1st Alex- my husband has a couple of problems with swallowing. 1- his tongue is sewn to the floor of his mouth and thus he has very little control over it. 2- All but 4 upper front teeth were removed during his surgery so he can't chew. We try to avoid any food that can't be swallowed in small bites and go down smoothly. Your Dad will need to be very careful not to eat something that could choke him. Offer lots of pastas,cooked very soft veggies, rice maybe[altho John has trouble with rice getting lost in his mouth]lots of gravy and sauces.

Nelie, I fixed the onion, garlic soup yesterday. Everyone[John, my 36 yr old son,and my 14 yr old grandson] liked it. Thank you. Tonite I cooked a risotto [with Aborio rice and peas] and chicken wings and mushrooms, browned in olive oil,then simmered in chicken stock and Campbells Cream Chicken gravy for about 45 min. The meat was so tender that John ate about 6 wings. The food he can eat WITH NO TROUBLE

1st Alex- my husband has a couple of problems with swallowing. 1- his tongue is sewn to the floor of his mouth and thus he has very little control over it. 2- All but 4 upper front teeth were removed during his surgery so he can't chew. We try to avoid any food that can't be swallowed in small bites and go down smoothly. Your Dad will need to be very careful not to eat something that could choke him. Offer lots of pastas,cooked very soft veggies, rice maybe[altho John has trouble with rice getting lost in his mouth]lots of gravy and sauces.

Nelie, I fixed the onion, garlic soup yesterday. Everyone[John, my 36 yr old son,and my 14 yr old grandson] liked it. Thank you. Tonite I cooked a risotto [with Aborio rice and peas] and chicken wings and mushrooms, browned in olive oil,then simmered in chicken stock and Campbells Cream Chicken gravy for about 45 min. The meat was so tender that John ate about 6 wings. The food he can eat WITH NO TROUBLE

oops- hit the wrong button- the food he can eat with no trouble is ANGEL HAIR Pasta, plain with butter or any kind of sauce I make. He wants to put the left over onion-garlic soup over it tomorrow Hang in there. Amy

This is very interesting dialogue.

I am 2 weeks out from radiation, and can't eat or swallow any food or drink.

Not really from pain, but from the wierd textures and tastes.

I know that sounds whimpy, and I guess if I didn't have the PEG to fall back on, I might force myself more.

Today, I tried some pretty bland scrambled eggs and could only take one small tasteless bite. These used to be one of my favorite breakfasts.

In fact, everything I loved is all I dream about.

I tried some icecream shake yesterday, and again, only one tiny sip and couldn't do anymore.

I can't explain it.

Normally, (3 months ago) I could eat almost an entire pizza by myself. Today, although I crave pizza, and everything I love (in-fact I dream about food all night long!!!), but I can't even eat more than one bite.

It's like a cruel joke.

Now, some questions for you Nellie.

Are you still (or were you ever) using the salt/soda rinse...?

Is the food related pain temperature sensative? I know the cold seems to help...Does warm? (Like tea, etc.?)

I had pretty good pain too like you describe after my surgery, and the only thing that helped was those do it yourself teeth guards at the drugstore.

I followed the instructions to mold it to my mouth, wore it a few hours and got instant relief. It might be worth a shot, since you may have a sharp tooth or other irritation rubbing the sore spot and keeping it from ever healing.

I went through the Oxycondone withdrawl too about 2 weeks ago...Same symptoms you had.

Good luck and please keep us all posted on your progress!!

Michael,
Please be careful about what you eat. I also craved real food and still want to eat it so badly. I craved it so much that I didn't care how much it hurt for me to eat it then to have it scrape my throat and make it so sore that I didn't want to eat and would have to rely on the PEG.

That is why I am taking it a lot slower now because I wanted so badly to get the PEG removed. Not that having the peg was a bad thing it was a life saver but I had it for 7 months and I felt that I really needed to take a step. If things were not improving I would not have taken it out but I do see a difference when I look back.

Food still gets stuck in my throat while eating but not as much. Now it is only small pieces that once in a while that get stuck and come back up later when I cough.

just take your time, be patient, and keep posting. We all like to keep up with how everyone is doing and it sounds like you are getting better.

Take care and both you and Seth are in my prayers.
Love
Terry

Michael --

Barry uses salt and soda rinses a number of times a day -- his dental onc. actually said "if you can do it 1000 times a day, do it <gr>" -- finds it really helps clear his mouth and refresh. Onc says helps clear up mucositis as well. Barry also uses GelClair as a rinse to coat sore areas; the same company (GUM) makes an over-the-counter version called Rincinol which isn't as strong but contains same soothing ingredients.

Barry of course has no choice on eating since his PEG fell out and Hopkins opted not to replace as he was almost through treatment, in a way this has been good -- to him "food is medicine" and he eats it whether it tastes like much or not. In another way, it was too bad as no one anticipated the two infections he came down with (which got him into hospital) and there he found the food hard to take, too spicy, not smooth enough, etc. and he lost weight in both stays, going from only 2 pounds below weight at dx to 10 pounds down. The ability to supplement would have helped then.

Nelie is right, watch what you eat -- avoid things with gritty texture, large solid lumps, etc. but try to eat even if it tastes like *nothing* as your throat needs the exercise, Whether you will be able to do this without pain relief, I am not sure -- Barry has to use it to eat and his ENT had to as well when she was being radiated (with no PEG). His ENT told him to eat bland smooth things and to use lots of water (Barry prefers 1:1 diluted mango juice) to wash down to avoid getting stuck in throat.

Barry cannot eat anything that is too cold or too warm, just room temperature. Hot especially is a no-no. Too cold makes him cough as it goes down. But everyone is different, I know many say very cold helps.

You may wish to think about supplementation with zinc, which is supposed to help taste return more quickly. I am not sure in what manner -- can you take tablets? Barry is going to start using this, although he can taste some things and in fact, never lost his taste completely (thanks to tomo, front of tongue got little radiation). You may be the same, try sips or nibbles of various things to "test"-- Barry can taste mango, strawberry, coffee (faint), vanilla, salt (this taste is supposed to return early-on), sugar (he never lost ability to taste sweet), and some chocolate. But most stuff just tastes bland and vaguely salty, but it is definitely improving but slowly.

Keep on plugging away -- this is not a quick process --

Best wishes to you and Seth,
Gail and Barry

Micheal,

Two weeks out from rad I was in the same place you are. It just takes time--things will get better. And I know what you mean about craving all sorts of things. I was at this college event a couple of days ago, that I had been involved in planning from the inception, and it was held at a local place known widely for the delicious meals they serve at events --especially their scrumptious desserts. At lunchtime, I had to go into this little room where I could shut the door, and feed myself a can of jevity. Then I came out and sat with some friends while they ate everything in sight. It was frustrating. What I do sometimes at home with my husband is take great big "smell bites" of whatever he's having (and yes, this does involve sticking my nose practically in his plate). Until you are able to eat again, you'd be surprised how satisfying aroma alone can be as a substitute. Try it. What we sense as flavor in the mouth is largely composed of aromas anyway. I think this is a lesson I'll take with me even after I'm able to eat again and maybe it will help me control my weight when that becomes an issue again (which I actually hope it will--never thought I'd say that).

But I will echo what Terry says about being a little careful. I tried some stuff early one (about 3 weeks out) that tasted so bad and hurt my mouth so much that it amde me not want to try anything else (except iced green tea) for about a month. In fact, I think that not being careful with some of my earlier experiecnes made it harder for me to try later--almost liike a learned aversion to trying to put stuff in my mouth--eventhough I had all sorts of cravings for food still.

As for the salt/soda rinse question, I used it constantly (probably every 10-15 minutes) during adn right after treatment and I still use it a few times a day. It's the only thing that has enver bothered my mouth.

Today I'm going to try some angelhair pasta, thanks for the suggestion, Amy.

I also got new medication for thrush yesterday from my ENT--because I thought I saw a patch in my mouth and I want to catch it before it gets bad. They are little tablets that are supposed to dissolve in your mouth--I try to rinse or brush my teeth right before so my mouth is moist. I have to take them 5 times a day and they taste *terrible* and take about 15 minutes (in my dry mouth) to actually dissolve. But this is day 2 of taking them and I notice the painful spot in my throat is much reduced--which says to me it was probably due to thrush all along that never got fully treated. So hopefully this will help in the long term.

Nelie,
Instead of dissolving the tablet in your poor dry mouth, what if you dissolved the tablet in a very small amount (maybe a teaspoon or two) of warm water or saline first, then held it in your mouth and swished it around. Would that work?

Andrea

Andrea, I don't know if it would work as well--its definitely an idea to try, though, if my mouth feels just too dry to do another one (5 a day is a LOT--at 15 minutes apiece that is over an hor of sucking on these things every day.....)

thanks for the good wishes Terry.

I DID eat a teeny bit today, so maybe I'm SLOWLY making a little progress.

Nellie, keep us posted on your journey too