1 good day 5 bad ones

D Lewis said:

Welcome, Robert
And, welcome to your new normal. I have noticed, at 16 months out now, that I still have an 'impaired' swallow. The radiation damages your throat muscles, among other things, so my swallowing difficulties will probably be permanent. It takes a lot more effort to get things down. If I take too large a bite, it may take four good swallows to push it all the way down. I don't have a huge amount of mucous, but I do notice that its a challenge to clear it all out of my throat in the morning. If I have a bit of a cold or sinus issue, it's a real struggle to clear out all the crud. The mouth is dry. I keep water on a bedside table, and I still need to wet my mouth four or five times during the night. If you're sleeping through until early morning, you're doing pretty good for ten months. I do notice that some days are more 'dry' than others for me.

Don't get discouraged. From what I've heard from the veterans around here, we will continue to slowly improve for years to come. Vent away as much as you need.

Deb

sweetblood22 said:

Are you still taking the
Are you still taking the salagen or Evoxac pills? Did the mucous get worse since you started on the pills? Just curious.

I know my mucous didn't even start to get better for like 6 months, mine was bad for a long time, but apparently my severity with the mucousitis is because of my blood disorder.


Have you ever gone for a swallowing study? They have you eat and drink stuff and watch it go down or get stuck on a monitor. Maybe you need a speech pathologist to work with. They never gave me one to work with and I definitely should have. I'm not sure if it would be helpful in your case or not because I'm still not clear as to why you have so much trouble swallowing. All I can tell you, is it takes some of us longer. I didn't eat anything at all, nothing for nine months. You have been through so much, you need to cut yourself some slack. It's going to take time.

I have just accepted that I will be living on a lot of soups, and a lot of soft foods. I have just resigned myself to that fact and I embraced it, and ran with it. Instead of fighting it, I did everything I could to prepare my food so it was easier for me to swallow. Used the mini chopper, cooked foods so that they were softer, ate soft foods, a lot of soup, drank a ton of smoothies.... And slowly but surely it has improved over the last year. Yep, a whole entire year. Believe you me, I have about the patience of a saint. I still have to cook my food a bit softer, but at least it's not mush anymore, I still have to dice my veg to cook it, at least it's not minced, but it's better than last year. I have put on 15 pounds since my tube was removed. I figure I could have looked at the glass as half empty, could have looked at all the yummy stuff I couldn't eat and made myself annoyed and unhappy. Or I could be happy I finally got rid of my peg tube after 18 months and keep trying to eat a little more every day. There was honestly a point where all I ate was bananas and avocados everyday. for months. I just keep trying and hope tomorrow will be a better day, and I make something yummy I can swallow. I still have bad days where I cannot manage to eat what I made. Tonight was one of those nights. The dogs got my meat. I know a few of us that are still struggling with food, for one reason or another.

Maybe talk to your doctor about a swallowing study and swallowing exercises. Speech therapist. That's the only things I can think that can help you. I do understand your frustrations!