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#73 05-31-2002 05:44 PM
Joined: Mar 2002
Posts: 36
molly Offline OP
Contributing Member (25+ posts)
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Contributing Member (25+ posts)

Joined: Mar 2002
Posts: 36
I want to thank Brian so much for creating this website and all the good folks that come and visit and give good advice and support through sometimes very difficult times. My sister has (hopefully had) cancer of the tonsils (diagnosed in FEB 2002). She has her checkup this Monday. I cannot tell you how helpful this site has been. It has helped us to know how to feed through a feeding tube (by slowing it down), why the constipation,the very mental lows at times, and the trials of the radiation and other types of treatment. Yes we did listen to her oncologist and did as he said, but just as often I have turned to this site and all of you have been a lifesaver. My sister actually went shopping for a while today and drove herself and felt like visiting some friends. Two weeks ago this wouldn't have been a possibility. Ya'll kept telling me she would get better and I hung onto that and so did she. She is about a month and a half away from her radiation treatments (twice daily for 6 weeks). She seemed to get sicker after they were completed but I think she is now making a turn for the better. She also cooked dinner for her family tonight-pork roast. She had a milkshake! But still she is wanting to do things again and gain her life back. Tonight she was nauseus again and very tired, but she did have a big day. I know that I have been told by ya'll that she will have good days and bad days and we are very grateful for those better days. Just want to thank all for your help ands especially Brian for creating a site where people can come together and not feel lost in this world with this disease. THANK YOU smile

#74 06-01-2002 01:42 AM
Joined: Mar 2002
Posts: 234
Platinum Member (200+ posts)
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Joined: Mar 2002
Posts: 234
Molly,

So glad your sister is feeling better. This site has been a God send for us all. Tell her to take it slow, just do what she feels that she can. Cooking dinner was a big accomplishment for her. I know it was for me. I enjoyed watching my husband eat it as I struggled with my mashed potatoes and gravy. She sure is lucky to have someone like you by her side. Take care and keep us posted.

Anne.


Anne G.Younger
Life has never been better.
#75 06-01-2002 08:18 AM
Joined: Mar 2002
Posts: 4,912
Likes: 52
OCF Founder
Patient Advocate (old timer, 2000 posts)
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OCF Founder
Patient Advocate (old timer, 2000 posts)

Joined: Mar 2002
Posts: 4,912
Likes: 52
It sounds like the pendulum is finally starting to swing in the other direction. Getting out and about and involved in life again is a big step, though at first it can be frustrating because of how weak you feel. But daily excursions and contact with positive healthy people has a healing effect. Even if it just takes your mind off of things for a while, there is a positive physical response to being part of the world again. Soon the good days will out number the bad.

I thank you for the kind words about the site, but while I pay the bills, and write the educational pages, it is the population of caring people that come here routinely to help others that deserve most of the credit. They are the heart and soul of OCF


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.
#76 06-01-2002 05:07 PM
Joined: Apr 2002
Posts: 52
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Joined: Apr 2002
Posts: 52
Molly,
After a long, emotionally draining day, I just read your post and from the bottom of my heart, THANK YOU.....thank you for sharing your news...I'm glad things are looking up. I was thriled to see how positive your post was!!! Way to go!!!!! I love hearing good news!


Hope is the one thing no one can take away from you!!!
#77 06-01-2002 05:56 PM
Joined: Mar 2002
Posts: 1,140
Likes: 1
Patient Advocate (1000+ posts)
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Patient Advocate (1000+ posts)

Joined: Mar 2002
Posts: 1,140
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I, too, am sincerely grateful for this site. The good information and support I have found here are truly wonderful and have helped me so very much. I went into surgery absolutely unafraid because people here told me exactly what to expect. Now I am about to begin radiation and chemotherapy and am similarly unafraid for the same reason. When these experiences are behind me, it is my intent to share knowledge gained with those who come after me, in hopes that I can replace fear with facts. Thank you Brian and members of the forum for making a tough situation much less difficult. I am in your debt.

Joanna

#78 06-03-2002 05:27 AM
Joined: Mar 2002
Posts: 188
Gold Member (100+ posts)
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Joined: Mar 2002
Posts: 188
Hi......This is an incredible site as we all know! It is full of current, up to date information and everything is so easily accessable. The information literally is "right at our finger tips." Five years ago I wasn't as lucky. The Internet had information, however, a good portion of that was nothing but gloom and doom. When I first "bumped" into Brian on the Internet and then heard about this site, I just couldn't believe my incredible luck. Finally, a place where someone besides ME would know what I am talking about when I mention my dry mouth, radiation, chemo and how tough all this cancer stuff was on me emotionally. For the first time in a very long time I did'nt feel so alone. And like Joanna said, "fears were now being replaced with facts"---WOW! What a relief! Five years out and I still have questions, and sometimes feel the need to just "talk" about my experience. No one should have to walk through this cancer experience alone and now, thanks to Brian and this wonderful site, nobody has to. Sincerely, Donna


SCC first time 1989, with a diagnoses of 'cancer in situ' removed lesion, no other treatments.
SCC recurrence 1997 of tongue and floor of the mouth. Stage III /IV Hemmiglossectomy (removed over 60% of tongue/ floor of the mouth), free flap, modified neck, RAD and Chemo(cisplatin, 5fu) simutainously.
Cancer free 6, yes, six, years!
#79 06-03-2002 05:55 AM
Joined: Apr 2002
Posts: 73
Supporting Member (50+ posts)
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Joined: Apr 2002
Posts: 73
Another note of thanks. People often ask me "what do the doctors say about ..." or "did the doctors tell you ..." I respond that I could fill a book with what the doctors didn't tell me and don't really know. Then I respond with information that I have learned from here. This site has made me feel "normal" in this very abnormal experience. So many people have shared similar experiences. THANK YOU BRIAN.


ilene
SCC stage 1 1987, 1/4 of tongue removed, neck dissection, SCC stage 3 2000, another 1/4+ removed second neck dissection, radiation.

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