Thank you so much for your thoughtful replies. Stephen is on 100% tube feed right now and gets 2400 - 2700 calories a day (8 - 9 /300 calorie cans). We use the pump for over night feeds. I think he is getting better nutrition now than before DX(fussy eater). I hope and pray the dialation works...

He came off the patch about a month ago and is taking liquid oxycodone for pain. I have read some say it really wipes them out. Any other options for pain that are less potent but with sufficient pain relief? I know everyone is different but is there a ball park as to when the pain ends along with the need for meds?

Stephen has an odor to his breath and I keep on him about doing his rinses but does this mean he has an infection (it isnt thrush because the Dr saw him last week and said it wasn't and he smelled the odor as well) Is this normal during the healing process?

Kerry,
All the advice on here is excellent but varies widely. Makes it tough for you I bet. What does Stephen say? Is he still in horrible pain that is keeping him in bed all day? Is he still on heavy pain killers? Gary is correct about the fatigue, it can be debilitating, is this what is going on with Stephen? You stated that Stephen said he doesn't feel he's pushing himself enough, that is what I based my answer on. I remember reading a posting from Danny (digitex) when I had completed treatment and was spiraling into a horrible depression. Danny talked about how all he wanted to do was sit at home on rather then do anything. That was how I felt for awhile. Danny also posted how he began to take a walk every single day and how it helped. I started doing the same thing, and it did more for me then any medicine did. A good start for Stephen, I think, is to at the very least get out of the bed. Take a daily shower at a minimum, if possible, get out of the house once a day.
I hope it gets better for you soon. The reactions to treatment are so varied that it's hard to know which advice to listen to. Maybe you need to just keep trying all of them until the one that is right for Stephen shows itself.
Minnie

Minnie's advice is good. The fact is that even if Stephen were in the hospital, he'd be being pressed to get up, wash himself, get into new clothes and take walks around the floor everyday. The getting up and moving around part is just common sense. You weaken very quickly if you don't use your muscles a little everyday.

I say beyond those activities, if he needs to sleep a lot otherwise and seems to have no energy, let him be (as long as he's on an antidepressant). He probably jiust needs more time to get over the fatigue.

Nelie

Hi Kerry -
You are certainly getting a lot of advice here - that should tell you that as a patient or a caregiver, a few of us have been there. It seems that no one prepares you for the worse part of the treatment ... after the treatments stop. Think of it this way, his body is having to replace all the skin inside his throat --- repair damage to the outside (surgery &/or radiation) and this takes a lot of energy. The month of recovery for a week of radiation is about right - I've also heard (and believe) it takes 1 week of 'recovery' for every 1 day in bed.
Here's a couple of ideas: 1) consider depression a serious fact for many going through this hell. In fact, I nearly lost Ken to depression instead of the cancer. Hall his butt to the doctor (your family doctor) and talk about anti-depressants.
2) caloric intake -- Ken was switch to a Jevity with more calories which seemed to help with the energy level (remember the body is working over time to repair the damage from treatments & it needs energy)
3) Physical Therapy -- Worked wonders for Ken. At around 4 1/2 - 5 months and still not getting around very easily, Kens doc prescribed physical therapy for 4 weeks. Insurance covered the cost. The PT helped in so many ways -- A) helped range of motion & strength B) got him out of bed & into the shower C) gave him a place to go (a purpose) and D) improved his spirits by seeing positive progress with the exercises.

Keep us posted! And hang in there.
Carol

Hi Kerry, I'll throw my nickle's worth of wisdom in here too. Pain killers can be very debilitating - causing physical exhaustion and very low mood. Start backing the pain meds down and some of his energy will return.

Anti-depressants are not "one size fits all". It must be the right drug in the correct dosage to be effective. Your husband is depressed big time. Pain meds, tx recovery not withstanding, he is depressed. The drug he is on is wrong, or the dosage is wrong. He is clearly not getting benefits from it. Depression is all about total function - a sense of ambition, energy to do things, excitement about things, need of physical exercise, need for contact with family, etc. The man is depressed.

Depression is sneaky. No bones sticking out anywhere, no blood, no hacking cough. No obvious evidence that something is wrong. But, if you know what to look for, it's easy to spot. Here's the list of things to look for: 1) low mood, 2) no energy, 3) no ambition, 4) sleeps too much or too little, 5) poor self care, 6) negative / fatalistic views of things, 7) avoids family, 8) does not engage in pleasureable activities. etc.

Depression meds are NOT all alike. Each person responds differently to each medication - and to each different size dose. Your husband needs more of his drug, or he needs a different drug. Get permission to double his dosage and see if it helps him. Going through the torture of treatment was yesterday. Today he has a family and responsibility. He can do it. Be strong Tom

Tom, Thhank you so much for spelling that out for me...sometimes you can't see the forest for the trees...
We have switched him from Celexa to Zoloft and cut him pain meds in half. They also put him on an antibiotic for the possible infection in his mouth and I made him swear to me he would gargle vigorously several times a day per order MO doc.
Thanks so much for the words of wisdom everybody..I cant think how I would have made it thru this w/out everyone here...

I would also consider having a psychiatrist manage the anti-depressents since it is pretty specialized as well. If he is not in the same HMO records system then you need to bring medical records with you.

I would really question the pain meds Kerry. What kind of pain is he having now? If it's the shoulder and neck pain, the physical therapy can work wonders. My DH has been going for PT for months now and part of the therapy is massage and stretching. It really has helped him. I think once your DH is weaned away from the heavy meds completely he will have more energy. It made such a difference with my DH, when he came off those meds completely. He has been working full time for several months now. He still has his bad days, but he does push himself through those. I think my DH is older than yours and I think he feels that if he doesn't get up and going his life will too soon be over.

My DH has the odor too. It has improved, I noticed it just this week. He still can't swallow well and the swallow study last week shows we have a way to go before the J tube can be removed. He is finally able to swallow a bit of ice cream, which he enjoys everyday now.

I feel for you.