Kim and Donna,
I had problem similar to you, Kim. My computer at home crashed and I haven't been able to come here for 4 days....hard to take!!
Re: the PEG , mine is attached with that weak little white tape that they use at the hospital. I constantly change the tape since it gets weak when I shower. But for the most part the thing stays in place. Regarding the mucous at night: I have found that using my little suction machine next to the bed is an improvement over when I used to go through a box of Kleenex at night.

I did have a barium swallow yesterday...the therapist said that I did really well swallowing and that I should start trying to eat more. Funny how I am so comfortable with the PEG and kind of scared of eating! So yesterday I started with a can of chocolate boost...I took one sip and it kind of burned my tongue and I did not like it. So much for that. I tried pudding last week with similar results and not much better with apple sauce...Perhaps next I'll try oatmeal or scramble a soft egg. This stuff should not be so hard, but darn it, it is! I still have a lot of mucous and that makes it difficult too.
I also saw the dentist yesterday and he thinks that I should starty weaning myself from the Duralgesic 75. I started to go down to 50 and then 25 a couple of weeks back but the radiation oncologist encouraged me to keep a high dose. The thing is that I can nod off into a doze so easily while sitting around and I am pretty sure that it must be caused from the narcotics.
Anyway, my stomach may not be a six pack, but ain't no blob of jello neither!

Thanks for your interest and best luck to anyone,

Danny

Danny........Just a thought. How about trying some foods that are not milk based, or do not have any milk at all. I know when my mouth was full of mucous the last thing I wanted was anything creamy or milky. During RAD I ate a lot of cold watermellon, minus seeds of course, and a lot of canalope. It was full of water and slid right down plus the cold felt good in my mouth. I also ate a lot of poached fish with butter. Try the scramble eggs without the addition of milk. Just trying to remember what I ate at the very beginning. Glad the swallow test went well. Continued success with your eating. Slowly but surely you'll get it back, I promise! Keep us posted. Sincerely, Donna

Hey, Danny, glad you are back-I was getting worried about you!

I'll be back with a longer post later. I'm still having trouble with my AOL but can get on thru internet explorer using Dave's name-strange!

Kim

Donna,
I just returned from the grocery store with a little cantaloupe and seedless watermelon. The cantaloupe burned a little, but the watermelon was a small success. I was able to eat some and it did not taste too bad. Strange how something like chewing and swallowing, which you have done since infancy, can feel so strange and foreign. Thanks for the suggestion.
I saw radiation onc. today and he scoped me ( ugh!) and said that my epiglotis, where the tumor was located is still a little sore, but he does want me to start eating some, and agreed that I should decrease dosage of the patch down to 50, which I have done.
Funny how some days are just better than others. I did not feel good today, and went to the hospital for my appointment, which was actually scheduled for tomorrow!! The doc was nice enough to see me today, and ,
as usual had a young " fellow " following him around. The cheery young guy asked me..." how has it been since September?" I said, " September, when treatment finished...it sucked!!"
Perhaps tomorrow will be better for all of us.

Danny

Hi Danny:

Small steps-you need to walk before you run. I'm really proud of you for trying to eat! I don't know any good melon jokes, but if I did, I'd send one your way!

You will be okay tapering the Duragesic-trust your body to let you know.

Dave had his chest and abd. scans today-I'm really scared of potential results but trying not to become overanxious.

The thing that is hardest for Dave this week is how painful it is to speak. Seems everything is an effort.

Keep up the progress & I'm pulling for you,

Kim

Danny.. just wanted to let you know of a tape that we have sent out to patients who are long term IV users, it's called Hy-Tape. It's a pink fleshy colored waterproof tape that's really pretty good..I'll try to find out manufacturer when I go in to work on Monday. On the food issue, I found good results with the watermelon also (put it in the food chopper at first when mouth was real bad) then moved on to honeydew,cantalope and peaches.. anything really juicy and cold I was game for!

Hope today finds you feeling better!

Julie

Kim, My story is just about 6 weeks ahead of yours. My husband started his radiation for tonsil cancer in early July and finished at the end of August. The two weeks following the end of radiation were very hard for both of us. I don't have to go into all of the gorey details, because you are well aware of them. Then,on Oct. 9th, just when he was starting to feel better he went in for his modified, radical neck surgery and that did him in again. Any way, he is now eating everything. He is still losing weight and he still has discomfort ( a step down from pain). He is back working full time. I tell you all this because I want you to know that there is light at the end of the tunnel. By the way we live on Cape Cod and he has received the best, most up to date treatment from some really informed MDs. I am a nurse like you and Dave and that doesn't help. Keep the faith and soon you will be tellilng some one else that the worst is behind you. LM

Hey, you`re right, being a nurse, like Packer and me, sometimes, seems to make matters worse.........we know the worst case scenerio.....and beyond..........Dee