Hi everyone! hope you are all having/had a good day/night. Now tell me this if someone could please? Whys is it that "long acting slow release meds" (mscontin100mg ...im not mucking round here)only work for about an hour or two on me???...same goes for my cocaine mouthwash. AND EVERYTHING I put in my mouth stings like hell...since when did water sting? or milk? or babies custard or babie food of ANYKIND!!!? I am positive that this morning there is a centipide (Jim and Bren and the Gang from the "lumpy Saga" post will know what I mean) convention on in my mouth today. The ladies have their stilletoes on and Heaven help me I am SURE some of them are cross dressers so I get 1/2 as many more spikes! (haha) Which reminds me...IF i(and it looks possible) that i have a low pain threshold, will they keep trying to help me? I am so worried they wont 'get' me and will this Im putting it on just to get drugs! grrr (as a few of you know the muso tag isnt a good lead introdution to any new Dr) Also, I am on my way to a nose tube I fear immesly (I had one in hospotal and man it hurt like hell...the food was cold and made me feel lie throwing up and I was never full, PLUS it was that disgusting 'ensure' YUCKKKK!!...I am trying my best but this is my just under halfway point so will my tongue get twice as bad as it is now (God help me) My Tongue (it now gets a capital letter at the start of the word, like a name, as it has taken on a life of its own at this point) would EASILY get a role on the X-files...NO "Alien Versus Predator"...would be "Alien and Predator team up to take on Lyns SCARY TONGUE" ("be VERY afraid to go to sleep you never know what will be in your mouth in the morning"...or "AND YOU THINK YOU HAVE FELT PAIN????") I know it sounds like im joking...I am... its just my way of dealing with it...But seriously any food help (soothing and not stingy) would be most appreciated Peace and Love from Down Under Lyn

Lyn,

Some people have success with a mouthwash they swirl with before meals to numb the mouth and throat temporarily. It didn't work for me though. I think it was called Magic Mouthwash but don't hold me to it and it may not be called that Down Under. Nothing, pain wise, worked for me either so I just found the smallest quantity, highest calorie liquid food source and drank it down at room temp as fast as I could and went back to bed for another hour when I would down 8ozs of water at room temp and went back to bed for another hour and etc. I only had to down 4 cans of food and 4 cups of water a day and it was very tough and I didn't always do it. Of course that just made matters worse so do yourself a favor and get the food and water down the hatch every day and stop talking sooooo much about the pain. I think you're making yourself feel worse. Hell you're making me feel bad.

Hang in there. You can do this.

Lyn , I do believe you about the pain. The most I get for relief is 2 hours no matter what I take. I will say one thing, even those tapdancin lil old insects wearin spikes can't make me feel unhappy during those 2 hrs. David is right,, set your mind to ignore and do your best to think happy. not that smiling yellow guy either. Get a blue one or a color that relaxes you. I truly wish I could take your pain and let you get a break. Now now, LOL not all of it at one time. Biotene mouth wash seems to help some.

Just a thought--as a 'muso', you're probably even more conscious of your mouth than most people--that doesn't mean I'm minimizing ANYONE'S pain--haven't had rad, for me it's just the gaping hole in my jaw where the nerve is exposed.
I'm up, yet again, at 4a.m. as searing chest pain won't let me lie down and sleep. Have just had 'session' with my relaxation CD, which has helped some, and my nurse is encouraging me to go for a Fentanyl patch to keep the pain to a minimum, and has told me there will be no limit to the amount of morphine I can take--that it's not a matter of addiction, cancer patients NEED to have the pain controlled.
My favourite med for sending the men with knives to sleep for a while is Oragel Max--20% benzocaine, which means I can eat--but I do dribble a lot!!
Brenda

I just got up after trying to sleep for 2 hrs. Just the same amount of time it usually takes for the meds to wear off. Got those lil guys witha zillion legs and spikes on each one practicingtheir tap dancin going at it. LOL gonna have to get them rubber spikes

Lyn, Jim,
Do you guys by any chance have thrush? When I had thrush, everything burned my tongue including water? I also found that I could only drink certain brands of bottled water. Flat ginger ale, black coffee, apple juice, and Ensure Plus were my diet from day 9 of radiation until a few weeks after. You must stay hydrated so drink as much fluid as possible. And as David said, get as many calories per swallow as you can. This is medicine, you don't have to like the taste, just get it down. Here's hoping they find something to control your pain. I can't imagine dealing with that.

Take care,
Eileen