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#14086 11-14-2004 11:56 AM
Joined: Apr 2003
Posts: 15
Susan W Offline OP
Member
OP Offline
Member

Joined: Apr 2003
Posts: 15
Miss Vicki, Lisa and Maria,
Thank you for your responses! I am constantly awed by the people in this forum and their caring words and helpfulness.

Miss Vicki, I have not kept a journal I'm sorry to say. I have kept all this bottled up inside of me for so long.. it is just now coming out. I am extremely self-conscious about my appearance and way too sensitive to remarks from others. At this point in my life, I don't know if this will ever change. But I do know that I feel so much better after finding this forum. I seem to feel comfortable typing the words I have longed to speak... probably due to the anonymity of the internet. It is so difficult for me to talk about this without crying, but I can type about it (I cry then too.. but it's easier).

I have considered going to some type of cancer survivors group, but have never gone. I guess I am not comfortable telling my own story and having people look at me. I also don't want to hear about it could be "so much worse". Having someone say that to me means nothing... I have to realize for MYSELF that yes indeed things could be worse and that I am fortunate to be here today.

I think I mentioned before about my teen years... they were indeed the worst. Kids can be so cruel. Fortunately I was an excellent student and also playing in the band helped. I had several boyfriends in high school and one serious one in college, but I ended up marrying my very first boyfriend from high school. He has only known me the way I am now... scars and all... except for the extra weight I carry now. I was very slim in high school and relatively attractive I guess. I feel very badly about my excess weight and want to get rid of it... but then I think, why bother (when I look at my neck). I know I would feel better if I lost weight... it's just a vicious cycle. I've never had anyone refer to me as a "rock of strength" - wow...thank you! I've always thought of myself as just the opposite.

Maria, I'm so glad that you know someone like Richard! I'm sending positive thoughts your way and hope you have an excellent result from your upcoming surgery. Are you having radical or modified radical surgery? Never having seen anyone else with either type (but me) I have no idea what a modified radical looks like.

Lisa, thanks for the info about the bracelets and the forum abbreviations! I'm going to go order some bracelets and try to follow your example of giving one away when someone says something.

Ok now I have to go clean the kitchen.. LOL
Big hugs,
Susan

#14087 11-15-2004 07:30 AM
Joined: Dec 2003
Posts: 2,606
Likes: 2
Patient Advocate (old timer, 2000 posts)
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Patient Advocate (old timer, 2000 posts)

Joined: Dec 2003
Posts: 2,606
Likes: 2
Susan,

I hope you can feel the love, girl! It is your experiences in life that have caused the dam to break and you to be flooded with love...from total strangers nonetheless. From people all over the world, literally, pouring out unconditional love for you after you had the courage to share your story with us. Go forward from this point and share your story, especially with teens. There is so much pressure during that time, even without visible scars. You survived that as well and anyone hearing your story will be touched and it will change many lives for the better!

Miss Vicki,

You too, dear, are an angel...and a warrior. Thank you, too, for sharing your stories with us and providing His love and strength when we needed it most.

Ed


SCC Stage IV, BOT, T2N2bM0
Cisplatin/5FU x 3, 40 days radiation
Diagnosis 07/21/03 tx completed 10/08/03
Post Radiation Lower Motor Neuron Syndrome 3/08.
Cervical Spinal Stenosis 01/11
Cervical Myelitis 09/12
Thoracic Paraplegia 10/12
Dysautonomia 11/12
Hospice care 09/12-01/13.
COPD 01/14
Intermittent CHF 6/15
Feeding tube NPO 03/16
VFI 12/2016
ORN 12/2017
Cardiac Event 06/2018
Bilateral VFI 01/2021
Thoracotomy Bilobectomy 01/2022
Bilateral VFI 05/2022
Total Laryngectomy 01/2023
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