diet and emotional support

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diet and emotional support

by jujucat on Wed Jun 06, 2012 10:51 PM

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Greetings,

I am so glad to find this site . I have felt so alone the last few years. My original dx of head and neck was in 2009. Had lots of brutal treatment and doing well EXCEPT-I have NO salivary gland function as a result and another condition in mouth that further limits what I can eat.

I would like to meet people who would be willing to exchange receipe and food ideas as well as discussing the handling of the emotional part of no longer being able to participate well in our food centric culture. Travel tips etc..

I look forward to meeting you.

RE: diet and emotional support

by Julesalso on Thu Jun 07, 2012 11:31 AM

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Hiya jujucat

I think we can all relate to feeling glad to have people to share our experiences with.  :)  I have very little to no saliva and struggle with eating.  

I am happy  to exchange recipes and ideas with you and have started a thread for recipes but we can do it here if you like? 

Julie

RE: diet and emotional support

by paularae on Thu Jun 07, 2012 02:57 PM

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jujucat,

I am also a three year survivor of nasoparyngeal carcinoma.  I too have limited saliva.  This has been the biggest challenge.  Through trial and error, I have found what is easy for me to eat and what I cannot eat.  I eat eggs, oatmeal, and pancakes with lots of light syrup.  for lunch I have mac & cheese, yogurt, cottage cheese with fruit, for dinner I have found spagetti with whole grain pasta, shrimp with butter garlic, or I use a vodka sauce with the pasta.  I make whipped sweet potatoes, and any vegetable that I can steam soft enough.  I have even had steak and chicken, but I have to grind it in the processor and then put any kind of sauce.  When i want something quick, I just heat up a can of cream of celery, or mushroom soup, I add a can of mixed vegetable, and a can of navy beans.  I make enchiladas, with ground meat and taco spice, refried beans and corn tortias, I cook in the oven with the sauce either red or green sauce, add shredded cheese,bake at 350. Cut up lettuce, tomatoes and make guacamoli, sour cream.  It is a matter of finding a sauce that you like.  I keep atkins protein shakes at hand, high protein, low sugar.  I cut up fruit and eith just add almond milk.  I also make fruit shakes in the processor with ice, or if I want a treat, I add ice cream and some protein powder.  I also make tilapia with a lemon butter sauce.  If you need more specific recipes just let me know.  When I go out to eat, I just ask for extra sauce, or gravy.  Hope this helped.

Paula 

RE: diet and emotional support

by Sdurnell on Thu Jun 07, 2012 04:28 PM

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Juju,

I have a saliva problem as well, plus new dentures which make eating harder.  One trick, of course, is always to have something liquid, usually water, to wash things down.

I have been craving a certain bread, which of course I can't eat.  So whenever this happens, I make a pot of vegetable soup with beans and plenty of liquid--chicken stock and tomato sauce.  Then I cut the bread up into "croutons" and drop it in the soup.  It's a crusty kind with a lot of flavor that comes through fine when it's soggy.

I still can't chew most raw vegetables, and even steamed ones were too hard at first.  I just cooked mine a little longer so they were softer.

I try to eat plenty of fruit and/or cooked vegetables with each meal.  Chicken, even cut up small, is a challenge.  The other night my husband made some chicken with pasta and veggies, but it was too dry.  I added a can of chopped tomatoes, and that made it soupy enough to eat.  I make sure to get some tomatoes or other vegetables in each chicken bite to help mush it up and make it easy to swallow.

Every morning I make a "smoothie" of sorts in a little blender.  I use a yogurt, plus a little Greek yogurt, and fruit (canned, fresh, and/or frozen).  I like to eat mine rather than drink them, so I add baby oatmeal to thicken it.  Yummy!  You can also make them drinkable, and vary the recipe by adding other ingredients--protein powder, ground flaxseed, ice cream, cottage cheese--use your imagination!

When I was having more trouble swallowing I also made veggie smoothies with unflavored yogurt and tomatoes, peppers, avocadoes, and whatever other vegetables that  sounded good.  I often added some mild salsa for flavor.

Omelets are wonderful too.  I fill them with cooked vegetables, like peppers, onions, and asparagus, and add chopped tomatoes and olives at the end.  Often they are more like veggies with scrambled eggs.  I use two eggs, but only one yolk. (I cook the other yolk up and divide it as a small treat divided among the cat and two dogs.)  If it's still too dry, mild salsa really helps.  I make these things huge, with lots and lots of veggies.  They are nice and filling.

When eating out, I usually order soup.  It's quick and easy to eat.  I find that whenever I am eating with others I am always the very last one done, often by a long time.  So I usually order light and have a bowl of ice cream when I get home. 

You can also check out the salad bars--in some restaurants there are lots of things that go down easily;  just skip the lettuce (I find spinach much easier to eat). Dressing is a big help with salads too. 

Some places will let you order side dishes like cottage cheese, applesauce, mashed potatoes, etc.

If I am ordering a whole meal, I go with something like white fish and steamed veggies.  In a mexican restaurant I order something saucy.  I can handle some tortillas if they are a bit mushy, and tamales are pretty easy.  Refried beans are great, as is guacamole and mild salsa (I can't tolerate spicy food anymore).

When I was in AZ recently I ate at several Mediterranean restaurant with my vegan brother.  They have lots of smooth and pureed dishes, although I don't remember the names.  The food was delicious, and wait staff very good at helping me find things I could eat.

For some of us, keeping weight up is a problem.  When I was first eating by mouth again several months ago, I was worried about this, determined to use my tube only for meds.  Ice cream was definitely my friend!  Some days I ate it three times!  Right now I'm down to once.  I like vanilla with pureed fruit (peaches, apricots, or berries mostly), which makes it a little bit healthier. Using the ice cream along with lots of fruits and veggies, yogurt and eggs, has helped me maintain a healthy weight, and my tube is no more.

Surprisingly, rice was one of my biggest problems, but I found that if I cook it longer and with more water, and especially with added veggies and sauce, it is softer and forms a "bolus" (ball) more easily, making it easier to swallow.  Some Mexican (or "Spanish") rice and some "sticky" rice fits the bill.

Best of luck to you and everyone with this annoying problem.

RE: diet and emotional support

by jujucat on Thu Jun 07, 2012 06:10 PM

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HI Julesalso,

Thank you for repling. I am new to this whole concept of message boards (lame I know-lol) How would I find your "thread" for recipies and ideas ?

My repatoire of foods is so limited by not having any salavia and an auto-immune disorder in my mouth that as I said further limits what I can eat.

For example I am no longer able to eat any type of meat so have vegetarian by necessity but am also very restricted as to spices and things like no tomatoes or raw vegi's. I have become the home soup queen-lol making my own every week.

I am so excited to meet you and can't wait to participate in your food thread.

RE: diet and emotional support

by jujucat on Thu Jun 07, 2012 06:37 PM

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Thank you paularae for responding. You sound like you have had to experiment a lot to find what works for you. For me it sometimes gets to be exhausting and frustrating trying to find the right things.

My key words are wet and slippery-sounds so appetizing doesn't it-lol.

I can no longer eat any meat as I have no salvia to break it down so it just spins around in my mouth like rocks in a cement mixer and never gets smaller so I can swallow it.

I do eat eggs but can only have them fried or in a really "wet"-lots of mayonaise egg salad receipe I have created. Scrambled is too dry, "shired" works also.

Yogurt definatly a staple as is cottage cheese, wet mac anc cheese. I do roast sweet potatoes as often as once a week.

I primarly make my own soups every week and make one bean soup for the protein and then something else always vegetable based and yes the beans and vegis are cooked very soft like you.

I am limited in the smoothie area because I can't have so many fruits. I can do frozen peaches which I like mixed with greek yogurt and almond milk.

I too keep some protein shakes handy, get mine from costco but really not a big fan of the taste ( I have tried many) also don't like whey powder.

As I said the bummer is being SO restricted, on the other hand it has forced me to become highly creative.

I have an autoimmune issue in my mouth as a result of radiation treatment so that wipes out a lot of things-if I eat them I get painfully sore blisters in my mouth almost immediatly , these foods  also sting and burn when i put them in my mouth. Oh the fun.

So I have to avoid any acidic -tomatoes, lemons, lime, oranges, almost all fresh fruit except melons cause blisters. No raw vegetables as I have no way to brek them down . Cooked vegi's very soft but no "stringy" vegis like aspargus, no lettuce,spinach etc..I can use frozen spinach chopped in my soups but it can be a lot of work to eat. No breads, pancakes, waffles-I have poured enough syrup on them to flood the kitchen but still can't do it :(.

No crackers or anything dry ,no peanute butter or other nut butters-too dry. However I have been able to put a spoonful of them in a smoothie.

I do love ice cream ! I could make a meal out of it but of course that's not too healthy -lol. What's your favorite kind ?

Thank you for all your suggestions. I hope we can keep in touch. Would like to talk to you more about the "eating out" thing.

Take care

RE: diet and emotional support

by jujucat on Thu Jun 07, 2012 06:54 PM

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Dear Sdurnell,

Yes, Yes to the water thing ! I carry around my camelback water everywhere because I have to take a sip of it everyfew moments or I can't talk and feel like I can't breath. Oh the joy of no salivary glands. I carry extra bottles in my car.

Water and hot chocolate are the ONLY beverages I can drink.

Like your idea about the croutons, I also can't have any type of bread of cracker. As you might read in my other replies I can't eat raw vegis either and cook to death all others. No baking potatoes-too dry no matter how much butter or gravy goes on them but I can eat roasted sweet potatoes which I love.

It takes some work to eat but I did discover I could make a simple grilled cheese sandwhich and dip each bite in chicken or beef broth like a french dip till it was somewhat soggy then chew slowly.

I do like thr frozen cheese tortillini and put Trader Joe's alfredo sauce on it. The sauce is cheesy but mild (I have issues with spices also) Sometimes i will throw in some frozen peas at the end of cooking time-try it sometime.

Look forward to talking more with you. I so appreciate your response, it has made my whole week to finally find other people like me. Thank you

will have to try adding baby oatmeal to my smoothies, that might be pretty good.

RE: diet and emotional support

by Julesalso on Fri Jun 08, 2012 10:38 PM

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On Jun 07, 2012 6:10 PM jujucat wrote:

HI Julesalso,

Thank you for repling. I am new to this whole concept of message boards (lame I know-lol) How would I find your "thread" for recipies and ideas ?

My repatoire of foods is so limited by not having any salavia and an auto-immune disorder in my mouth that as I said further limits what I can eat.

For example I am no longer able to eat any type of meat so have vegetarian by necessity but am also very restricted as to spices and things like no tomatoes or raw vegi's. I have become the home soup queen-lol making my own every week.

I am so excited to meet you and can't wait to participate in your food thread.

Hiya jujucat 

Forum posts often take on a life of their own and we can just leave it here and talk about recipes, tips and hints or whatever flows.  It seems to be doing that now and it is no drama to me.  :)

What type of soups do you make?  There is a website for sjroedjens disease that has a lot of recipes for dry mouth.  

My mouth is tender at times and I also still lose my taste buds on occasion.  Mostly everything I eat has a sauce.  I find toast easier and safer than bread and as someone else mentioned consume water to get it all down.  Sometimes I think to myself what is going to taste the best with a sip of water with it.  

Julie

RE: diet and emotional support

by Sdurnell on Sat Jun 09, 2012 07:29 AM

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Juju,

I'm so sorry you can't eat tomatoes!  I like to use them to sog everything up.

I have not been able to eat pizza;  usually just peel off the toppings.  But last night we had some with a soft crust and the leftovers today were even soggier--just the way I needed them!  Can you tolerate anything like that?

Pureed peaches (actually baby food) was the first solid food I ate--indescribably wonerful!  I still use them on ice cream and in smoothies, sometimes with a little cinnamon. 

I find that my sense of taste goes and comes, so I like food with nice mouth feel, as sometimes that's all I can really detect.  Smoothies and soups and ice cream are all good.

I love asparagus, but can't really bite things, so I cut it up into small pieces and use it a lot in soup or mixed with other veggies.  I also cannot eat raw vegetables, and sometimes have to steam mine more than for the rest of the family. 

For potatoes, I cook some onions in olive oil, then add them to a mixture of steamed white and sweet potatoes mashed with Greek yogurt and some milk. 

I do have a terrible time with meat, but have found ham cut into small cubes is easy to handle.  I can also eat white fish steamed or otherwise cooked to falling apart, and small scallops--my favorites--especially in soups.

Peas are great in lots of things.  I just throw a handful in at the last minute or thaw them in water before adding.

I can also eat gooey potato salad, made with lots of mustard, pickle juice and sour cream (my husband doesn't eat eggs, so no mayo).  The onions can be steamed with the potatoes, and I also steam some carrots.  You can add lots of things--peas, olives, finely chopped pickles.

My sister in law sent me a cookbook from SPOHNC (Support for People with Oral and Head and Neck Cancer), which I have not looked at yet.  If I find anything good there, I'll pass it on.

Susan

RE: diet and emotional support--Cookbook

by Sdurnell on Sun Jun 10, 2012 10:39 PM

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OK, I've found my SPHONC cookbook, written by and for patients and caregivers of head and neck cancers.  It's got a lot of recipes, and you can adapt many of them to ingredients that you like or have around.  There are recipes for all stages of treatment and after effects.

It can be ordered for $20, shipping included, from SPOHNC, P.O. Box 53, Locust Valley, NY  11560.

Thanks for creating this post and reminding me I have it!  Eating takes me a long time, and so it's nice to have recipes that are easy to eat but can also be fed to the rest of my family.

Susan

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