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#12 - 04/15/02 07:54 PM Disfigurement
sally b. Offline

Registered: 03/27/02
Posts: 2
Loc: new york city
How do you cope with the disfigurement of the face? I wear a surgical mask when I go out.
People stare, of course, and children point at me and question their mothers.

I do wonder how others manage.
Sally B.

#13 - 04/15/02 08:22 PM Re: Disfigurement
vb Offline
Supporting Member (50+ posts)

Registered: 04/09/02
Posts: 64
Loc: Syracuse, NY
I am sure that any disfigurement looks worse to you than anyone else. People are their own worst critics. My mother had neck resection, radiation, her mandible removed, over 1/2 of her tongue removed, plus some of the floor of her mouth. I think she looks pretty darn good considering everything she's been through in the last year.She thinks she looks much worse than anyone else does. I was expecting much worse than how she actually looks. I'm not sure how extensive your surgery was, but if it really bothers you enough to try and hide it, and again I'm sure it bothers you more that anyone else, have you looked into reconstructive surgery? I know that they can do quite a bit more that they could even 5 years ago.

#14 - 04/16/02 05:19 PM Re: Disfigurement
Veronica_dup1 Offline

Registered: 04/15/02
Posts: 20
Loc: Loves Park, IL
My mom has had a radical neck dissection. She thinks she looks different & that people are staring at her all the time. She really looks no different to me now than she did before. She looks great considering everything she has gone through. She had the front 1/2 of her tongue removed, a pectoral flap to rebuild the bottom of her mouth, trach, feeding tube, skin graft, reconstructive surgery on her breast because where they did the pec. flap became so infected they had to remove the dead tissue. I think you should not worry about what others are looking at & be thankful to have made this far. Remember the old saying beauty is only skin deep. It is what's inside that matters. Take care!
I have learned that life is too short. Spend as much time as you can with you family & loved ones. You never know what tomorrow will bring.

#15 - 04/16/02 09:45 PM Re: Disfigurement
Rick Offline

Registered: 03/19/02
Posts: 7
Loc: Edmonton, Alberta, Canada
I had my neck dissection 19 years ago, pec flap to rebuild the tongue and floor of the mouth. A turtle neck was a regular piece of clothing for me back in those days. Everything heals with time. If you can look forward more often than looking back, the healing process increases ten-fold. Enjoy sunsets, music, literature, or anything else that you have a passion for ... and hang in there.

#16 - 04/16/02 11:39 PM Re: Disfigurement
Brian Hill Offline
OCF Founder
Patient Advocate (old timer, 2000 posts)

Registered: 03/18/02
Posts: 4734
Loc: Laguna Niguel, CA
Being different in our society is tough, and children in particular, out of ignorance of their impact on the emotions of others, can be brutally candid and overt sometimes. At their young age, it is likely that they have not themselves been subjected to any significant physical or emotional scars, and they lack the perspective that might temper their behavior. However, even I find myself unstoppably curious at times, catching myself staring at the one legged man, with the ultra high tech leg who jogs by my home, or at people with large, visible scars. I suppose it is human nature. I think what you have to attempt to put into perspective, is that it is more about how we view ourselves than how others view us. We may assume that others find us unattractive, especially when we ourselves do not like the way we look. Rather than shock or distaste, in reality, their stare may be something completely different, born of compassion, or simply benign curiosity. I suspect that if he sees me staring, the one legged man doesn
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.

#17 - 04/18/02 01:18 PM Re: Disfigurement
Donna Offline
Gold Member (100+ posts)

Registered: 03/20/02
Posts: 188
Loc: Plymouth, Minnesota
Last night I was in the grocery store when all of a sudden I heard a barking a dog----thinking there is no way there can be dogs in this grocery store I began looking around to figure out where the noise was coming from. All eyes were on this gentleman and his family and it took me a minute to figure out why UNTIL the guy began barking and twitching uncontrollably. It was obvious the guy had Tourettes Syndrome, and it was obvious that he was used to numb-nuts, like myself, staring at him. My first thought (and I hate to admit this but...) was "oh, the poor guy" but as I followed him in the store buying my groceries, my opinion quickly changed. In between barks and twitches he interacted with his children, disiplined them when he needed to but always in a kinding and gentle manner. He lovingly put his arm around his wifes shoulder once and both of them seemed very happy...content. He wasn't hanging his head in shame and the kids didn't seem to be bothered by his interruptions of barking or twitching one little bit. Neither did his wife. And even the numb-nuts like myself quit staring. It was apparent that he wasn't looking for any pity from ME or anyone else. Because he felt so comfortable in HIS skin, he made me feel comfortable---- along with about 95% of the store that day. I quite clearly remember the days after my surgery and how people reacted to my scared, swollen face or how they strained their ears when I spoke my first few words after losing over two-thirds of my tongue. I wore a LOT of turttle necks---had one in every color---still do. But as time went by things did get a bit easier for me and now I no longer pay attention to people looking at me (I'm not even sure they do anymore) Once in awhile I'll have a child look at my face and ask "what happened to you" but even those days are few and far between. I'm guessing it's because like the guy with Torrettes Syndrome, I have learned to just carry on with my life. I hope as time passes your disfigurement gets a bit easier for you. As we all know, its whats inside that really counts anyway. 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!

#18 - 04/23/02 09:40 AM Re: Disfigurement
youngerag Offline
Platinum Member (200+ posts)

Registered: 03/19/02
Posts: 234
Loc: Wilmington, Delaware
I had my neck disection done approximatley a year and a half ago. As others have stated, turtle necks were my norm. Not only do I have them in every color, but long sleeve, short sleeve and sleevles. Turtle necks for all seasons. I'm the only one that sees the scars and if fact considered plastic surgery last November to make things look better in my eyes. Decided I didn't want to go under the knife again, and backed off at the last minute. Please look beyond your scars and into yourself for the inner strength that will pull you through. Take Care. Anne.
Anne G.Younger
Life has never been better.


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