Can you give to much support

[dscherer]

Tonight my eyes opened. MY mom, (who is in the middle of treatment for limited sclc, radiation is done, just had 3rd round of cisplatin and vp-16, it's been rough) is really struggling to eat. The pain from radiation is starting to improve but she has no appetite and her tastes are so different and nothing even sounds good. Well she has to eat so my dad and I are trying everything to get her to eat. Tonight she was just so sad. Se feels she is letting us down because she isn't eating enough. I explained we just want her to stay as healthy as possible, but I never meant for her to feel I was judging her. We had a great talk but I feel so bad that she felt that way. Can you give to much support? ANy ideas about the appetite issue?? I want to give her all the support she needs but I want it to stay positive!!

Well thank you for letting me ramble. It always feels good to get these things off my chest.

Thank you all,

Dana

[Suzie Q]

It is difficult to walk the line between supportive reminders and nagging. But you seem to have good communication with your mom, and it's good that you were able to get her to open up about what was bothering her.

Between the radiation and the chemo, the taste buda and the esophagus really take an assault. Let her eat whatever sounds good, even if it's ice cream! Try to fortify her foods with instant breakfast mix or Ensure or Boost milkshakes. Maintaining adequate fluid intake is the imperative thing. Some people like flavored water, Gatorade, tea; so whatever it takes...

But do let her know you realize how hard she's trying, and ask her how you can best help her without putting too much pressure on her to perform. I'm not saying that's what you are that, though! I'm sure you are being a really great support person. Keep up the good work.

~Karen

[wendyr]

Hi Dana: food not tasting good and loss of appetite is very commom while undergoing treatment. My husband also thinks I'm nagging him to eat & take in more fluids. It's a very fine line that caregivers have to walk. Maurice doesn't like boost or ensure so I make milkshakes out of Carnation Instant Breakfast. Mix it up with Half & Half & throw in lots of ice cream for extra calories. I also leave small snacks by his chair which he sometimes eats. Nuts, cheese, chocolates etc. Have you spoken with her onc about drugs for appetite. There is marinol which is medical marijuana in pill form. Keep us posted on how we can help you. Good Luck & God Bless

wendyr

[recce101]

When I was on the more toxic part of my treatment program (the 4 months that included taxol and carboplatin), I had considerable trouble eating and there were some family misunderstandings until I was able to satisfactorily explain my food problems to the others.

Harsh chemo drugs really do a number on the digestive system, from top to bottom. Statements like "I don't have an appetite," "I don't feel like eating," or "nothing tastes good" can leave the impression that the person is being difficult or too particular and could overcome the problem with a bit more willpower. But such explanations don't begin to describe what was going on in my body.

My mouth, tongue, throat, esophagus, stomach, and bowels had been damaged by the chemo. The mouth surfaces were raw and tender, and the taste buds were fried. So it wasn't a question of something tasting good or bad -- for the most part there was no taste at all. About the only sensation left was the feel of the food contacting the tongue and gums while chewing, then sliding down the throat and esophagus while swallowing. Food with firm edges, either cooked or uncooked, was irritating and even painful. Food with a grainy texture, such as beans and most meats, felt like sandpaper. Soft fruits, creamy soups and puddings with no solid chunks, ice cream (again no chunks), milkshakes, Ensure and its clones, and many other beverages actually felt good going down, and a little bit of the taste frequently came through.

When the food reached the stomach, other things happened. Generally the foods that caused pain or discomfort going down were not welcomed by the stomach either, and they tended to bounce back out, along with some stomach acid, in the form of heartburn or acid reflux. So "I don't feel like eating" doesn't quite tell the story. Foods that went down pleasantly usually did okay in the stomach as well. Then too, for some reason the stomach simply didn't have the ability to accept as much food as before (or after) the chemo. Small, frequent snacks were much easier to handle than three "normal" meals, parts of which were usually left untouched.

As we know, everyone is different, so another chemo patient's reactions to various foods may differ from mine. Clear communication is essential. Only the patient knows which foods feel good, which are irritating, and which are actually painful. The statement "eat what you want when you want" may sound indulgent to someone who hasn't been there, but it's good advice for those undergoing treatment with the "hard stuff."

Aloha,

Ned

[Heather_T]

Try to find something she likes. I hated water during my chemo/radiation did not want to drink it. I could not drink any carbinated drinks so I started drinking decaf tea. I have never liked tea and I do not drink it now but it got me through. I ate chicken noodle soup for 2 straight months (only the homestyle). It is hard and it does feel like nagging sometimes. My mom was not bad but my hubby drove me crazy to were I would yell at him just to let me be. Ned descibed it best. I hope everything gets better for your mother.

[Don Wood]

My opinion -- when it comes to eating, you can't give too much support. It is essential that the patient eat well, so anything you find that works -- and you may have to try many things -- is worth the effort. My daughter called me "the food Nazi" when it came to my insisting my wife eat, even when she didn't feel like it (which was often when under treatment). I believe my insistence was a factor in her living as long as she did. I never gave her a choice of eating or not eating -- it was "either this or this or this". She thanked me many times when she realized she needed to be prodded. It is understandable - with the patient tired, nauseous, medicated, bad taste, etc. -- that they don't feel like eating -- but they did to. I found that feeding her small snacks every two or three hours, instead of the traditional 3 squares, worked better. She could handle it better and it also cut down on the nausea. Hang in there. Don

[fillise]

I know exactly what you are going through. My Mom has to let me know from time to time that she is tired of me always telling her what to do (what to eat, what to drink, what questions to ask the onc., etc.). I think the great thing is that you and your Mom had a discussion about it so that you both could understande each other's perspective.

There is an Italian pasa called "pastina." It's very tiny stars and a couple of spoonfuls in a cup of broth can be very gentle on a stomach. I was raised on this stuff--for the stomach flu it was often the only or first thing we could keep down. My Mom has used it for several of her friends who have undergone chemo over the years and they reported it was often the only things their stomachs would tolerate. You might give it a try. It is made by Ronzoni and is in the pasta isle (sometimes it can be found with the babyfood because it is also used as a first food for babies).

Susan

[janehill]

Few things feel worse than feeling forced to eat when you just can't - whatever the reason.

I agree with the suggestion to give her whatever she wants, whenever. You might want to tell her in advance that you're not going to keep offering food to her because you know she'll ask when she's ready. And when she is, give her absolutely anything she wants. If she wants cottage cheese, get the richest one they have. If she wants ice cream, get the Hagendaas full fat and let her have that.

Square meals have taken on an entirely new meaning for my mom since the cancer. Last Friday night I cooked all of her favorite meals and made them exactly the way she likes. Then I bought quart-sized ziplock freezer baggies and put one portion into each. This way when she's hungry, all she has to do is take one out, nuke it for a couple of minutes and she'll be able to eat what she likes. If she wants a Drake's pie, she gets it with a smile. I also keep Ensure in the house chilling in the fridge and swiss cheese and full fat yogurts - all the stuff she likes in their richest form and accessible. (yes, she even has Cheetos sometimes - like I said, anything!)

Much luck to you.

[LucysHope]

Howdy!

My sis wouldn't eat because of course, she had no appetite and what she did eat came up later. That also included water. She really got zapped with the chemo. We think that the Marinol was our miracle pill.

[teriw]

I think one of the keys is to acknowledge to your mom that you have no idea how she's actually feeling, but that you understand how difficult it might be to eat. Bill has said to me on many occassions that how he feels during this is unlike anything he's ever felt. And that when he feels like I'm pushing food on him, it just makes it worse. (He's picky in the best of times.)

I know when we first started out, I would get really frustrated, which would make him feel bad. I just couldn't understand it. Like others have said, whatever she fancies, give it to her! Bill has all kinds of weird tastes at the oddest times. 11:00 the other night he suddenly craves a banana sandwich (yeah, he eats that normally too...). Fine...banana sandwich it is! I've also learned to not get too upset over "wasting" food. Because what sounds good one day might not sound good the next. It's just the way it is at the moment.

[Flowergirlie]

I think it is very true to be sensitive to the ever changing needs. Even though we want our special loved ones to eat because that is how we show them we love them and want to take the best care of them possible, just gently letting them know that you are willing to get whatever it is that might sound good when it sounds good is usually enough. My hubby just did not want to eat anymore and he became very sad because he thought I was trying to pressure him to eat, which is of course none of our intentions, so I also just left favorite snacks bedside and if he wanted, he grabbed them in his time.

All the best to you and your mom. It is so nice that you have good communication and are there for her. I am sure that means the world to her.

Flowergirlie