This is my first time on a message board so hopefully I can figure out how to find my way back here. I am a OC survivor for 4 years now and am thankful to be alive but so tired of people judging me because I still suffer pain & problems from radiation damage to my spinal cord & thyroid among other things. The radiation took all my teeth 2 tears ago and I need two more operations before I could get teeth. I am on disability & medicare that covers nothing so I will probably never get teeth which is SO DEPRESSING! I have been battling depression for years and my friends & family don't seem to understand or care and act like I should just be happy to be alive... I am so embarrassed to go out in public with no teeth & am pretty much a hermit now & very lonely... Help???

Hi, Sheila
welcome to the forum - glad that you found us, sorry that you had to. Hopefully, someone will be able to help with suggestions on manuvering Medicare to get the help you need on the tooth situation and the depression. Having had a recent run-in with depression due to my auto-immune disorders, I have a great deal of sympathy to other sufferers - and also understand how much better it is possible to feel once you get some help.

It sounds like it's hard for you to feel positive about yourself, but I think you're brave and wonderful and have a lot to offer the world. I don't know if you are an animal lover or not, but if you are, you might see if you could volunteer at a cat or dog shelter, or help at a theraputic riding center. The volunteers at these places won't judge you, and the animals won't care - they need love and attention. If transportation is a problem, you might try talking their volunteer coordinator - maybe share a ride.

Take care and hope to hear from you soon.
Maria

Sheila, welcome to OCF! Glad to have another survivor here. You are right, we are all together in this and really do understand each other very well. Im sure your friends and family do care but they probably have a difficult time understanding what you are dealing with. Now you have found OCF, you are no longer alone with this.

I hope you will one day get to this point where you have the confidence to go out in public without being ashamed. Everyone is their own worst critic, dont be so hard on yourself. You are still the same person inside as you were before you changed on the outside. Go out and hold your head up high you are a valuable person who Im sure has much to offer others.


Since you have problems with depression I would suggest you visit a therapist to help with this. Oral cancer and its after effects have a way of making an existing depression problem even worse. You need to help yourself get past this instead of feeling sorry for yourself. If you dont take meds it might be another option to help you. I really hope one day you will not think badly about yourself. You are a survivor and should be very proud of that.

I am one of the positive members of OCF. I also dont have teeth. You know what? It could be MUCH, MUCH worse!!!! I have other after effects as well, I am also very disfigured from having cancer the last time in my jaw. It was removed and the operation was not successful and had to be redone. Everywhere I go, people stare at me and I get the smiles of pity too. That is not my issue, its theirs. I cant sit in the house and hide from life. I even give speeches about what Ive gone thru and I help spread awareness about oral cancer. I also lost my teeth from radiation damage and I will never get teeth due to other medical issues. I am alive which is the most important thing! Before I got sick, I was a very pretty woman. After the 3rd round of oral cancer I was a hideously disfigured shell compared to what I looked like before. I was always a strong, independent person or I dont think I could have dealt with the changes. It wasnt easy but I said to myself that Im still the same person no matter what the outside looks like and I went out and ignored the stares. If I can do it you can too!!!!

Wow, Sheila, that really hits home with me. I was diagnosed with oral cancer two years ago and had surgery and radiation. I also lost all my teeth. My family just can't seem to grasp anywhere near what I try to tell them about how my mouth is just a mess. They liken it to a cavity they once had or how painful it was to have their wisdom teeth pulled. They still insist on meeting at, for instance, a pizza parlor for a family get together and think I should enjoy their company while I watch them gobble down pizza that I can't eat.

Now I have colon cancer metastasized to my lungs and am terminal. Now they feel so, so sorry for me. They can never understand that oral cancer has done more damage to my quality of life than the terminal diagnosis. And they never will grasp it. The only ones who understand are the folks here. That's the only way I made it through oral cancer. Feel feel to tell them just how you feel and you will get great advice from everyone here. Sorry the rest of the world is so ignorant about this cancer.

Shiela - I'm so glad you found this place! You will always have lots of support and compassion from people who can really understand. It's good that you have disability help and medicare. Maybe you could tell them about how you are feeling depressed. THe doctor might be able to give you something that could help. I think, in our culture, so often when people get together, food seems to be a requirement. When I visited friends in Mexico several times since retiring, I noticed that the big reason for getting together there was to play dominoes - any snack or drink served was secondary! And it was a lot of fun. I'm trying to get my family used to the idea of getting together without food being the main attraction. . . . they are not very enthused about dominoes, tho' but I'm working on it. Take care of yourself, Shiela - try to stay busy and come back here often to let us know how you are doing.

Bloop,
I have been wondering about you, but am so sorry about your latest developments. Eating (or not eating) is something that we are all dealing with. Christne is an inspiration. I agree that our culture is all about food. My friends are very kind and try to go places that I can find something to eat, but I always feel that I am dragging them down if I go with them. Bloop, please keep in touch with us here, we all are pulling for you.

Hello Shiela dear. I wonder how people go through this treatment WITHOUT suffering some sort of depression. It is so brutal and drawn out, and then the after-effects never seem to end. If you feel that no-one understands how you feel it must be awful. I know from the forum that my brother Simon had a relatively mild time of it compared to many, and I know how HE suffered. I have no answers for the lack of empathy and sympathy from your family, but I feel very sorry for you, and hope that you pain and discomfort lessen with time. Post often so we know how you're going. Linda

Hi there and welcome Sheila. Congrats on being a survivor above all else. I think that in some ways h&n cancer is like a hidden disability - people look at you and see you as normal when despite looking that way there are other issues below the surface that they can't see - such as difficuly eating, swallowing, talking etc... it's unfortunate but true.. I am pretty close to my new normal - 9 mos out of rads - 1yr out of surgery. I'm sure other issues wil pop up, but for now I feel good. However when I'm out I don't hide my issues - cancer levels the playing field - it is non discriminatory in who it attacks - one day you're fine next you have a life threatening illness. Keeping that in mind I tell people if I'm at dinner... No I can't eat that - and explain why. Its that simple. It doesn't hurt to educate people. With regards to depression, that's a monkey that's two fold. It may have a basis in chemistry (an actual chemical imbalance) or trauma. I get that your family is insensitive - and it's embarrassing to go with no teeth but the reality is there are many others in the same boat - for a whole host of reasons - those that judge based on how you look aren't worth your time, and ultimately don't matter. I have two friends right now who are still fighting this disease (more if you count those from this group) I look at them and sometimes feel guilty - they put this all in perspective. I could very easily face a recurrence, we all could - so I try to live my life to the fullest - try not to let your situation and circumstance get you down, that's when you let this disease win. Find something you like - or enjoy doing and throw yourself into it... Through that, you'll meet like minded people who'll love you and accept you for who you are - and those that don't can take a hike! Hugs!

Welcome to our family and congrats on the 4 years!!
Now I don't think that Medicare and Diability it any different than Ohio's, but Ron has his medical bills all paid for if he meets a certain amount called "stepdown" believe it or not they think that his disability check which is under 1000 is enough money to pay that amount if he don't meet it. It's hard to explain. But either fortunately or unfortunately his doc's office visits and all exceed that amount. So all his medical is taken care of 98% of the time thru medicare/medicaid. As is prescriptions depending on the tier or whatever it's called. Oh and he gets a whole $16 on his food card, it went up since 2007 from $12! Wow huh?
And Ron also lost all his teeth he had left, but being a man, it don't bother him any not to have them. I myself have uppers since I was 24 and I am like you, if I didn't have them I wouldn't be able to go out in public, BUT I also did not go thru what you have and like Christine says, you could be worse so go out and breath that fresh WV air and get out of the house and do something like she suggested with the animals they love unconditionally and screw them folks that judge, they don't know how you have fought to live!
Good Luck and keep in touch

Oh and hey Barb!!! Glad to see you posting, and by your vacation pictures I could never tell you had no teeth you had a great smile in the pics!!!
Take care!!