OK Folks. I need some insight and advice. As you can see from the signature, I am out of radiation and chemo treatment for 5 weeks.

I figured out more or less on my own that the burning sensation on my tongue would subside slowly. It has

I am also noticing that the long stringy phlegm/mucous is becoming less at night (I can actually sleep lying down again instead of sitting so as not to drown)

So how does recovery progress in swallowing?

I can not swallow any liquids without having to clear mucous again. And when I had the audacity of trying to take some of my pills by mouth, my throat closed up and I nearly choked to death

What is the "normal" (whatever that means) progression of returning to consuming nutrition and liquids by mouth? Does one sort of wait until an epiphany takes place and start with jello? Does the RO call up and say you can start eating again? (I still have the PEG). Does it take 3 months? 6 months? 1 year?

Consider me clueless in San Diego with very little insight obtained from an excellent medical team at UCSD. They usually told me about remedies after I had stoically put up with more than any human should experience

I didn't have a PEG and i was MADE to swallow before they would let me out of the hospital, but I sure found that swallowing was something I had to work at. When I was first released a bowl of soup would take an hour to eat, but that improves with time. I think the one thing you cannot do is avoid the chore - and it IS a chore at first. From others, I have read that your ability to swallow can be very difficult to recover if you let it go too long.

And just in case they didn't tell you, your tastes will change from time to time post radiation. For awhile everyting - including plain water - tasted salty, then it seemed everything tasted metallic, etc, etc. Taste has now pretty much returned to normal.

Donna

Hi Charlie,

I also finished my txs on November 4th. I never had a PEG, so I had to consume by mouth. I did end up in the hospital for 9 or 10 days. My throat hurt pretty bad and it was hard to swallow; although, my throat txs ended two weeks prior to my last tx on the 4th. So, my throat healed a little sooner then yours. I would say practice and that seemed to help me but I had no choice to use my mouth and throat through tx. You also probably had it a little tougher because of tonsil cancer. My mouth and tonsils are very sore yet, especailly my tongue. If I sneeze I want to SCREAM. Baby steps...baby steps...next week you'll feel better then this week & so on.

Charlie,

I had my tube for about 9 months. It was my sole source of food for a good month or so. Then slowly I believe 3 or 4 mo. I tried eating what ever I could. Jell-o, oatmeal, scrambled eggs. The process is slow, but just try little bit at a time. You can also try baby food and see if that will work for you.

Also I would Drink water, and canned liquid meals. The main thing here is to keep your intake up and make sure you keep swallowing.!! If you find that your mouth is burning make sure you do not have a Thrush. If so get Nystatin.

Hope some of this is helpful for you. Take Care.. Diane

Baby steps. I didn't have the Peg and I really didn't have any swallowing problems for which I am thankful but I wasn't able to start off by eating a thick cheeseburger either. I started by trying mashed potatoes w/ gravy and fruit cocktail and soups and mac and cheese. If whatever you try is not comfortable then try something else but do keep trying unless of course your doctors say otherwise.

Here's a good book "Easy-to-Swallow Easy-to-Chew Cookbook" available from Amazon along with a lot of good books like this one -- Don't forget to access Amazon through the Button on the main OCF page.

Keep exercising your swallower and also keep stretching your jaw open! Advice from a specialist included doing nothing but swallowing at first (No reading, TV, other people, etc) and concentrate on it.

I had a PEG through radiation, but took medicine orally and drank lots of water.

i have a cookbook that i bought from amazon for after my surgery it is called i cannot chew or something like that ... if you think it would be of help to you, please send me a private message and send me your address there and i will be happy to send it to you at no charge.

to send a private message you click where it says my name AZCALLIN on the left of the screen and it will show and option there to send a private message.

i wish you the best.

here are some soft foods i enjoyed during recoop phase, maybe some of them would help:

oatmeal, ice cream, pudding, carnation VHC, yogurt, jello (some of them stung my mouth like strawberry and lime but others like cherry were soothing), cream of wheat, malt o meal, cream soups, mashed potatoes and gravy, milkshakes with protein powder added, smoothies, mashed yams and sweet potatoes, scrambled eggs ...

baby food i tried but then i looked and calories are too low for the work lol

i found liquids to be really hard to swallow at first, of course my surgery was different than yours and was the cause of my difficulties but i would choke easy so having something with a little consistency but not needing chewed was my best option for a bit there...

i wish you the best work those throat muscles ... no use you lose they say because the throat will quit working if you do not keep its memory of its purpose going ... so even if not swallowing food do the swallowing action for it to practice.

also if the throat continues having problems swallowing and being sore, watch for thrush ... it can cause probs too and is very common with / after treatment.