Home from hospital

Tonita
Tonita Member Posts: 197 Member
in Head and Neck Cancer #1

Came home last night.  Tongue is still swollen and misshapen.   It feels like it's been burned.  It tingles sometimes and it is extremely uncomfortable but I would say the pain is high.  I find if I've been talking too much or after I try and "eat" anything, there is discomfort.  It is every strange.  Saliva pools sometimes and I have to "suck it in".  It's exhausting!!

Pills are a nightmare.  What do you all do when you have to take several pills?  I'm crushing and taking with pudding.  That consistency works ok for me but It's just so awful.  I think when I can take pills again normally, I will never want to see pudding again. 

 

I'm going tomorrow to have the drain and staples removed.

Comments

  • CivilMatt
    CivilMatt Member Posts: 4,724 Member
    #2
    home

    Tonita,

    It is nice to be uncomfortable at home, at least for me.

    Your tongue should get better quickly, that is why they sent you home.

    The pudding trick is an oldie but a goodie, half of what we do here is pass on good ideas.

    Dare I mention, are you going to have rads and chemo?  If so, this is just a hint of the joy you can expect, but DON’T WORRY, we have all been down that road and there are rest areas along the way.

    Start drinking lots of water (even sips count) and swallowing.

    Good luck,

    Matt

  • Tonita
    Tonita Member Posts: 197 Member
    #3
    CivilMatt said:

    home

    Tonita,

    It is nice to be uncomfortable at home, at least for me.

    Your tongue should get better quickly, that is why they sent you home.

    The pudding trick is an oldie but a goodie, half of what we do here is pass on good ideas.

    Dare I mention, are you going to have rads and chemo?  If so, this is just a hint of the joy you can expect, but DON’T WORRY, we have all been down that road and there are rest areas along the way.

    Start drinking lots of water (even sips count) and swallowing.

    Good luck,

    Matt

    No one mentioned radiation or

    No one mentioned radiation or chemo as an option yet.  My husband said the doctor told him probably not.

    Yes, I sip on water, coconut water.  Although I am hungry, everything I try is ok but I can only take a little.  I notice a huge lump on the top of my tongue.  Don't even know if that is new or not.

    I guess I'll know more tomorrow.  Can't wait to get this drain out.  It's set in an awkward way and tends to pull.  Anyway, I can't stand looking at it.

  • CivilMatt
    CivilMatt Member Posts: 4,724 Member
    #4
    Tonita said:

    No one mentioned radiation or

    No one mentioned radiation or chemo as an option yet.  My husband said the doctor told him probably not.

    Yes, I sip on water, coconut water.  Although I am hungry, everything I try is ok but I can only take a little.  I notice a huge lump on the top of my tongue.  Don't even know if that is new or not.

    I guess I'll know more tomorrow.  Can't wait to get this drain out.  It's set in an awkward way and tends to pull.  Anyway, I can't stand looking at it.

    tongue

    My tongue at 4 years post still feels like it did on my last rad day.  It is kid of tingly, but that’s ok.

    Matt

  • tommyodavey
    tommyodavey Member Posts: 728 Member
    #5
    CivilMatt said:

    tongue

    My tongue at 4 years post still feels like it did on my last rad day.  It is kid of tingly, but that’s ok.

    Matt

    Welcome Home

    Hi Tonita,

     

    I too had tongue surgery and that was the worst pain I've ever experienced.  But knowing it was only temporary and that the body does a good job of healing itself I just sat quietly and meditated until the pain receeded a little bit.  With you it's the pudding.  With me, I'll never touch another Ensure or generic drink like it for as long as possible.  I know better to never say never but if there's a choice, Ensure won't be going down my throat anytime soon.  Just the smell of it makes me nausous.  The surgeon told me to drink 8 per day.  I was lucky to get even 1 down for the first two weeks.  

     

    How's the nicotine addiction going?  I had to quit the gum due to it causing high blood pressure.  When I chewed it I had to take medication.  When I quit, my BP went down to a low enough level to stop the meds.  It's just very hard to do.  My doctor suggested Wellbutrin and that did help.  It kind of makes you not care so much about ingesting nictotine.  Getting off the anti-depressant was another thing.  If you go that route, taper 20% every two weeks and no quicker than that or you'll have bad side effects.  But hey, I'm totally off nicotine now.

     

    Happy thoughts heading your way,

     

    Tom

  • wmc
    wmc Member Posts: 1,804
    #6
    Being home is good....

    That is good you are home. It will take some time for the swelling to go down, then some to get used to it. The hardest part is behind you. Now the slow recovery, and don't forget to celabrate every little milestone. They are all Major to us.

    Bill

  • swopoe
    swopoe Member Posts: 492
    #7
    I agree with Bill. You have

    I agree with Bill. You have made it through surgery now take it one day at a time. The tongue swelling will go down and each day will get a little bit better. Just take it easy knowing that the hardest part is behind you. Focus on today and you will get through it. You are in my thoughts and please keep us posted. Pulling for you!

  • Barbaraek
    Barbaraek Member Posts: 626
    #8
    Surgery...check!

    Ok! You got that big TO DO off your list...good for you! Each day will get a little better. It's a slow process, but it happens. Sometimes I wish surgery had been an option for us - you feel like you cut that cancer out and got it away from you - my husband's options were chemo/radiation only. We play the cards we are dealt, I guess.

    I'm thinking of you and hoping the nicotine addiction is getting better for you two. It's hard to battle on more than one front at the same time, but you CAN do it.

    Barbara

  • Tonita
    Tonita Member Posts: 197 Member
    #9
    Well the drain and staples

    Well the drain and staples are gone.  Either I've turned into a big baby or whoever said it was a no painer liked.  Undecided  Hurt like hell.  I've lost 11 pounds over the last week.  I'm really trying to get "food" down but I have to force everything.  Hit me up with a bad-**** turkey sandwich with a few kettle cooked chips and I'll be in HEAVEN.  I have a feeling that if I get through this hurdle, I'm going to have a bad diet.  But maybe only for a liitle while. 

    I think the pills are the worst.  They're sitting here waiting to be taken and I just can't. 

  • Barbaraek
    Barbaraek Member Posts: 626
    #10
    Tonita said:

    Well the drain and staples

    Well the drain and staples are gone.  Either I've turned into a big baby or whoever said it was a no painer liked.  Undecided  Hurt like hell.  I've lost 11 pounds over the last week.  I'm really trying to get "food" down but I have to force everything.  Hit me up with a bad-**** turkey sandwich with a few kettle cooked chips and I'll be in HEAVEN.  I have a feeling that if I get through this hurdle, I'm going to have a bad diet.  But maybe only for a liitle while. 

    I think the pills are the worst.  They're sitting here waiting to be taken and I just can't. 

    Can any of your medications

    be switched to liquid form?? Almost all of my husbands had to be liquid since he couldn't swallow and things had to go in the tube. Later when he started swallowing again they still has to be liquid in order to get them down. Hoping your pain decreases daily and you see daylight ahead.

    Barbara

  • Hondo
    Hondo Member Posts: 6,636 Member
    #11
    Hi Tonita

     

    Hang in there you are doing great so keep your focus on getting through this and getting better. There will be some bumps in the road and some of them are very hard to get over, but you will get there. I too had a lot of problems when taking pill, now I just crush them up and put them down the PEG tube. I found a pain med that works wonderful for me it is call Nucynta, it is the only one that makes me feel normal with less pain not high as a kite.

     

     

     

    Tim

     

  • the_wife
    the_wife Member Posts: 184
    #12
    Barbaraek said:

    Can any of your medications

    be switched to liquid form?? Almost all of my husbands had to be liquid since he couldn't swallow and things had to go in the tube. Later when he started swallowing again they still has to be liquid in order to get them down. Hoping your pain decreases daily and you see daylight ahead.

    Barbara

    Like with Barbara's husband,

    Like with Barbara's husband, my hubby had to take liquid painkiller in the form of oxycodone. I would put it in a (needleless) syringe and he squirted it into the back of his throat. He continued with this method for several weeks after treatment, later switching to little plastic cups for the correct dosage. It was the only way he was able to swallow meds. Pills for him were out of the question during treatment. There was only one pill he took regularly and that was just to make sure he could still swallow something besides water. Also, like many others here he was on a feeding tube that was put in halfway through chemoradiation. There is no way he could have eaten - he would have starved. Taste was awful during treatment - even Ensure was hard to take. 

    Don't hesitate to call your provider - they should be able to help you with pain management and your nutritional needs.

    Best of luck to you! I hope you feel better soon!

  • slk2015
    slk2015 Member Posts: 54
    #13
    Tonita said:

    Well the drain and staples

    Well the drain and staples are gone.  Either I've turned into a big baby or whoever said it was a no painer liked.  Undecided  Hurt like hell.  I've lost 11 pounds over the last week.  I'm really trying to get "food" down but I have to force everything.  Hit me up with a bad-**** turkey sandwich with a few kettle cooked chips and I'll be in HEAVEN.  I have a feeling that if I get through this hurdle, I'm going to have a bad diet.  But maybe only for a liitle while. 

    I think the pills are the worst.  They're sitting here waiting to be taken and I just can't. 

    Tongue pain and pills

    I had a quarter or so of my tongue removed.  When pills were too tricky to swallow, I dissolved them in water (as long as the pill could be dissolved and not affect outcome).  My tongue hasdsurgery twice in a month and was very unhappy with me for this and took its sweet time getting better.  One thing I continue to have trouble with nearly a year later is when I put pills in to swallow, they get stuck under my tongue and I have to use a finger to dislodge them.  It's okay at home, but in public, I find taking pills out of the site of others is a good idea.

    As for pain, I ended up in the hospital a week after the first surgery because ibuprofen and tylenol were not working and I knew of no other pain killer that I could take and it would work.  After three days, they finally found a narcotic that did work.  Pain relief is very vital.  When I hurt, I don't want to eat, etc and that just made things much worse.  

    My tongue will still get numb and sometimes not want to let me talk.  It varies from day to day.  I guess I kind of just got used to it.  

    It is surprising what foods can be blenderized.  I did meat, veggies, etc.  Some were kind of nasty, but I had to eat.  Some were pretty good.  I had to buy a food processor to do this.  I could not stand Ensure or any other similar product, so I just kind of made my own concoctions. 

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