eating just sucks

Amen!
I hear ya sista! you know that has been my constant moan, and why i sought this forum out. i never thought that i would be struggling still, this far after treatment. but have hope that you will improve even if it seems like it is taking forever. i was actually able to eat a piece of chicken the other day. i nearly cried with joy. all i can say is keep trying hun. i still have a very limited pool of food i can tolerate. eg that does not burn and that is mushy enough for me to swallow.

super well cooked oatmeal
soggy cereal in lots of milk

my one tortilla with a bit of cream cheese spread on it and one piece of thin ham or turkey-
sometimes topped with shredded cabbage and carrot (bag of cole slaw mix)

bananas
mashed potatoes
well cooked ramen noodles tossed in garlic and olive oil
avacados
potato salad with a mashed in avacado
very boiled macaroni salad with a mushed in avacado
some smoothies
sour cream
some yogurt
some cheese
pureed beans
my step moms cheesecake (not like that happens often)
pastina with butter

ice cream (in the begining when I just started to drink again, after 5 months of nothing orally, i had to get the vanilla ice cream with out the specks of real vanilla because those tiny flecks hurt my tongue so bad. i am totally serious. my friends and family thought me insane)

really mushy brocolli tops, just the very tops of the florets. have to put it in the food chopper, I add a tiny bit of olive oil and garlic

bolthouse farms fruit and protein drinks
resource boost breeze

sometimes i will try new things and put them in my chopper first. less chewing for me to do. less pain on my tongue. I reaallly need to take tiny bites and swallow tiny amounts at a time or I will choke or food will get stuck. I take one piece of elbow macaroni in my mouth at a time. I chew it to death, until complete paste. take a sip of drink, and it takes 4 to 5 tiny swallows to get that one piece of macaroni down. If I try to swallow it all at once, comes right back up, doesn't fit thru my stricture. I can get about a half cup to a cup of food down now. It takes me around an hour or a little more to eat something. My mouth and tongue really hurt by the end.

I am feeling better that I can at least eat something now. I can tell you that the 5 months I neither ate nor drank were the longest in my life.

I can't eat with people either. They want to talk, and I really need to chew and concintrate. I have a friend that is coming for a weekend that I have not seen in 22 years. He wanted to go out to dinner and I am not sure I even want to try to eat in public. He is aware of my situation and said he will follow my lead on everything whatever I want to do. I am not sure I even want to eat n front of him.

It's frustrating, I know. You guys hang in there. I am wondering if I will ever get rid of my PEG.

sweetblood22 said:

Amen!
I hear ya sista! you know that has been my constant moan, and why i sought this forum out. i never thought that i would be struggling still, this far after treatment. but have hope that you will improve even if it seems like it is taking forever. i was actually able to eat a piece of chicken the other day. i nearly cried with joy. all i can say is keep trying hun. i still have a very limited pool of food i can tolerate. eg that does not burn and that is mushy enough for me to swallow.

super well cooked oatmeal
soggy cereal in lots of milk

my one tortilla with a bit of cream cheese spread on it and one piece of thin ham or turkey-
sometimes topped with shredded cabbage and carrot (bag of cole slaw mix)

bananas
mashed potatoes
well cooked ramen noodles tossed in garlic and olive oil
avacados
potato salad with a mashed in avacado
very boiled macaroni salad with a mushed in avacado
some smoothies
sour cream
some yogurt
some cheese
pureed beans
my step moms cheesecake (not like that happens often)
pastina with butter

ice cream (in the begining when I just started to drink again, after 5 months of nothing orally, i had to get the vanilla ice cream with out the specks of real vanilla because those tiny flecks hurt my tongue so bad. i am totally serious. my friends and family thought me insane)

really mushy brocolli tops, just the very tops of the florets. have to put it in the food chopper, I add a tiny bit of olive oil and garlic

bolthouse farms fruit and protein drinks
resource boost breeze

sometimes i will try new things and put them in my chopper first. less chewing for me to do. less pain on my tongue. I reaallly need to take tiny bites and swallow tiny amounts at a time or I will choke or food will get stuck. I take one piece of elbow macaroni in my mouth at a time. I chew it to death, until complete paste. take a sip of drink, and it takes 4 to 5 tiny swallows to get that one piece of macaroni down. If I try to swallow it all at once, comes right back up, doesn't fit thru my stricture. I can get about a half cup to a cup of food down now. It takes me around an hour or a little more to eat something. My mouth and tongue really hurt by the end.

I am feeling better that I can at least eat something now. I can tell you that the 5 months I neither ate nor drank were the longest in my life.

I can't eat with people either. They want to talk, and I really need to chew and concintrate. I have a friend that is coming for a weekend that I have not seen in 22 years. He wanted to go out to dinner and I am not sure I even want to try to eat in public. He is aware of my situation and said he will follow my lead on everything whatever I want to do. I am not sure I even want to eat n front of him.

It's frustrating, I know. You guys hang in there. I am wondering if I will ever get rid of my PEG.

sweet, I'm so sorry that you
sweet, I'm so sorry that you are still having such trouble. I have definitely been there and still get scared to eat sometimes. I pray it will get easier for you very soon.
I'm glad your friend is coming to see you, it may be just what you need to boost your mood. It sounds like he truly cares about you so feel safe in doing what you are most comfortable with, eating out or ordering in. Most importantly, enjoy his company and laugh a little, oh what the heck, laugh a lot!! Just try to have a good time and maybe even some fun. YOU DESERVE IT!! Please let us know how it goes, we don't have to have details if you don't want to share, just whether or not you had a good time. I'll be keeping my fingers crossed.
God bless you friend,
Debbie

I Shouldn't Complain, but . . .
Stacey,

Sorry it's rough going. I finished tx mid March. I continue to be very lucky when it comes to tolerating treatment. I can eat most things, and I think my taste is almost, if not completely back. Still, I was bumming a couple of days ago over the issues I have. I also find that there are some things I can eat one day, but not another. Like Mick, though, a Subway sandwich is a daydream for me. Oh well. With plenty of water and bland sauce, I could eat the meat and lots of toppings.

On the way lucky for me front . . . I get hungry sometimes! My family acted like I was a little off when I would excitedly announce "Hey, I think I'm hungry!"

I, too, feel awkward eating with others. I have an annoying habit of putting my hand over my mouth when I'm eating (like pressing on my lips will make the pain at the back of my mouth go away), and it takes a long time to eat. Sometimes I get irritated when everyone's long finished, and I'm still plugging away at eating, even though my food's gone cold. I celebrated my birthday with three groups of people this year. After smiling and choking down a small piece of cake at celebration number one, I let the others know that cake is not on my "can do" list yet. YET.

But I'm eating. I haven't used my feeding tube for nutrition since April, don't have to supplement with liquid nutrition, and my weight loss has slowed to a crawl. I wish you all could have been as lucky as I've been when it comes to mouth and throat recovery.

Keep plugging away. And know that I don't blame you a bit for being irritated at not being able to eat much. I can eat lots of things, and still get irritated.

Do well,

Pam

illoozions said:

Blending food for spouse
Hi Staceya

I am sure that many of you have tried this, but I see no mention of it in the posts. My husband is just getting started in treatments and had to have all his teeth out. He wanted a hamburger and beans but could not come close to eating this, so I cooked the hamburger and threw it all in a smoothie blender, with a little liquid. It came out with a "baby food" consistency, but the flavor was still there. I know that it sounds yucky, but it gets the job done. Once he loses his ability to taste the food it may be more of a challenge. I can at least keep him well nourished by blending high calorie foods "avocado, bananas, chicken, etc.. Threw a chicken pot pie in there with a little water to bring consistency to thin oatmeal and that worked great too.
Lynette

Calorie Intake
Hi Lynette,

Taste does definitely help getting calories in you, but like you said more than likely in the future taste will be minimal if nothing else than just plain bad....even water tasted nasty to me.

But Roger is tough, and you can keep him focused. During that time, like I mentioned Ensure Plus or comporable will be his main source of calorie intake (or least was for me).

I could barely taste the Strawberry, but the main thing is just getting it into him and maintaining as much weight and nutrition as he can tolerate along with fluids. I tried Gator-Aid, but eventually all of the fluids just got old really. Water has always been the best thirst quincher for me, but even water tasted bad.

It's just something at that time that needs to be a mind set. Do what you have to to get the calories in you, even though they taste like crap, hurt to swallow and are just plain hard to take in.

It becomes a day to day thing, concentrate on doing what you have to, rest when you can and repeat it again the next day. Eventually you'll be on the down hill side and every day down is another day closer to finishing treatment.

That's how I dealt, but everyone is different. Knowing that Roger spent so much time in the service, I know he is tough and can handle this...he can beat the tough times.

When he makes it through and starts feeling better and regains some taste. My treat at the Red Elephant for burgers this time....

If I can help or he needs a ride or someone to sit during Chemo or treatment, let me know and I'll try to make it.

Good Luck, God Bless and Stay in Touch,
John

dealing with dry mouth
I"m three years out from my surgeries, radiation and chemo therapy and I cannot eat solid foods. I can swallow just fine. I can't get the solid foods back to my throat. I have near zero saliva which is needed to create a bolus around the food and help get the food to the back of my throat. Not gonna happen. Also, solid foods feel like sand paper (because I have no saliva).

I have to drink all my nutrition.

My diet consists of 5-6 cans of isosource each day. I made a deal with the owner of the local restaurant down the road, the Fairway near Swansboro, NC, to make me strained soups. I pick up a gallon of soup each Saturday. I do clam chowder, red pepper, and shrimp bisque. I can also do cream of broccoli and cream of mushroom.

I virtually have no taste. Everything I eat must be bland. No spices. Even olive oil burns my mouth. I eat ice cream but I cannot taste it. It tastes cold. I have to let it melt first, to warm up. I cannot do citric juices but I do V8 to get my veggies.

The GOOD part is, is that I've always been an utility eater. I ate because I had to. I don't go goo-goo gaa-gaa over food. The BAD part is, is that I've been told that drinking isosource alone for long periods of time causes other weird diseases of your internal organs. That's why I'm trying to eat 'real people' food, rather drink real people food.

Traveling is a pain. I have to ship my cans of goo to the final destination so that I have something to eat.

It was a big 'mental' step to go from the feeding tube to mouth feeding. I used to replace my own tubes because the hospitals charged too much to replace them.

I am just starting to get that 'hungry' feeling. I never really was hungry during treatment. I also gained back the 20 lbs I lost.

My worst problem today is chronic dry mouth. I tried many, many commercial products and none of them helped. Sipping water is best but carrying a bottle around is impractical and besides you can't sleep and drink water! So I developed what I call the dry mouth pump. It squirts tiny amounts of water (or anti bacteria solution) into my mouth at regular intervals even when sleeping. I no longer wake up with my mouth parts all stuck together. Sometimes I apply petroleum jelly on my lips so they won't get dry. You can read about my pump at drymouthpump.com.

In the mean time, bon appetite!

Scambuster said:

Altoman
Hi Altoman,

Whoa, what a story. Sorry to hear to have not recovered your taste and saliva ++ but you sound to be very positive about getting on with things. I am curious if you have tried L-Glutamine powder, which should assist the healing and help stop the burning you get with many foods ?

Also, i posted earlier a bit about Green Smoothies. They are a great way to get loads of essential nutrition and phytonutrients into you body with minimal effort. You need to read up a bit as you have to rotate the veges to avoid over supply of some Alkaloids, but the benefits far outweigh the negatives. There are plenty of web sites covering Green Smoothies.

I am about 8 months out now SCC Left Tonsil - surgery, IMRT 7 weeks 2 x day + Erbitux. Had a very rough time during treatment.

I used L-Glutamine right through treatment and still take a heaped spoon every day to help the recovery. I can tolerate all foods though I am sensitive to spicy foods and hot (Temp) foods. I am pretty much vegetarian now as all good studies I have read, clearly indicate the danger to Cancer people from eating animal proteins. I feel better now than I have in years. The green Smoothies may help you get away from the Dairy Goo you are using. i hope so anyway.

As for the spit, I started Acupuncture a few months ago and seemed to have recovered about 10-15% of my saliva. not much but makes a huge difference, even that little bit. I still need water/soup when eating and dry out badly during the night, but it's bearable and beats the alternative.

I am very interested to see if the above helps you Altoman.

All the best to you and tx for sharing your story.
Scambuster

problems eatting
I find with no l/s larynx working it's like pushing a door open, you choke for a while, anything with a gravy, or butter base works, cream of wheat, gravy, and chicken noodle soup with half and half and butter is great. i take my pain pills an hour before and that helps alot. i took a chance today and took a hour to eat a wet burrito for lunch, ouch, but i wanted it so bad....it's trial and error and after seeing alot of the postings, i'm doing better than i thought. thank you for everyone posting. Dennis. p.s chocolate malts are standard now, and ican tolerate acid more, it doen't burn. Last radiation to throat was January 25th

Scambuster said:

HI Jen
I have pasted in some info below, but essentially it will help heal the tissue in the mouth and throat. It also helps prevent muscle loss due the rapid weight loss many of us suffered. It is naturally occurring and from all my studies, it should not interfere with the Rads or Chemo. I found it great to swish and swallow as it stops the burning he will get from eating many foods for quite a while. During recovery, this very useful. You just mix a spoon or 2 into water, juice or even his PEG food. Apart from the anti-burn effect, you will not notice immediate effects, but it is regarded as very good to help healing and general metabolism of what food he is getting in.

Regds
SCAM

==========What Is Glutamine Used For ?

Glutamine is the most abundant amino acid in the human body and is involved in more metabolic processes than any other amino acid. It is extensively used as a fuel by various organ systems. Research has shown glutamine to be integral in the proper function bodily functions.

Glutamine has been used in treatment or management of numerous conditions and diseases, including burns, colorectal cancer, Crohn's disease, HIV/AIDS, inflammatory bowel disease (IBD), irritable bowel syndrome (IBS), obesity, peritonitis, radiation damage, sepsis, ulcerative colitis, and wound healing. It is also used for muscle growth in weightlifting, bodybuilding, endurance and other sports. Glutamine is also used as an adjunct therapy for decreasing carbohydrate, alcohol and/or cocaine intake. It is used to assist people in the management of sugar craving in diabetes. Glutamine has also been used to enhance brain function as it fuels two of the brain's most important neurotransmitters. It has been used to aid memory, increase IQ in those with mental retardation, and to support people with schizophrenia and senility. It has also been used in the treatment of ADHD, anxiety and depression. Glutamine is also used as an anti-inflammatory in the treatment of autoimmune diseases and preserves glutathione, important for detoxification and immune support, levels in the liver.

However, the small intestine is by far the greatest user of glutamine in the body. It has been seen that lack of l-glutamine leads to a loss of epithelial cell integrity in the lining of the intestines. This, in turn, may allow toxins and infectious agents to enter the body.

Eating
I am one year out of treatment, 35 rads and 3 cistplatin. One year later I believe I have an appetite now larger than before treatment, I can taste everything, no problem swallowing. Treatment was rough, I had a peg and started using it 4 weeks into my rads, and 3 weeks after rads. My weight is back and energy seems to be normal. I do suffer a little from dry mouth but it has improved 70% since last year. I was out fishing on the ocean a couple of weeks ago and had no food with me, I had plenty of water. But as the day wore on I got drier and drier. Found out that water is not the only thing to spur saliva, saliva production relies on food also. So you see, it does get better, I was miserable right after tx but noted in a diary how I felt everyday, I look at that diary now and I can see progress in my own words.

denistd said:

Eating
I am one year out of treatment, 35 rads and 3 cistplatin. One year later I believe I have an appetite now larger than before treatment, I can taste everything, no problem swallowing. Treatment was rough, I had a peg and started using it 4 weeks into my rads, and 3 weeks after rads. My weight is back and energy seems to be normal. I do suffer a little from dry mouth but it has improved 70% since last year. I was out fishing on the ocean a couple of weeks ago and had no food with me, I had plenty of water. But as the day wore on I got drier and drier. Found out that water is not the only thing to spur saliva, saliva production relies on food also. So you see, it does get better, I was miserable right after tx but noted in a diary how I felt everyday, I look at that diary now and I can see progress in my own words.

Thank you
for your positive post. Glad you are doing well, it give my so much hope!