Introducting myself
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
Comments
-
Thank you for sharing your story
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!
Pieter0 -
Welcome
Thank you for joining us. We've been needing someone just like you.
Bob0 -
Welcome Roze
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,
Glenna0 -
Gaining weightGlenna M said:Welcome Roze
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
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. Roze0 -
Hi honeybelle22!honeybelle22 said:Gaining weight
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
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.
Sweet0 -
Kindred spiritshoneybelle22 said:Gaining weight
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
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,
Glenna0 -
supragolitic cancer
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???0 -
welcome
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.
John0 -
RIBBIT--LOLratface said:The frog gets better
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.
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.
Roze0 -
THANK YOUfisrpotpe said:welcome
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
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. Roze0 -
PICTUREsweetblood22 said:Hi honeybelle22!
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
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.????
Roze0 -
Talking on the phone.honeybelle22 said:RIBBIT--LOL
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
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.0 -
Avatar next to your name???honeybelle22 said:PICTURE
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
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.0 -
Talkingsweetblood22 said:Talking on the phone.
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.
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!0 -
Talkingsweetblood22 said:Talking on the phone.
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.
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!0 -
Talkingsweetblood22 said:Talking on the phone.
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.
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!0
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