Me too Pete. I was wondering the other day why someone has not came up with that yet. It is difficult to explain to people that I can not eat a lot of things due to the flap. It's not their fault, but as soon as I mentioned taking some foods by mouth they all think that I can have a whopper or something I guess. At a church dinner last night they had a buffet, but I had cream of celery soup. It was very uncomfortable for me to have people almost try to force different foods on me when I can not eat. It was also hard because people want to talk to you and expect answers while you are eating and I have not reached the point where I can do that. If I open my mouth while eating, I wear my food. I don't think I will attend another dinner for awhile.

Patty

I just smile, make a wait a minute gesture and keep on moving the food to the back -- I found I was essentially putting more food in to help push the previous food to the back for swallowing and even if I stopped putting food in, it took a while to clear the pipeline -- Besides, it's not polite to talk with your mouth full!

Personally, I don't let other people's manners and habits dictate what I do -- Just because they don't understand doesn't mean it's time for me to be embarrassed and leave or stay home -- I have enough problems of my own without being responsible for those of others -- I'll let their mothers deal with that and merely offer silent forgiveness

Depending on who it is, if it is a small party of friends, I will explain up front that I can either talk or eat, but not do both -- Or I might, when my mouth is finally empty, say that it takes that long for me to deal with a mouthful of food and they will have to be patient and understanding with me (the latter puts the ball back in their court, manners-wise).

With friends, I had learned to kind of push the food to one side and talk around it, but that only works for solid food, not soups and stuf like that.

That's all based on my first flap -- Now that the second one has partially failed, across the front and down one side, I don't know how it will all eventually work because now I have less tongue and mobility than before plus I have this rather large empty space that food will fall into and be difficult to move to to my swallower -- I see a lot of table liquid in my future!

Or maybe I can just stash the food in the empty space to talk around it...

Hey,
I had jaw removal and trach and disection. I can answer questions
and I think most people do much better than I did. But, I am doing
better than anyone expected. I think I have a lisp, but my speech therapist cannot hear it? She says there is a name for it. When I leave myself a message on the answering machine, I don't hear the lisp either! The trach was the worst for me because it kept cloggin g up and I was too out of it on drugs to know what was going on at the time. But I am good now!! Alive and well after 2 years. I just must take it a day at a time. I just graduated from and exam every 2 months to every 3 months.
Please pm me if you wish.
Take care!
Debbie

It is so helpful to me to hear from people like you Debbie and Pete that have similar situations to mine. Pete I think you may have missed your calling as a therapist or some similar profession because your statements cause me to stop and think whether what I am worried about is really my problem or not. Thank you.

Patty

Eating in public isnt an easy thing after OC. It is an acquired skill that we learn thru trial and error. I will go to restaurants and just hope I have a nice waitress who is willing to work with me. My next hope is that there will be something on the menu that I am able to eat. Ususally most waitresses are happy to accomodate my unusual requests. I just explain that I have alot of eating problems so eat a little differently. Talking and eating arent something I can do either, I must concentrate on eating or will choke.

As far as talking goes, I think we hear our misprounced words more easily than someone else would. Sometimes my speech isnt perfect but others dont seem to notice. My job is doing customer service over the phone, so my speech is very important.

We are all our own worst enemies when it comes to the perception of ourselves. After battling oral cancer, having a few leftover annoyances should be easy to overcome.

Charm, if you need any pointers about using the PEG, let me know. I had a hard time adjusting to mine, so Im full of tricks to make it work. Ask for the feeding machine so you can do overnight feedings, its so much easier. You can get alot of yoru nutrition in while you sleep and not have to push so much during the day to get the proper nutrition. When do you get the PEG?

Well I was hoping that the PEG would be on the first of Never. Seriously, don't know and will have to ask but since nothing scheduled except mtg oral surgeon thursday the 12th, and RO on the 19th and surgery the 26th - assume it will be once I am in the hospital. Funny my "cancer dentist" called today and recounted patients he sees who have had similar surgery and are doing well in both speech and eating. Good to hear of success stories.

This time around I am not having much trouble taking the food at a higher rate -- However, when I first set up with the company providing the food and accessories, the dietitian made it clear that medicare would have to have a reason for the pump in order to provide and supply one (I already have my own because I bought it on EBay, but the bags with tubes [aka pump sets] are supposed to be changed daily (although in a pinch I would recycle them by rinsing well with a saline solution as soon as I was done feeding) so I said that I had been having problems that were only fixed by a steady slow feed which I couldn't accomplish with a 60cc syringe and needed the sets for the pump (The sets can also be used for gravity feed because they have the little roller clamp adjustment gizmo on them) -- I don't know what they cost, but I doubt they are giving them away.

Since the pump is a Kangaroo brand, the sets could also be called 'Roo Pouches!

I did find, during my post-radiation recovery, that one reason for my anorexia and weight loss was that I was avoiding and short-cutting the food intake because it was such a fuss -- I was putting the 60cc syringe on the PEG and then pouring the food (I was using both the Safeway and WalMart versions of Ensure as my food -- I was paying for it myself) -- If my concentration slipped, so would the syringe and then there'd be a small mess to clean up.

Note: Cleanup of the food should NOT be put off, esp on fabric or carpet -- Best thing seems to be a thick paste of powdered laundry detergent with enzymes and water to actually eat the food.

Also, I was getting bored -- At the urging of a friend, I had moved out of my small RV trailer (didn't have a full toilet, just a porta-pottie which I would have to drag to a marina for emptying) into a small rental house -- It had basic cable TV, so I would stand or sit and watch while gravity did its thing.

It wasn't until near the end of my stay there that I realized I could adjust the PEG for better flow by both turning it and also by pushing it in more -- Prior to that, I had just been alternating sitting and standing, where sitting actually flowed better.

After my first free flap (BTW, friend and I were looking at the shark-bite site on my wrist and he remarked, not having seen it in a while, that it was really blending in with the rest of my arm and not as noticeable as it had been; I wasn't noticing it because I saw it everyday, so it always seemed the same), the feeding was not going well in part because the second PEG was so much smaller that I couldn't get free or gravity flow and had to actually pump the food with the plunger, which was getting hard to do as the plunger would gradually start to bind up and my relatively new shark-bite wasn't helping any. That's when I decided to get the pump.

I kept the second PEG after I removed it for the final time (no balloon, it just slid out) and after I got my gastro-Doc to install PEG number three (He said he has had to replace quite a few of the smaller kind installed at UW), I pulled some of the port 'hardware' (silicone and plastic) off the tube and, as I suspected, I was able to push the smaller one inside the larger one (I.D. on large slightly greater than O.D. on small)!!

Quite a difference when it comes to flow and no contest when it comes to washing crushed pills down inside -- The small PEG would clog INSIDE me at the exit ports, whereas the smallest points on the large one were on the outside and easily removed for cleaning if needed (which so far it hasn't been!) -- To make things worse, the small PEG has a small cord running down the inside, for some kind of adjustment, which cut the usable capacity even more. Wish I'd saved the first PEG so I could post comparative photos of each! I will do that when I remove my current trusty one!

The only saving grace about the small one is the ease of installation by the radiology dept doc -- I was in hospital when they decided to install one (I was getting food by naso-gastric tube, the one that goes in through the nose and down the back of the throat and fluids via IV) -- I walked down with aide down to rad dept where they put me on a contrast or reflective slab of some kind, gave me a local and proceeded with the installation using perhaps a fluoroscope to view the process (I could see part of the screen as he worked).

By comparison, the gastro-Doc had to give me one of the 'roofie' drugs and then shove an endoscope down my throat to mark and observe the placement. When the time comes to remove it, he will just give it a good yank and out it will come (Am seriously considering doing that myself when the time comes -- We will see). Having the PEG installed before the surgery meant that they didn't have to mess around with the NG tube (I REALLY didn't like my first one of those because the Doc secured it with a couple of stitches through my septum, so anytime anyone touched it, pain followed).