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social situations and travel

buzz99's picture
buzz99
Posts: 404
Joined: Sep 2010

I was wondering what to do in social situations involving eating. Do you stay away from restaurants? We were able to attend a large social gathering at a pizza place recently without anyone even noticing Buzz nursing a bottle of gatorade which he brought along. In a small group I think it would be noticed. The guy across the table had a beer and boy did that look good to Buzz. I feel so badly for Buzz. Food looks good to him but he feels he can't handle it. We are planning a weekend trip the end of March. I guess I can eat take-out in the car and Buzz can have his liquids. Can cans of tube feeding be kept in the car in a cooler? What have you veteran survivors done in these instances?

rozaroo
Posts: 665
Joined: Apr 2010

Good question! I was never one to miss a party so I usually brought along a ensure plus if it was my meal time. Also, Restaurant's usually make non alcoholic shakes & are happy to oblige. The only time I find it difficult is when someone is rude or stares. There are a few
tacky people out there that I would love to plow. But have learned how to deal with that. I would also order ice cream if I was in the mood. Other than that go out & have fun & live your life the best you can.

MarineE5
Posts: 784
Joined: Dec 2005

Buzz99,

When I was going through all the recovery period from my surgery and had the Trach removed, I was able to start eating soft foods and also had the PEG Tube. I didn't want to miss any social affairs as we wanted to get back to normal as soon as possible.

I let everyone know right up front that I would more then likely take in my nutrition cans at home and looked forward to seeing everyone at the affair/ event. I would explain that I would find something on the menu to nibble on. Be it a bowl of soup or anything that I felt I might be able to take little bites of. This allowed my wife to dine with our family and friends and I was able to enjoy everyones company.

By letting everyone know that I had taken care of myself first, allowed them to have a good time as I sipped a room temperature cup of coffee, a soup and maybe try some dessert.I don't remember anyone being offended or anyone offending me.

As far as the cans of nutrition, the cans I had could be stored at room temperatures unless opened, then they had to be refrigerated. I just made it a habit to only use what I needed without any leftover nutrition. I was suppose to take in 7 1/2 cans a day. So, I either took in 6,7,or 8,depending on how hungry I felt. Now I didn't have to worry about opened cans.

Do what ever you both enjoy doing, each day is a Gift.

My Best to Both of You and Everyone Here

areomech's picture
areomech
Posts: 33
Joined: Sep 2010

In the beganing of my treatment social situations where not bad or uncomforable, but when I was at my worst. I found that people were really supportive and did not pressure me. Unfortunately you will find people that rude and scared when they see us cancer survivors out and struggling, it's because they think they see someone dying instead of surviving. My advice is do as many social situations and travel as you can. I got so depress I lock myself in my room and shut my wife, family and the world out. I end up missing alot of family and friends events. I regret locking my self out. The more thing you can do the better off you are. As for food don't be afraid. Because of my fear and depression I did not eat or drink for 55 days. I lost over 100 lbs. My wife and doctors had an intervention and got me the support I needed. I am now 8 weeks out of tratment and can eat a lot of diffrent foods with no fear. The first food I tried was Progresso soup chicken and rotini. The chicken, pasta and veggies were all soft and easy to swallow with discomfort to me. I hope this help you.

keep up the good fight
Mike

deb e19's picture
deb e19
Posts: 15
Joined: Feb 2010

I find that sometimes it doesn't matter but others it does. I do sometimes get real depressed because I want to eat so bad. If it is a casual situation I usually do real well but when it is more of a formal situation I just don't want to be there. I get so aggravated that my brain thinks I can eat anything but when you take a bit, well we know what happens. I am 7 months post rad and I feel like a morning period and it will be better after I get through a year and know better at what I can and cannot eat. My eating is slow to come back and I am still on a peg. I get about 500-650 calories down and then do can feedings at night on a pump. I really admire others who do so well at all of this and especially in social settings, eating situations.
good luck and blessings deb

abbimom's picture
abbimom
Posts: 82
Joined: Sep 2010

I was in college when I went through treatments. When I returned to school I would still go out to eat with everyone but I would not eat at all. It is hard in the beginning but I really got use to going out with my boyfriend and watching him eat. And when I started I would get milkshakes. Even now I hate going out to eat with people that don't know what happened to me. Every time I have to explain why I ordered milk and tons of sauce with my meal. After 11 years I've stopped worrying about what everyone thinks but I do hate how slow I eat. If I go out with friends I get two bites in between talking and then we get the check. I know it is hard but soon it will be a norm to you. I can't remember what it was like to go out to eat and actually order exactly what I wanted. Now I order what I can eat the easiest. Good luck!
Linda

Hondo's picture
Hondo
Posts: 6177
Joined: Apr 2009

Most of my friends at work don’t call me any more for Lunch because I take too long eating. It’s sad that they don’t understand what a trail it is for me just to chew something and then swallow it. But that is what we can expect; the way I look at it is that real friends don’t mine and will give you the extra time you need and stay and talk with you. Why because they understand what you went through and are glad you are still here even with your new normal you.

All the best to you Buzz.
Hondo

HAWVET's picture
HAWVET
Posts: 318
Joined: Apr 2006

I had been thinking that maybe some day, we will all be together and can enjoy our conversations without worrying about each others food intake. I continue life as normal and have been to state and national conventions. Am retired now.

My intake is worse, but I try and survive. At parties, I eat before going and nibble at whatever is possible. I seldom go out to eat, but may have lunch consisting of a soup and some type of sandwich or extremely moist pasta. I leave the sandwich on the plate (tuna, egg salad or similar), slice off a piece and dip it in the soup.

I just returned from Las Vegas this past Saturday. The trip takes 10 hours after boarding the first flight. I eat before leaving and buy a fruit bowl at the airport facilities. That would be my snack since we fly mostly on the red-eyes. In my earlier days, I could eat a tomato sandwich.

I used to carry instant cream soup, but found other ways to moist my sandwiches. In Vegas, my meals are mostly at the buffets. My heaviest meal at the buffet is breakfast consisting of egg omelet with onion and tomatoes. I then head for that cream thing on buns. I cover the entire omelet with that creamy mixture.

There is more, but it should give you a general idea of my survival methods. I forgot to mention, airport security does allow an empty bottle container. Just before boarding, I take a last sip and dump the contents out. Then, I refill it when in the secured area or buy a three plus dollar bottle of water.. A filled container with a doctor's statement is allowable, but it is so much hassle. If the boarding line is long, I have a one ounce Oasis spray moisturizer filled with water. That goes in my quart size ziplock allowble through security.

SASH's picture
SASH
Posts: 290
Joined: Apr 2006

The first social event I dealt with after treatment was a party for my birthday 27 days after surgery. While I wanted to have a centerpiece on the table of a cows tongue that didn't fly. Before everyone got to the house, I fed myself 2 cans of nutrition through my peg. This was to fill me up to some extent before we sat down to a Sunday brunch. Things that were made were soft and easily could get down. I just took small amounts and small bites. While I had the control over the foods served, who was there, etc. it was the first time I was with people in this type of environment.

About 8 months later and now eating regularly and no longer with the PEG, I went to a big family event in California. This time I had no control over the foods being served, who I was with, etc.

I flew in on Thursday with my dad, to give myself time to relax on Friday before the parties started. Friday night was a lavish sit down dinner where they had very high end food. The main course was a veal chop. Even though it was tender there was no way of chewing it with no molars. While I wasn't the only one at the table to not eat the meal, others were because they were vegetarians, and I just would chew and chew on the first bite for 20 minutes before excusing myself and going into the washroom to spit out the piece of meat.

I had similar issues the next day with what foods were served.

Going to events like this, I have learned that I might not be eating with everyone, but I do take the meal and make it appear that I have touched it. Then after leaving, I know how to stop and pick up something to eat that I can chew and swallow.

Now when going out, and I have some control and say on where we go and the types of food we are going out for, I look at menus online to make sure that there is something for me. Most of my friends and family understand that I no longer eat like "most" people and they go along with my suggestions on the type of food we go for.

sweetblood22's picture
sweetblood22
Posts: 3228
Joined: Jan 2010

And restaurants. When I was only getting nourishment through my peg, it was too much for me to do. . I couldn't handle seeing and smelling all the food when I could not eat anything at all by mouth. If I go to someones house it is usually a bring a dish kind of thing, I make sure I bring something I can eat and I do not go hungry. I eat at home first. If it's a function where its at someones house and I can't bring a dish, I bring a BoltHouse Farms drink or smoothie.

I just went Friday for my first dinner. My parents gave me plenty of time. Two and a half hours! Perfect. :) I pulled up the menu on line so I had an idea of what I could eat. I had asked for milk to drink and they had it. My family wanted to go to Ruby Tuesday. I had an avocado quesodilla. I asked for all the toppings on the side and extra sour cream. I also ate before I went so that if I couldn't eat anything I wouldn't be hungry, overwhelmed or frustrated. We went to see a comedy show after, so I didn't want to be without food all night.

Yesterday I met a friend at Perkins and I did pretty good. I wouldn't go though if it was with people who didn't give me enough time or make me feel pressured. Can't deal with that.

I haven't really traveled too much. Just drove back to NYC a couple of weekend visits. My friends were very accommodating with my food needs. One had thyroid cancer and the other visit with a friend, she is a nurse. So they are hip. The nurse friend asked for a list of stuff. I told her easy things she would probably have at home anyway. She has kids. Whole milk, eggs, sweet potatoes, and butter. Then I brought a cooler with my own yogurt and drinks. The friend that had cancer, he took me grocery shopping when I got there and he did a good job cooking so I could eat.

ekdennie's picture
ekdennie
Posts: 231
Joined: Aug 2010

when I was still barely able to get anything down, I would just call ahead and ask to speak to a manager. They said it was fine to bring my drinks with me (I didn't have a PEG tube) and then they made a special meal just for me. It was to a mexican restaurant and I ordered a cheese enchilada made with a flour tortilla and tons of sour cream sauce...heart attack on a plate, but it was soft and I could take a couple of extremely small bites...my kids were so excited that mommy was out to eat with them that it didn't matter that I only ate three bites, that I had to open a boost and that my water was without ice and that I also had a glass of whole milk.
I ordered whole milk everywhere we went early on...I don't as much now, but I knew that if I got some milk then I would have had some calories. I even took a bottle of milk in my evening bag to a christmas party...everyone there knew that I had just finished radiation, and they were just so happy to see me up and about that they didn't care that I barely ate and that I had my milk with me.
I would ask your doctor about the tube feeding cans...I think as long as you change the ice daily it would be okay...in stead of eating in the car...picnic...make it more fun for you both!
there is still a lot I can not eat, there are somethings that I will try and regret, but it just takes time...I sure to miss hot and spicy foods though, especially when those around me are enjoying theirs! I also make a lot of my own foods that are bland enough for me, then I add spice for my husband. or with pasta, I pull his out, leave mine in to cook longer and then we both eat together...the kids haven't noticed...and they notice everything! :)
wish you a wonderful trip!
hugs!

sportsman
Posts: 97
Joined: Feb 2010

It has been over four years for me now since I have been in a restaurant. I often tell my wife that I enjoyed my what now call "My Dead Man Walking" (Got this from I think a old Sean
Penn movie) meal of steak, potato, salad and bread in a Logan's Steakhouse in January of 2007. Even though I was able to eat for about two weeks after radiation started I ate at home during this time. I now can only slightly remember the last hot dog I ate or the last blueberry or banana nut muffin I ate for breakfast just before the radiation really kicked in and kicked my butt. After about six months on the PEG and losing fifty pounds I started to try to eat again to get rid of that dreadful PEG. My wife now experiments with all kinds of food that she processes through a chopper to see if I can swallow it. We have had some successes but many failures with this. Besides my regular meals I use a fortified pudding my wife makes for me and drink the Wal-Mart brand Ensure at least twice a day. The Wal-Mart brand Equate nutritional drink is just as good as the genuine Ensure. Be sure to use the Equate Plus as it has three hundred and fifty calories per bottle. This is about one dollar cheaper that Ensure per package of six. I do not do social functions at all now however I will eat in front of my immediate family. I guess I just have not got the courage up for my friends and others to see me struggle to eat. Also any and all of our travel is done by me carrying my specially prepared foods as well as my nutritional drinks and puddings. As I am retired now and had planned to do quite a lot of traveling I am now only able to travel sporadically. It is really tough to live like this and only now eat to survive rather than to eat to enjoy. I can't compalin too much however as there is many people out there with far greater physical problems than mine. God gave me fifty eight and one half years of physical health. During many of these years I felt like I did not have to depend on him to get through the day. I now realize I must depend on God to just make it one day at a time. I pray for all my dear friends on this Web Site who are afflicted by this terrible cancer as well as all cancer. I also pray and ask you to pray with me that cancer will be wiped out in our life time. God Bless you all

Scambuster's picture
Scambuster
Posts: 973
Joined: Nov 2009

Earlier on, going out to restaurants was very difficult till I could actually take food by mouth without the pain. Then I would just have soup and order it early so it would be cool enough to eat. If you start with others with their appetizers, and tell the staff to bring out the others' main courses when they are ready, and then we would finish togther.

I can now manage a few more solid things but mainly stick to my vegan diet and order salads and soups, grilled vegetables. Always with extra Olive Oil on the side (great lube and good for you), and a mineral water.

I find, if I have a large breakfast of cereal and fruit with a supplement shake every morning, that is plenty to keep you going all day, so a soup or small soup/ salad at lunch is sufficient.

When I travel, it can be harder, but I always take enough supplement mixes (powdered satchels) to top up if I feel I didn't get enough in that day. I can buy those small tetra packs of Soy milk (220ml) in most 7/11 type stores world wide, mix it up in a glass and that's a meal I can drink down in a minute. Easy.

Eating is now more about nutrition and health rather than a pleasurable experince. I find I do enjoy good salads with a nice healthy dressing, so I have re-priorities my 'enjoyment' in eating to being happy to discover and eat a healthy meal and knowing it will do me only good. I select my eating places based on what they have.

No doubt, dinner time can often be a disappontment (not salad again !!) But at those times, I just reflect for a moment and realize how lucky I am, with friends and family around me, and to know so many have so much less than I. This is an important part of the new life.

Buzz will have to work that one out for himself. As a carer, finding the things he will enjoy, and that are good for him is the best you can do. Eat smaller doable meals out, and top up before or after with a health shake.

The other parts of my life are now bigger: time with my little kids, family, watching a movie, trips away and my weekend bike rides are now more a focus of my enjoyment.

Regds
Scam

fisrpotpe's picture
fisrpotpe
Posts: 1344
Joined: Aug 2010

Go and do the best you can and do not worry what others think or see. You are blessed to be alive and doing well with slow recovery but it is all about quality of live. If your with friends they will understand. I shared all my problems with friends and the real friends did not care they asked and wanted us to go with them. This is one point when you find out who your real friends are.

Ask the resturants, they will do most anything. You will be amazed how many soft foods are out there once you get out and about.

Good luck, Have Fun, Enjoy the Time.

John

Oh ya keep the smile going!

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