Hi John,
Kevin had a lot of what you are going through and just progressively got worse. Same stuff just worse. You will probably have tons of phlegm to be dealing with soon too. It's very thick and gaggy, but there are many remedies to help with it. If you aren't pro-active several times a day with rinses though, it will be tough. Kevin gargled with salt water (after the magic mouthwash), then an hour later he would do a half peroxide/half water rinse. That's wierd because it bubbles like crazy. I have heard MANY other things people have done, but will let others comment on those. They also have suction machines you can use at home.
Once the phlegm gets better the dry mouth sets in. You will want to have a beverage handy at all times. Especially next to the bed at night.
Kevin also got quite severe radiation burns on the outside of his neck. It was very gross for a couple of weeks. If this happens get an antibiotic cream called Silvadene (sp). It worked wonders.
Do you have any disability through your work? I would look into the FML too. How is your boss being now? Hope she's not being a jerk still.
Keep eating and drinking. Try scrambled eggs. Kevin ate those every morning because they slid down easily. Pasta with lots of butter worked very well too and will give you some fat. He drank tons of Ensure and tons of water. Hydrate John...hydrate, hydrate, hydrate!!
I know you may not realize this, but it seems you are doing great. You are still eating/ drinking on your own and really with minimal pain meds. You may have to get out the big guns soon. Kevin took Lortab. It is a liquid and worked almost immediately for pain. He would take that and the magic mouthwash and chug down some nutrition several times a day. He tried stronger things like the Fentynal patch, but they made him really angry. Never used a feeding tube. Well, I won't say never...he tried it a few times with some of the formula, but HATED it and refused to use it!! He did put the Diflucan in the tube though because it tasted so nasty. He took this along with radiation to prevent thrush. He also did a stool softener liquid in the feeding tube for the same reason. (taste)
Hang tough John. You will turn a corner for the worse yes, but then you'll know in a month or so after treatment you'll turn a corner again. Everyone I know wishes they could have just been in a coma the last week of radiation and the next 3-4 weeks!! You're not alone in that.
When I read your last post I wanted to reassure you that everyone on here KNOWS EXACTLY how you are feeling and have been there. Honest. For me I was watching Kevin, but I felt it right along with him as I sat helplessly by.
Hang in there...you can do it and we are here for support!
Blessings,
Kathy