After my three operations (first one 15 hours for partial glossectomy, two grafts, next for tongue cancer (came back as neck, and then throat), I had a PEG tube inserted in August. I have NO DESIRE to eat solid foods or drink anything other than Iced tea. Can SOMEONE PLEASE HELP ME? I am now on chemo again once a week. Every Friday....This is no way for someone to live....
What can I do to want to eat on my own???
Wow. I thought someone at this site would at least respond.
Wow.
Hello Gail!
First realize that these forums aren't "manned" at all times and many who do use them do not always either feel confident responding or do not know how to help you. We do what we can my dear.
Now appetite and eating are struggles with many on these forums, I struggle with it now. It's important to understand that like any muscle in your body, you need to use it or lose it, meaning it's very important to try to eat orally, even if you don't "feel" like it. I lived with a PEG for 18 months so I understand.
I literally "force" myself to eat solids everyday however most of my nutrition is based off of a liquid diet. Eating to me is rarely enjoyable, however I've learned to accept it and I really enjoy my life despite this challenge. I was a "foodie" and even owned a restaurant at one time, as a former wrestler who denied myself of food for long periods of time I had a special relationship with it after I didn't have to suck weight anymore.
Now, eh, the only time I ever really "crave" food is when I've used medical marijuana, which is fantastic at promoting appetite. I've recommended that solution to many on these forums with the caveat that it should never be smoked but vaporized. I'm not sure of the laws in your state either Gail.
Best of luck to you Gail, keep your chin up and take a moment to read the quote in my signature. It's helped me cope with all of the challenges I've faced along the road.
Eric
Gail - It is SO, SO important to get the right amount of nutrition and liquids every single day -even if you don't "feel" like eating or drinking. I haven't had Eric's experience or been where you are but I could see how difficult it was for my son to keep taking in food that he couldn't taste and that caused him excruciating pain going down. Taking care of your health NOW can keep you from being hospitalized for dehydration or weaken your body to the point where it gets even more difficult to get better. Try keeping a record of everything you are able to take into your body (and going out too) so that you can see some progress and feel good about the things you are able to do. Try to get the amounts you need to have every day and don't try to put off something to the next day. Do you have someone close by that can check on you and help to encourage you and keep you on the right track with your nutrition? And really listen to everything Eric has said. He knows what he is talking about! Please come back and let us know how you are doing and what progress you have made.
Hi Gail it's all about motivation and knowing what you have to do. Set something each day as a goal. And increase the goal weekly. So say to yourself I'll find a soft cereal I like and have it for breakfast - then the next week add maybe a glass of juice or milk, the following week find a soup you like - then add another until you are eating consistently. Slowly but surely - I'm 10 mos out of radiation and still something's are unpleasant but I try them once a week to see if that has changed. But you have to force yourself.
hugs and congrats on just getting brought it!
Hi Gail. The OCF forum has people online almost all the time. Even though some members can be online at the time of your post, they may not be familiar with your situation. When someone makes a new post its unusual for it to get an immediate response. This post has now been here for only 12 hours and look at all the responses!
I understand your concern about not eating. I also have to depend on a feeding tube and it stinks! For me its not lack of appetite, its the lack of teeth that make eating difficult. I also have swallowing issues so I struggle. I know its not the preferred way to live but a good life really can be lead without eating. I do understand your frustration with this. It isnt easy to mentally handle going thru life with a feeding tube.
I would agree with Cheryl with trying to set small goals. Try to eat a yogurt. Mash up some cottage cheese to make it easier to eat. I eat mashed cottage cheese with some applesauce to help it go down easier. How about some chicken noodle soup broth? There are alot of things that you can try. Set a goal to try a new food every week. Keep giving it a try everyday. Start out with say 5 bites of something the first day. Then increase it daily, by the end of the week you can be up to a decent sized portion. Talk with your doctor about your lack of appetite and ask for help. Maybe see a nutritionist for some pointers.
Good luck with relearning how to eat.
I'll add to Christine's post by saying that introducing new flavors and textures can awaken your senses, increase salivation, and motivate you to try new things. My husband had a PEG for a long time. After having it removed a year ago, he has been eating new things very gradually. Sometimes the idea of eating was a turn off and sometimes textures were difficult. You'll never know until you experiment. Today, his selection of foods has increased although some textures continue to be difficult and unappealing. The trick is to try something here and there. You'll find the foods that work for you. Everyone is different and each has his/her own time to get to the next step. These days I cook foods that have a high moisture content and are easy to chew. But it has taken a long time for my husband to feel confident about handling certain foods.
My best to you and don't be too hard on yourself or compare yourself to someone else. We are all different.
Gail,
I started out with sherbet and applesauce, but it was a struggle for me, too. I ended up being hospitalized to get extra nutrition throgh an IV because I wasn't eating. That did it for me. I made sure that I had Ensure put through my PEG at least 4 times a day. I also had a liquid vitamin added. I gradually added yogurt and ice cream. I still have issues eating, but I force myself to have three meals a day even if I don't want them. I also make a milkshake every day with Ensure plus with ice cream and a bananna.
My husband found a protein shake made with the following to be pretty tasty and relatively easy to get done: 1 packet vanilla breakfast essentials, 1-2 scoops ice cream, and milk. As he healed, we added a few slices of canned peaches to the mix. Then some toddler's rice flakes. The big day was adding cooked oatmeal (just don't burn out your blender!).
He still starts the day with a protein shake including milk, whey powder (the kind with natural vanilla), and cooked oatmean - now he adds fresh fruit, and sometimes malt. He still to remind himself to eat - so you are not alone in that. Best wishes.
Hey me too! I have a kick butt smoothie every morning. fruit puree, protein powder (non animal non milk based), chocolate and plain (unsweetened) almond milk, fresh fruit, and a bit of flax oil and cottage cheese... awesomeness (cheesecake in a cup!)
I was also going to second Eric's comment. If you ever want to get off a peg, (and there's no physical reason preventing it) - then start to eat and push yourself. Otherwise as he said... if you don't use it you lose it. if you don't try to maintain your swallowing reflex you will lose it eventually and then even if you want to give up the PEG, you may not be able to. We can make suggestions- but only you can do what has to be done. hugs and take care.
I am sorry if I sounded desperate in my 3 posts, but I am. I am so sick of being sick. I would give anything to go to Capital Grille and eat a steak!
Thank you all from the bottom of my heart for responding. I appreciate it.
Thank you Eric. Sorry to sound so desperate, but I am. I just want to be "normal" again. Even though that is not possible - still going every Friday for my Taxol treatment....Medical marijuana is not legal in CT. Shame.
A former wrestler - how exciting! I live in Stamford, CT where WWE is based. I see the guys all the time at the mall, etc.
Thank you again for your understanding and response. I truly appreciate it.
Christine,
I too have a tooth issue. All of my teeth on the lower left side of my mouth were removed. Before radiation and chemo I was able to eat soft food, or my husband put food in the blender for me.
All I want is to have my teeth replaced. My surgeon won't let me get implants since my jaw was rebuilt. I am looking to have dentures but have to wait until chemo is done.
Are you looking to have your teeth replaced or is that not an option??
Thank you for your response. I look forward to keeping in touch with you.
And don't measure success by how much you ENJOY the act of eating. For now eating is like exercise. You may not like it but it is good for you.
My husband finished radiation and chemo 3 weeks ago. He shed tears in my presence only a few times during this ordeal. One of those times was when he was staring at a meal that he would normally have loved. But he didn't want it. But he HAD to have something. He WANTED to WANT it so bad. All of us, including the caregivers, can relate to your struggle.
Maybe the theme for not rushing things on this board should be "baby bites" instead of baby steps. Be patient and be proud.
There are so many things I have lost, quality things, due to cancer TX, but depression is so easy to slip into, I feel like a drunkard, one lapse into depression is too much, I would be lost again.
I have only one choice, to live.
The best I can, I look around, and note so many other people who are so much worse off than I am, and no matter how they are handling their conditions, they give me Reason to do better for myself, my wife, those who love and/or care about me.
To some, I am an inspiration, and it's therfore my duty, to do as well as I can, and as I go about that lifestyle, I realize I am no longer depressed, I begin to feel better about the quality of my life.
The more I give to others, the Richer my life.
The "baby bites" mentioned above is a really good thing to keep in mind and the same principle can be applied to depression. When you first notice it, try to give it a time limit - say one minute or less and then switch to something more positive no matter how small the positive is and take "baby bites". As a CG to my son, I knew I could not expect him to right away come out of his depression - it takes very small, gradual steps. When I noticed his "down" mood I would ask him on a scale of 1-10 how low he felt and if he said "3" I would ask if he could just work on bringing himself up to a 4 or 5. There is also what I call the "Little Engine that Could" principle. (Children's story about a little train engine that must go up a hill and he keeps saying "I think I can, I think I can" and he finally succeeds in getting over the hill!) If you can at least fake it, and pretend you are slowly coming out of the depression ("I think I can, I think I can"), then, soon - you begin to believe it! It IS possible to climb out of the dark hole of depression and get over the hill. My son did! (me, too) Believe it!
Gail,
People made some great points here. Most of us have been in the "eating is an exercise" mode at some point. We eat because we know we should, it will make us feel better. I sure do not remember much that actually tasted good to me during treatment, like you would at a restaurant. I loved soups, that might be possible if they weren't hot.
And the big goal is getting well. The intermediate goal is feeling some better. The first goal or goals is/are, perhaps, eating a few bites, getting a little exercise, watching a TV program that makes us laugh, talking to family, whatever else you can think of.
I know this is easy to say, hard to do. But actually most of us on this site have had our struggles, some less, some more, in this area.
Sorry you are having such a hard time.
Best,
Anne