| | Joined: Jan 2009 Posts: 1,844 Patient Advocate (1000+ posts) | OP  Patient Advocate (1000+ posts)
Joined: Jan 2009 Posts: 1,844 | Amy, I did see the Grey's episode you are referring to and I agree there has to be a staff writer out there that has an OC connection. I felt the same way you and your sisters did when watching the episode, but then again I shun going in public due to my disfigurement.
Young Frack, SCC T4N2M0, Cisplatin,35+ rads,ND, RT Mandiblectomy w fibular free flap, facial paralysis, "He who has a "why" to live can bear with almost any "how"." -Nietzche "WARNING" PG-13 due to Sarcasm & WAY too much attitude, interact at your own risk.
| | | | | Joined: May 2007 Posts: 104 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: May 2007 Posts: 104 | Eric,please don't feel disfigured..... I hate this! When my son was paralyzed from the chest down, kids/adults would stare. Not always sure why, cuz I find myself 'looking' at paralyzed people now w/ memories of Chad and empathy. NOT pity, but empathy. I sumtimes feel people feel disabled/disfigured whenever they are not in a normal/perfect body. IF ONLY, people knew what they had gone thru! You are brave/trooper and fixed what you had to fix. 
Jordan's Mom. Linda
She fought the fight with courage, hope and dedication. Ten months of battling tongue cancer. They thought they had it after each treatment. Not to be. Christa died at 32 y/o in Nov. '07.
| | | | | Joined: Aug 2007 Posts: 42 Contributing Member (25+ posts) | | Contributing Member (25+ posts)
Joined: Aug 2007 Posts: 42 | Mom looked at her scars as battle scars. Nothing to be ashamed. It's a disease you wear on your face for the most part which makes it a million times harder than others.
I will never forget the day we were in the grocery store shortly after mom finished radiation and a little kid was staring at her. Mom didn't care, kids will be kids. It was when the mother stared as well that mom felt the need to actually growl at them! It was hysterical. The lady was so mad!
Please don't stay inside! Wear your battle scars proudly! and growl when necessary, it will make you feel better!
Last edited by Amymcca; 04-10-2009 09:08 PM.
Lost my mother, Minnie, to Oral Cancer October 29th, 2008. I am so thankful she had the OCF to help her through her five year struggle.
| | | | | Joined: May 2007 Posts: 104 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: May 2007 Posts: 104 | I love the growl!!!! I can almost see your Mom doing that. She was a brave soul and very much respected. Made me grin!
Jordan's Mom. Linda
She fought the fight with courage, hope and dedication. Ten months of battling tongue cancer. They thought they had it after each treatment. Not to be. Christa died at 32 y/o in Nov. '07.
| | | | | Joined: Jul 2007 Posts: 939 "Above & Beyond" Member (500+ posts) | | "Above & Beyond" Member (500+ posts)
Joined: Jul 2007 Posts: 939 | Amy..I so miss your mom and her posts...much love to your family, I know each holiday brings memories.
Hugs,
Deb
Deb..caregiver to husband, age 63 at diagnosis, former smoker who quit in 1997.
DIAGNOSIS: 6/26/07 SCC right tonsil/BOT T4N0M0
TREATMENT START: 8/9/07 cisplatin/taxol X 7..IMRT twice daily X 31.5.
TREATMENT END: 10/1/07
PEG OUT: 1/08
PORT OUT: 4/09
FOLLOWUP: Now only annual exams. ALL CLEAR!
Passed away 1/7/17 RIP Bill
| | | | | Joined: Jan 2009 Posts: 1,844 Patient Advocate (1000+ posts) | | OP Patient Advocate (1000+ posts)
Joined: Jan 2009 Posts: 1,844 | It's not that I feel disfigured, it's that I am disfigured. My primary tumor took up most of the right side of my face, so there was nothing much that the surgeons could do for me that way. I'm not used to how I look now, I've always been proud of how I looked and my appearance was a major part of who I was and where I got to professionally.
Now I get stared at when I go out or try to eat in a restaurant and I'm not used to it and it makes me feel very uncomfortable. I'm not comfortable with this change yet, it's going to take time for me to make the adjustment to how I look now. I do see my scars as battle scars but I can't say that I'm wearing them proudly. Maybe that makes me weak in some of your eyes but that's just where I am at the moment.
Young Frack, SCC T4N2M0, Cisplatin,35+ rads,ND, RT Mandiblectomy w fibular free flap, facial paralysis, "He who has a "why" to live can bear with almost any "how"." -Nietzche "WARNING" PG-13 due to Sarcasm & WAY too much attitude, interact at your own risk.
| | | | | Joined: May 2007 Posts: 104 Senior Member (100+ posts) | | Senior Member (100+ posts)
Joined: May 2007 Posts: 104 | You absolutely are not weak! It is such a huge transition and the face/mouth are so very very important in this life. My daughter had a very difficult time also.....
It just sucks.....:(
Jordan's Mom. Linda
She fought the fight with courage, hope and dedication. Ten months of battling tongue cancer. They thought they had it after each treatment. Not to be. Christa died at 32 y/o in Nov. '07.
| | | | | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 10,507 Likes: 7 | Eric, its ok to feel uncomfortable being in public. Sometimes I get nervous too when people stare. It can be a humilating experience. I had always taken pride in my appearance too and now I must walk around for 6 months (maybe longers) without any teeth. It has dramatically changed how I look, Ive aged 20 years overnight. Ive noticed a change in how people I didnt know treated me when my teeth looked horrible and now without teeth its much worse.
Im not trying to compare something temporary like my no teeth situation. I just want you to understand you are not alone and others do understand how you feel and its ok. Its a huge adjustment to make when your physical appearance changes dramatically. It takes alot of getting used to. You will also get the hang of restaurant eating again too. Start by going out at off peak times to places where you know the menu and can find something you can eat on it. I always try to position myself facing away from as many other people as possible. With practice, you will be ok and more comfortable.
ChristineSCC 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 | | | | | Joined: Aug 2007 Posts: 42 Contributing Member (25+ posts) | | Contributing Member (25+ posts)
Joined: Aug 2007 Posts: 42 | I don't see anyone who can face this disease as weak! Having the surgery and deciding to fight makes you stronger than a lot of people. You will get to a better place. It took my mom time too. She ran a cheerleading gym so was in front of people all day long. It's hard but you can get through it!
Christine-- Mom felt the same way after she got her teeth taken out. I'm sure she told you. Once she got the implants put in it was like botox or something!
Lost my mother, Minnie, to Oral Cancer October 29th, 2008. I am so thankful she had the OCF to help her through her five year struggle.
| | | | | Joined: Jun 2007 Posts: 10,507 Likes: 7 Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts) | | Administrator, Director of Patient Support Services Patient Advocate (old timer, 2000 posts)
Joined: Jun 2007 Posts: 10,507 Likes: 7 | Amy, wishing you and your family a Happy Easter. Its nice to see you post. I remember your mom and miss her wise advice.
ChristineSCC 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 | | |
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