are off please correct me!!!!!!!!! I will keep everyone informed....... DON
I've started to post in response here several times and found myself at a loss for words, so I'll just say thanks again for everything!
It is we that need to thank you for everything you do and all the lives you touch each year!!!!! We are in awe of your continued mentoring on this site as well as your continued strive to raise funds and awareness for cancer research even while your were in poor physical condition at times this year!!!!! If everyone would follow your lead and conviction for this cause then the cure for TC and other cancers WILL be found !!!!! I know I speek for every member of this web-site in saying thank you for all you do for the cancer community!!!!!! DON :D
Count us in too. Scott, you're a cheap date!!!
Stacy & Perry
I'm not sure whether you'd rather handle things that way, or make donations directly through the LIVESTRONG Ride site at this link, now that it is all set up, with a standard comment for the "honor roll" such as "In Honor of the TC-Cancer.com forum."Quote:
Originally Posted by yvonne
Either way is very greatly appreciated!
Howz about a spelll check fur thooz of uss that tipe wit hour thumbbzz ?? :o
Best Wishez
No donations please (unless they are for Scott). I just wanted to post my LAF ride info. If anyone has comment please feel free to let me know. I promise to only pout for a few minutes
As many of you may know our son Jason was diagnosed with testicular cancer in 2004. For us it was an event that has, for better or worse, changed our lives forever. During the darkest times, when I had neither the knowledge nor the power to help Jason with his battle, the Lance Armstrong Foundation was one of the few organizations I could turn for advice. For their support I will be ever grateful.
The only way I know how to ”pay forward” what they did for Nancy and I is to help them help others. To that end on Sept. 10th 2006 I will be riding 100 miles with a group know as Cyclists Combating Cancer. This ride will take place in Philadelphia Pa. and is part of a national fundraising campaign in support of the Lance Armstrong Foundation.
I am asking you to please support me as I take on that challenge, no contribution is too small to help. All of the net proceeds from this event go to the support of the Lance Armstrong Foundation's mission to inspire and empower people affected by cancer. The Lance Armstrong Foundation accomplishes its mission through education, advocacy, public health and research. Donations can be made on line at http://www.livestrongride.org/06PA/wjmoses or you can simply send a check to our home (48 Myrtle Ave. Midland Park NJ 07432). Please make your check out to the Lance Armstrong Foundation.
Thanks for the info Bill. One question though,, was Jason diagnosed in 1994 or 2004? I know your signature says 2004, but your letter says 1994. Just thought I'd let you know :)
-Kevin
Thanks Kev. I must have been in a time warp, but it does seem like 12 years instead of 2.
You can count on my support as you tackle this mighty task, I only wish I was well enough to ride side by side with you (maybe one year)!!!!!!
Your physical presence may be elsewhere but you will be by my side.
Seems there are a lot of folks with insurance questions, would this be a good separate forum?
I agree with you. As this site becomes better know people are looking for information beyond treatment and emotional support. Insurance seems to be a common problem.
I second that request, and I type with 3 fingers... :eek:Quote:
Originally Posted by mikeygti
I'm wish them in regards to the spell check-- I find myself using my thumbs too---I think because they are the only fingers I can feel :D !!!!!
Coming from someone who is new to all of this but deep into it...it would help to know where to go to understand terms. As I read through some of the messages I am lost to what they are saying because I dont know the terms.
Just today the Dr advised my Chris that his blood was at .5...but didnt take the time to tell us what that means....except that it is bad....and what it should be.
So maybe a terms place...and place to find out what is normal....such as red blood cells, tumor markers, pulmonary results....
worried Mom,
the two sites I found the most informative was this one, TC-cancer.com, and the Testicular Cancer Resource Center at http://tcrc.acor.org There's a TC dictionary explaining terms and a wealth of information on what questions to ask. I think you'll find a lot of what you need there. If a doc tells you somehting you don't understand don't be shy to ask. It's a lot to take in, especially when the shock is still with you! Best wishes! Karen
More icons for use in messages.....a good karma and/or prayer, and a bottle of beer for internet celebrations of good news. The angry should go in the smiley box too 'cause you gotta express that in some posts to better vent emotions!
I second Karen's recommendation to refer to the TCRC Dictionary.Quote:
Originally Posted by worried Mom
I don't think there's a good server-side option for this, but there are browser plug-ins that should help. For those using Windows, try Google Toolbar or ieSpell. For those using Mac OS X, Safari has a built-in spell checker.Quote:
Originally Posted by mikeygti
Sorry for the delay. I just spun up a separate forum titled, "Health Insurance and Financial Issues."Quote:
Originally Posted by cotoram
Let me know if you have some good images for these. I believe I can add a few more smilies.Quote:
Originally Posted by Karen
Scott,
Is there an appropriate place where members can post alerts on reputable, peer-reviewed publications, broken down into topics where we can list journal information and the abstract? A lot of us troll the literature and would like to share the latest info or links. You do a great job on this site! Thanks! Karen
You can feel free to post them in the News and Announcements forum or the appropriate During Treatment and Beyond category forums, unless you think it would be better to have a new forum just for those types of reports.
I vote for a new category It would be nice to have a place to post links (if that is ok, some forums you can , some you have to cut and paste) to other sites with info on specific topics I know i was searching the web for info after the doctor told me I was having surgery and I know people like yourself (and the other members) have many favorites saved on their computer that would be of help to others.
Studies, Reviewed studies or published papers, maybe a section for links to pre orch and post orch info, RPLND, chemo - Rad, surveillance WOW this could get out of control :) I know a lot of people use links in the forum but it would be nice to have them in one section so you don't have to search for them.
Your site has the best people from around the world helping others beat cancer I just know they have a ton of info that they can share to help us Newbies out in yet another way by sharing their saved links.
There are some great hot links on this site I think I visited all of them the week I was home like a lot of people.
Thanks for the site Scott
Brian
Scott:
I like the idea of a forum just for information but I don't know how you can overcome the size limits of the files. I have a paper with info on what long term survivors of tc need to do to perserve their health but it's to large to post. I've tried several times. If it's a matter of money I think as a forum we can help. I know this has grown into something James never imagined but perhaps we need to rethink this forums mission statement. Just look at our new one day visitor numbers.
I am with dadmo if it is a money issue to add bandwidth I am sure there would be enough people to donate enough funds to keep it up and running and allow larger amount of space to post. I would be glad to help in any way (money or plans) I know I am new but I now consider this my TC computer home with no plans to move any time in the future. The help I have received since I joined has done nothing but help me in my fight.
Brian