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Introducting myself

honeybelle22's picture
honeybelle22
Posts: 70
Joined: Feb 2011

.

Hello to all. I would like to introduce myself and tell a brief story of my experience. Jan. 2010 I was diagnosed with tongue cancer. I had a tumor there and Every it was also in my lymph nodes. They where the size of golf balls in my neck. Pet scans, MRI, CT scans showed that it was confined to my neck. My ENT wanted me to do the radiation and chemo route and no surgery to remove the tumor.
So, last year I had 28 radical rad treatments with 7 treatments of chemo...Cisplacin. Had no nausea due to 3 diff nausea meds BUY like all of you 3 weeks into treatment lost ability to eat. I already had peg and port in. All in all I did pretty good. No hair loss BUT from then till now I lost weight...went from 143 to 107.
The major loss for me was taste and have excessive sticky saliva that catchs everything I eat. At the beginning of Sept. I had another node pop up under my ear...in for a needle biopsy. CT and PET scan showed tiny mass in neck and again nothing in rest of body. So, my ENT put me in hospital to remove lymph nodes..hmmmm...but wasn't there but in my paroid gland...so that was removed. Waited 2 mos. for healing and started shallow radiation on neck for tissue that might still have cells. 25 treatments...and that ended January 7th.
That's pretty much it in nutshell. Since then have had skin biopsys...eye exams and now waiting for Pet Scan to be done. The type of cancer I have/had is squamacell. Every exam seems ok but never can be sure...BUT... like all of you.. I am positive..pray alot. And now have new friends here.
To help others..I can only say that eating for me is the same as you...It's not easy. Radiation makes your throat swell and I have saliva but like mucus all the time..and sound like a frog when I talk. Truthfully. And have to drink liquids with every swallow. But, before I had the 2nd round of rad...I was getting much and will again..it takes time. LOTS of time to heal.
I hope this helps some. And I am getting great ideas too. Trying to gain weight.....Too skinny.
Thank you for letting me tell my story and looking forward to posting and chatting with all you more.
Roze

ratface's picture
ratface
Posts: 1248
Joined: Aug 2009

Hi Roze

and welcome. The voice gets better. I thought it would never go back to the way it was but it did. Sounds like a tough road traveled. Glad you landed here.

honeybelle22's picture
honeybelle22
Posts: 70
Joined: Feb 2011

I hate it...it comes from all the mucus my throat makes constantly. And everything sticks there. Not very ladylike hacking it up. So. that makes eating a chore. And I can tell you for sure I won't eat in public. I am almost unable to take on phone..no one understands me..and of course lottsa people get a bit brisk with me but I push along.
Monday I go back to Oncologist and bloodwork. Wed --skin doc. And next Monday I go to ENT. I guess he'll schdule scans and stuff.
Thanks to everyone who has welcomed me...group hug...felt good.
Roze

sweetblood22's picture
sweetblood22
Posts: 3230
Joined: Jan 2010

I hate it. I hardly do it any more. I really hate it to talk to those automated phone things. They never understand me. Sometimes when my friends can't understand what I am saying I joke around and do the Jackie Chan quote from Rush Hour II. "Don't you understand the words that are coming out of my mouth?!" =D

I am going to be going to my first restaurant dinner with family in almost two years. To be honest, I am a nervous wreck about it. I have decided to just eat before I go, this way I am not hungry and frustrated if there is nothing there that I can swallow. I may try to order something really small. I decided to bring paper napkins in my bag in case I need to spit something out.

sportsman
Posts: 98
Joined: Feb 2010

Sweet: I read a lot of your posts on here and it sounds like you and I are in the same boat pretty much when it comes to the side effects of radiation. At the end I February I will be four years post treatment and it now has been a little over four years since I last ate in a restaurant. The only people I have actually eaten in front of is my family and this is still hard for me to do. I have to concentrate real hard when swallowing and drink with every bite I take. My family members other than my wife do no understand that I basically can not talk when eating. I think you and I both have severe strictures. I personally have been dilated five times now. Once the food gets past a certain point it goes down fairly easy but I am afraid always on choking when swallowing something. I still feel sad about not being able to go out and eat with my wife, family and friends but this has become a way of life for me. Some people I am around who are eating in front of me apologize for doing so. I tell them there is no reason to apologize that I have learned to cope with it and try to get along with life. I have also read where you have no saliva. I am the same way. I think if I had saliva, maybe just a little that I could swallow more things. I am also having massive problems with my teeth (They were not that good before radiation) in having to have fillings and crowns. This gets expensive as dental insurance coverage is very limited. I guess I am venting tonight but if those of us on here did not have someone like us to vent to it would be more difficult to live. I remember asking my doctors what quality of life I would have after treatment and they advised I would not lose much quality of life. Boy what a falsehood this was. I realize I am blessed to just be alive and should not be complaining as there are others on this site far worse than I. I now just get up and try to face each day a day at a time and live the best possible life I can live. I just hope there is steak and sweets in heaven. So far as talking. Talking is very important to me as I speak to groups of people both large and small. My voice has drastically changed as it sounds like I have nasal problems. I listen at my recorded voice now and the voice message that is still on my answering machine before I got sick and it is much different. I had a friend call me the other day and got my answering machine and thought he had the wrong number. Well again sorry for venting but it did make me feel better. Take care and God Bless!

sportsman
Posts: 98
Joined: Feb 2010

Sweet: I read a lot of your posts on here and it sounds like you and I are in the same boat pretty much when it comes to the side effects of radiation. At the end I February I will be four years post treatment and it now has been a little over four years since I last ate in a restaurant. The only people I have actually eaten in front of is my family and this is still hard for me to do. I have to concentrate real hard when swallowing and drink with every bite I take. My family members other than my wife do no understand that I basically can not talk when eating. I think you and I both have severe strictures. I personally have been dilated five times now. Once the food gets past a certain point it goes down fairly easy but I am afraid always on choking when swallowing something. I still feel sad about not being able to go out and eat with my wife, family and friends but this has become a way of life for me. Some people I am around who are eating in front of me apologize for doing so. I tell them there is no reason to apologize that I have learned to cope with it and try to get along with life. I have also read where you have no saliva. I am the same way. I think if I had saliva, maybe just a little that I could swallow more things. I am also having massive problems with my teeth (They were not that good before radiation) in having to have fillings and crowns. This gets expensive as dental insurance coverage is very limited. I guess I am venting tonight but if those of us on here did not have someone like us to vent to it would be more difficult to live. I remember asking my doctors what quality of life I would have after treatment and they advised I would not lose much quality of life. Boy what a falsehood this was. I realize I am blessed to just be alive and should not be complaining as there are others on this site far worse than I. I now just get up and try to face each day a day at a time and live the best possible life I can live. I just hope there is steak and sweets in heaven. So far as talking. Talking is very important to me as I speak to groups of people both large and small. My voice has drastically changed as it sounds like I have nasal problems. I listen at my recorded voice now and the voice message that is still on my answering machine before I got sick and it is much different. I had a friend call me the other day and got my answering machine and thought he had the wrong number. Well again sorry for venting but it did make me feel better. Take care and God Bless!

sportsman
Posts: 98
Joined: Feb 2010

Sweet: I read a lot of your posts on here and it sounds like you and I are in the same boat pretty much when it comes to the side effects of radiation. At the end I February I will be four years post treatment and it now has been a little over four years since I last ate in a restaurant. The only people I have actually eaten in front of is my family and this is still hard for me to do. I have to concentrate real hard when swallowing and drink with every bite I take. My family members other than my wife do no understand that I basically can not talk when eating. I think you and I both have severe strictures. I personally have been dilated five times now. Once the food gets past a certain point it goes down fairly easy but I am afraid always on choking when swallowing something. I still feel sad about not being able to go out and eat with my wife, family and friends but this has become a way of life for me. Some people I am around who are eating in front of me apologize for doing so. I tell them there is no reason to apologize that I have learned to cope with it and try to get along with life. I have also read where you have no saliva. I am the same way. I think if I had saliva, maybe just a little that I could swallow more things. I am also having massive problems with my teeth (They were not that good before radiation) in having to have fillings and crowns. This gets expensive as dental insurance coverage is very limited. I guess I am venting tonight but if those of us on here did not have someone like us to vent to it would be more difficult to live. I remember asking my doctors what quality of life I would have after treatment and they advised I would not lose much quality of life. Boy what a falsehood this was. I realize I am blessed to just be alive and should not be complaining as there are others on this site far worse than I. I now just get up and try to face each day a day at a time and live the best possible life I can live. I just hope there is steak and sweets in heaven. So far as talking. Talking is very important to me as I speak to groups of people both large and small. My voice has drastically changed as it sounds like I have nasal problems. I listen at my recorded voice now and the voice message that is still on my answering machine before I got sick and it is much different. I had a friend call me the other day and got my answering machine and thought he had the wrong number. Well again sorry for venting but it did make me feel better. Take care and God Bless!

sweetblood22's picture
sweetblood22
Posts: 3230
Joined: Jan 2010

Seems we do have too much in common. You are two stretchings up on me. I have had three total, but two since rads. I don't even eat in front of my family. One, because my father cooks for himself and three other people and he isn't going to make me something different every single night. I rarely go up there even if it is something I could conceivably swallow because... Two, he puts salt and pepper in stuff and it burns my tongue. Three, because people talk to me while I try and eat...... Four, my grandmother stares at me the ENTIRE time. I cannot stand it!!!!!!!! I DO NOT like to be stared at. Never did and I am certainly touchy about it now..... Five, every one eats in five minutes and I have taken and swallowed all of three bites and every one is trying to clear the table and every one leaves and I am stuck there with my grandmother staring me in the face and five dogs staring at me like a pack of starving wolves. :( Well, two of them are bullies. Thor is 200 pounds and Woola is 135 lbs. The whole thing just gives me heart burn.

I do better just eating alone. I understand totally about quality of life. I have told a few others that I don't think I would have done rads if I knew how severe my side effects would be, I wouldn't have done it. I try not to complain either. I have friends that have it far worse than I do. That are having issues with scans and many things going on in their lives and I try and remember I am blessed and lucky. It can always be worse. I do get kind of lonely though.

I feel like half the person I used to be sometimes and I don't like it. I can no longer sing 2nd soprano in my choirs, I no longer have my store, no significant other, different body weight and physical appearance. It's a lot. Sometimes when I get upset, I try to cut myself some slack and remember that it's a lot to adjust to. When I feel cranky and out of sorts, I come here. (I am here a lot. Lol) I also have my Chinese Hairless Crested who makes me laugh daily and has me trained quite well.

Vent away any time to me. :) It does help to vent to someone who gets it. I am thankful for you and all who are share what they go thru here.

Blesings,

Sweet

Skiffin16's picture
Skiffin16
Posts: 8088
Joined: Sep 2009

Welcome to the forum Roze.

It sounds like you have traveled a well traveled road on this forum...glad to have you aboard. I'm sure you have a lot to contribute and can gain a lot from us as well.

Best,
John

swartpb's picture
swartpb
Posts: 32
Joined: Feb 2011

Hi Roze

I still have to travel the road that you have travelled. What an eye opening!

My sub-conscience mind is absorbing all the experiences of others like you etc.

It feels good to hear all the survivalist's stories!

Thank you all and may God bless us all!

Pieter

adventurebob's picture
adventurebob
Posts: 691
Joined: Jun 2010

Thank you for joining us. We've been needing someone just like you.

Bob

Hondo's picture
Hondo
Posts: 5812
Joined: Apr 2009

Hello and welcome to the Family here on CSN, glad you found us and hope you plan to stay.

All the best
Hondo

Kent Cass's picture
Kent Cass
Posts: 1746
Joined: Nov 2009

What Hondo said.

Believe

kcass

Glenna M's picture
Glenna M
Posts: 1580
Joined: May 2009

Like everyone else I would like to welcome you to CSN, sorry you have to be here but I'm happy to hear that you are healing. It does seem to take forever but you will notice changes every week.

If you ever find the secret to gaining weight please let me know. I managed to regain 9 of the 28 pounds I lost but have lost 6 of them again. I have to keep forcing myself to eat just to maintain the 103 that I'm finally at. It's not much fun to have to eat foods just to keep your weight up...I truly believe that I would prefer to have to diet to lose weight - LOL.

Stay well,
Glenna

honeybelle22's picture
honeybelle22
Posts: 70
Joined: Feb 2011

It seems we are kindred spirits...about same age too. Glenna I have no secret to gaining weight..but. I was gaining untill last bout of radiation. What I do is add everything that I couldn't when I was heavy. I'm 5'3" so a little is alot. I use mayo, and olive oils to cook eggs. Slides down..extra cals too. Grab a tabs of peanut butter during the day..Put tons of butter on everything I can. Use half n half on cr o wheat.
Soon will be going to health food store to see about weight gain powders. I read berries are very good for health. So thinking of making smoothies. High calories but will go down. Will share when I concoct it.

Believe it or not this is my first personal computer. My xmas gift to me. I am bummed I have no avatar...feel naked...HELP. Also, can't figure out how to upload a profile pic. It's too soon for halloween but thought I'd get ready...LOL. Roze

sweetblood22's picture
sweetblood22
Posts: 3230
Joined: Jan 2010

It's easy to get a profile picture:

In the upper left hand corner of this screen in the burgundy section, click on My CSN Space.

The next window you will see it says MY CSN Space in the middle top of your screen. To the right of that, it says EDIT in blue. Click on that.

There you can upload a picture and set your preferences, set up whether you would like to receive personal messages, etc.

Any other questions just ask, and welcome. :)

Sweet

honeybelle22's picture
honeybelle22
Posts: 70
Joined: Feb 2011

Thanks Sweet for your help. I hope you like my kittys. They are my kids now. Mine are grown and live in other states now. Maybe later I'll be able to put a pic of me there. OOOOH...scary thought. LOL....Where do I get my little avatar for next to my name.????

Roze

sweetblood22's picture
sweetblood22
Posts: 3230
Joined: Jan 2010

Roze, Do you mean that tiny little head and shoulders of a person with a little + sign? Because you have your kitties right there. If you are talking about that little head and shoulders of a person, You will not have one next to your name because that is what you would click on to add the person to your friends list.

If it's not that, then I am not sure what you mean. Sorry.

Glenna M's picture
Glenna M
Posts: 1580
Joined: May 2009

Kindred spirits...I like that - LOL. The only difference is you are 3 inches taller than I am :) I can eat just about everything except peanut butter which naturally is one of my favorite foods. Before treatment I used to have an English Muffin with peanut butter every morning now I have it with jelly but sure do miss the PB :( I don't have much of a problem eating, it's trying to think of something I want to eat. Nothing sounds appetizing anymore. Oh well, the good weather is coming soon and hopefully plenty of fresh veggies from the garden. I could easily become a vegetarian.

Hope you get a picture uploaded soon!!

Stay well,
Glenna

sue5749
Posts: 170
Joined: Dec 2010

I have this type of cancer and had to have a track after receiveing rads and cemo. I have had 18 rad treatments and 6 erbutix treatments. Then had to go to hospital and have a port and feeding tube put in. I stopped breathing on the hospital bed, they had to put a track in. Was in hospital for 2 weeks, now I am home had 1 cemo treatment. Now the rad docters wants to wait 3 weeks until I got use to the track. Does anybody out there know if this is going to be a really big sit back for me???

fisrpotpe's picture
fisrpotpe
Posts: 1338
Joined: Aug 2010

Welcome Roze. Thanks for taking the time to introduce yourself. Congrats your now considered a two time cancer survivor.

Your at a great place to share and help others fight the fight.

Enjoy your day and we look forward to seeing your future posts.

John

honeybelle22's picture
honeybelle22
Posts: 70
Joined: Feb 2011

I hope I can help others. I just got this laptop this Dec as a xmas gift from me to me. And it was the best thing I did for myself. Had I had it earlier I would have been here sooner. I knew I needed help from others that where in same situation. I try not to open up too much with neighbors..I get the feeling they think it's contagious.
ACS doesn't make it easy to find tho. I was determined to get in . Thanks again John, your words mean alot. Roze

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

Love the pictures of your kitties. We have a very sweet white kitty with one blue eye and one amber. My hubby, Buzz, finished radiation on January 10 so it looks like he is in the same boat as you. The thick saliva has mostly gone so hopefully yours will too. He can't eat solids but can drink liquids. We discovered ScandiShake. It is pretty palatable for him. Also, Breeze made by Boost, is a clear liquid beverage with 250 calories per 8 oz and has 9 grams of protein. Both ScandiShake and Breeze have to be ordered on line. Scandishake has 600 calories when mixed with whole milk.

honeybelle22's picture
honeybelle22
Posts: 70
Joined: Feb 2011

Hi Buzz and lady buzz--nice to meet you. I laughted because when I was young bride we had a lil white kitty GATO with one blue and amber eye. At parties. People would wonder if there where 2 cats. Of course that probably had to do with the partying too. LOL But these two keep me busy now. I'm lucky they let me live here.

I am going to look for the Scandishake you talked about 600 cals would be a big help. I can eat solid foods but have to be very selective. My am meal is 2eggs with tbls mayo scrambled in it and I add feta cheese. Its tasty and creamy--not stingy. Then I nuke it in olive oil. I est 600 cals there. It slides down. I make it soft. Its all about calories now. I'm 107 and fight not to lose more.

The saliva is something I don't hear many people mention..But it truelly is my biggest prob with foods and pills. And messes up my voice. But this was my 2nd rad treatment so it's worse this time. And . I find it gets better then worse then better then worse..No day is the same.

I'm thinking of getting a juicer to be able to whack a bunch of veggies and berrys into something I can get down. But solis foods are something wee have to eat to keep the organs and intestine intact. My stomack shrunk so much ...lil appitite.

Hope to see you here again. and Thank again for ideas. Roze

sweetblood22's picture
sweetblood22
Posts: 3230
Joined: Jan 2010

I have a juicer and an emulsifier and I use them everyday. I also bought a chopper/mincer. I also use that everyday. These three items are the core of my daily nutrition intake. I juice everyday with the juicer. Make a few smoothies a week with the emulsifier and I use the mini food processor every day for prepping my veggies for dinner. I think these appliances really helped me turn a corner when it came to being able to eat again and get rid of my PEG tube, which I had for 18 months. Also with zero saliva I think it's important to have my mouth do less work. Why have it do more than necessary when my mouth and tongue already hurt and I don't have enough of the enzymes in my mouth that are necessary to break down the food properly, never mind trying to get food past the stricture. I think a juicer is a wise investment and helps me get in more servings of fruit and veg that are required daily.

honeybelle22's picture
honeybelle22
Posts: 70
Joined: Feb 2011

I was already checking them out today on line. I get the juicer....but what's with the emulsifier..? I have a food processor...and use that a lot too. I make hummus in that and eat it with pieta bread. But, I do want to make smoothies with whey powder etc. Maybe you make sense of the differences for me. Isn't that getting a little redundant...won't a processor do the work of an emulsifier. ???? I've been checking out diff weight gain powders...but not with aspertaine. And alot of them use it.

Lady, I think your the coolest. Roze

honeybelle22's picture
honeybelle22
Posts: 70
Joined: Feb 2011

I was already checking them out today on line. I get the juicer....but what's with the emulsifier..? I have a food processor...and use that a lot too. I make hummus in that and eat it with pieta bread. But, I do want to make smoothies with whey powder etc. Maybe you make sense of the differences for me. Isn't that getting a little redundant...won't a processor do the work of an emulsifier. ???? I've been checking out diff weight gain powders...but not with aspertaine. And alot of them use it.

Lady, I think your the coolest. Roze

sweetblood22's picture
sweetblood22
Posts: 3230
Joined: Jan 2010

My mini chopper is like a tiny food processor. I love hummus btw. Mmmm mmmm mmm.

The juicer I have is a Hamilton Beach Wide Mouth Juicer. My father bought it for me and I am happy with it. Works great for what I use it for every day. I juice carrots, apples, pears, cucumbers, parsnips, celery, melons...

The emulsifier is not the same as a processor. It will literally liquify whole vegetables and fruits. Today, I peeled (you don't have to but i couldnt get organic fruit this time ) and deseeded a large apple and a pear and put them in about a 16 oz glass and topped it with almond milk, put that in the emulsifier with my protein powder and voila! Smoothie. Examples of an emulsifier would be a Vitamix or a HealthMaster. The Vitamix is expensive, but I understand that they give a discount for cancer patients. I bought the HealthMaster when I wasn't sure I would ever be able to eat again. I went 9 months with no food at all by mouth.

The processor really doesn't do the work of an emulsifier. Well, unless it is an industrial one, maybe, like a Robocoup. Like in a professional kitchen. I have a decent blender, and I had tried to purée soups and make whole fruit smoothies in them and there are big chunky bits in there. Since I have trouble swallowing, I needed total liquification.

I do not even use sweetner in my smoothies or my juice. To me the fruit is sweet enough. I would never use aspartame! That stuff is terrible for you. I sometimes use honey on my Greek yogurt, so I would recommend that as a sweetener. I also have read about healing properties of honey. Either that or I would try agave nectar. I cannot stand the taste of artificial sweetners and they make me sick. I get migraines and intestinal problems. I am trying to find Hemp Powder to try. I am hoping that doesn't have any artificial sweetener. I have to finish what I have before I get new. I would tell you what I have, but I don't know the name of it because I transferred it to a smaller jar.

If you do get a juicer and you want some, I have a ton of recipes and links if you would like them just shoot me a personal mesage.

rozaroo
Posts: 667
Joined: Apr 2010

Welcome to the board! I pretty much lived on shakes with fresh fruit for over four month's.
Sweet has some very helpfull recipies that offer alot more for us who have chewing &
swallowing issues. Plus they are not the same old boring ones you see online. This is a great site with people who really do care. I wish you all my best during your recovery.
God Bless
Roz

honeybelle22's picture
honeybelle22
Posts: 70
Joined: Feb 2011

Thank you Roz, I appreciate every post I get. Everyone has been so friendly and as I said before it felt Like a group hug. I sure needed it too. I'm going to get recipes from sweet. She's right on the ball with all the right info. Sending a message to her today for them. And it's great to meet you. And hope you are doing well also. Stay cool. Rose

hawk711's picture
hawk711
Posts: 525
Joined: Jan 2010

Rose or Roze, (not sure)
Your diagnosis and mine are right on. I had base of tongue with neck tujmors also. I am 10 months out of treatment and just got a NED reading in January (no evidence of disease) from my PET scan. Keep fignting the fight, it gets better, but way, way, too slow.....!
I understand your problem is mucous, right? Trust me this mucous will end. It just stops one day, really crazy. But then, your saliva dries up and you have the reverse problem, no mucous and no saliva or very little. Are we having fun yet???
The Scandia shakes are great, also use the ensures of the world and don't forget yogurt. It goes down easy and it is 170 calories. I also drink Starbucks cold coffee dring from the grocery store, about 200 calories there. OJ is about 100 and milk is about 110 per glass. See there, I got you about 600 calories and you didn't have to chew once !!!!!
Rose, keep coming back here. We are in the battle with you.
Let's keep all the dialogue going because the others here, Roz, Sweets, Kent, Kim, etc, are wonderful people. They have helped me in ways they don't even know. I read their posts to others and get something out of it....All in all, the journey is yours, but we can show you a map once in a while to help you find the right route to travel.
I wish you all the best,,,,,,,be strong and positive....it helps you and others around you.

Nice to meet you,
Steve

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