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#174082 11-17-2013 02:57 AM
Joined: Oct 2013
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n74tg Offline OP
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I don't know about all of you, but OC has further disrupted my already unusual sleep pattern. Before OC, I used to wake up once or twice a night, go potty and go back to sleep. But now, I don't go back to sleep. I'm up for a couple of hours. No, I'm not laying there obsessing about the C, I just can't go back to sleep. No position is comfortable; fluffing the pillow doesn't help, the pajamas or covers are a little too hot, or a little too cold. So I get up.

I probably shouldn't do it, but I often get on the forum. I need something to do as I drink my cup of hot chocolate.

Surprisingly, many of our new members make their first forum post in the wee hours of the morning. I guess they have just been diagnosed, and scared/worried to death sleep for them is just not happening. So, they make their way to the forum and ask for help. Several times I've logged in to find a new member, 0 responses, 0 views just made their first plead for help. A quick look over to the Who's Online section and maybe they are still online. So, I need to send them something fast. Sometimes I reach them before they sign off. If they read my response before signing off, that's another victory for the OCF... helped another one so to speak.

Tonight I sign in and notice no other members are online. I make one reply (a PM actually) and now 5 members are online. Only 1 of them looks to be a new member. Come on fella, introduce yourself, ask for help so we can help you.

Have you ever looked at the list of forum members and how many posts each has made. What is amazing is that we have several hundred people who joined the forum, but never made even that first post. Several hundred lost souls is how I think of them. I hope they can get their courage up enough to ask for help.

We can all use more family members.

The hot chocolate is gone, the new member didn't post his first message, I'm sleepy ... good night.

Last edited by n74tg; 11-17-2013 02:58 AM.

Tony, 69, non-smoker, aerobatics pilot, bridge player/teacher, avid dancer (ballroom, latin, swing, country)

09/13 SCC, HPV 16, tonsillectomy, T2N0.
11/13 start rads, no chemo
12/13 taste gone, dry mouth,
02/14 hair slowly returning
05/14 taste the same, dry sinuses, irrigation helps.
01/15 food taste about 60% returned, dry sinuses are worse in winter.
12/20 no more sinus problems, taste pretty good

Joined: May 2013
Posts: 185
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Such a journey we are on Tony. Some of my most memorable moments were in the wee hours of the day. Reads like you are using the time well. Yes we want to reach new members and we do, just keep focused on your progress and use the time for you as well.


Age 55 HPV 16+ SCC, BOT 050613 Stage IV
great team at OSU
Tx 6 weeks of rad started June 3
8 weeks of chemo started May 28
RTOG Phase III trial Cetuximab group.
Treatment completed 7/16/2013
PET Scan completed 10/08/13
Results discussed 10/11/13
NED - Free but am I
Next part of the journey?
1year PET 10/24/14 NED
Good reports now 10 years out.
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[quote]What is amazing is that we have several hundred people who joined the forum, but never made even that first post. Several hundred lost souls is how I think of them. I hope they can get their courage up enough to ask for help. [/quote]Tony, Let's be fair now. People are different - some like to TALK, some like to listen, some absorb information better by reading. There is tons of info here one can glean from the posts and the other sections of the site.

I suspect 90% of the questions one would have are answered somewhere deep in the bowels of the messages here. I also suspect 90% of the people don't have the time and patience to search and dig through them all to find the answers.

Some don't research at all and lazily just post a common question that would easily be found in the FAQ or one of the site's info pages.

Everyone is different. That said, I encourage all to post rather than come and here and leave without having their question answered or concern addressed. Don


Don
Male, 57 - Great health except C
Dec '12
DX: BOT SCC T2N2bMx, Stage 4a, HPV+, multiple nodes
1 tooth out
Jan '13
2nd tooth out
Tumor Board -induction TPF (3 cycles), seq CRT
4-6/2013
CRT 70gr 2x35, weekly carbo150
ended 5/29,6/4
All the details, join at http://beatdown.cognacom.com
Joined: Jun 2007
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Administrator, Director of Patient Support Services
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You got that right, Don. Everyone is different! The forum doesnt only have members who are OC patients and caregivers. Some new members will post and become life long friends, while others are here to only read and learn preferring to keep to themselves. Most questions asked can easily be found just by using the search function. Sometimes students or even teachers join. For the legitimate OC patients and caregivers, I wish they would post but I respect their privacy if they choose not to.

Behind the scenes, we find not all the new members are here for legitimate reasons. When you click on someones name that shows up as one of OCFs newest members and they are no longer in our database then they are not here to get or give help. They are attempting to sell something, promote false cures, or otherwise cause harm to our members. Most times they are removed prior to posting but once in a while one slips by. Thats when we depend on our members hitting the notify button to let us know there is a problem. Its rare one of these posts last very long on the forum.

Thanks Tony for welcoming the new members. Over the years Ive welcomed hundreds. Some still stick around, other move on, and sadly some dont make it thru their battle at all.


PS... If you like hot chocolate, Tony you gotta give Panera bread's a try. Its great smile


Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
Joined: Nov 2006
Posts: 2,671
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Count me in as a member of the "wee hours hot chocolate club" subsidiary of the Early Morning Coffee Club. The non-legitimate posters always seem to use the wee hours of the morning to sell their stuff. Maybe they don't realize there is always someone watching and caring for the rest of us and we can zap them in an instant just by hitting the "notify" button (bottom right of the posting box). Now the "can't sleep, tossing and turning, fluffing pillows" activity turns into a more positive activity. Yay for the EMCC!


Anne-Marie
CG to son, Paul (age 33, non-smoker) SCC Stage 2, Surgery 9/21/06, 1/6 tongue Rt.side removed, +48 lymph nodes neck. IMRTx28 completed 12/19/06. CT scan 7/8/10 Cancer-free! ("spot" on lung from scar tissue related to Pneumonia.)



Joined: Nov 2006
Posts: 2,671
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Hmmm - I will have to try Panera Bread's hot chocolate. Until I get there, though - here is my recipe for nutritious Hot Chocolate Mix:

1 part Store Bought Hot Chocolate Dry Mix
1 Part Creamora or any other Coffee Creamer
1 1/2 parts powdered milk

Mix all together and place in air-tight container.

When you feel like hot chocolate:
1. Put 3 or 4 tablespoons of your mix in a cup.
2. Add hot water or hot milk.
3. For extra nutrition or weight gain, add a nice dollop of vanilla ice cream and watch it melt slowly while you sip and think beautiful thoughts.

Notes:
1. If the Powdered milk looks bunchy or grainy, you can smooth it out in your blender or food chopper before adding it to the Hot Chocolate Mix.
2. If you have trouble finding the hot chocolate mix in the store you can buy it online through OCF's link to Amazon.


Anne-Marie
CG to son, Paul (age 33, non-smoker) SCC Stage 2, Surgery 9/21/06, 1/6 tongue Rt.side removed, +48 lymph nodes neck. IMRTx28 completed 12/19/06. CT scan 7/8/10 Cancer-free! ("spot" on lung from scar tissue related to Pneumonia.)



Joined: Oct 2013
Posts: 559
Likes: 1
n74tg Offline OP
"Above & Beyond" Member (500+ posts)
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"Above & Beyond" Member (500+ posts)

Joined: Oct 2013
Posts: 559
Likes: 1
With the taste buds seemingly gone at week 4 of radiation, sometimes that early morning cup of hot chocolate has the tiniest bit of flavor if I use a LOT of chocolate. That creamy texture from whole milk helps too, not to mention I need the calories.

So, here's Early Morning Hot Chocolate Club - Outpost #3 (central Arkansas) checking in with a progress report. Quick recognition by my crew found another middle of the night advertiser hiding in the bushes, this one pushing golf videos. Standing order #1 accomplished, chain of command notified in accordance with EMHCC directive 1.1.

Rest easy, we are fully alert and on-duty ...

"protecting you while you sleep" (from back in the day when I flew B-52's for Strategic Air Command).

Bombardier Tony



Tony, 69, non-smoker, aerobatics pilot, bridge player/teacher, avid dancer (ballroom, latin, swing, country)

09/13 SCC, HPV 16, tonsillectomy, T2N0.
11/13 start rads, no chemo
12/13 taste gone, dry mouth,
02/14 hair slowly returning
05/14 taste the same, dry sinuses, irrigation helps.
01/15 food taste about 60% returned, dry sinuses are worse in winter.
12/20 no more sinus problems, taste pretty good

Joined: Nov 2006
Posts: 2,671
Patient Advocate (old timer, 2000 posts)
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Patient Advocate (old timer, 2000 posts)

Joined: Nov 2006
Posts: 2,671
It's good to know there are a few of us "watching the store" and keeping us safe from the early morning predators striving to enrich our lives with golf videos, tennis shoes, jewelry, etc. while the rest of us succumb to the restorative sleep so necessary to surviving the attack of the Cancer beast. Good progress report, Tony.


Anne-Marie
CG to son, Paul (age 33, non-smoker) SCC Stage 2, Surgery 9/21/06, 1/6 tongue Rt.side removed, +48 lymph nodes neck. IMRTx28 completed 12/19/06. CT scan 7/8/10 Cancer-free! ("spot" on lung from scar tissue related to Pneumonia.)




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