getting nervous, finally hitting home

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trafficbrenda
trafficbrenda Member Posts: 4
edited March 2014 in Head and Neck Cancer #1
Hi

So far nothing has really seemed real, that is until today. All of a sudden I am realizing that this is really serious. I have tonsil cancer stage 1 no lymph nodes involved, but the right side of my tongue is. I had the surgery last Thursday.

It seemed too easy, surgery Thursday, home the same day and not much pain to speak of. Today I am having trouble with pain swallowing and keeping my throat clear of mucus. When I swallow my ensure it goes up my nose before it goes down my throat and if I swallow too fast it even goes up my nose and runs out too.

These seem like small things when I put them down on paper here but it is also scary not knowing if this is how it will be from now on or if I will be able to eat normal again in time.

I am scared of radiation therapy and the possibility of a feeding tube and I have no one to talk to about my fears because I don`t want anyone to know how scared I am.

I can`t open my mouth very far and sometimes it is hard to breathe through the mucus. I guess I sound alright even tho they took a piece of the right side of my tongue out, but I have to concentrate when I talk or I drool and words don`t sound quite right.

Everyone is so worried about me that I can`t let them know how worried I am about myself because it would scare them if they knew.

I think I am having a panic attack day so I am trying to not think about anything, but that doesn`t work very well. I think that maybe if I just get this all out here maybe tomorrow will be a better day.

I know - one day at a time, one step at a time, but right now that seems like a very hard thing to do.

I am getting tired again and it is time for a pain pill so I will sleep for a while now and hopefully feel better when I wake up.

Brenda

Comments

  • OldNorske
    OldNorske Member Posts: 4
    #2
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    It's easy to say...take it easy and try to relax, but that's what you have to do. A couple of suggestions; be sure you don't get dehydrated. If you can't take in your food and water, talk with your doctor. If they need to put in a feeding tube for a little while, it's not so bad. Gravity takes care of getting you what you need and then your mouth/throat can heal. Also, be patient. The radiation is so much better than it was years ago. Try to get plenty of rest too. It's almost a year here and it was a stage four with lots of surgery. Doing good and you will too. One day at a time.
  • trafficbrenda
    trafficbrenda Member Posts: 4
    #3
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    OldNorske said:

    It's easy to say...take it easy and try to relax, but that's what you have to do. A couple of suggestions; be sure you don't get dehydrated. If you can't take in your food and water, talk with your doctor. If they need to put in a feeding tube for a little while, it's not so bad. Gravity takes care of getting you what you need and then your mouth/throat can heal. Also, be patient. The radiation is so much better than it was years ago. Try to get plenty of rest too. It's almost a year here and it was a stage four with lots of surgery. Doing good and you will too. One day at a time.

    Thankyou for your input. It feels good to hear from someone who knows what I am talking about without me having to find the words to try to explain what I am feeling.

    I do feel somewhat better today. So far I am doing ok with fluid intake. It feels like I will never be ready for solid food again but I know that is not true. Swallowing is so hard for right now and so far it hasn`t gotten better. I wonder how long before the pain levels off and begins to lessen after the surgery. I do have 5 weeks to heal before radiation tho and I am hopeful that the pain will get better by then.

    I have been up for several hours now and am already tired and ready for a nap.

    Thanks again for your support and I look forward to hearing from you again. I promis not to be so selfish in the future with my conversation. There are lots of questions I have for youn about your experience and recovery. I have great admiration for your courage in dealing with this especially in the advanced stage you were in.

    Bye for now.

    Brenda
  • OldNorske
    OldNorske Member Posts: 4
    #4
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    trafficbrenda said:

    Thankyou for your input. It feels good to hear from someone who knows what I am talking about without me having to find the words to try to explain what I am feeling.

    I do feel somewhat better today. So far I am doing ok with fluid intake. It feels like I will never be ready for solid food again but I know that is not true. Swallowing is so hard for right now and so far it hasn`t gotten better. I wonder how long before the pain levels off and begins to lessen after the surgery. I do have 5 weeks to heal before radiation tho and I am hopeful that the pain will get better by then.

    I have been up for several hours now and am already tired and ready for a nap.

    Thanks again for your support and I look forward to hearing from you again. I promis not to be so selfish in the future with my conversation. There are lots of questions I have for youn about your experience and recovery. I have great admiration for your courage in dealing with this especially in the advanced stage you were in.

    Bye for now.

    Brenda

    Just wondering how you are doing. You mentioned that you were having trouble with mucous collecting and making it difficult to breathe. I found that plain saline nose drops helped to thin the mucous. My doctor suggested Tussin, which helps some people, but it didn't really help me. I had a trach tube for a few months, so I know what you mean about the breathing. Had to keep lots of humidity in the air too.

    I hope you are having less pain and managing to get your ensure and water down. It's so important. I got dehydrated and wound up back in the hospital, so now I work really hard to keep up with that.

    Keep on being strong. It's going to get better.
  • johnhayse
    johnhayse Member Posts: 4
    #5
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    cancer sucks! ok now that thats out of the way I had throat cancer had treatment over 4 yrs ago and am fine chemo once a week and radiation 5 times a week for 6 weeks not fun but it worked Sounds like you were very fortunate to have had surgery and no radiation however let me tell you radiation is no big deal except you get really really tired also a feeding tube can save you I had one for quiteawhile and its nothing to be scared about Just want you to know I understand and if I can help in anyway even just as someone you can vent with please let me know god bless stay positive belive me it gets better johnhayse
  • Catfish007
    Catfish007 Member Posts: 6
    #6
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    johnhayse said:

    cancer sucks! ok now that thats out of the way I had throat cancer had treatment over 4 yrs ago and am fine chemo once a week and radiation 5 times a week for 6 weeks not fun but it worked Sounds like you were very fortunate to have had surgery and no radiation however let me tell you radiation is no big deal except you get really really tired also a feeding tube can save you I had one for quiteawhile and its nothing to be scared about Just want you to know I understand and if I can help in anyway even just as someone you can vent with please let me know god bless stay positive belive me it gets better johnhayse

    Hi John-
    Did your throat swell up with fluid under your chin? I have this bullfrog throat now after 38 Rad trtmnts & 3 mnths after. Dr says it's called a "Dewlap" and may last for 6 mos to 1 yr. Did this happen to you & if so, did it completely disapear or what? thxx - Catfish007
  • srlasky
    srlasky Member Posts: 1
    #7
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    Brenda, just a word of support. I hope you are feeling better and the mucus is less of a problem. I was just diagnosed with late stage 3 or stage 4 tonsillar cancer and I'm about to start chemo and radiation this week.

    You are a little ahead of me but I'm going to be going through a lot of the same things you are getting, so we can keep each other company. I'm getting a feeding tube tomorrow and a picc line on wednesday. I start radiation and herbatox on Thursday.

    You shouldn't worry about other people's worrys. Let them be your support... you have to go through it, not them.

    I hope you are making it through your chemo. Be sure to keep us up to date on how you are doing.

    srlasky
  • jeff_wherrett
    jeff_wherrett Member Posts: 7
    #8
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    take Mucinex rather than tussin. Works better. Be sure to increase water intake. Thick mucous is a sign of dehydration. Keep it strong. I've gone through radiation and chemo in '03 and in '06. This will be a BREEZE! God Bless.
  • Laralyn
    Laralyn Member Posts: 532
    #9
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    jeff_wherrett said:

    take Mucinex rather than tussin. Works better. Be sure to increase water intake. Thick mucous is a sign of dehydration. Keep it strong. I've gone through radiation and chemo in '03 and in '06. This will be a BREEZE! God Bless.

    Hi, trafficbrenda!
    There are a couple of us a few weeks ahead of you, so we can hopefully help a little in terms of telling you what to expect. I start my fourth week of radiation and chemo on Tuesday.

    I was in your shoes to some extent, because I'm the "tough one" in my family and even among my friends. It took a while for me to be willing to share my worries, even with my spouse. You'll have up days and down days, but here are some things that helped me get through them so far.

    The people here on the board are AWESOME so coming here to talk is a great thing to do. :-)

    Admit to yourself and the people close to you when you're scared. If you hold it in, they hold it in, and that's not good for anyone. It also gives them an opportunity to help you because believe me, the people who love you DESPERATELY want to help you in any way they can. If you don't leave any openings--whether it's to bring you a glass of water or talk about being scared of the radiation--they sit by and wish they could do something.

    One of the hardest things I did was to ask my chemo doctor for a prescription of an anxiety medication. I've never needed one before, but I had an almost phobia level of anxiety of nauseousness from chemo. The pills helped a lot--so if you feel like you're panicked, talk to your doctors. They know you need the treatment and they also want your quality of life as high as possible during the treatment. They'll help you through this.

    What opened my eyes was this realization:

    1) The treatment is very unlikely to kill me.
    2) The treatment is very likely to cure me.
    3) All I have to do is wait it out.

    You'll get through this, and you'll be fine. I'll bet Frannie is on here soon to welcome you too--she's a week behind me in treatment. All aboard the treatment train! :-)
  • Mikemetz
    Mikemetz Member Posts: 465 Member
    #10
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    Laralyn said:

    Hi, trafficbrenda!
    There are a couple of us a few weeks ahead of you, so we can hopefully help a little in terms of telling you what to expect. I start my fourth week of radiation and chemo on Tuesday.

    I was in your shoes to some extent, because I'm the "tough one" in my family and even among my friends. It took a while for me to be willing to share my worries, even with my spouse. You'll have up days and down days, but here are some things that helped me get through them so far.

    The people here on the board are AWESOME so coming here to talk is a great thing to do. :-)

    Admit to yourself and the people close to you when you're scared. If you hold it in, they hold it in, and that's not good for anyone. It also gives them an opportunity to help you because believe me, the people who love you DESPERATELY want to help you in any way they can. If you don't leave any openings--whether it's to bring you a glass of water or talk about being scared of the radiation--they sit by and wish they could do something.

    One of the hardest things I did was to ask my chemo doctor for a prescription of an anxiety medication. I've never needed one before, but I had an almost phobia level of anxiety of nauseousness from chemo. The pills helped a lot--so if you feel like you're panicked, talk to your doctors. They know you need the treatment and they also want your quality of life as high as possible during the treatment. They'll help you through this.

    What opened my eyes was this realization:

    1) The treatment is very unlikely to kill me.
    2) The treatment is very likely to cure me.
    3) All I have to do is wait it out.

    You'll get through this, and you'll be fine. I'll bet Frannie is on here soon to welcome you too--she's a week behind me in treatment. All aboard the treatment train! :-)

    You got it!
    The best advice I ever give to newbies is close to your 1,2,3. The cure rate for HNC is now around 80%, so that should ease your mind some. The bigger challenge is coping with the side effects of the treatments--which can range from a mild inconvenience to a major struggle. Everyone is different, so you need to listen to your body, ask questions, get answers,and know that it will pass at some point (your number 3). Everyone chooses how they want to deal with this, but my choice was to be as up front and open with people as I could. Rather than have them struggle with what to ask me about what I was going through (and if I was going to live through this), I started a blog and made regular entries--and still do, three years later.

    You didn't have a choice about getting cancer, but you have a lot of choices about how you deal with it. Be active as a cancer patient--don't let it victimize you twice by scaring you into bad feelings and bad decisions.

    Mike
  • jtl
    jtl Member Posts: 456
    #11
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    Laralyn said:

    Hi, trafficbrenda!
    There are a couple of us a few weeks ahead of you, so we can hopefully help a little in terms of telling you what to expect. I start my fourth week of radiation and chemo on Tuesday.

    I was in your shoes to some extent, because I'm the "tough one" in my family and even among my friends. It took a while for me to be willing to share my worries, even with my spouse. You'll have up days and down days, but here are some things that helped me get through them so far.

    The people here on the board are AWESOME so coming here to talk is a great thing to do. :-)

    Admit to yourself and the people close to you when you're scared. If you hold it in, they hold it in, and that's not good for anyone. It also gives them an opportunity to help you because believe me, the people who love you DESPERATELY want to help you in any way they can. If you don't leave any openings--whether it's to bring you a glass of water or talk about being scared of the radiation--they sit by and wish they could do something.

    One of the hardest things I did was to ask my chemo doctor for a prescription of an anxiety medication. I've never needed one before, but I had an almost phobia level of anxiety of nauseousness from chemo. The pills helped a lot--so if you feel like you're panicked, talk to your doctors. They know you need the treatment and they also want your quality of life as high as possible during the treatment. They'll help you through this.

    What opened my eyes was this realization:

    1) The treatment is very unlikely to kill me.
    2) The treatment is very likely to cure me.
    3) All I have to do is wait it out.

    You'll get through this, and you'll be fine. I'll bet Frannie is on here soon to welcome you too--she's a week behind me in treatment. All aboard the treatment train! :-)

    Isn't the thread from 2006
    Isn't the thread from 2006 or was there something new posted?
  • Laralyn
    Laralyn Member Posts: 532
    #12
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    jtl said:

    Isn't the thread from 2006
    Isn't the thread from 2006 or was there something new posted?

    LOL! Yes it is!
    It was a search error on my part. I opened it looking for something and then forgot it wasn't new! Oops!

    Can I blame chemo-brain? ;-)
  • phrannie51
    phrannie51 Member Posts: 4,716
    #13
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    Laralyn said:

    LOL! Yes it is!
    It was a search error on my part. I opened it looking for something and then forgot it wasn't new! Oops!

    Can I blame chemo-brain? ;-)

    It is still something good to read, tho....old or not.....
    I related so much to it....those moments when I suddenly realize "THIS IS SERIOUS BIZ"....most of the time that thought doesn't come to roost......I just plug one foot in front of the other and go for the amifostine, then drag myself to rads, and home again...like this is simply a new lifestyle....rather than "working at living".

    Anyway, Laralyn......yes we'll attribute it to chemo brain :)........but still, I'm glad you bumped it up.

    p
  • longtermsurvivor
    longtermsurvivor Member Posts: 1,842 Member
    #14
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    Laralyn said:

    LOL! Yes it is!
    It was a search error on my part. I opened it looking for something and then forgot it wasn't new! Oops!

    Can I blame chemo-brain? ;-)

    old or new
    its all good. Lots of threads get resurrected this way. might as well use them to talk about things.

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