Hey, Moptop!

The courgette tip didn't come from me. I had to look up the word; I don't eat much zucchini apart from in quick breads (nom nom).

Oh, yeah. I wholeheartedly agree about the numbness of the graft--especially early on. Even now, I find that Flappy is more sensitive than my native tongue to temperature and pressure. Over time, though, (hopefully) nerves will grow in from your native tongue. For quite a while after I graduated to real food, I avoided using a fork because I was afraid I'd poke my tongue.

Whether you've got a PEG or an NG tube you've got to be careful. The PEG, for the reasons you listed. But the NG tube brings its own set of problems. If the stand isn't tall enough your "food" won't flow properly (I ended up hanging mine from a curtain rod). Also, if the stand isn't high up enough, you could trip on the tube and/or tear out the stitches keeping it in place. We ended up securing my NG to my nose and cheek with pieces of tape. Had to be REALLY careful not to turn my head too fast. Reading all your troubles, moptop, it makes me glad that my doctor opted to go up my nose with a rubber hose.

For me, mashed potatoes and gravy became its own food group. Certainly ate a lot of them for a while.

If someone offers to help, let them. This isn't a time for heroics.

Oh - gosh - nose feeding... I had a nose-tube when I first came out of the op, and I hated it - well, I also had the tracheotomy tube in at the time, and was not very much in contact with reality, but I scared my poor nurse silly by grabbing the nose-tube and pulling - I did NOT like it! - luckily, I didn't manage to pull it so far out that it needed a doctor to put it back, but no... I prefer my dangly-tube version! despite the mess.

Been trying to think of more useful things. Soup, enhanced with melted soft cheese, goat's cheese or cow's cheese. Easy down, and has added protein. I still do that now, whenever I have soup, because I know I don't eat that much protein - meat is dry and hard to chew, and I can still have really strange reactions to fish, I can never predict whether the smell is just going to turn me right off.

But, on meat: carpaccio, great way to eat it. Stewed lamb, or any really tender lamb - expensive, but I only eat it in small quantities so hey - don't over-cook meat if you are frying or roasting it, it goes harder. Keep it juicy; basically, the rawer the better, is good for beef, lamb, duck; also salmon and tuna.

Still don't know who the courgette lady was, but I think she is a northern (english) lass - I reckon it was also she who recommended gravy. Yes - lots of juice, and not necessarily thickened. And don't be fooled by potoes: they are actually pretty hard to eat, they soak your saliva up. So, good in stews, if you mash them in; good in mixed purees (carrot and potato etc.).

Fizzy water is generally good, although I think that is very personal, and there are times when it is actually painful as a combination-item.

Some tips about your relationships with doctors:

1. Don´t mind if your surgeon does not seem "sympathetic" on your first visit. Surgeons, in general, are NOT sympathetic nor particularly sensitive. But do check their professional reputation.
2. Avoid going to the doctor alone. Emotions may lead you to forget to ask him or her the appropriate questions. A third person´s eyes and ears may be extremely useful
3. Write a list of the questions you may want o ask, and write down the doctor´s answers

Have a merry Christmas, a merry Chanukah, and a happy new year!

Hola Shoshona

I guess I was one of the lucky ones--my parents and I were comfortable with my doctor from the outset. It really helped that he was (and is) at the best teaching hospital in Michigan.

You are spot on about not going alone, especially to those terrible first visits (the ones with all the testing and such). Grief shared is grief halved; joy shared is joy doubled.

I'd suggest not just writing a list, but getting a dedicated notebook for it. Include the dates.

I'd like to add:
4. Don't miss or reschedule appointments unless ABSOLUTELY necessary.

5. Follow your doctor's orders! They're not suggestions, and you'd only be hurting yourself. I've actually heard at least one of the doctors where I go tell a patient "if you don't care, why should we?"

All the best!
Julia

Hi, Julia,
Keeping a diary is a brilliant idea! You can write notes about your medical appointments, tests results, treatments, and medicines, but also about how you feel about it all.
Exteriorizing your feelings by writing them helps you to cope with the anguish and frequent anger... At least, it has helped me.
When I went to the clinic for my partial glossectomy, I carried in my brief luggage a note book and 12 pens in different colours.
Have a happy Christmas!

Hello, my friends,
What has happened to Anthony`s brilliant initiative about writing a collective "Dummies Guide for Oral Cancer"?
There are wonderful tips and advice in this thread. Could we complete them and put them all together as a leaflet?
Best