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!