u/ElephantAccurate7493

My husband is a year out from having chemo and radiation. At first he slept almost 20 hours a day even when the treatment ended. Now he gets up and watches television or gets on his phone watching it. That's fine. At least he's up. He's just not active. He does fall asleep sitting on the sofa daily though. Is this normal? Btw, he's been on 15 mg oxy for a year . Maybe it's the oxy?

My husband's speech therapist has him eating some. So at times he will try to eat. Then he stops. He hasn't tried eating in awhile now. Unfortunately , his speech therapist left and someone else took over. The first therapist knew when he waant being truthful about exercises and eating.. I'm not sure about the new one. The main reason that I'm concerned about his eating is that he looks like he's still losing weight. He tube feeds. Should I be concerned?

I've posted here numerous times and I appreciate all the help. Thank you all!

Just the Wife,

I'm not a caregiver. Just the wife of a patient that has posted multiple times here. Sorry! I have ONE question.

I could have posted in the caregivers group but I feel as if I need a patients perspective. Thanks in advance!

My husband has not ever used the baking soda/salt mixture more than once a day and only if I said something. (When he opens his mouth to speak there's thick mucus on his teeth and when he does speak he keeps his teeth together . If that makes any sense.) I don't say anything about the salt / soda mixture most days as I figure that he knows to use it. He's also not doing his mouth exercises and never has. That goes for the exercises that he's supposed to be doing for PT now also. He's lost quite a bit of weight and is unsteady on his feet a lot of the time. He doesn't do much of anything except watch TV or get on his phone to watch videos. His speech therapist has been working with him on eating . He eats yogurt there. He has a list of things that he is supposed to be working on eating at home. Plus, ice chips. The majority of the time he doesn't try eating. He just uses his feeding tube. His speech therapist did say that he would be much further along if he had been doing what he should have. I don't want to paint her as an ogre. She's not. She is very sympathetic to him. We had family over one weekend and grilled out. My husband made himself a hamburger! I started to say something and thought better of it. Of course he didn't eat it. This makes me think that he believes that he's going to just wake up one day and be back to where he was before his diagnosis and able to eat.

What prompted me to post was when we went for him to have surgery for his surgeon to find out why his esophagus is so red. The adult mouth pieces were way too large as he was unable to open his mouth. They tried a childs size and it was also too large. They said that under anesthesia that his mouth would relax some but they couldn't risk it in case there was an emergency. They wouldn't be able to help him since the opening to his mouth is so small. So they just have to figure out where to go from here. I'm worried about this.

Here's my question. Is it wrong of me to expect my husband to do the things that his team members ask him to do? Exercises, working on eating, (not hamburgers ) etc..

HPV + stage 1-2 ,diagnosed 13 months. ago. Finished chemo and radiation 07/25.