#44781 04-13-2005 05:01 PM | Joined: Mar 2002 Posts: 45 Contributing Member (25+ posts) | Contributing Member (25+ posts) Joined: Mar 2002 Posts: 45 | Being one of the thousand that followed Larry's story and having corresponded with him offline, I agree that there is value in an outlet to fill this need. For those who haven't read Larry's journal entries, I highly recommend it. He did a great job of capturing the high's and low's of his struggles with cancer.
Stage I diagnosed 9/18/2000
Dave
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#44782 04-14-2005 09:26 AM | Joined: Mar 2002 Posts: 4,918 Likes: 66 OCF Founder Patient Advocate (old timer, 2000 posts) | OCF Founder Patient Advocate (old timer, 2000 posts) Joined: Mar 2002 Posts: 4,918 Likes: 66 | Just so you know, this is not a cheap thing to do. Once you create a part of a site that people can up-load themselves to on your server that contains the main web site, there are ways to hack into the site and screw everything up, copy all the email addresses etc. It becomes vulnerable to those with ill intent. So this means that like our store, it would be held in another server and another (hidden) site name, though no one actually realizes they are leaving the main server at OCF and going to a different one that is more encrypted and protected in another physical location (3000 miles away) when they enter our store. This means that we actually run two separate sites. A blog site would add a third, invisible to all of you, but non-the-less separate server and software for safety reasons. It is an expense to buy the software (or have Chester write the extensive code) that makes a blog site work. The reason I say all this, is that given what OCF would put into it financially, I want you to know a few things. 1. A blog where you keep a running journal of your musings, perspectives, and experiences, etc. takes a lot of time to create. Most bloggers post significant additions 3 to 5 times a week if not daily. Take a look at some blog sites around the web (there are thousands) and you will find a new medium that is challenging even mainstream news broadcasting, and requires no degree in reporting, journalism, or even for that matter honesty. This is definitely a way to keep friends and family up to date on your situation so you do not have to email each of them individually, and the running narrative is interesting to others having similar experiences, frustrations, fears, joys etc. But it is only of value if you intend to keep it up. You know it all sounds good in the beginning, but then when the urge isn't there to continue your dialog with the world.... or loose interest in it altogether, it comes to an end... either abruptly or tapering off into something that no one follows any more. So you have to be the kind of a person who really wants to express themselves to the world in a continuing and engaging way. Now having said all that, I want you to consider this - What a blog does isn't that much different from our message board. You can start a thread here, and add to it continuously for as long as that thread stays open. I don't close threads unless they get nasty and the topic needs to quit being added to. So posting a continuing daily blog on these boards is quite possible, you can add small pictures like most blog sites, and you can talk forever and a day... there is no limit to the size of a post that is within the realm of anyone's desires. You can title your posting -your blog- and ask others not to respond to it, or as in some blog sites, you can let others put, at the end of the running narrative, each posting, their comments. (Think about it
Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant. | | |
#44783 04-14-2005 09:48 AM | Joined: Sep 2003 Posts: 1,244 Patient Advocate (1000+ posts) | Patient Advocate (1000+ posts) Joined: Sep 2003 Posts: 1,244 | Hi Brian As a newcomer to blog, and invited to be a reader on one site only, and although they have a place, this forum is so special, deep friendships are forged, and total unconditional support is given freely I would hate to see ANYTHING spoil this. This is where I post my deepest feelings in the confidence that anything I have to say will be respected by my peers. Sorry if my view disagrees with the general concensus... Sunshine... love and hugs Helen
SCC Base of tongue, (TISN0M0) laser surgery, 10/01 and 05/03 no clear margins. Radial free flap graft to tonsil pillar, partial glossectomy, left neck dissection 08/04
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#44784 04-14-2005 10:44 AM | Joined: Nov 2004 Posts: 90 Senior Member (75+ posts) | Senior Member (75+ posts) Joined: Nov 2004 Posts: 90 | Hi Brian,
After reading your post, I don't know anything about "blogs" but it doesn't seem worth the money for OCF to put out. If it basically does the same thing as the message board, why bother? The OCF message board is GREAT the way it is, and I agree with Helen, I would hate for anything to spoil it. Just adding my 2 cents....
Thanks Brian,
Shelley
Caregiver to husband, Ron. Throat cancer, Stage II. No Chemo or Surgery. Completed 35 Radiation Treatments in November 2004.
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#44785 04-14-2005 11:11 AM | Joined: Feb 2005 Posts: 663 "Above & Beyond" Member (300+ posts) | "Above & Beyond" Member (300+ posts) Joined: Feb 2005 Posts: 663 | Ok, I rescind my earlier comment. Now that I know all that is involved it seems that the cost benefit would not balance.
Honestly after more thought.....
Caring Bridge is a great place and I use it everyday. It serves the function for which it was intended and I donate to them as well as here. I think that I would prefer OCF to be a place for information, support, friendship, assistance, and all of the other support roles that it currently fills.
Somtimes, it is best to stick what you do best! And Brian, you do this best for sure!
Thanks, Cindy
Caregiver to ex-husband Harry. Dx 12/10/04 SCC stg 3, BOT with 2 nodes left side. No surg/chemo x4 /rad.x37(rad comp. 03/29/05)Cisplatin/5FU(comp. 05/07/05)-T1N2M0-(cancer free 06/14/05)-(12/10/06) 2 yr. Survivor!!!
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#44786 04-14-2005 12:36 PM | Joined: Feb 2005 Posts: 2,019 Patient Advocate (old timer, 2000 posts) | OP Patient Advocate (old timer, 2000 posts) Joined: Feb 2005 Posts: 2,019 | Yup, I agree. I didn't realize about the expense or added difficulty of having it on another site, and I agree that a thread on the message board here is in many ways very similar. I did get a lot out of reading Larry's log but, given the expense, I don't think it's worth it either.
Also, as a relative newcomer to the site, it actually took me some time to even find Larry's journal--there were so many other threads on this board that also contained the information I come here for--what other people have experienced getting through treatment, and after treatment, for this disease.
SCC(T2N0M0) part.glossectomy & neck dissect 2/9/05 & 2/25/05.33 IMRT(66 Gy),2 Cisplatin ended 06/03/05.Stage I breast cancer treated 2/05-11/05.Surgery to remove esophageal stricture 07/06, still having dilatations to keep esophagus open.Dysphagia. "When you're going through hell, keep going"
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#44787 04-14-2005 12:58 PM | Joined: Mar 2002 Posts: 4,918 Likes: 66 OCF Founder Patient Advocate (old timer, 2000 posts) | OCF Founder Patient Advocate (old timer, 2000 posts) Joined: Mar 2002 Posts: 4,918 Likes: 66 | Take a look at the forums. We have a new forum at the bottom named blogs. You can start your running journal there. You can keep posting to it and your blogs will be in chronological order. Give it a title, and afterwords you can name the subsequest additions or just date them. Someone try it out and let's see how it feels. It's a place to talk about what you are feeling, going through, your smallest musings....without anyone posting back to you about them. Just express yourself and let's see how it goes..
Brian, stage 4 oral cancer survivor. OCF Founder and Director. The first responsibility of a leader is to define reality. The last is to say thank you. In between, the leader is a servant. | | |
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