6 days out of surgery- Advice needed

candyshapiro
candyshapiro Member Posts: 16
in Head and Neck Cancer #1

On Feb 21st I had robotic surgery for tonsillar cancer that went down to the base of my tongue. They did a radical neck node disecction and it is HPV positive. (good thing I understand). Four days in hospital and then released. I have been only on tylenol suppositories every four hours for pain. I am a pill gagger and afraid to try anything. That said at night I could use stronger med to sleep and thinking maybe it would make it easier to eat. At 110 I can't afford to loose too much more. Down 5 at present. I am waiting to hear from the surgeon on a replacement way for my antibiotics. After two opening and putting in mashed potatotes I started gagging. I understand the first two weeks are the worst. I would love some recommendations are getting thru this time and how is the progression. My node biopsy will tell the tale on radiation/chemo and clear margins which they said they got but it goes thru a final examination. (My understanding) The first node was definite but waiting on the chain of them. Any advice welcome on preparing, eating, medications. Very tough nights. Thank you to all who reply

Comments

  • stevenpepe
    stevenpepe Member Posts: 234
    #2
    Can ypu drink? How about

    Can ypu drink? How about liquid Oxycodone? Stronger than Tylenol. 

  • CivilMatt
    CivilMatt Member Posts: 4,724 Member
    edited February 2017 #3
    here you go

    cs,

    Welcome to the H&N forum, sounds like a painful start.

    Your doctor should readily help you to select the best pain meds and method to take them.  If you need them, take them, don’t try to tough it out.

    Usually, the first 3 weeks are the honeymoon (rads) with side effects coming on from 3 weeks to end and beyond.  This is not to say watch out for the first 3 weeks, they may have their own challenges.

    Drink water and swallow, take nausea meds early, keep your team informed on all changes.

    Matt

  • candyshapiro
    candyshapiro Member Posts: 16
    #4
    stevenpepe said:

    Can ypu drink? How about

    Can ypu drink? How about liquid Oxycodone? Stronger than Tylenol. 

    I gag on taste. Tried to take

    I gag on taste. Tried to take the antibiotic mixed with mashed potatoes. Didn't go well. Today I went without meds until I tried to eat my mashed potato lunch. Good news the doctor said I could stop antibiotics. So much mucous or saliva in my mouth. Feel like a baby getting their first teeth. Can you eat normally now? I am hoping after two weeks the swallowing will get easier.

  • candyshapiro
    candyshapiro Member Posts: 16
    #5
    CivilMatt said:

    here you go

    cs,

    Welcome to the H&N forum, sounds like a painful start.

    Your doctor should readily help you to select the best pain meds and method to take them.  If you need them, take them, don’t try to tough it out.

    Usually, the first 3 weeks are the honeymoon (rads) with side effects coming on from 3 weeks to end and beyond.  This is not to say watch out for the first 3 weeks, they may have their own challenges.

    Drink water and swallow, take nausea meds early, keep your team informed on all changes.

    Matt

    Radiation hasn't been fully

    Radiation hasn't been fully determined yet. JUst getting thru trying to swallow after surgery when the tongue was involved. Nothing is natural. Looking for food advice and to know if anyone eats again normally after this. I am expecting radiation but hoping for lower dose and very targeted based on all the margins. 

  • johnsonbl
    johnsonbl Member Posts: 266 Member
    edited February 2017 #6
    candyshapiro said:

    I gag on taste. Tried to take

    I gag on taste. Tried to take the antibiotic mixed with mashed potatoes. Didn't go well. Today I went without meds until I tried to eat my mashed potato lunch. Good news the doctor said I could stop antibiotics. So much mucous or saliva in my mouth. Feel like a baby getting their first teeth. Can you eat normally now? I am hoping after two weeks the swallowing will get easier.

    I was given liquid

    I was given liquid hydrocodone with tylenol when I had this done on 2/7/17.  I found applesauce was pretty good for mixing with the antibiotic.  The worst of my experience was days 7-10...at 10 days I was given the clear to start taking ibuprofen and that helped greatly.  I was also eating a full diet @ about 10 days.  At 16 days out today and have minimal pain...well controlled with just a couple ibuprofen.

  • johnsonbl
    johnsonbl Member Posts: 266 Member
    #7
    candyshapiro said:

    Radiation hasn't been fully

    Radiation hasn't been fully determined yet. JUst getting thru trying to swallow after surgery when the tongue was involved. Nothing is natural. Looking for food advice and to know if anyone eats again normally after this. I am expecting radiation but hoping for lower dose and very targeted based on all the margins. 

    Candy, I'm right with you.  I

    Candy, I'm right with you.  I had a neck disection on 1/9 and TORS surgery on base of my tongue on 2/7.  Yes, swallowing for me improved greatly on day 10.  I found that non-liquids (yogurts, smoothies, etc...) were easier to swallow at least early on.  Water and thin liquids wanted to try and come up my nose but a little thicker liquid was much better.  I'm eating fully now at 20 days out.  My taste buds are a little out of whack and I still trip on my tongue when I talk just a little bit...but they continue to both improve every day.  You'll get there...

  • lornal
    lornal Member Posts: 428
    #8
    candyshapiro said:

    I gag on taste. Tried to take

    I gag on taste. Tried to take the antibiotic mixed with mashed potatoes. Didn't go well. Today I went without meds until I tried to eat my mashed potato lunch. Good news the doctor said I could stop antibiotics. So much mucous or saliva in my mouth. Feel like a baby getting their first teeth. Can you eat normally now? I am hoping after two weeks the swallowing will get easier.

    liquid pain killers

    A lot of the liquid pain killers - the ones that have tylenol, use alchol to keep it liquid.  Very painful - after surgery AND during radiation - when the throat is raw.

    I ended up with the next step up from vicodin - can't remember what it is, but it wasn't oxycodin yet.  Anyway - I was able to mix with my own liquid - and ended up using a nectar most of the time.  Sometimes milk - nothing acidic.  That made a huge difference in getting stuff down.

    Lorna 2007 & 2014

  • candyshapiro
    candyshapiro Member Posts: 16
    #9
    johnsonbl said:

    Candy, I'm right with you.  I

    Candy, I'm right with you.  I had a neck disection on 1/9 and TORS surgery on base of my tongue on 2/7.  Yes, swallowing for me improved greatly on day 10.  I found that non-liquids (yogurts, smoothies, etc...) were easier to swallow at least early on.  Water and thin liquids wanted to try and come up my nose but a little thicker liquid was much better.  I'm eating fully now at 20 days out.  My taste buds are a little out of whack and I still trip on my tongue when I talk just a little bit...but they continue to both improve every day.  You'll get there...

    Thank you, needed to hear

    Thank you, needed to hear this.... yesterday was one of the worst and I didnt figure on going backwards. I took myself off of extra strength tylenol and oh what a mistake that was. By night I tried tylenol with codeine and felt better but it is now morning and the thought of getting food in and down is overwhelming. I may resort to the oxy today. It sounds like you don't need radiation. Happy to hear there is a light. 

  • Tonita
    Tonita Member Posts: 197 Member
    edited February 2017 #10
    candyshapiro said:

    Thank you, needed to hear

    Thank you, needed to hear this.... yesterday was one of the worst and I didnt figure on going backwards. I took myself off of extra strength tylenol and oh what a mistake that was. By night I tried tylenol with codeine and felt better but it is now morning and the thought of getting food in and down is overwhelming. I may resort to the oxy today. It sounds like you don't need radiation. Happy to hear there is a light. 

    I had trouble with my pills

    I had trouble with my pills after my tongue surgery.  The foods that worked for me were cream of wheat and  pudding.  I still have trouble with my pills almost a year out but I can take them one at a time with water. 

  • soaringozeagle
    soaringozeagle Member Posts: 1
    #11
    stevenpepe said:

    Can ypu drink? How about

    Can ypu drink? How about liquid Oxycodone? Stronger than Tylenol. 

    Oxydone

    Yes Liquid Oxycodone is good but I was using Disolvable Panadol with Oxycodone liquid as a back up.

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