#44771 04-12-2005 05:10 AM | 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 | I apologize if this has already been posted somewhere. A friend of mine who is a medical writer pointed me to the CaringBridge organization on the web where you can create a web page (with no more skills--maybe less--than it takes to read and post here) that allows you to post pictures, keep a "blog" journaling your progress, and allows family and friends to post messages. It is a free service available to anyone, at least any US resident I'm not sure about overseas. http://www3.caringbridge.org/newuser.htm Here's the link to set up a page. It's very easy (I know time is at a premium for anyone undergoing treatment) and a great way to keep loved ones who are at a distance informed without having to speak on the phone or write each one an email!
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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#44772 04-12-2005 05:12 AM | 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 | Just an addendum: looking at that newuser page again I see there is an option to sign up from any country in the world.
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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#44773 04-12-2005 07:14 AM | Joined: Nov 2002 Posts: 3,552 Patient Advocate (old timer, 2000 posts) | | Patient Advocate (old timer, 2000 posts)
Joined: Nov 2002 Posts: 3,552 | I used to broadcast emails to all of my concerned friends. Don't be surprised if some of them ask to be removed - it's a little too "real" for some folks. I only broadcast twice a year now. Sometimes I would compose in MSWord and incorporate photos (my wife and I wanted everything photographed) and that had a little more impact.
Gary Allsebrook
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Dx 11/22/02, SCC, 6 x 3 cm Polypoid tumor, rt tonsil, Stage III/IVA, T3N0M0 G1/2
Tx 1/28/03 - 3/19/03, Cisplatin ct x2, IMRT, bilateral, with boost, x35(69.96Gy)
________________________________________________________
"You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
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#44774 04-12-2005 08:29 AM | 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 | Hi Gary, Actually, I have been doing the thing where I broadcast email to a list I created through the two surgeries. Lately I have not been sure if there are maybe some people on the list that might not really want to know about the radiation and chemo in detail. So I think I'm going to send shorter email list broadcasts and give any gory details on the caringbridge page.
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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#44775 04-12-2005 03:55 PM | Joined: Feb 2005 Posts: 663 "Above & Beyond" Member (300+ posts) | | "Above & Beyond" Member (300+ posts)
Joined: Feb 2005 Posts: 663 | I use caringbridge everyday. I am just too tired to even pick through my address book. I have journal entries from day 1 of treatment to now.
It is weird sometimes to go back and read the old entries. But it has been a blessing for our family and friends.
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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#44776 04-12-2005 04:30 PM | Joined: Mar 2002 Posts: 4,912 Likes: 52 OCF Founder Patient Advocate (old timer, 2000 posts) | | OCF Founder Patient Advocate (old timer, 2000 posts)
Joined: Mar 2002 Posts: 4,912 Likes: 52 | Would anyone be interested if OCF had a blog section to our web site. I can tell you that the postings of Larry Sharp ( daily chronicles in the people section of the site) were read by thousands of people with regularity. I know because I can tell how often a particular page or item is hit by viewers. If there is interest in a blog on OCF for patients and caregivers to post to...Chester could make it happen. If enough of you say yes, we will add it to the site, in the people section of the site. All you have to do is ask...... The software to make it work is not that expensive.
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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#44777 04-12-2005 05:58 PM | Joined: Feb 2005 Posts: 663 "Above & Beyond" Member (300+ posts) | | "Above & Beyond" Member (300+ posts)
Joined: Feb 2005 Posts: 663 | yes yes yes
Add away!
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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#44778 04-13-2005 02:22 AM | Joined: Jul 2003 Posts: 1,163 Patient Advocate (1000+ posts) | | Patient Advocate (1000+ posts)
Joined: Jul 2003 Posts: 1,163 | Sounds good to me Brian.
Danny Boy
Daniel Bogan DX 7/16/03 Right tonsil,SCC T4NOMO. right side neck disection, IMRT Radiation x 33.
Recurrance in June 05 in right tonsil area. Now receiving palliative chemo (Erbitux) starting 3/9/06
Our good friend and loved member of the forum has passed away RIP Dannyboy 7-16-2006
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#44779 04-13-2005 05:09 AM | Joined: May 2003 Posts: 928 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: May 2003 Posts: 928 |
Caregiver to husband Pete, Dx 4/03 SCC Base of Tongue Stage IV. Chemo /Rad no surgery. Treatment finished 8/03. Doing great!
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#44780 04-13-2005 11:30 AM | 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 |
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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