Noob with floor of mouth cancer

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  • ozymandible
    ozymandible Member Posts: 324 Member
    #222
    Maybe I will turn a corner

    Maybe I will turn a corner today?  Doesn't hurt quite so bad when I swallow but still not ready to drink a lot by mouth.  Gonna add more fluids in my PEG.  Just had homemade carrot and grape juice from the bumper crop.  We made grape juice and I have a dehydrator full of soon to be raisins.

    This morning had formula so's not to wake up the seeing eye kid but later in the morning had beef stew in my tube.  I might try bacon and eggs mixed with milk tomorrow.  Going to work toward eating this stuff by mouth as soon as I can swallow without wanting to cry.  : )

    Neck is still looking good.  Maybe it won't be too big of a mess.  Still can't really taste too much.  Maybe by the time I can swallow again it will come back.

    The boy is supposed to be here today.  Looking forward to that!

  • wbcgaruss
    wbcgaruss Member Posts: 2,465 Member
    edited July 2021 #223
    ozymandible said:

    Maybe I will turn a corner

    Maybe I will turn a corner today?  Doesn't hurt quite so bad when I swallow but still not ready to drink a lot by mouth.  Gonna add more fluids in my PEG.  Just had homemade carrot and grape juice from the bumper crop.  We made grape juice and I have a dehydrator full of soon to be raisins.

    This morning had formula so's not to wake up the seeing eye kid but later in the morning had beef stew in my tube.  I might try bacon and eggs mixed with milk tomorrow.  Going to work toward eating this stuff by mouth as soon as I can swallow without wanting to cry.  : )

    Neck is still looking good.  Maybe it won't be too big of a mess.  Still can't really taste too much.  Maybe by the time I can swallow again it will come back.

    The boy is supposed to be here today.  Looking forward to that!

    ozy Please Keep In Mind

    That you just finished treatment and I have heard it stated on this forum a number of times that as they say you are still cookin from the rads and may well be for up to 2 weeks.
    So that being said once treatment is finished you tend to get worse for a few weeks or more till you turn a corner then slowly start feeling better.
    I tell you this to prepare you for the possible while still hoping along with you that you are the exception.
    You have been exceptional so far and I hope the trend continues but also be prepared for difficulties also.
    Wishing You The Best-Take Care-God Bless-Russ

  • ozymandible
    ozymandible Member Posts: 324 Member
    #224
    Thank you Russ.

    Thank you Russ.

  • ozymandible
    ozymandible Member Posts: 324 Member
    edited July 2021 #225
    I just ate an otter pop and

    I just ate an otter pop and it wasn't too bad.  The tiny hint of flavor vanished quickly but it was wet cold cleansing and didn't hurt too bad.

    Does this mean I'm turning a corner?

  • ProustLover
    ProustLover Member Posts: 121 Member
    #226
    Otter Pop????

    Dear Ozy...before someone else asks....WHAT is an otter pop?  It sounds therapeutic,   but not very tempting.   I love your experimental and interesting relationship to food...maybe it is getting you close to that corner.  If so, an otter would be worth it!

  • ozymandible
    ozymandible Member Posts: 324 Member
    edited July 2021 #227
    ProustLover said:

    Otter Pop????

    Dear Ozy...before someone else asks....WHAT is an otter pop?  It sounds therapeutic,   but not very tempting.   I love your experimental and interesting relationship to food...maybe it is getting you close to that corner.  If so, an otter would be worth it!

    Otter Pops have been around

    Otter Pops have been around forever.  That's the brand name of something like a popsicle.  It's kind of like frozen KoolAid or something in a plastic sleeve that you push up as you eat.

    https://otterpops.com/

    You ain't from around here are you?(spits and gives ProustLover the suspicious side eyed once over)

    Heehee.  Just kidding.

  • ozymandible
    ozymandible Member Posts: 324 Member
    #228
    Back of my tongue was soooo

    Back of my tongue was soooo painfully dry.  Gargled with the salt and baking soda water and ate a tiny spoonful of olive oil for the dryness.

    I can taste the olive oil too even an hour later.  That's a good sign, right?

  • ProustLover
    ProustLover Member Posts: 121 Member
    #229
    ozymandible said:

    Otter Pops have been around

    Otter Pops have been around forever.  That's the brand name of something like a popsicle.  It's kind of like frozen KoolAid or something in a plastic sleeve that you push up as you eat.

    https://otterpops.com/

    You ain't from around here are you?(spits and gives ProustLover the suspicious side eyed once over)

    Heehee.  Just kidding.

    These here parts

    Living on the shores of Lake Erie, Buffalo-way, we call 'em freeze pops...that's our story, and we're sticking with it! 

    Your stage of taste and swallowing sounds further along than many others after treatment.  Unlike my poor husband, you're not reporting any major mouth sores.  The mouth sores plagued him for months, and the mucuous plagued him for weeks after treatment.   Like you, his cancer developed after years of leukoplakia, dysplasia, and biopsies.  We've had ups and downs since treatment, but he's doing good, half-heartedly dieting to lose some pounds.  Maybe I'll pick up some freeze-pops as a special treat!      Take care, Ozy - I'm wishing you all the best.  

  • ozymandible
    ozymandible Member Posts: 324 Member
    #230
    ProustLover said:

    These here parts

    Living on the shores of Lake Erie, Buffalo-way, we call 'em freeze pops...that's our story, and we're sticking with it! 

    Your stage of taste and swallowing sounds further along than many others after treatment.  Unlike my poor husband, you're not reporting any major mouth sores.  The mouth sores plagued him for months, and the mucuous plagued him for weeks after treatment.   Like you, his cancer developed after years of leukoplakia, dysplasia, and biopsies.  We've had ups and downs since treatment, but he's doing good, half-heartedly dieting to lose some pounds.  Maybe I'll pick up some freeze-pops as a special treat!      Take care, Ozy - I'm wishing you all the best.  

    Thank you.  I appreciate that

    Thank you.  I appreciate that..

    Wishing you and your husband the best also.

    : )

  • ozymandible
    ozymandible Member Posts: 324 Member
    edited July 2021 #231
    Still tubing pretty much

    Still tubing pretty much everything although I do stick my toe in the water by tasting something everyday.

    Was bored senseless so I made pasta carbonara for the seeing eye kid.  I even drug out the pasta machine.

    Drinking a tiny bit of water here and there to keep swallower going.  The amount I'm able to drink is very slowly increasing everyday so that's a good sign.

  • ozymandible
    ozymandible Member Posts: 324 Member
    #232
    Hooray!  The PICC line is

    Hooray!  The PICC line is gone!  I have FU in a month or so with chemo NP and radiation people.  Just gonna chill until then and work my way back to eating somehow-hopefully.

    WBC a teeny bit low but not really enough to worry about.

    Pain is a lot less this week neck is almost healed.

  • wbcgaruss
    wbcgaruss Member Posts: 2,465 Member
    edited July 2021 #233
    Progress

    You're making progress and I am so glad for you.
    PICC Line Out, it's always good to get something removed it means you don't need it anymore and gives a feeling of progress.
    Less pain, healed neck, ozy you got it made.
    Take Care-God Bless-Russ

  • ozymandible
    ozymandible Member Posts: 324 Member
    edited July 2021 #234
    Seeing eye kid is having

    Seeing eye kid is having lobster tortellini and garlic bread.  I might make a meatloaf dinner for the kids in a few days.

  • wbcgaruss
    wbcgaruss Member Posts: 2,465 Member
    edited July 2021 #235
    ozymandible said:

    Seeing eye kid is having

    Seeing eye kid is having lobster tortellini and garlic bread.  I might make a meatloaf dinner for the kids in a few days.

    The Wife

    Just made a bunch of meatloaves this morning we will have some as a meal tomorrow.
    She makes a large quantity and freezes it into meal sizes.
    Just thaw one out and add a couple of veges and you got a meal.
    Take Care-God Bless-Russ

  • ozymandible
    ozymandible Member Posts: 324 Member
    edited July 2021 #236
    wbcgaruss said:

    The Wife

    Just made a bunch of meatloaves this morning we will have some as a meal tomorrow.
    She makes a large quantity and freezes it into meal sizes.
    Just thaw one out and add a couple of veges and you got a meal.
    Take Care-God Bless-Russ

    I used to do stuff like that

    I used to do stuff like that until the frezzer took a dump.  It's just me and the seeing eye kid now so going to downsize.

  • wbcgaruss
    wbcgaruss Member Posts: 2,465 Member
    edited July 2021 #237
    ozymandible said:

    I used to do stuff like that

    I used to do stuff like that until the frezzer took a dump.  It's just me and the seeing eye kid now so going to downsize.

    We Don't

    Have a big or separate freezer just a side-by-side refrigerator freezer.
    Sometimes we have to shift around and move a few things to fit stuff in and when we go to the store be careful how much we buy.
    Work with what ya got.
    Take Care-God Bless-Russ

  • ozymandible
    ozymandible Member Posts: 324 Member
    edited July 2021 #238
    Our freezer is packed.  Need

    Our freezer is packed.  Need to eat it down.

    Was able to choke down about 3/4 cup of cornmeal mush last night .  Made scrambled eggs, potatoes O'Brien and fried mush with hollandaise sauce but just couldn't face anymore after about three little bites.  Seeing eye kid ate well this morning!  I can drink coffee though.  :)

    Still, I have to do a few bites a day to keep everything working.  Am doubling down on my zinc supplement amd sipping blueberry lemon water(drink mix-sugar free)because zinc and lemon are rumored to help bring taste back.  I have a tiny hint of flavor that vanishes after one or two bites.

    Pain is almost gone and far better than last week.  Maybe in a week or so I'll try and see if I can swallow pills again.

  • wbcgaruss
    wbcgaruss Member Posts: 2,465 Member
    #239
    ozymandible said:

    Our freezer is packed.  Need

    Our freezer is packed.  Need to eat it down.

    Was able to choke down about 3/4 cup of cornmeal mush last night .  Made scrambled eggs, potatoes O'Brien and fried mush with hollandaise sauce but just couldn't face anymore after about three little bites.  Seeing eye kid ate well this morning!  I can drink coffee though.  :)

    Still, I have to do a few bites a day to keep everything working.  Am doubling down on my zinc supplement amd sipping blueberry lemon water(drink mix-sugar free)because zinc and lemon are rumored to help bring taste back.  I have a tiny hint of flavor that vanishes after one or two bites.

    Pain is almost gone and far better than last week.  Maybe in a week or so I'll try and see if I can swallow pills again.

    I'll Tell Ya ozy

    If you can swallow anything right now and it sounds like you can at least a little you are doing well.
    After treatment for throat cancer and 35 rads I could not get anything down for probably several months, it all went in the tube, food, meds, water, everything I could not get anything past my radiation swollen throat.
    My flavor starts and quits but generally, I have a hint of flavor with the food I eat also but I'm set, you still have a chance to find your new normal and a lot of your taste may, may come back time will tell.
    Take Care-God Bless-Russ

  • ozymandible
    ozymandible Member Posts: 324 Member
    edited July 2021 #240
    Today I slept pretty late. 

    Today I slept pretty late.  Didn't feel so good.  Had a lot of gas last night from fizzy drinks I used to degunk my throat.  A little bunged up so all the pressure made my PEG site hurt.  Once I got rid of gas, food and ahem old food carried around way too long I felt much better.

    Seeing eye kid wants cherry cheese danishes.  I am attempting to make puff pastry.  If that goes well, I will move on to croissants.

    I remembered what one of the old timers(Phrannie)said about being able to taste cauliflower cream soup with cheese so that was my dinner after I blended it in the Vitamix.  It was pretty good.  I drank it.  :)

    I used the Vitamix to chop some onions and split them into 1/2 cup portions so they don't go bad before we can use them.  Need to buy some boneless chicken to can.

    I think I'm going to get a lot of use out of that Vitamix.  I cook a lot of mexican food and you need one or even two good blenders to make mexican food a lot. (salsa, enchilada sauce, chile gravy, etc)

    I'll post later if the cherry danishes were a boom or a bust.

  • ozymandible
    ozymandible Member Posts: 324 Member
    #241
    Well the cherry danish was a

    Well the cherry danish was a boom for the seeing eye kid but a bust for me(tasted like cardboard).

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