I am so sick of having a peg tube. I have been finished with my treatment for six mounths now. I can eat a few items, but so many foods get sticky in my throat. Other foods sting(like all fruits and berries). And the worst part is that foods don't taste good or even "right". I don't have much of an appetite, although I crave food the way it used to be. I only weigh 96 pounds. Can anyone help with advise or sharing their own experiences?

Hi there!
I got very fed up of my peg and decided after 4 months to have it removed. The turning point was a small break in Portugal where I wasn't preparing food and the fish was really easy to eat and I thought I can eat at home like this too! My weight dropped drastically but I am glad i did it. Before I found i got lazy with food and if eating was too much trouble I just popped down a fortisip in my peg. I smelt like a fortisip! I have now been free of peg for 18 months. Still can't taste much and food has to be eaten with loads of liquid but that is how it is.
Get advice from your dietician and she will see you through the tricky bits!
Good Luck!

Anne

Hi Laurel

I know where you are coming from hun, I was at that stage not long ago. I have just had my tube removed this week and I still can't eat "properly". I to crave food but until my taste buds kick in some more and I get a bit more saliva, it will be more of a chore to eat than a pleasure.

Remember that although we have both been through tonsil cancer, our outcomes and speed of recovery will differ.

I know exactly what you mean about fruit, mind you, it still tastes a bit odd to me now but at least a smoothie doesn't sting on the way down. If you want to eat but find it hard to swallow then you could try what I did, take sips of milk with your food, it's so much nicer than water! You must liase with your dietician and see what they can offer in the way of advice. To get your taste buds working again, you need to kick start the little blighters. I eat some mild curries and spicy things like that. If you don't make them work, then they won't come back.

Please don't be in a rush to lose your tube (that's great coming from an impatient patient like me!) remember it is your main source of vital nutrients. If you can't maintain an oral diet to sustain your body then you need that damn bit of plastic. Don't worry about being 96 pounds...that's a great weight...if you're four foot tall! Seriously, talk to your dietician, if you are underweight, they will put you on a specialist diet.

There isn't really an awful lot else I can add at this stage except to mention that it took me a year from finishing my treatment to having my tube out. As I said though, we are all different.

Please to not hesitate to mail me if you think of any questions or concerns and I will try to help you by telling you my experiences.

I expect you to walk around with a massive smile on your face, show this thing who's boss!!!

Ray