Personality Changes

moglock

I underwent surgery to remove squamous cell carcinoma of the neck in July 2001, followed by six weeks of radiation treatment in August/September. Physically, I feel I am adjusting fairly well, but my family is noticing "personality changes."

I don't see it, but I am told that I never smile, am difficult to deal with, have a very negative attitude and don't talk to people, especially my family, like I used to.

Any similar experiences?

Any suggestions?

penny2001

Your family must understand that what you have gone thru is barbaric..... Let them read this and they will know that what you are going thru is common. You can review my webpage and you will see that I stated I am very bitter. When I made this webpage, I was very bitter. I now am getting better each day, but have learned that what comes with the healing process, sometimes is not good. My voice is very raspy. Some days I don't have a voice, sometimes I let out a shrill and everyone looks at me. It is hard to smile when you are trying your best to make sure you don't have crap all over your teeth. One day a few weeks ago, I tried to pop a piece of gum in my mouth. Before I knew it, it had dissolved. I thought to myself, maybe I spitted it out, maybe I swolled it. In fact, what happened was it did dissolve, but what it did was dissolve all over my lips. I had white sticky gum all over. I had to scrub it off and took half of my skin off with it.

Or, let your family know how you feel when you are afraid to swallow food. Afraid of choking which I did all the time. Or what little spit you may have is sticky. I call it the foam.... Or what about what no spit does to your teeth. Decay, pain, etc....

What we are told is that we will have a dry mouth. This is NOOOOOOOO-dry mouth. This is a sticky hole in your face.

Now, on a good note, there are clinical trials to help us get that spit back. E-mail me at ... pshaver@goldrush.com ...and I can give you more information on this.....

moglock

penny2001 said:

Your family must understand that what you have gone thru is barbaric..... Let them read this and they will know that what you are going thru is common. You can review my webpage and you will see that I stated I am very bitter. When I made this webpage, I was very bitter. I now am getting better each day, but have learned that what comes with the healing process, sometimes is not good. My voice is very raspy. Some days I don't have a voice, sometimes I let out a shrill and everyone looks at me. It is hard to smile when you are trying your best to make sure you don't have crap all over your teeth. One day a few weeks ago, I tried to pop a piece of gum in my mouth. Before I knew it, it had dissolved. I thought to myself, maybe I spitted it out, maybe I swolled it. In fact, what happened was it did dissolve, but what it did was dissolve all over my lips. I had white sticky gum all over. I had to scrub it off and took half of my skin off with it.

Or, let your family know how you feel when you are afraid to swallow food. Afraid of choking which I did all the time. Or what little spit you may have is sticky. I call it the foam.... Or what about what no spit does to your teeth. Decay, pain, etc....

What we are told is that we will have a dry mouth. This is NOOOOOOOO-dry mouth. This is a sticky hole in your face.

Now, on a good note, there are clinical trials to help us get that spit back. E-mail me at ... pshaver@goldrush.com ...and I can give you more information on this.....

Thanks for the feedback - you are right, people have no idea what it is like to have to "plan" to take a bite of food or what it feels like to scrape the crud off your teeth each morning. Maybe I am more bitter about this than I realize.

Talking to others reaaly seems to help - misery love company, right?

I am taking Salagen and that seems to help, but I wm interested in the clinical trials, so I will send you an email.

Thanks for the help.

Tom

garyr

moglock said:

Thanks for the feedback - you are right, people have no idea what it is like to have to "plan" to take a bite of food or what it feels like to scrape the crud off your teeth each morning. Maybe I am more bitter about this than I realize.

Talking to others reaaly seems to help - misery love company, right?

I am taking Salagen and that seems to help, but I wm interested in the clinical trials, so I will send you an email.

Thanks for the help.

Tom

Tom, be careful with the Salagen, I was taking it for about a year and a half and I started having a lot of pain in my stomach. I quit taking the Salagen and it went away. I don't know if others have had the same problem.

GaryR

moglock

garyr said:

Tom, be careful with the Salagen, I was taking it for about a year and a half and I started having a lot of pain in my stomach. I quit taking the Salagen and it went away. I don't know if others have had the same problem.

GaryR

Thanks, Gary. No problems so far, but I will watch out.

Are you using something else now?

Tom

ilevin

I've been following this discussion and thinking a lot about the issues people have brought up. We've been through life changing events and I think some change in our outlooks is not surprising. This was my second time around with tongue cancer and both experiences greatly lowered what I refer to as my sh*t tolerance. I find I am more likely to respond to something I find upsetting rather than ignore it. I know I don't talk and smile as much - it hurts too much. I have little patience with the people who rave about how wonderful I look - they are so excited about the extreme weight loss I have experienced and they can't understand why I'm not happy about it too - after all in our weight obsessed society they feel that having cancer and never eating properly again is better than being fat. I'd rather have my old life back. Maybe that's the crux of the issue. I miss my old life. Its not that the new one is horrible but it isn't as good as I had before and there are lots of things I miss. I'm still glad to be here and I take pleasure in lots of things but it is frustrating to know that you will never feel really good again due to the permanent side effects. Fortunately I have an extremely patient husband who lets me complain when I need to and supports me in every way possible. I am also frustrated with the medical community. overall the doctors did ok in their treatment of me but none of them were straightforward about what I should expect as long term effects - even when i directly asked them specific questions.

garyr

moglock said:

Thanks, Gary. No problems so far, but I will watch out.

Are you using something else now?

Tom

Tom, no I am not using anything now and getting along very well as long as there is water available.

Garyr

moglock

ilevin said:

I've been following this discussion and thinking a lot about the issues people have brought up. We've been through life changing events and I think some change in our outlooks is not surprising. This was my second time around with tongue cancer and both experiences greatly lowered what I refer to as my sh*t tolerance. I find I am more likely to respond to something I find upsetting rather than ignore it. I know I don't talk and smile as much - it hurts too much. I have little patience with the people who rave about how wonderful I look - they are so excited about the extreme weight loss I have experienced and they can't understand why I'm not happy about it too - after all in our weight obsessed society they feel that having cancer and never eating properly again is better than being fat. I'd rather have my old life back. Maybe that's the crux of the issue. I miss my old life. Its not that the new one is horrible but it isn't as good as I had before and there are lots of things I miss. I'm still glad to be here and I take pleasure in lots of things but it is frustrating to know that you will never feel really good again due to the permanent side effects. Fortunately I have an extremely patient husband who lets me complain when I need to and supports me in every way possible. I am also frustrated with the medical community. overall the doctors did ok in their treatment of me but none of them were straightforward about what I should expect as long term effects - even when i directly asked them specific questions.

I guess I feel the same way - life is OK, but nor what it used to be. Maybe that bothers me more than I realize, thus the poor disposition. I'll keep trying.

hyler1

garyr said:

Tom, be careful with the Salagen, I was taking it for about a year and a half and I started having a lot of pain in my stomach. I quit taking the Salagen and it went away. I don't know if others have had the same problem.

GaryR

Gary, I had a similar problem with Salagen. I would have to throw up about 30 minutes after taking it. Now I don't take anything and just keep water with me all the time.

garyr

hyler1 said:

Gary, I had a similar problem with Salagen. I would have to throw up about 30 minutes after taking it. Now I don't take anything and just keep water with me all the time.

Hyler, I did not realize how much the Salgen was affecting my system until I quit taking it. I keep water with me also, things like popcorn or potato chips are rough.
Gary

coldpilot

Hi, I'm there with you. I had it on my tounge and the floor of my mouth. I went through radiation for two weeks after the surgury after they pulled all my teeth. When I started bleeding from the throat I made them stop. That was six months ago. My surgeon just checked me out last week and told me I'm healthier than before I got sick. My tastebuds came back, but my mouth still gets dry. I hate my dentures. I think radiation of the mouth is barbaric. If the cancer comes back I guess I'll just tryu to have it cut out again. I'll never let the radiate me again. Good Luck.