I am angry about the side effects of the radiation but I am thankful that the treatments killed the cancer and I am aware that things could be much worse. I am angry that my mouth is constantly dry. I am angry that I can no longer eat the way I used to, or even eat the kinds of foods that I used to. I am angry that I am no longer my old self and I do NOT like my "new" self. I am angry that my social life has been uprooted because I can no longer go to a movie with my friends and eat popcorn or go out to eat with them anywhere! People have told me all along that it will get better. Well, I don't know if I believe that or not. It has been almost a year since my last treatment and things are not much better at all. I feel like I've just been dumped out on the street to fend for myself after being rushed through an assembly line of treatment. Sorry, I just had to vent.

Hi there- So what is causing you to no be able to eat like you used to? Is your mouth still very swollen? I know it is VERY frustrating the treatments to kill this kind of cancer. It impacts every part of our lives. I think there should be more therapies available for after treatment to help with that kind of thing.

Well I hope things get better for you soon!

Kate

x28007,
Welcome and congratulations to you for reaching the one year milestone as a cancer survivor. Vent as much as you like it helps. I'm not sure if you wanted some suggestions about the points you posted or were just venting. I decided that I would offer my assistance to try and help you put a smile back on your face.
My cancer as you can see in my profile was not oral cancer but, I felt similar anger about what life had dumped on me and messed up my "normal".
Dry mouth from radiation can be miserable. Unfortunatly you can either put up with it or try to learn to live with it. There are things that you can do to immediatly help the situation and as well, stimulate regeneration in the affected salivary glands.
If you could let me know what you are currently doing or what your doctors suggested you do for dry mouth I may be able to help you. The same goes for eating, a few details of the exact problems could allow me to offer some solutions.
I know from my own experience that suddenly you feel all alone when you aren't going for examinations and treatment regularly. Then emotions and anger set in. Sure you have been told it will get better but until it does you are the one who deals with it.
If you would like me to try and help you out let me know. You can PM or e-mail me if you don't want to post the details.
I hope you felt a little better after you vented.
Cheers,
Mike

I was at a cancer conference a couple of weeks ago as a speaker, and one of my co-presenters was Dr. Kian Ang, my old treating radiation oncologist, head of the department at MDACC, and president of ASTRO... certainly no light weight. So since I am catching up with him, I start into my litany of complaints that are post treatment radiation induced... not unlike your list, but more extensive and with some life altering issues like 55% occluded carotids from radiation scar tissue and more. He politely listened to my rant about all the shortcomings that I currently find in my physical self. Then he said to me, " Brian, is it lost on you that you have to be alive to have the complications that you have"? As a stage four, circling the drain when diagnosed patient, who is around 10 years later, lucky by any standards to still be here, I clearly had lost my perspective. Even dealing with people much worse off then myself routinely, I can fall into this. It is not an attractive part of me. It is easy to do if you are not careful.

Hi x28007, there's just no doubt about it! We all agree that cancer sucks! You've definitely found a safe place to vent about it, and we all understand!! I think Dr. Mike's reply to you was so wise--I hadn't thought about the act of being dumped by all the experts after treatment ended. My cancer center arranged the calendar so that I see a different one of my three docs every six weeks, in going through my 3-month cycles of visits. So it's not so long without contact with them, and I treat them to smaller ventings but more often.

As for the difficulty w/dry mouth, I have medication to help with my saliva scarcity. It's called Evoxac. My rx is 30-mg capsules three times a day. Although it's not the answer for everybody, you might want to ask your doctors about it. I can always tell when the time gets away from me and I forget to take it because my mouth goes dry again. The only side effect I have is that I sweat more than I would otherwise, because it gets those glands working harder, too. But I'm in the "hot flash" zone anyway, so my sweat glands were already whacky.

Hey, summer is coming, and you can go out with your friends for ice cream and milk shakes! Do you have favorite foods that are soothing for you? Yogurt and pasta were life savers for me! While others would order pizza, I would get the spaghetti or lasagne. I got back to eating bread thanks to Italian restaurants, too--just dunk that bread in LOTS of olive oil!

Are you feeling any better yet? I sure empathize with you!!! Take care of yourself, okay?

Carol

Brian is, as always the voice of reason, if you are able to complain you are still living. Sometimes I forget that and find myself in the same position.
Let us all remember; there is always someone who is in a worse position than we are, there are many including our friends and family who are no longer with us because they were a little or a lot more affected by cancer than we are. Everyday that you can participate in is a good one when you consider the alternatives.
My best wishes to all of you and thanks for helping me focus my enegies, once again, Brian.
Cheers,
Mike

I know exactly how you feel. And if we exchanged detailed stories I might make you feel better because my guess is my long term after-effects are worse than yours. I still struggle to eat soup and yogurt three years after treatment, for example. I would give anything just to be able to eat stewed meat let alone popcorn which is in the realm of pure fantasy. Don't give up on further improvement with your swallowing--it happens, I've seen it happen here--but it's definitely OK to be angry about where you are once in a while.

I know Brian is right we should all just be glad to be here, but I have had doctors remind me of that enough when I complain that I also resent being told that on the rare occassions when I do vent. It's OK to just be angry sometimes. We don't ask non-cancer survivors to be grateful they are on this side of the grass all the time no matter what else happens in their lives-why is that fact supposed to make us cancer survivors instantly forget all the difficult after-effects we struggle with? You don't have to be glad all the time. You can be a raving cancer-survivor b*@#ch and I'll understand, as will many of us here. Because we know the irony is that if you let yourself feel the way you feel, it helps keep you sane and not full of anger most of the rest of the time.

Nelie

Nelie
I hope I didn't give the wrong message. Anger is an emotion, I feel it as I am sure all of you do. It most certainly has been a big part of my life that I sometimes have trouble dealing with for awhile. My intention as I am sure Brian's as well was not to make others think that everything is all right and the sun is shining. Some days I just don't want to be around anyone but I always try to find something good because that is how I get through the day.
You are absolutly correct when you said, "We don't ask non-cancer survivors to be grateful they are on this side of the grass all the time no matter what else happens in their lives-why is that fact supposed to make us cancer survivors instantly forget all the difficult after-effects we struggle with? You don't have to be glad all the time. You can be a raving cancer-survivor b*@#ch and I'll understand."
Grass, it's all mud around me! I sometimes want to tell the, "It'll be alright", never had cancer crowd to piss off and leave me alone. Just like you. Yeah, I'm ranting....sorry.
I have learned so much from everyone here and not a moment goes by that I don't remember what I've been through and I'll never forget and don't want too. Cancer sucks!! It did however bring out the best of me. I guess that was the only point I was trying to make.
Nelie, I'm not trying to offend or attack you in any way. You have and continue to be a voice of reason that I can always rely on. I admire your spirit and hope too continue learning from you.
Cheers,
Mike

Mike, I wasn't offended by what you or anyone else posted. They are two sides of the same coin in my experience. I spend a lot of time in my life practicing gratitude, which, as an experimental psychologist, I know has been proven to increase one's overall level of happiness! On the other hand, I know sometimes I just need to be allowed to be angry over what I've lost to the damn disease. It IS a part of grieving to be angry and I think sometimes women have a harder time feeling it's OK to feel that way.

Nelie

007,

Your recovery is still a long way from being over. I felt improvements in my taste and dry mouth just 2 months ago when I was 16 months post Tx so don't give up yet.

I am glad to see venting. I do it every other day, it seems. I told someone once that one day I am so happy to be alive no matter that I cannot eat hardly anything that has to be chewed and have trouble speaking ( and used to be a public speaker). Then I have days where I am so mad at my surgeons for getting me into this predicament and "dropping me off" to live with it. They just say "you will just have to live with it". I am humbled one day and ready to fight back the next. So many emotions go through our heads that we just don't need the critics all the time. Does it ever stop, the going back and forth?
Debbie

Dear 007,
I did not have radiation, but I did have a surgery that has changed my life forever. I understand as we all do what you feel and anger is okay, as long as it is temporary, believe me I have my moments when the thought of living another 40 years like this is not pleasant at all. No one who has not been through a form of treatment for cancer of the head and neck could ever possibly understand, that is why this site is so important. Hang in there, vent when you like here and then move on, listen to the birds sing as spring approaches and be happy!
I have had to develop an attitude of gratitude through all of this pain. Not easy but it can be done. (on most days)
Wishing you sunshine and soft breezes.
Adele

I know that same anger. I am 2 days out from radiation tx, and I get angry and depressed that I am no longer able to eat and drink. The 10 hour surgery and month of recovery was a breeze compared to the nightmare of radiation and chemo side affects. In between my surgery and treatments, I was able to resume eating and drinking as normal. Now if I had to do it over again, I would have a hard time saying yes, despite the fact the radiation and chemo are supposed to eliminate any remaining cancer cells. Maybe I will be able to eat and drink as normal after a short period of time, but it certainly doesn't feel that way. When I spend most of my day spitting up a nasty plegm, and my mouth being a little dry to it makes it nearly impossible to spit out--I get frustrated. I find myself crying about what seemed so insignificant in my life before, but now is a constant reminder that I live with cancer. Trying to find strength in my surroundings, and hope that the next day is there to greet me.

Paul

Paul- My husband completed the radiation and chemo in December. He definately felt horrible for awhile afterwards. He is now starting to eat more solid foods. He has a PEG for most of his nutrition. It does get better-it just takes time. The people that have to go through this hell are the strongest people on earth. My best wishes to you, Sue

Paul,

You are not recovering from a bad case of the flu. Your body has been tortured and has fought for it's life so you should not expect to bounce back in a few days as if it were nothing. In fact don't be surprised if you feel even worse for the next few weeks, most of us did. That said, you will recover but it will take many many many months of teenie, tiny baby steps. At first you may feel better for a day and worse for 2 days. Slowly the good days will outnumber the bad days until you stop having bad days. You may feel weak as a kitten for a few months but slowly your strength will return. Your taste and your dry mouth will be the last things to recover as mine recovered almost fully over a 16 month period.

Hang in there and be thankful that there is a Tx, however barbaric, that can defeat our cancer most of the time. In the relatively brief period of time I've been on this site I have witnessed far too many that didn't live long enough to complain about their recovery.

Paul,
There is light at the end of the tunnel... I know at this point it's hard to believe, but there IS an end to all your misery. I was angry as well, but that wastes too much good energy. I completed my rad therapy Oct. 19th last year, and had my PEG removed Feb. 5th. Of course I had committed to no PEG, but got one anyway one week (10/26/08) after radiation was completed... had to, or I would have blown away in the breeze. Do the count to see how long I had mine... maybe you'll be lucky enough to shoot for the same, or nearly. It was more than extremely frustrating being unable to eat, or really even drink anything, but by early to mid January I was eating things like broccoli-cheese soup (Ruby Tuesday's is very good), Red Lobster's clam chowder, Campbell's soups that are easy on the tongue and insides of the mouth (no tomato, it's too spicy). If you are looking for affirmation that this too shall pass, then I can give it to you... overall I lost right at 70 lbs. and have yet to regain any more than five pounds of it. I'm still very far away from being able to enjoy food as I did before, but at least I am able to eat. You should be able to before long, so just hang in there... experiment when you feel like it. I just took my pain meds and stuck with the Jevity tube feedings until my mouth could take different things. One of my biggest problems is manipulating food with my tongue... I had practically the same surgery as you, but with no neck dissection, just 30 rad tx... another problem is my missing bottom four molars... it's a bitch eating steak without those babies, oh, an another... heat sensitivity on my tongue... and yet another, sensitive teeth. I still can't handle really cold things. One thing I did to satisfy my cravings was to watch the Food Network, and the Travel Channel... the appetite was there, but the ability to enjoy it was not, but no one nor any thing could stop me from dreaming and planning. Anyway, keep your chin up, and your eyes wide open for the next move. Best of luck.

LOL JB, you sound like me. I am an avid foodchannel and travel network. I am hooked on watching them prepare foods that I won't be able to eat for a long time, but I sure do have a lot of recipes for that day. At the poresent, evn water in my mouth feels like a torch . I enjoy my Carnation and a bottle of green tea a couple of times a day. One day I will have teeth again and be able to chew and swallow again. I can swallow but my gums don't even meet where it would be possible to attempt to chew. LOL Enough crying from this guy. Sorry all, but you are my sounding board.

Jim,
Glad to see/hear you are doing so well... have been keeping up with your progress, but not saying much. I recall the days I couldn't even drink water, however as I said, this too shall pass. God bless, and take care.
JB

Jim, Hang in there. I too went through a phase where even water burned my mouth and it felt like it was never going to end. But things do get better--for most people much MUCH better so have hope and plan recipes for the future!

Nelie

Wow - I couldn't believe my eyes when I read your post. For a second I thought I was reading my own post from my personal blog that I keep. I posted nearly identical thoughts and emotions just last week - and like you, I'm just at a year out. It does seem like there is a cycle to what people experience in terms of emotions and reactions and one of these days I'm interested in spending some time researching and recording those...

I can tell you what broke me out of my funk that I was having early last week - getting the wonderful news that for the first time my post treatment scans were "unremarkable!" I went from feeling angry and frustrated in the early part of the week to feeling elated when I got the news on Thursday. I didn't even realize at the time that the stress was really getting to me - sometimes the waiting and wondering if the disease is still there makes all of the incredibly inconvenient and uncomfortable long term side effects seem that much worse. We are pushed to the breaking point so often with this disease and the treatment aftermath - it is no wonder that we occasionally snap and need to vent! Thankfully people here understand - people in the "never touched by head/neck cancer world" just don't seem to get it.

Speaking of people who just don't get it - my father in law wants to know if I tried Aspergum for my trismus and dysphagia. That's right - he just knows that the three oncologists working on my case must have missed prescribing chewing aspirin gum for all of my woes. Don't you wish things were that simple?!

I hope good news comes your way soon and that some of your stress will ease up a bit! In the meantime, I think you have every right to be angry about the side effects - they SUCK!

Hi!, I'm new and have never been involved in any forum of any kind so this a first. I don't know why I started here, but I guess I'm angry, so I took a look. I am an 8yr survivor of Adinoid Cystic Carcanoma, of my right poratid gland..I still can't spell any of it right. Anyway I was 51 when it all started. I had radical neck resection and a bunch of other stuff I don't even remember, (I'll have to bone up)followed with some pretty horrific radiation treatments. I lost all my teeth at about the yr 2 point, and couldn't wear the full dentures that cost thousands of dollars. I have chronic pain, and discovered a new cancer (on my tongue) in Juanuary (also a story for another time-can't eat al all now) But let me tell you this, time is an amazing healer, as the old adage says. By the 4th or 5th yr I was eating peanut butter and jelly sandwiches, and last year discovered popcorn again! What a high that was! This just a small portion of my story which I'll post in the other place. I just wanted you to know that you must keep experimenting, and spit out what dosen't work, remember not to choke yourself though-croaking from choking would defeat the purpose (lol) Am I angry about all this? You bet, and I'll be looking for help from all, but not on your time. Every now and then, look back and see how far you've come. Hope I helped, Nan-z

Nancy, I lke your outlook and attitude. Hmmmmmmm popcorn. How I wish.

Nancy,

Sorry that you have had to endure all this crap but I like your seasoned approach to dealing with it.

NAN-Z hats off to your Attitude !

x28007
I totally hear you. My husband and you have a similar diagnosis, similar side effects, similar ANGER!!!
We truly appreciate his doctors, treatment and LIFE. Our anger doesn�t mean we don't, and we wouldn't want any of his doctors to think otherwise. Each of them did their job, and if it were based just on the fact that the Cancer is gone they did it well. But honestly, any doctor or human would have to admit there�s more to life than a beating heart or breath of air. What about Quality of Life?
When the treatment ends and the radiologist says �good bye�, the chemo nurses are doing their goodbye dance and the surgeon and oncologist say �treatment is complete, we�ll re-check you every three months�, you�re going �Whoa!!!!!!!!!! Wait a minute. I still have issues!� And they�re like �we told you there might be side effects� or �Yes, but the Cancer is gone� or they hand you a stack of tongue depressors to help with your trismus (that wouldn�t be an issue if they told you way back in the beginning make sure you work on your jaw every single day). Don�t� get me wrong. �Cancer Free� alone is huge. Reality can be difficult. But sometimes you�re not given adequate information, support or opportunities to try and help yourself; that�s not reality. Quality of Life is HUGE. You lost some of it.
My husband was asked by a former student of his to be the guest speaker at the Mini Relay for Life she was putting together for her Senior Project. I suggested to him he take a different approach; use this opportunity to educate our community on the unseen or unknown hurdles a Cancer victim encounters throughout their battle. He did, and the audience embraced it (thankfully!) Numerous people approached him, thanking him for sharing what was obviously difficult, and to most unknown. It was risky, because they were most likely looking for something inspiring. But the reality is, as inspiring as winning the battle is, there are scars. Being angry doesn�t mean you don�t appreciate life. Get ticked off; then move on.

You are so right about quality of life issues. The side effects are devastating and I think health care professionals should be more upfront about the duration of side effects. many led us to believe that these issues would resolve themselves soon after treatment ended. You are left feeling like something is wrong with YOU when this doesn't happen. I think that most people don't want to sound like whiners. People in these fields should be more sensitive to this. Although I have to say that the nurses my husband deals with on a weekly basis at JFK Cancer Center in Edison, NJ are angels. I have never met a more wonderful group of people in my entire life. They are very sensitive to his continuing issues.

Sue

My RO's nurse kept telling me that my dry mouth would go away in 4 to 5 weeks post Tx and my taste would return as well in that time frame. When it didn't she would say things to me like " you poor baby, you are having such a rough time." So I naturally thought that I was not recovering as well as most and that something may be wrong with me. Then I was referred to this site and found out that not only was I normal, I may have been recovering ahead of the curve!! In 2 weeks time posting on this site I learned soooo much that I went back to my RO and told him what damage his nurse was doing by filling his patients' heads with false hopes. Then the 3 of us had a nice sit down.

Friends,
Yes, little do most of us know that the day when we happily ring that bell to celebrate the end of radiation and treatment, our trials are just beginning. Like most of you, the hardest part of my entire treatment and recovery, was once the twice a day radiation ended, and there I was sitting at home, finsihing my 8 AM tube feeding with nothing much to look forward to except my 12 noon feeding. It was quite depressing and I got depressed.

As great as they were at MDACC with saving me, the medical staff seemed insensitive or ill-informed about the wellness issues. On my own I contacted the social worker in the wellness section at MDACC and learned about a men's support group and free psychological counseling for cancer patients. Actually after a few weeks, and a daily two mile walk I began to feel much better. I would plan a little errand or two each day, and maybe have a friend or relative stop by, and along with the walk, as I said, things started rapidly to improve.

I also got angry at some of my medical people at MDACC at that time. I was single at the time, but now married, my wife says.."those people saved your life...why do you give them hell?". I have always told her that sometimes they need someone to give them a little hell. My wife volunteers at MDACC every week, pushing a coffee cart around the hospital to provide free coffee to patients and their families and one thing that she has to agree with me about...the head and neck section always has patients waiting interminably.
I seldom go in for check-ups anymomre, but the last time I went, I got a little p.o.'d when the ladies behind the check-in desk at Head and Neck, instructed me to stand behind a line to wait to be called to the counter, this new procedure being instituted supposedly to comply with the privacy requirements of HIPPA. I felt like, and stated to them that I was being treated like those poor folks at the City, rudely being told wherre to stand and put into long lines in order to pay their traffic tickets. I was indignant and let them know it.
A patient relations lady who happened to be there, tried to calm me down and actually agreed with me.
I don't mean to be too much of a curmudgeon, but damn, we are enduring having cancer and dealing with difficult medical treatment, and you are going to tell me to stand behind some damn taped line on the floor! I don't think so!

Anyway, the good people at MDACC did save my life and for that I am very grateful, although I did have to be a squeaky wheel from time to time to avoid getting lost in the system. I was never angry about getting sick, and never angry about having to deal with the symptoms and side effects of treatment, but I was sure as hell angry from time to time when the medical folks were insensitive to simple needs.

Take care,
Danny G.

Danny,

When you put it that way I suppose I have to agree to some insensitivity on the part of medical personnel. My experience with MDACC has been a very positive one but then I compare that to my treatment elsewhere and I find them far above others. However, I do think they forget the emotional aspects of the disease now and again...like the time I went for a followup appointment with surgeon..knowing he had the results of my ultrasound after a bout of slightly swollen lymph nodes which we presumed were related to a cold...after waiting a couple of hours I was called and taken back to a "procedure room", with all kinds of equipment and not the usual exam room. Left without any explanation my mind ran wild...maybe the lymph nodes hadn't gone down...maybe it wasn't the cold...I'm about to have a biopsy etc. The doctor came in...ran out to review my labs and than asked me why I always looked so anxious...LOL...to which I replied "Well you put me in a PROCEDURE room!"...He smiled and said "well they ran out of regular rooms and we wanted to get you seen and on your way". Do you think they might have thought to mention that to me before they put me in there?

In the scheme of things it's not a big complaint...but somehow, I don't think I'm the only one who deals with anxiety during followups and one would have thought that would have been taken in to account. Still until you've been there I'm not sure you can anticipate all the things that are critical. I do think MDACC tries...and like you, I'm grateful for the excellent medical care I received.

LOL I'll have to post another time when I am more with it. I had to take a pec for the 1st time in a long while. I can't even move my body without pain coming from my neck and left shoulder. Maybe i over did it hand diggind a garden with a spade and hoe.

My complaint is from Rome where I live and that is I like to be kept informed and I have to pull answers out of the Dr. or nurse. It is like they don't want to explain or tell me anything. The only way I can get info is to ask for a copy of the test or my records to keep up with information. I know I must have a good Dr. as I am sill abovve ground but I would like the Dr.'s to tell me my diagnosis, explain treatment options, and quit treating me like they don't want to give me any information. It is as if they feel the least I know the better, but for me it is the more I know about something the better off I am so I can make informed decisions and be a part of my treatment. Thanks, Angel

Angel,

Have you said all of this to your doctors? Sit them down and tell them exactly how much information you want. If they don't get it, see if there's patient advocate or social worker you can talk to. I think every patient has the right to all information regarding his or her care.

-Margaret

Margaret in ma, Where would you find a social worker or patient advocate? I have have a phone number for the cancer navigators here an I will try them again. First off I couldn't even get them on the phone as they would say the person I needed to talk to had gone for the day, and that was every time I called, until I asked them for their bosses name and who actually ran the place and then the person they said had left for the day again conviently got on the phone and spoke with me. It was a short conversation and she was pissed, but I don't think I should have to go to the extream and be rude to be able to get information. I want to cry sometimes when I have to push someone to get answers. I normally just clam up and give up. At the cancer navigators I called 5 times before I had to get rude with them to get someone on the phone so I could find out exactly what they did there. Now I am sure that no one likes me there and I don't even want to call them back now for help.

Angel,

Where are you being treated? And do you have someone with you when you see your doctors? I understand your anger in feeling like you have to do battle to get answers especially since that's energy you should be using to fight your cancer.

Depending on where you're being treated, there might be a patient liaison that you can speak to. Can you have a friend call and ask?

Margaret. In Feb.08 I lost my husband. Last Feb. 07 I lost my best friend. My son gets angry because he is afraid to loose me even though he won't say anything about it but I can tell it in his voice he is afraid and that is turning into worry and anger for him. He wants to help me so much. I have 3 grandchildren of which 2 are special needs. I raised them most of their life but my son has them now and he is great father. He is my inspiration and my only child (he is 39 years old). I was 17 when I had him. I am one of the luckiest of all mothers to have such a wonderful son but he knows nothing about this disease. He is there for me in every way and would ask anything for me but if they don't answer his questions it will set him off and he will most definately get rude if he is gotten rude with. Like the Dr. wanted to send me home to early from the hospital and I couldn't even swallow my meds or even a drink of water and he told the Dr. under no surcumstances would he allow that to happen. Well they kept me 2 more days due to heart problems and not being able to swallow my meds after surgery. But now the Doctor got mad amd won't even speak to him period because he disagreed with the Dr. To answer your question I am being treated in Rome, Ga. at Floyd Medical Center. I am going to try to talk with the cancer navagators as I called just now and they do have a case worker. As usual, they are gone for the rest of the day! (Their favorite excuse not to do anything). I didn't say anything and I will call back again tomorrow. Angel Gotta go get a thyroid biopsy done now so I appreciate your letting me vent some. Thanks you, Angel

Angel,

Vent all you need! And good luck today - I'll be sending up some prayers for you.

- Margaret

Clearly, as a patient you have the right to know what is going on.
But also consider this, if you are at the receiving end it it surprising how much info may get lost/selective hearing. This is not the most rational of times. Being combative should only be used extremely sparingly and not as the regular mode of interaction with the physician/staff. If it is then you better change the physician, how can there be trust otherwise.

I have been dealing with a fair number of different physicians, nurses and technicians both in Atlanta but also at smaller locations. None of them were rude in any way. To some extent it also depends of the approach the patient is taking.

M

There should be a social worker in the Hospital. All of the Hospitals here in the Ohio Valley area have at least one person for this job. I have yet to meet one that isn't understasnding and caring. Ask one of the nurses about a social worker.

Angel:

There is some excellent advice here. Most of all you, are your best advocate. Remember, squeaky wheel gets the grease! Don't be afraid to ask as many questions as you feel necassary.

Support groups are a fantastic resource as well. Here in Phoenix, I am lucky to have SPOHNC. Support People with Oral Head and Neck Cancer. A wonderful organization that meets every third Thirsday of the month. The facilitors are RN's who are survivors of oral cancer. One of them at 7 years!

Another resource is a new book titled "Meeting The Challenges of Oral and Head and Neck Cancer a Surviors Guide" by Nancy Leupold and James Sciubba. It is an incredible book discussing everything from issues with Chemo and Radiation to insurance issues, swallowing disorders and social securtiy disability.

My thoughts and prayers go out to you Angel. God Bless you and may you be victorious in your fight against this terrible disease.

Jim,

You really think you over did it? If not, I've got a garden up north that needs some work.

Jerry

Thank you all for your responces. Someone has helped me find a place for a second opinion. I am so excited. Two heads are always better than one for sure. As far as my ENT is concerned, he is an excellent surgeon as I am a high risk patient. My only problem is I want my questions answered and to be an informed patient and am given the option to be a part of the decision making in my case. As I am the one person who will have to live/or die with what is done/or not done. I feel good about the information you folks have given me and helping open my mind to many things. Thank you and Bless you all, Angel