I've been cancer free for about two months and have been meeting with my ENT Doctor on a regular basis. However, I have become a rather paranoid person the last couple of months. Feeling my neck for lumps or swollen glands, sticking a flash light in my mouth to find anything unusual, freaking out if I feel a bit of a soar throat or an ear ache. Am I going crazy? I sure feel like a paranoid psycho!

Ashley, don't feel like your going crazy, I can relate. I feel around my head, neck, look down my throat I do it all. I'm paranoid about cell phones, implants, I'm afraid of it coming back. It was a year in April and I'm still at it. Maybe with time this shall pass.

Ashley and Connie,

The chances of recurrence are the highest in the first two years post treatment. All of us who are in the "watchful waiting" phase of "surgery only Tx" are paranoid. Try to think of this as being "cautiously vigilant". I was imagining all sorts of symptoms in the first few months after Dx. Now at one year, nine months, I am looking forward to that two-year goal. I began to relax after one year, and my appointments with the ENT have become routine. I have one tomorrow, and today I have spent more time thinking about what I am going to buy at the grocery store on my way home, than I have about my appointment!
Time has indeed helped for me, and I hope it does for you. too!

My daughter calls me paranoid but I don't think so. I think I'm trying to be realistic. Everything I have read about Stage IV spreading to lymph nodes has been virtually a death sentence. I of course am hoping to be in the small percentage that survives, but I don't seem to be at a "lucky" point in my life right now so I really have a lot of fear about my prognosis. I know every case is different. I feel weird things going on in my mouth all the time and hoping it's just the after radiation effects. I see my ENT every six weeks but he can't promise me anything. He's just ready to biopsy anything he sees "suspicious" - so far so good, nothing suspicious. But it's a scary life we have to deal with after that Big C diagnosis.

People, People. as we used to say in the 60s: [quote]Even Paranoids have Real Enemies.- Delmore Schwartz (little known American poet[/quote]
Make no mistake about it, we are fighting a deadly enemy. As a Stage IV with lymph node and perineural involvement plus radiation resistant cancer which came back a second time, I share all your worries. The statistics are bad but I'm still here in spite of them. No reason all of you won't beat the odds too. Too bad NIH doesn't fund a study to see if OCF posters don't do better than those who are alone in a world that just does not get oral cancer or our fears. keep posting and see that your fear, anxiety, worry are all perfectly normal reactions and not a psychotic break.
The challenge is to reclaim our lives.
Resist, Persist, Smile & Believe.
Charm

Bloop - the information about stage 4 being a death sentence is just wrong. There are a bunch of us stage 4 people here on the boards, and there is a lot of outdated information on the web. PUt those two things together and the rational for the death rate statement goes away.

Put your trust in what the people here tell you. 4 is just a number. You are an individual, and not a statistic. I bet you are nothing like the group that the statistics were drawn from. If you are not, then why should you be thinking about something that happened to a bunch of people you are nothing like? You can take that to the bank. It's true.

Ashley,

You are 100% normal. Not paranoid. In fact, if you didn't worry, you would not be normal.

Five years plus for me, no chemo, no radiation and I am still always looking and feeling, just not as often.

You'll see, it will get easier.

Hi Ashley -

You're not psycho. I had a flashlight in my bathroom for a few weeks & checked my mouth daily the first few weeks after I could open my mouth. I finally realized there's a difference between being vigilance and paranoia - vigilance is healthy; paranoia made me feel awful.

It will be two years for me this month that I will be cancer free (optimism is good). I still worry about every bump, lump and spot, and if a change becomes worrisome, I'll get to my doctor pronto.

Good luck and hang in there. Fighting the fear gremlin takes a lot of self control, but it gets easier.

Marlene

Bloop,

Stage IV here and still kicking almost 4 years post Tx.

As that old saying goes "time (and it DOES) heal all wounds". I was just like everyone, scared to d@$&#h for well over a year post Tx that each time I had a scan or exam it would come back positive but now I would be shocked if it came back. All a matter of timing.

Ashley - I'm another example of someone who has been a little too vigilant - in fact I think I planted the idea of the "maglite in the high magnification mirror" everynight for quite awhile. Maybe because it's an area we can see where the trouble started, we're continually drawn to look and the surface of the mouth does change daily. My annual visit to the ent - he saw a white patch in my mouth that wasn't there before - it's right where the bite line is between my teeth on the opposite side. He wants to see me in two months - that kind of freaked me out - I called my dentist immediately - I've never worn my mouthguard - started wearing it - the patch was gone completely in 3 weeks never to return. My regular dental appointment, my dentist couldn't see it and did he look! - he said it's not even worthy of a note on my file. After all this I bit my tongue while chewing the ever present piece of xylitol gum - must be a tumor that I chomped on - produced a small but very visible ulcer - gone in less than 2 days. All I can say is I'm glad I didn't have rectal cancer 7 years ago. I would be very busy with the maglite and mirror and there would be nothing attractive about it if you catch my drift. The moral of the story - relax a little - you will start to think about other things - believe me - been there. The concern for the recurrence never goes away completely but it does fade and you realize that you've really learned something about life - that everybody gets a bite out of the "shit sandwich" - excuse me - it just depends on what you do with it and try to make sure that somewhere someone isn't whipping up the same kind you just took a hefty bite out of - you'll be ok!

Like everyone said, that will get better. I try to do checks once a week, that way I don't obsess too much.

LOL Scootersmom, mag lite and magnification to the rectum! I'm glad you didn't have to endure that!

Patty - couldn't agree with you more! I'm working through it -I hope I can be of some service to other survivors and those in treatment and the world in general. My discomfort and long term effects from this oc challenge has been miniscule compared to others but the fear is just as big and vigilance will be the key to long term survival - Here's to a long life for all of us!

First of all, Scootersmom, you're hilarious! I busted out laughing when I read your reply:) Thank you everyone else for your replies. I am so happy to discover that I am not a crazy paranoid psycho! I have looked into getting some kind of counseling. I feel like I need help dealing with my off the wall thoughts that pop into my head at random moments of the day. Have any of you received counseling? You see, I'm worried that if the counselor has never experienced cancer or any other scary illness, they won't be able to understand my thoughts and feelings. I guess the "big C" has made me realize that, yes, in fact, some day I'm going to die. Of course you always know that through out life, but it's different now. I'm constantly telling my mom and dad to "Drive Carefully. Call me when you get there." Or bugging my boyfriend with "Be careful on the ladder!" or "You're ten minutes late! I thought something happened to you!" I don't just worry about myself now, but I worry a lot more about other people too. My mom asked me a few weeks ago after meeting the chemo and radiation oncologist if I appreciate life more. My response: No, it makes me scared of death more. Of course, since then, I have thought about my response quite a bit. And, I do appreciate life more. I have been taking time each day to do something good for my soul, I guess if that doesn't sound too cheesy. Like, going swimming with my dog or eating ice cream (which I never use to allow myself) I also have been saying "yes" a lot more to things. Allowing myself to experience more than I would have pre-cancer. Anyways, I have rambled on long enough. Thanks again everyone! I'm happy to know that I'm not alone:)