Rex has his follow up appt tomorrow with all the drs. I am really kind of scared and not sure what to expect. I know that we have had a lot ups and downs during this entire ordeal. I thought that treatment would be done and he would be better. That's not the case at all. He is still so tired and in pain. He sleeps alot. Now he has to sleep sitting up or he feels like he is chocking, so I am sleeping on the floor.
We have been to the emergency room do to the problem with breathing. He says that everything sits in his chest.
He is allowed to have water but nothing else by mouth. He is on his feeding tube. I am in hopes tomorrow they will let him start eating. Not sure how quickly that starts.
Thanks
Pat

Oof, Pat... I think I'll get 100% consensus when I say that finishing treatment is absolutely NOT the beginning of being better. For most of us, its the beginning of feeling worse! Radiation is cumiliative so the worst effects don't happen until its over.

As far as eating, is there a reason he can't take more than water by mouth? Also, is he doing any sort of stretching exercises for his jaw muscles? Those are very, very important!

One more thing, from your signature line, there is no such thing as 'routine' surgery. That is, it might be routine for the doctor, but it sure isn't routine for the patient or his or her family! I sure hope the appointment tomorrow goes well. I suspect the docs will do a thorough exam of your husband's mouth and throat, possibly with the scope, and they'll want to know generally how he's doing and feeling. It should be pretty 'routine.'

- Margaret

Why is he not trying to eat whatever he feels like? Did his docs say not to eat by mouth? That would be unusual.

As Margaret says the first few weeks post Tx are usually by far the worst for most of us and also remember that his recovery will be very slow lasting the better part of 2 years. For me I didn't think I was going to live until the 3rd week post Tx. I called it "finally walking out of a dark tunnel". Even then I had more bad days than good ones and slowly the good days began to out number the bad days until eventually the bad days went away but this was months after my Tx had ended. I felt as weak as a new born kitten for a long time but again slowly all will return to an almost pre normal state. My taste and saliva took 15 months before I was satisfied and now I guess I'm around 90 to 95% pre normal.

Another very important thing to keep in mind is that we all can react differently so tell him he will recover at his own pace but I do know that I felt better when I was consuming at least 3000 calories a day.

Margaret,
What I meant by routine surgery is they didn't know when they were going to do the surgery he had cancer. They thought it was a cyst. Will you help me to word that differently?
I wasn't sure how to put that in there.
Dah for me
Pat

Oh wow, Pat, I totally misunderstood! Duh for me **blushing**

Maybe you could say,

Crgvr to Husband 55-yrs, surgery to remove cyst-diagnosed as SCC, 4/3/09

Rex had his swallowing test today and he is now allowed to eat some soft foods. Jello, soup, smashed fruits. That's a good deal for him and a big deal. They were very pleased at his progress in healing and told him he was doing a good job of taking care of himself. His potsassium was low so they upped that dose, they told him however to continue taking all meds throug the tube and not to take by mouth.
We go back in a month to the medical onocologist.

Great news.

That is wonderful news!! I'm so happy to hear Rex can start eating some soft foods. I love to hear the good news:)

Fantastic news! Smashed bananas are full of potassium! Yum.