Oh David!!!! Dont scare the poor guy so much. These are all side effects that are annoying and uncomfortable and yes, normal. It can get difficult but you will get thru this. Looking back it was only a few months of my life that I felt crappy and miserable.

Just remember to keep up your nutrition with minimun 48 oz water and 2500 calories daily. Getting more is even better. The better your nutrition, the easier it will be to get thru this. Make sure even with the feeding tube you continue to swallow daily. Even if it means taking small sips of water all day til you get the whole bottle down. Some members would put the bottles they needed to drink on their kitchen counter and when they were gone then you knew you drank enough that day. Keep eating as long as you possibly can, try your best to eat thru the whole thing. Chewing and swallowing are things that your muscles can forget how to do if they arent used.

If you havent started this yet, its ok. Make sure you do stretching exercises for your mouth several times per day. Open your mouth as wide as possible and hold it open for a few seconds. This is very important so you can avoid trismus. Thats where you can barely open your mouth.

Let me know if you need any pointers about using the peg tube. Im full of tricks to make it easier. The peg tube is an easy way to get additional water too. Just add an extra can or two of water to your formula. I always mix mine with some high protein powder, that helps healing.

Hang in there. It will get difficult but we are here and will guide you thru this.


Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile