Donnjean, Mark here, I want to tell you you are doing great! For me the radiation effects your asking about happened to me and went on for a long time. I'm wondering if anyone has suggested that Johnny elevate his head and sholders with a board under the mattress (2 to 4 inches is wht I did)? I did this and it helped with swelling quite a bit. some of the swelling is probably lymph that has not figgured out how to flow out since the surgery. The extra tilt of elevating his head will help with the flow.

I agree big time with the idea of staying "in motion" and the motion does not have to be hard excercise. just a slow walk at a favorite park or a trip to a museum...what ever. It has a positive effect on the mind as well. I found humor to be very helpful. The mind is the best place for healing to start and one of the hardest to keep on track.

As for food, my wife kind of struggled with that too. I actually started to make myself blender meals. If you haven't tried that you'd be suprised what works in a blender! There is not a single food that won't work in a blender. Sure you have to get used to the new texture but the taste can still be there. I personally blendered such foods as steak (grilled first), an entire double whopper with cheese (close your eyes for that one it tasted great however), An entire salad, bacon and eggs (fried first)... just add enough milk to get it to go. Beyond that there is no end to the fortified smoothie type drinks: try one banana, one or two scoops of vanilla ice cream, 1/2 to 1 cup oatmeal (not cooked), a spoon or two of yogurt, some high protein powder (available at most health food stores) fresh fruits and a 1/4 cup of walnuts are optional add milk if needed. you can play with this recipie all you want. The important thing is to get extra good nutrition into Johnny because the various treatments cause the body to use up many stored nutrients.

Last, I still need more sleep than I used to. My suggestion is don't worry (good advice for anything) but keep your eye out for the depression thing.

Two months after I was done with radiation (5 1/2 years ago), they sent me to the dietition at the hospital who put me on ( I was 5'5' 118 lbs) 80g of protein a day (you'd obviously need more) and 220mg Zinc, 500mg Vitmain C twice a day, 400 mg vitamin E twice day, and a multivitamin that contains everything under the sun. I also take 500mg calcium twice daily.

To help get the 80g of protein, I still drank a can of Ensure PLUS for breakfast, drank fortifeid milk with my meals, etc. Yogurt also has lots of protein and easy to eat.

They did this to improve my ability to heal but I do think this helped with my energy level as well and still take all those vitamins aand zinc today. Haven't had a sniffle since. I'd check this with your doctor first since you are not supposed to take vitamins if while you have cancer.

Mark and Ellen, thanks for the great advice. Ellen - Did you mean that a person shouldn't take any vitamins while undergoing radiation/chemo treatment? If so - I agree, my husband's radiation oncologist said the same thing, but I don't see why there would be any problem with it after the treatment has stopped. We were told it's always best to wait a few weeks before taking any vitamin and/or mineral supplement. Anyways - John doesn't take any supplements now - mostly because they are way too big for him to swallow and also he has a plethora of other pills he takes for various other ailments. Mark - those were some good tips, and I will try the elevation w/the board idea. He has tried a recliner and even several pillows and even a special "4-in-1" pillow that can be manipulated in different positions - but not much help - he somehow (don't ask me how!) always manages to get in a flat position. But you never know - this new idea may just do the trick! Thanks again for all the helpful info.

DonnaJean,

Just another quick note about vitamins. Right after my surgery when I couldn't swallow or eat much, my husband put liquid Centrum in my orange juice every morning. The only problem this caused was some staining of the teeth, which wasn't a big deal. It came right off with a gently buffing from the dentist.

Take care.

Anne.

Mark,
Your approach sounds very creative. I am 7 months out from radiation and still have my PEG, although I only use it about once a day now. I drink a lot of Boost Plus and try to eat more, but can't seem to eat enough to gain weight. I had my esophagus dilated three times and it seems to be opened us sufficiently, but when I do eat I can only seem to eat small portions. I have tried many things...cheese cake, grilled fish, vegetables, soups, oatmeal, pasta, rice krispies..but eating is slow, difficult and , I repeat, hard to eat much volume. I have found that I can finally drink milk shakes and smoothies..that I just could not get down a month ago.
I would like to get rid of the PEG and eat more, but I am unsure if it is my fault for not trying harder or if things are moving along as they should. I could call the dietician at MD Anderson...that place never follows you up on their own..they leave it up to you to contact them.
Any advice? Brian, why did you keep your PEG so long?

Danny G.

The interior of my mouth was full of open radiation sores / mucocitis for months. Eating anything hurt like hell. I was losing weight all the time and I couldn't put the brakes on it. It just took that long for the tissues in my mouth and throat to get to a point where I could tolerate eating things. Every little spice, or salt, or warm or cold etc. was painful. It was that long for me to heal well enough to be free of it. Besides everything tasted the same...like nothing. Today, five years out I had spicy salsa on some huevos rancheros for breakfast at a restaurant with a friend. I never thought I would be doing that again....

Brian,
Your progress sounds good. I will sit down with something as simple as a bowl of oatmeal before me or a plate of soft vegetables at a cafeteria or yesterday, broiled red snapper at a Greek restaurant...although the mucous is now under control and my mouth is not sore...as you said, the food doesn't have that much taste , and by the time that I get up, it looks like a bird has been pecking at the food. I just cannot seem to eat very much. I don't know if it is due to a shrunken stomach or the swallowing function still healing, but I barely eat one half of much of anything. I am getting a little tired of yogurt and Boost Plus but I realize that all that now stands between me and normal life at the moment is being able to eat and gain weight.

Danny G.

Danny, if you want more of my wacky blender ideas just let me know (yes I did one with tuna in it). I did not have as much of a swallowing problem but a had the awfull sore throat first from the tonsillectomy than from the radiation. in addition the surgeon nicked a nerve for 1/2 my tongue so manipulating food inside my mouth was a battle, and then of course no salivia.

The smoothies were great because they were fairly normal food (not ensure which I now loath), didn't require much chewing (so you can slam them) and if you use ice cream they were soothing from the cool.

AS for the Vitamin thing during treatment nobody told me that and I took megavitamins IS THIS A BAD THING?!

I found bowls of oatmeal and broiled fish are very dry food and difficult to eat after radiation. I think part of your problem is you may be trying to eat foods that do not contain enough moisture. One would think that something like mashed potatoes would be easy, but I found them too dry unless I buried them in butter and gravy. While oatmeal was like glue, cream of wheat wasn't if I loaded it with honey, butter and milk.

Try eating hollondaise or a butter dill sauce if you eat fish, lots of applesauce with pork, rare lamb chops(leave the fat on) and mint jelly, rare steak, lots of cranberry with turkey and gravy. Find veggies with lots of moisture like peas or corn. Salads - pick lettuce which lots of water. I chose romaine with blue cheese. Anything with vinegar was a nono. Try pasta with an alfredo sauce. Then there are a million different kinds of soup and lots of good desserts like creme brulee, etc. I happen to like classic french food so I also ate things in sauces like veal in mushroom and cream sauce.

It also took forever to get a meal down, so take a book and chew and relax. You also need to figure out what you can and can't taste and this changes by the week. My sense of smell increased greatly after radiation so everything smelled marvelous, but it was a while before pork tasted good and at least 6 months before I could tell a pile of sugar from a pile of salt.

Hang in there and keep trying. Hope this helps.

Something I've found out, chicken seems awfully dry, even in soup. However, duck or goose has higher oil content in the meat, so even well done these birds aren't as dry to eat.

Was at a company Christmas dinner about 2 weeks after finishing RT, just starting to eat solids well but still dealing with dry mouth. Don't remember what it was on my plate but it was something not healthy and high cholesteral, but edible and moist. Person next to me asked if I don't get worried about my cholesterol level. I just looked at them like they had grown a second head, and they replied, "guess not at this point, cholesterol would be the least of your worries"

One other thing I'm going to jump in here with. The literature for cancer patients at the hospital, and also my oncologist mentioned that having a glass, pint or can or bottle, of Guiness occasionaly (no you cant drink a six pack a night) with meals helps stimulate saliva and the Guiness also has some useful nutrients in it. I don't think that solution would be good for everybody, but has anyone else heard this?
Bob