Thanks so much for the several of you who were writing.

It sounds like some of you are vey similar to me with several recurrences. I have constant pain with my sores and leukoplakia. I've had two surgeries in the last 3 months both ending with clean margins and no radiation or chemo has been recommended ever. The Dr. tells me that chemo is not appropriate for this type of cander and he wants to "save" radiation for a later time. ]\\

We do catch these early as I get checked every 90 days and some times sooner if I'm complaining a lot about the sores.

I also see a pain mgmt Dr. who has me on morphine and fentanol suckers 24/7. They make me feel physically better but very 'fuzzy". It's very hard to concentrate at work.

I was ok after the first several surgeries as I would have several years between them, but now they come more often and I'm getting very depressed about it now becasue every time I start to get my life back together, here comes another surgery.

Any suggestions on dealing with the emotional aspect better.

I feel that working 30 hours a week instead of full time, might ease things up a bit, but my oncologist feels gung ho on my getting back to regular life immediately after each surgery.

I did get a note from my pcp to slowly add hours at work over the month, but as I add the hours, I get more and more tired and my mouth ends up hurting more and more.

I don't want to loose my job or the benefits it has, but I'm totally emotionally not ready to go back to woik.

Does anyone have any suggestions?

Please help!

--------------------
Leslie

Why not speak with your employer and discuss your siuation with them. Just maybe between you there will be a solution to your problem. For your sake I hope yoou can work it out. As they say,, nothing ventured nothing gained. Good Luck.. Jim

HI again, Leslie - I don't know why you have this continuing pain in your mouth? As I mentioned previously, could you ask your doctor to prescribe "Duke's Mouth Wash" for you? That seems to help my husband, plus he drinks cranberry juice, which seems to "calm" the mouth problems? Let us know if any of that helps?
Warmly, JaneP

Thanks for all your kind words and responses. I will try the mouth wash and the cranberry juice.

If there is anyone out there that is living with a similar constant pain that turns into constant cancer, please let me know. I could really use talking to a friend who has a similar problem.

Thanks,
Leslie

Sorry to hear about your ongoing pain, Leslie. It must be very difficult to work while you are taking morphine, quite apart from coping with the pain. As far as emotions go, I found a mild antidepressant helped me. Have you discussed this with your doc?

Let us know how you are progressing, you are not alone when you are an OCF member.

Love from Helen

Leslie: As Helen says, you are NOT alone, many of us here genuinely care about you and want to encourage you.

I hope that your doctor can prescribe something for anxiety/depression if he hasn't already. My big strong 'macho' man thought he could deal with all the side effects of this disease without any 'help', but is much better since accepting a prescription that aleviates some of the mental complications.

Keep posting and keep reading. I'm sure there are others here who have experienced some of what you are going through now; not everyone logs on every day and there are now over 5000 forum members.

Stay in touch and let us know how you're doing.

Lois & Buzz in NC

Leslie: I am thinking pain is part of the game.. I take percocet, A liquid that is made up of narcotics and xanax. It curbs the pain for a few minutes . It isn't long before I am in pain again. I have oxycontin but have never even tried it. I have heard so much about it, I would rather be in pain and no drug dependant. I wish I could give you some advice but need some too. Most advice I get is to take the meds as needed not when I feel like it which isn't often. I think I'm a tough old bird until that pain in my mouth, on my tongue and my throat take over. LOL I guess I am a whimp.

To Helen, Lois and Buzz and jim,

Thank you so very much for your kind words and support.

I feel like I've tried everything. The only thing holding me togeteher right now is that my daughter is home on vacation from college and I don;'t want her to see her mom a basket case.

I've tried the miracle mouth wash everyone talks about. It helps for a few minutes and then gives me a rebound effect that's even worse! I've tried no drugs and can't function and work from the pain. I do go to a pain management Dr. who has me on morphine, fentanyl lolly pops, and lexapro for depression. I don't like driving or working on all this stuff.

My job has been really good with me. I work for a disability insurance company, so they sort of have to be good to me while I am on disability and they are. Right now I'm working part time every day adding a few more hours each week until I'm back to full time. I make mistakes at work because it's hard to concentrate with the drugs. I drive as little as possible. Because I've dealt with this for so many years, I can't just temporarily put things on hold until I get better. The fact is, i won't get better. The good news is that this is a slow moving cancer that won't kill me, because we watch it so very closely. The bad news is that the sores always hurt, and they are always there.

I wasn't handling things too badly until September. I had a surgery to remove some benign sores in order to alleviate some of the pain. I was ok with that. I heard benign sores and alleviate pain and I was all for it.

A week later, yes, I said a week later, after I had completely clean margins and the results all came back benign, I came up with a brand new sore in my mouth. ONE WEEK AFTER SURGERY!

Back to the Dr. who I figured would give me the usual, "let's just keep an eye on it" response.

He didn't like how it looked so he lasered it off as an out patient a few days later.

I've always found I have more pain from the little lazer surgeries than from the major cutting surgeries. True to form, I was miserable.

A few weeks went by and I was getting back to work,when I came down with a very bizarre reaction to an antibiotic and ended up in the hospital for almost a week.

It wasn't cancer this time,just some weird reaction, but the whole thing after 2 recent surgeries, just through me for a loop.

I have a therapist now that is trying to work with me and says I have post traumatic stress syndrome from this last weird experience in the hospital.

I am really fighting hard to get out from under the covers every day, get dressed, and make a day of it.

That's why I so desperately would like to meet some people who are going through something similar. I hope that they can help me and that I can eventually help them as well.

Thanks for listening.

If anyone knows of support groups of people with recurring cancers, please let me know. I live in N.Jersey, 30 seconds away from St Barnabas Hospital(a very fine hospital) but I still go all the way to Sloan Kettering in NYC just because I have a lot of trust in my Dr.

He wants me to get back to full time work right away. I may loose my job if I'm not up to it. I just can't work that many hours right now.

Enough of my woe's already. Thank you for listening.

Leslie

Hi...just wanted to let you know that you are NOT alone. I had a partial glossectomy in '03...clear margins, radiation to my neck just to make sure. I still felt things weren't right and finally, after pressing my docs, had a biopsy in Dec of '04...recurrence in the same spot, hemiglossectomy, no other treatment since all margins were clear (this second cancer was so "new" it didn't show up on an MRI and the tumor board at Stanford U in CA said, cut it out, it'll be fine). Spring of '07, recurrence, this time in neck...radical dissection, trouble eating, swallowing, radiation which fried me...and now, 8 months after surgery, cancer is back. Radiation didn't get it and now, the docs say there is nothing else that can be done...the best thing that has happened is that I've gotten pain meds and an antidepressant and a tranquilizer...I'm spaced out, but no longer sitting around crying all the time...write back...I want you to know I'm here for as long as I can be and am always willing to listen...it helps to know you're not alone...this is such an uncommon (it seems) type of cancer and has effects that are so unique and unless someone has gone through it (or been a caretaker of one going through it), it's incomprehensible.

Hi I joined this sight because I read alot of the things people had to say and I never read any off color anything. I have made alot of my desisions because of things people had to say here. These people here are really careing people and I find myself coming back alot. I had a sjmall case of cancer and it is gone for now. My Dr said I would most likely get it back but I know what I am looking for so it won't get as bad if it does. I was not going to go for the treatments he was saying and yes it made my family mad at me but I was thinking about the work I would be missing. They informed me that they didn't want to miss me. I feel bad that you are going through all this pain and wish I lived closer to you so we could get together and fuss about this mess that seems to have pushed itself on us but I live in Georgia. I took 33 treatments of radiation and slept alot. I took vicodine alot and they put me on zoloft. I voss laid me off so I wouldn't have to worry about things, he even paid me to take it off. He was great, my family was great and I feel better. I still am tired but I am working agin at 40 to 45 hours a week. Good luck to you and I hope your pain gets better. You sound like a very strong person. Brenda

Leslie, you are a real trooper to go back to work so soon after treatment. I was pretty much disabled for over a year post Tx. I would strongly recommend carpooling or finding alternate trasnportation while you are on long term narcotics. Fentanyl is 100X more potent than heroin.

As far as the emotional aspect, ask your oncologist for a referal to a psychiatrist. It takes a specialist and close monitoring to manage anti-depression drugs. That's what psychiatrists do.