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.