Hi Micael --

Even if it tastes bad, try to swallow something -- some people find the lightly fruit-flavored waters now available are OK -- or try a variety of spring waters to see if one is "doable" -- our ENT says she has folks months out of treatment who cannot swallow anything because they stopped for too long (she 's the one who had radiation herself and knows what it means to struggle with the side effects)

One apparent advantage of the tomo machine -- Barry never lost the sense of taste at the front of his tongue so he could taste certain things throughout -- certain fruits (strawberry, mango), chocolate (but it had to be "real" chocolate), chicken soup etc. -- but all a lot fainter than normal. Today he had some coffee and could taste it and says he can now taste further back on his tongue. However a lot of stuff still has very little taste or a greasy taste. A slo-o-o-w process!

Michael, John and Barry all finished at the same time and have a way to go to work their way back up the curve...

Best,
Gail

Hi Michael, have you tried ice cream or sherbet? You really do need to find some things you can tolerate by mouth. Keep resting -John slept most of the time for over 6 weeks during and after Rad.
Kep your chin up. Amy

Maybe tomorrow I'll try a shake or something...Just hate to increase the phlegm with any dairy products..?

Thanks

Michael,
My mom has to regularly see her dermatologist (every 2 months) because after the radiation she has developed SCC in various spots that the radiation was given. The spots come up as crusty reddish color tags on her skin. They are a pain but they assure her they are not a recurrance from her cancer but a new skin cancer all on its own. My mom is blonde hair blue eyes and has spent many years in the sun so this cancer may have come out at any time but the radiation really brought it out. Just check with your dermatologist when you have a chance. I'm so happy that you have finished treatment. Things will only get better from here!
Hugs,
Dani

Hi Michael --

Are you taking Mucinex tablets? This has really been a god-send to Barry, especially when he had that chest infection and was being overwhelmed with nasty deep chest phelgm (on top of the radiation-induced mucous and throat phelgm). He stll takes them as they help wih the latter and he still has some infection-related stuff tho the most recent blood culture was clear (just residual gunk, like after a bad cold or flu).

If dairy products induce more phelgm (something Barry noticed for a while but not now, maybe because of the Mucinex) try Jello or blended canned fruit, or fruit nectar. Barry says to try the mango nectar as it is least likely to burn and 8 oz. are 140 calories. If it burns your throat, dilute it with spring water. Drink things at room temperature.

Also, try some very soft scrambled eggs -- Barry's up maikng his today, he uses olive oil and whole milk, and also sprinkles in shredded cheddar cheese. Use soy milk if dairy is a problem. These are extra-large organic eggs with omega-3 fatty acids so are not too unhealthy! Use lots of water or juice to get down if you have to --

Good luck,
Gail and Barry

my taste buds are totally shot!

Everything tastes like dog crap...my mouth is so gross...it's like the worst morning breath on earth 24/7.

I am constantly spitting...

I find myself laying in bed all day. I'm totally and completely EXHAUSTED!!

I can barely lift my head to watch TV.

Seth is keeping me hydrated with the PEG tube, and gives me a few cans of Osmolite (like Ensure) a day.

The worst part is my emotion. I am scared to death of dying. Now that I finished treatment all I can think is that I will have a recurrance in 11 months, 18 months or even 3 years. I feel like, at best, I bought myself a few years, and that hardly no one makes it to even 10 years (i'd be 46 in 10 years)...

How does everyone cope?

Hi Michael,
Have you considered short term antidepressants? John is taking Paxil because this experience is tough, tough, tough to take and we're no heroes here, just humans trying our best to deal with this.
I am concerned about your fatigue to the point of not lifting your head. Has your sodium level been checked recently? If your electrolytes are off balance, you may experience this kind of fatigue you describe.
Please, please try to stay in the moment and not look ahead. You have enough to deal with to be present to the day ahead of you without looking ahead to what ifs, shoulds, coulds, oughttos.
I know easy for me to say - hard to do. You are so young and have a lot of living left to do. Try not to waste a minute on useless anxiety. You are needed even now on this forum to share your experience.
Take care,
Janet

You're grieving, you're tired, you're hungry and you're pissed off. Good for you, that means you are still fighting this.
Now go find a doc to order some bloodwork before you get so drained you can't get angry anymore!
And hang tough, we're all rooting for you.

Andrea

Michael,

You are supposed to be tired. I'll admit the treatment seems to have hit you harder than some, but you will be tired for a while. Myself, I did not jump up and down when treatment (the first time) ended because no one was doing anything to stop the cancer. Every day for 6 weeks I went to radiation and one day it is all over. All of the sudden I'm no longer fighting cancer! So, stop thinking about dying. You have done everything that can be done, except take that new vaccine 20 years ago, and now it is time to get on with life. If you need professional help, get it. Put this behind you and worry about the reoccurrence if it comes. I'l tell you this, in my 3 years here a lot more people are still living than not.

Glenn

Thank you Glenn. I still feel bad for not spending some quality time with you while I was in NY, but it was good to have met you and at least put faces with the names.

I am worried about you, in fact, think about you and your daughter often -- I feel like you have entered a phase of just concentrating on QOL care, Is this the case..?

Talk about hitting hard...seems like you've been HIT with it ALL!

Have you explored any (or all) novel therapies? Dr P is pretty conservative. He wouldn't use for Erbitux for me for instance.