 
#33187 02-18-2004 07:13 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 | I don't think that this could have been said in a better, or more productive way. For it is true those of us that are still here know the pain, the fear, the anxiety, but truth be told we're still here. Circumstances, doctor
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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#33188 02-18-2004 07:43 PM | Joined: Mar 2003 Posts: 1,384 Likes: 1 Patient Advocate (1000+ posts) | | OP Patient Advocate (1000+ posts)
Joined: Mar 2003 Posts: 1,384 Likes: 1 | Rosie, I have to tell you I am so GLAD you replied! You don't owe me an apology, I didn't think your comment was "thoughtless" in fact I thought it was sincere. You wrote what was on your mind. I know what you are saying when you say you started to write your reply and then deleted. I did the same thing when I wrote the previous post. All in all there is probably four hours (maybe more) into that post and several attempts went into the recycle bin. I also want to say, you have every right to feel what you feel and I have NO right to say you shouldn't feel angry or feel any other feelings (That was not my intent). I was exploring. Exploring my mind as well as the others. The good thing is that this is one of few places where we can express our feelings an others will have at least SOME idea what we are saying. There are probably a lot of people that are going to read this series of posts and wonder what the hell we are talking about. I say WE ARE TALKING! 
Mark, 21 Year survivor, SCC right tonsil, 3 nodes positive, one with extra-capsular spread. I never asked what stage (would have scared me anyway) Right side tonsillectomy, radical neck dissection right side, maximum radiation to both sides, no chemo, no PEG, age 40 when diagnosed.
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#33189 02-19-2004 09:22 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 | Hi Rosie,
If I were in your shoes I would be very angry also. It seems incomprehensible that a 28 year old woman could lose her life to this disease let alone not respond to treatment. Not having children myself I can't even begin to imagine your pain. Your anger is certainly understandable and also a natural and vital part of the grieving process.
About cancer pain, yes I have passed that advice along (that other doctors have told me). There has to be a careful balance between giving people false hope also. I have never advocated doing nothing nor do I "assume" anything. My personal belief (and consistent advice) is to exhaustively rule cancer out positively. I pass the information the doctors have told me (and my own personal experience) because some folks who come here are in complete terror. The fear they feel is not going to improve their outcome. Keeping a clear head and making informed decisions is vital in the early stages. It is common knowledge that oral cancer like many other forms of cancer get dx'd late because of lack of symptoms. Cancers typically cause pain when the tumors are large enough to press against other structures in the anatomy. It wasn't until my tumor was literally choking me to death (and my wife noticed it at night while I was sleeping and tape recorded it) that I finally took the advice of my MD and booked the appointment with the ENT. I share this advice so that others won't as stupid as me and ignore it.
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)
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"You are a mist that appears for a little while and then vanishes" (James 4:14 NIV)
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#33190 02-19-2004 09:55 AM | Joined: Sep 2002 Posts: 642 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Sep 2002 Posts: 642 | Rosie,
If anyone has a right to feel anger...it is you. I hope that I have not appeared smug because I have not happened to feel that particular emotion as I have endured diagnosis, treatment and recovery.
It is easy for me not to feel anger as the sick one was just little old me and I was the one to endure it. If this had happened to one of my children, you damn right I'd be angry and frustrated as hell...especially if I believed that it could have turned out differently with better treatment.
Rosie, you are a wonderful spirit that everyone here really appreciates. Noone here is in a position to judge you, nor, do I believe, would anyone ever do so. Keep on keeping on!
Danny G.
Stage IV Base of Tongue SCC
Diagnosed July 1, 2002, chemo and radiation treatments completed beginning of Sept/02.
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