I can't add much to what everyone else has said. We caregivers totally get where you are. It is SO hard near the end. That is the time I found the forums as well and, like you, this is where I found my strength.
Good job today! Click the days off one at a time. Encourage him as much as he will let you and get mean when you have to. He will thank you later.
Another thing I did was sneak a letter to some of his friends and told them he was giving up and could they please email him. The next couple of days his attitude completely changed as he felt their encouragement and realized that even people outside his immediate family were rooting for him.
Please know that the next few weeks will get even harder. I hate to reiterate this, but it's the simple truth! Getting the extra fluids through the port helps tremendously!! Honestly, we thought once we were done with tx he would start getting better. It got worse for the first few weeks, then improved daily from there.
The burns will probably get much worse. Just keep up the Silvadene. Kevin's neck is soft as baby skin on his neck now!!
One thing our RO did was put Kevin on daily dose of Diflucan. It is was they give us women when we take an antibiotic to help fight a yeast infection. He still got the mouth sores, but it seems not as bad as some others.
Best of luck the next few weeks. Please know you will be in our thoughts and prayers. Several of us watch the posts daily, and actually several times a day, so vent when you need to, we understand.
Blessings,
Kathy


Kathy wife/caregiver to:
Kevin age:53
Dx 7/15/11
HPV16+ SCC Stage IV BOT/R
Non smoker, casual drinker
7/27/11 Cistplatin, taxotere,5FU 2/3week sessions, followed by IMRT 125cgy x 60 (2x daily) w/Erbitux weekly. Last rad 10/26/11. Last Erbitux 10/27/11
PEG placed 9/1/11 Removed 11/8/11
Clear PET 10/12 and 10/13 and ct in 6/14