Dear JMTLC, My John hates the "after effect" of his 2Cal nutrient through the Peg. He burps alot too,[but he also refuses to put the liquid Pepsid thru the tube as instructed.] If you feel that your John isn't getting enough liquid, start getting him to take Gatoraide either orally or thru the Peg to keep him from getting dehydrated. This is a serious problem. We had a crisis not long ago because John , altho drinking lots of water, was not getting the electrolytes he needed.
Gatoraide [or Pedialite} helps a bunch. This is really a frustrating time for him and you. It's hard to be this sick and it's hard to see someone you love suffer. I must say I envy your training. I have felt so over my head and out of my element since our journey with this illness began. Hang in there! Amy

I had XRT, no chemo, and froze from about the 9th treatment on. I still had energy but because I was so cold I decided it was easier to go to bed and hope this 6 weeks went away. I strongly believe this was the wrong move. I started radiation in early October so weather was still nice. Drove myself to appt at 8:30am, had PT 2 days a week at 10 and then went home to sleep. If I had gone out and done some yard work or taken a walk around the neighborhood or gotten some exercise, I might have felt better. I think my reaction to not feeling myself was 'let's sleep through this and it will go away'. My problem was I just couldn't get warm once I got home and went to nap, no matter how many clothes, blankets etc. I put on. I think if I had kept moving after my treatments in am, I might have been better off. Just one man's experience.

Take care,
Eileen

John lost 8 lbs in a week (only week 2 of radiation)! We're starting on Reglan today and continuous Peg feedings at night. We're trying to go out each day for a walk or errand. He sleeps a bit - it amazes me how little time he has to actually eat between treatment and sleep so the night feedings may be just what he needs. I really appreciate everyone's comments. I can't imagine how anyone could go through this alone. He's really sad now realizing how changed he is and that he really won't be able to teach for awhile. Life is really weird - zigging and zagging. My new best friend is our Medic pharmacist.

Janet, do you have narcotics for when the radiation pain starts? I advise getting these asap. On one day, my dad was eating pizza. The next day, his mouth was full of sores. This was following the 3rd week of radiation. Seriously, get on that so your hubby isn't hit like a truck like my dad. We have been in the hospital for a week (leaving today). They fixed him up! My dad has the SAME cancer. Guess what-after one chemo and 15 rad treatments, the ENT couldn't even measure the tumor! We can barely feel it anymore! So, what I am here to tell you is that for us, it went from okay to ummmmm...hell overnight. Today, my dad is laughing, talking, walking, drinking---happy. The key is pain control. Fentanyl patch and liquid oxycontin for the tube. Tell your hubby he is lucky that he has the tube so early. My dad spent all of his waking moments trying to force calories and pills in. Now, he's happy.
Don't hesitate to contact me if you have ?'s.
Shawna from Minne SNOW ta.

Just a quick thank you to everyone on this forum. Last radiation treatment done today! Time really did pass and we got through it! Who knows what tomorrow will bring but today we celebrate.
Thank you one and all - a fine band of supportive people who help make sense of it all and even make it interesting.
Peace and all good things,
Janet