Ingeborg, you brought back so many memories. Martin was irrate then impatient but as he got weaker through treatment he went very quiet, too quiet. it was even worse than him being angry. It took him ages before he accepted the tube. he was so thin but kept refusing it. He says now looking back he was trying to pretend all was fine. admitting he needed the tube was admitting failure towards the cancer, as absurd as it seems. He wishes the dietician had forced him to use it. Maybe you can ask a nurse to talk him into using the PEG and show him how to use it, or you can learn and feed him. I had when Martin was at his worse.
It's a tough job being a care giver but try and be strong, vent here and have some you time outside. If I am right it's summer in your part of the world? Is there anyone there to help you look after the kids while they are on their summer holiday?
Just keep strong.
Cecilia

Wendy put it beautifully.

People react with a shocked look when I say that Jody is a cancer survivor. I always say that it was the worst thing that ever happened and we turned it into the best we could do as a family.
Am lucky that my daughters were grown. Each one took a day every week to drive 5 hrs round trip with Dad for his treatments. Such a wonderful time to connect one on one with their father and him with them. I know he cherishes how special that time was.
Don't get me wrong, cancer is a lousy rotten thing and no one should go thru it. I guess it's the way we fight it.

Is there a summer camp or day program for children there?
Anything you can do to relieve some of your stress is a big help. Then there is always " scream and beat the heck out of a pillow" (made me feel better but can leave you with a sore throat)
Margaret

All,

thanks for all your kind words. I read them all, lapped them up, more like, and really appreciate that you took the time to reply.

It's good to have a forum like this, and I know that nobody will be upset or angry that I didn't reply sooner. You've all been there, done that, so you know what it's like.

Treatement finished late January, after three rounds of Cisplatin, with 5Fu thrown in the first round, too. 30 radiation rounds.

At the end of the treatment, Volker said if someone had offered him a switch to end his life, he would have thrown it.

He was a miserable heap, and you are right, the crumbs in the drawers were not all that important anymore. It's all a matter of perspective, I guess.

I know I will never really understand what he feels like. What it's like to have no energy, no appetite, hardly any teeth to chew with and no saliva to get the stuff down.

The scan they took 3 months after tx was finished was clear. So there's good news, after all.

Now we're trying to get the patient back into a healthy, energized state, which is difficult. He tried to stop tube feeding a few weeks ago, but since oral food intake is still too much of a problem (Yuck factor, lack of appetite, saliva and taste), he lost even more weight, until the dietician whipped him back into shape and ordered him to get 8 Fortisips per day te even keep his weight, not mentioning gaining any.

He's very keen to lose the PEG tube, because it bothers him. But there are not many days where he manages to take in even 200 Calories on top of his 8 bottles of Fortisip.

Is there a section in this forum that discusses recipes and tips for food preparation? What to offer? How to prepare? I'm a keen cook, but lately, nothing I come up with seems to do the job. Can't do potatoes (they apparently dry up the mouth even more), nothing fried, no fish, no meat, no salad, no bread. Some soups work, but if a soup works one day, it does not mean it'll work the next day, too.

So I cook and freeze and cook and freeze, and have the freezer filled to capacity with things he once thought he'd like, but now no longer wants. If I could cook only three tablespoons full of stuff, I would, but with anything I cook, at most three spoonfuls end up in him and three tupperware containers go in the freezer.

Note to self: learn simple arithmetic and divide my recipes by 8.

Everything I prepare for him, I try to add lots of carbs and fat. Then he takes a little sip and since the freezer is full, I feel obliged to tuck in, so it doesn't go to waste. No waste = bigger waist. Mine. Arghhh.

Soon we'll both need new clothes, he, because his stuff is too loose, me, because my stuff is too tight. Maybe we should just swap?

He's teamed up with a guy who went through the same treatment and is about 4 months ahead of him. That gives him some kind of perspective and helps set expectations.

Still, I'd never have thought that the recovery after the treatment would be so slow.

I guess we'll invest in a real good juicer and continue to poach eggs for a while.

I'll be lurking and reading posts, even if I won't post much myself.

This forum is an incredibly helpful resource, although there are still some corners where I don't dare to go.

cheers

Ingeborg

Here is a list of easy foods for beginning eaters...

http://oralcancersupport.org/forums/ubbthreads.php?ubb=showflat&Number=94621#Post94621

There are other ideas under the food heading also.

Getting a good blender was crucial for us. The "shakes" saved us when Gordon could no longer get down even his beloved oatmeal. I would put in 1 cup of fortified milk, 1 1/2 Boosts, 2 scoops of ice-cream and 3 TB of whey protein powder into each shake. I was adding fruit such as papaya, strawberries and mangos until his tongue couldn't take it any more. Because he's pre-diabetic and lactose intolerant, I had to put drops in the whole milk and add more for the skim milk powder I added to the milk. Luckily I found a "no-sugar added, lactose free" ice cream. We are still trying to get in 4 of these shakes a day, and he's having bits of other things like Cream of Wheat (which works fairly well), applesauce and finely cut up papaya to get him eating soft food as well as having the "shakes". Also "no sugar added" puddings. It's trial and error. To test what he can tolerate, I take a tiny bit of something and give it to him on a plastic spoon. He gets it down, waits a few minutes for some possible backlash and then I get a thumbs up or down. Little bits of this and that will give you an idea of what Volker can tolerate. Gordon can't take yogurt yet, but when he does, I'll start adding that to his shakes. Good luck with it all - feeding is a tricky business.