Susan-
When the group got together in Vegas the first thing we did was compare scars on our necks! It was really quite healing to know that we were all the same or close to it. I wish you could have seen us wearing hats that say "Cancer Survior- ask me about early detection" around the casino! YOU ARE A CANCER SURVIVOR!! Show off that neck!! You made it to have those lovely teenagers!! You tell everyone that asks about early detection because boy do you have a survivor story to share!! We need you out there Susan because all of us need to know we can live as long and as full of a life that you have! You get yourself a hat and take off that scarf! A big hug to you - Kris

Hi Susan,
I'm 42, have 2 kids.
I, like many others, view the scars as battle scars. I am a cancer survivor and have been through a lot. I also talk funny because I have half a tongue.

I am glad to hear you are a long term cancer survivor!!

One thing that is different for you than for many of us is the young age at which you had your cancer. You have had a long time of living with this burden. Wow, what a tough thing for an 11 year old to go through! The teenage years as so difficult anyway, and for you it must have been tough. No wonder it continues to linger in your self-image.

I too stuggle with times when I feel low, yet know that I have much to be grateful and thankful for. Sometimes it feels selfish to feel sorry for myself when I am cancer-free and I know others are seriously battling cancer, or I look around the world at how worse off so many others are. Yet, the negative feelings are normal and acceptable. A counselor may be able to help. I also take an anti-depressant, which helps me to cope. And THIS forum is a terrific place!

Your boss is insensitive. Other comments or questions however, may be curiousity, or like the waitress - because it is uncommon, SHE may be interested because she sees someone else with a similar scar. I know the few times I have seen someone with similar scars, I feel a bond - even though its just a brief passing in an elevator or a fast food restuarant.

I think the answer "I am a cancer survivor" is a good one, and as to more questions (especially in settings like being with coworkers) a quiet reply of "I don't want to talk about it now" should be fine. You don't owe an explanation, but I do think many people are showing curiousity and sympathy. With their questions you can help to educate the public about this disease.

I know many peeople wonder why I speak funny. I feel as though I want to wear I pin or label saying that I had oral cancer. OCF has some pins, but they don't seem to apply because a dentist DIDN'T find my cancer. I had to pursue it.

Our weaknesses show we are human. We love the ones we are close to "warts, scars and all" - that's what makes us interesting.

Welcome to the neighborhood,
your friend,
michelle

SusanW, welcome to the club. You are an inspiration to all of us. 32 years! Wow! Sorry you had to deal with this at such a young age. As noted above, most of us were in our 40's or later before we had to deal with this disease and the afteraffects and had matured enough to be able to deal with comments and curiosity. You are doing a good job. Keep up the good work.

SusanW, how you feel is how you feel and you are entitled to it. I would suggest that if anyone shows interest you do not welcome, you smile nicely and say "Thank you for your interest but I choose not to discuss it" then look away. Said quietly with a smile, this will make most people back off very quickly. As far as your boss goes, what you can do depends entirely on office politics and culture and how secure your job is. If the boss is just a jerk, remember that you are, as you say, intelligent and accomplished and just smile and say nothing when you get some rude comment. Things like that do not deserve a response. Some one once told me the way to deal with a jerk who you cannot, for one reason or another, tell off, is to picture that person naked. Worked just fine for me (grin). Hang in there. You have survived a lot of things, and you will figure out how to deal comfortably with unwanted attention too. Let us know how you are coping.

Hi Susan, we can change our attitude but not that of other people especially those who have not gone through our odeal. I have a colleague who always said, "if I were you, could not eat this or that, could not feel the taste, I would rather kill myself." So how would I think when I heard this? The first time I felt really bad but now I simply think they are inconsiderate, naive, ignorant.... I simply look down upon these people and kick them off the list of my friends. I won't let these people have a place in my mind. That is how I handle negative remarks and insulting/sympathetic looks from people I know. For strangers, I just ignore them and turn a deaf ear to what they say or ask if I am not in the mood. Anyway, you give me hope that a person can be a cancer survivor for 32 years!

Karen.

Hello my friends... I can't tell you how much I appreciate all of you writing in. Thank you all immensely for your kind words of encouragement. I had a long day at work and then errands and then an appointment tonite so I have just walked in the door. I have never seen anyone else who has had radical neck surgery. I think I may have seen an older man one time at a restaurant and like Michele said... I felt a bond with him for an instant. Also I have never been in any kind of support group or really spoken to anyone who has had even a similar kind of cancer until I found this forum. Even though I didn't have oral cancer, they people in this forum have embraced me as one of their own. The type of cancer I had is rare for a child and I certainly don't know of anyone else who had this type of surgery so young.

When I went through all this as a young child (it started at age 5), most of the time I didn't really know what was going on and my parents NEVER told me I had cancer. In fact, my mom didn't ever even tell me until I was in high school and I was asking for more details about what I had done. I'm not sure why, but it doesn't matter anymore. My teenage years were tough... in addition to the scars I have a paralyzed vocal cord so my voice has always been somewhat breathy (that has actually improved with time and I have had teflon injections). Like Michele said... I think because I had my cancer so young and have lived with the scars, etc. for so long that my feelings are far different than someone currently undergoing treatment or recently out of treatment. I've actually never thought about it that way. I don't think I've ever said to someone "I am a cancer survivor", and I think it stems from going thru it as a child.

Carol... your Thumper analogy is superb! I giggled when I read that and imagined myself saying that to someone while thumping my leg wildly! Thank you for brightening my day!

Kris... I wish I had known about the group get-together, maybe I could have come. I don't know how ready I am to have people looking at my neck, but I must admit I would be interested to see someone else's. My right neck is very sunken and the artery is clearly visible next to my trachea, in fact there is a deep depression between the two. They pretty much scraped everything out and even shaved my trachea. I had a little liposuction on the left side about 15 years ago but age takes it's toll and plus I'm overweight so I always look lopsided.

Michele... your letter really touched me. It's like you can feel what I feel... everything you said is right on the mark and perhaps has helped me see some things differently or more clearly. Thank you for your sensitive and caring words.

KirkGeorgia... Hi! Thanks for the welcome! I have often thought since I have looked this way for almost 34 years, and am soon to be 45 (Nov. 16!).... that I would have developed the maturity to deal with this. In some ways I have in that I can talk about it sometimes without crying, but in some ways it is worse than ever. I think I am a big baby frequently! LOL

Joanna... I work in a VERY small office (3 people) and we are all together 95% of the time. My boss is a sweet but totally socially inept man who has a shrew for a wife. Usually I can deal with his comments since I know he means well, but combined with the insensitivity of the waitress, I had just had enough yesterday. My husband would like me to confront my boss about this, but I have decided that it would do no good and may upset me further. For him, I will take your advise to picture him naked (an unappealing thought however LOL).

Karen... Thank you for sharing your experience with me. What an insensitive jerk to say such a thing to you!! I once had a new acquaintance (mother of my son's friend) come up to me at Best Buy to say hello (or so I thought) and instead she came up and said "I have been meaning to ask you what happened to your neck" REALLY LOUDLY... in the middle of a store for goodness sakes!! It was like an assault.

Well I guess that is enough for now... I did the math and WOW it has been almost 34 years since my last surgery.

~Susan~

Susan,

Keep in mind that many people who say things totally outlandlish like your boss are just a bit self-conscious themselves and don't know what to say. In their own way they are thinking they are helping put you at ease because they feel like they have to say something. Even the waitress was probably fishing for information from you because she could sense the wisdom you project and wanted to help her sister but didn't know what to do.

I don't see any religious reference in any of your posts but I do want to share my beliefs with you. I strongly believe that God puts us in situations often that allow us to take our experiences and help others. For example, you have shared a situation that has angered you and made you feel self-conscious but all of us here are staring at your post with our jaws hanging to the floor marveling that you have been a cancer survivor for THIRTY-FOUR years!!

Hold your head high, believe in yourself and remember nobody really needs a response from you. Now, if you look at it like you are really helping them through some of their stuff...the limits are endless.

I am honored to meet you, by the way and Happy Birthday next Tuesday.

Ed

Hi Ed!

WOW I don't think anyone has ever been honored to meet me... I am honored that you said that!

I have often wanted to help others and in the past few years I seem to be able to talk and write about my experiences without becoming emotional(usually) About an hour ago, a woman wrote in to a photography group that I belong to and told us that she was just diagnosed with breast cancer today. Immediately I wrote back with words of encouragement and shared a little of my history. This is something I would not have done 5 years ago - I have always kept everything inside including my feelings. Perhaps I am finally becoming a grown-up? Nahhhh... LOL

Thank you for your letter... all of you here help me so much... more than you know.

Susan

Susan,

I agree with Ed that the insensitive remarks often come from people who have their own insecurities and may speak without really thinking things through first. It might be useful for your boss to visit this site to read some of the stories about other people with strange necks who also got them in a fight for survival.

I've gotten quite used to mine over the past 15 years -- as my husband says: It's part of who you are and it doesn't need to be "fixed".

Cathy

Cathy, my husband says the same thing your husband says about the scars! I guess if it was only the scar on my neck I wouldn't be so self conscious of it, but it is the indentation that is so noticeable, love this turtleneck weather!! SMILE!!!