SCARED TO SWALLOW

Linda C.
Linda C. Member Posts: 107 Member
in Head and Neck Cancer #1

Did a load of laundry today.  Also walked the dogs.  Other than that, I slept on the sofa.

Ten days out of  treatment.  Trying to take more sips of water but did choke a couple of times.  Read somewhere that I should swallow sips of water at least 8 to 10 times a day as exercise for my throat.  I had been doing only 2 or 3 times a day.  So today tried to increase the number of times but when I choked I got scared and lost my courage to continue.

Today I ingested through my PEG tube 706 calories, 65 grams of protein, and 20 ounces of water.  Not nearly enough.   Don't know how long it will be before I will be off the PEG tube but it won't  be any time soon.

Comments

  • CivilMatt
    CivilMatt Member Posts: 4,724 Member
    #2
    swallow this

    Hi Linda,

    I am a big advocate for drinking water and swallowing.  It can become hard and scary.  You may feel and think you have forgotten how to swallow and you may need a little help. But do not fear, there is swallowing exercise and methods to set you on the correct course.  Call your doctor and tell them what is happening and soon you will be sipping with the rest of us.

    Take care,

    Matt

  • AnotherSurvivor
    AnotherSurvivor Member Posts: 384 Member
    edited August 2017 #3
    Try swallowing milk instead

    Try swallowing milk instead of water.  I was hesitant on that at the start, but my son the doc informs me that the human swallow reflex actually is geared to swallow slightly thicker fluids than water more easily.  A cup of 2% will net you 120 calories, fat free gets you 90 calories.  Milk also contributes almost as much to hydration as plain water.  I now do nearly 3 gallons of fat free every week.

  • johnsonbl
    johnsonbl Member Posts: 266 Member
    #4
    I concur with AnotherSurvivor...

    I believe they even make a water "thickener" to help with this...  I "struggled" more with super thin liquids more than I did things like yogurt and stuff.  I drank so much water during treatment and recovery...I believe it made my recovery so much easier and faster.

     

    Brandon

  • Linda C.
    Linda C. Member Posts: 107 Member
    edited August 2017 #5
    CivilMatt said:

    swallow this

    Hi Linda,

    I am a big advocate for drinking water and swallowing.  It can become hard and scary.  You may feel and think you have forgotten how to swallow and you may need a little help. But do not fear, there is swallowing exercise and methods to set you on the correct course.  Call your doctor and tell them what is happening and soon you will be sipping with the rest of us.

    Take care,

    Matt

    I'm scheduled for a swallow

    I'm scheduled for a swallow test in a few weeks.  Hope I can swallow much easier by then.

  • Linda C.
    Linda C. Member Posts: 107 Member
    #6
    AnotherSurvivor said:

    Try swallowing milk instead

    Try swallowing milk instead of water.  I was hesitant on that at the start, but my son the doc informs me that the human swallow reflex actually is geared to swallow slightly thicker fluids than water more easily.  A cup of 2% will net you 120 calories, fat free gets you 90 calories.  Milk also contributes almost as much to hydration as plain water.  I now do nearly 3 gallons of fat free every week.

    I've never been able to drink

    I've never been able to drink milk my whole life, in fact, hate it.  I can tolerate chocolate milk as well as ice cream.  Right now I can barely get a sip of water to go down.  It might be because of swelling - not sure.  I'm hoping that in a week or so I'll be able to swallow more water than a few sips a day.  I am getting water down my tube on a regular basis but it's not the same as using my throat muscles.  I still can't stand any type of food on my tongue.  It's in bad shape and the taste is awful and makes me gag.  Right now I am just concerned about increasing the sips of water daily.  It's only been 11 days since my last treatment. 

  • SuzJ
    SuzJ Member Posts: 446 Member
    #7
    11 days out?

    You are doing fine. The 3 weeks after treatment are the worst, so don't stress it, it'll happen, one day you'll realize it doesnt hurt "so" bad, then next day, you can swallow some water, etc.. you are trying to rush, and this isn't a sprint, its a marathon.

  • Tonita
    Tonita Member Posts: 197 Member
    edited August 2017 #8
    AnotherSurvivor said:

    Try swallowing milk instead

    Try swallowing milk instead of water.  I was hesitant on that at the start, but my son the doc informs me that the human swallow reflex actually is geared to swallow slightly thicker fluids than water more easily.  A cup of 2% will net you 120 calories, fat free gets you 90 calories.  Milk also contributes almost as much to hydration as plain water.  I now do nearly 3 gallons of fat free every week.

    Yes, I was going to suggest

    Yes, I was going to suggest something with a little more density than water.

  • SASH
    SASH Member Posts: 421 Member
    #9
    Swelling

    When I was swollen, the Rad Onc told me to take some of my steriods that I was taking before chemo.  This did help with the swelling.  If this is truly the problem, ask doc about the swelling and if there is anything you can take for it.

  • Linda C.
    Linda C. Member Posts: 107 Member
    edited August 2017 #10
    SuzJ said:

    11 days out?

    You are doing fine. The 3 weeks after treatment are the worst, so don't stress it, it'll happen, one day you'll realize it doesnt hurt "so" bad, then next day, you can swallow some water, etc.. you are trying to rush, and this isn't a sprint, its a marathon.

    I agree with you about me

    I agree with you about me pushing my rate of recovery.  I just need to slow down and let the healing take place. 

  • Linda C.
    Linda C. Member Posts: 107 Member
    edited August 2017 #11
    SASH said:

    Swelling

    When I was swollen, the Rad Onc told me to take some of my steriods that I was taking before chemo.  This did help with the swelling.  If this is truly the problem, ask doc about the swelling and if there is anything you can take for it.

    It just might be swelling

    It just might be swelling that is causing the problem.  I'll ask about that at my next visit.  Thanks.

  • El23fields
    El23fields Member Posts: 11
    #12
    Linda C. said:

    I agree with you about me

    I agree with you about me pushing my rate of recovery.  I just need to slow down and let the healing take place. 

    I agree, too

    Hi Linda,

    I'm almost 3 weeks post RADS so I'm right there with you on how much it still hurts and swallowing issues.  Luckily I've been able to swallow even though it's very painful, but I totally understand how you just want thing to heal as quickly as possible. I am not the best when it comes to patience so this is a big lesson for me.  I am finally starting (slowly) to turn a corner with the intensity of the pain and hopefully you will too.  I have to remind myself that it will get better over time and I just need to do all I can to heal.  Try to keep up on the protein and stay hydrated as best you can.  Wishing you the best.

    Erica

  • Linda C.
    Linda C. Member Posts: 107 Member
    edited August 2017 #13
    El23fields said:

    I agree, too

    Hi Linda,

    I'm almost 3 weeks post RADS so I'm right there with you on how much it still hurts and swallowing issues.  Luckily I've been able to swallow even though it's very painful, but I totally understand how you just want thing to heal as quickly as possible. I am not the best when it comes to patience so this is a big lesson for me.  I am finally starting (slowly) to turn a corner with the intensity of the pain and hopefully you will too.  I have to remind myself that it will get better over time and I just need to do all I can to heal.  Try to keep up on the protein and stay hydrated as best you can.  Wishing you the best.

    Erica

    Hi Erica,  I think I am more

    Hi Erica,  I think I am more concerned about the difficulty swallowing than I am about the pain.  The water just seems to go in whatever direction it wants to.  It even went up my nasal passage once.  Sometimes I have to swallow several times to get the one sip to go down.  This is my concern.  It's like I have no control.  Very scary.

  • FamilyLove
    FamilyLove Member Posts: 22 Member
    #14
    Hi Linda.  I had trouble

    Hi Linda.  I had trouble swallowing too.  I also had a g-tube.  It's important to get as many calories as you can.  I used VHC Boost.  It has 530 calories per 8 oz carton.  I don't know how long it takes for the swelling to go away but after three months I still could not swallow.  Not even a sip of water. I went to speech therapy because I thought my throat muscles has weakened. I had a swallow test and they saw a stricture in my throat and suggested i see an ENT.  My throat had closed nearly all the way.  The opening was the size of a pencil lead. I was six months post radiation by now.   I have had 16 EGD's with dialation. I had my g-tube out after a year.  My throat is open now and I can eat some things. I know you have not had enough time for the swelling to go down and I hope all goes well for you but I say this because no one told me there was a possibility of the throat closing up.  I would have seen an ENT sooner if I had known. I also had radiation two times a day.  I'm sure that was a factor.  Wishing you a speedy recovery.

  • FamilyLove
    FamilyLove Member Posts: 22 Member
    edited September 2017 #15
    VHC Boost

    If you have a hard time finding vhc boost you can order it from mddirect.com

  • Linda C.
    Linda C. Member Posts: 107 Member
    #16
    FamilyLove said:

    Hi Linda.  I had trouble

    Hi Linda.  I had trouble swallowing too.  I also had a g-tube.  It's important to get as many calories as you can.  I used VHC Boost.  It has 530 calories per 8 oz carton.  I don't know how long it takes for the swelling to go away but after three months I still could not swallow.  Not even a sip of water. I went to speech therapy because I thought my throat muscles has weakened. I had a swallow test and they saw a stricture in my throat and suggested i see an ENT.  My throat had closed nearly all the way.  The opening was the size of a pencil lead. I was six months post radiation by now.   I have had 16 EGD's with dialation. I had my g-tube out after a year.  My throat is open now and I can eat some things. I know you have not had enough time for the swelling to go down and I hope all goes well for you but I say this because no one told me there was a possibility of the throat closing up.  I would have seen an ENT sooner if I had known. I also had radiation two times a day.  I'm sure that was a factor.  Wishing you a speedy recovery.

    I am diabetic so have to take

    I am diabetic so have to take Glucerna 1.5.  It has 356 calories in an 8 ounce can and 19 grams of protein.  Thank you for sharing your experience.  I am so fearful that my throat will close up.  I can swallow very small sips of water but sometimes choke.  I see my ENT this week and will ask for a scope to see what is going on.  Glad to hear that things are better for you.

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