Gail, we are here to help in any way we can my dear. We are a support community , if you can't freak out here where people "get" what you're freaking out about, then where can you?

I just posted about being bummed about having to take a pain pill for pain and debating anger management and the Apostle Paul with Gary...just goes to show we can talk about most anything around here

Gail: Ditto what Eric said... try as they may, our spouses/caregivers, friends, relatives and even our medical staff don't "get" what we feel so this is the place where we all come to vent, question and sometimes just to ramble. You can say/ask anything (except for the No Nos on Brian's list). You should never be embarrassed to post a concern/question/statement. I'm so glad I found this site and all of these veteran survivors. They've helped me a lot and I'm sure will continue to do so. p.s. I had to wait 2 weeks post- diagnosis to have my surgery because it was during the holidays and all the docs were going on vacation.

Jesus - people having to wait for surgery for cancer because the doctors are going on holiday? I just don't understand any of this.

My dentist, who had been doing a root canal on me for 3 weeks told me when I first came in with an earache and tongue swelling told me "no problem, you have a small slit on your tongue but no worries - your tongue got cut from your broken tooth - it will go away as soon as I do the root canal and put the crown on". 2 more visits - "well it's not any better, but it will heal soon. The tongue is quick to heal". Finally, on my last visit, when I insisted he look at my tongue closely he practically dropped his tools and sent me to an oral surgeon. If I didn't insist, I would still think nothing was wrong. And he would not have checked. The only time he checked anything was to make sure I made arrangements to pay the $2,700 for a root canal. (No dental insurance). Yes - I paid in advance. My bad.

I am sorry, I don't know about the no no's on Brian's list so I am just going to speak my mind.

My employers and my friends are thinking I am going to just have something removed from my mouth next Thursday, rest for the weekend, and be back on to work on Monday.

No one gets that I have cancer. Cancer. I might never recover. My 20 year old son cries himself to sleep at night. My high school sweetheart husband of 26 years can't function at his job because of this. I cannot even dream of planning our Bermuda vacation because of this. Sounds petty but we have waited 25 years to to this. We had no "official" honeymoon so this was our year to do it.

Sorry to vent.

It's OK Gail. We've all had our turn venting and this is the right place to do just that.

It brings me back to my initial Dx. After I came too, after fainting, I got mad as hell, only to find out later that I also have HCV. I thought that if I didn't die, life was certainly over as I knew it. But it wasn't in the cards and life is very sweet today - in many ways superior to my pre-cancer life.

You'll get there too - it's just one big pothole for a while.

About the docs vacation - another perspective, maybe it'll be better if he is rested up and fresh. My H&N surgeon told me once that the initial screening interval was every 6 weeks because it couldn't grow that fast enough to make a difference in the outcome. Although the waiting is the hardest part.

IMHO the time between the initial DX and the start of Tx is the most difficult. Try not to let your "magic, magnifying mind" run with this (we all have it believe me). Breath deep and take it one day at a time.

Hey, Gail,
I just now read your apology to me--none needed! I think everyone on this board has had their fair share of coping problems, how could you not? I try not to do so much "thinking" now, just get through today, or "now", this hour, etc. I have been given that advice & I think it is good. I do fail at it sometimes, though. Glad you are sharing your questions and concerns.
Best thoughts for you,
Anne

Thank you all again. Pre-op with CT scan on Friday. Will let you know.

G

Hey Gail. I can add to what they all said to you... perineural invasion... it means the tumor is deep enough that it hit the nerve. Why is this important... because apparently to the research I did, cancer cells have a tendency to move along the path of least resistence. In this case it is easier for it to move along the nerve paths.
I too had perineural invasion. What this meant was post op, it put me in a gray area with regards to radiation and chemo therapy. It was one of the things they looked for. The second thing was spread to the lymph nodes. I did have one node involved... it`s all gone now along with 39 others. But they are still giving me chemo and radiation. Partially because the second marker they look for is ECE of the lymph node (extra capular extension) a little of the cancer outside the capsule of the node. I was told I was still in a gray area, however I expressed to them I wanted this treated aggressively - so they agreed and recommended it.

Best of luck in your surgery... PS I didn`t have my jaw split. My dr. made me sign off on it, he said he would only split my jaw if he couldn`t get all of the tissue with good margins without doing it. He told me later he lost 10 lbs in the OR because of that, but his smallest margin was 6mm... so I am duly grateful. One less thing to recover from.

Take care and hopefully things go well.

Sorry - I wasn't referring to you with the jaw split. It was another site, which I refuse to go on anymore because it scared the heck out of me. Sorry if you thought I meant you.

No, no, I didn't - I was just telling you what transpired. Not to worry.. I'm not vain really but it would have been a bigger recovery had they split it. Thankfully they didn't - though I was given no guarantees at the time. Also - I know this sounds totally silly but I'd planned a trip shortly after sugery with the family, so trying to recover from a split jaw would have definitely changed that. As it was we got our week away.