Noob with floor of mouth cancer

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  • ozymandible
    ozymandible Member Posts: 324 Member
    #182
    Blecch I have no appetitite

    Blecch I have no appetitite today but I know I'm hungry and need to eat.  Does that make sense?  Lol!

    I had a cup of coffee this morning, drove to rads, went to Costco after rads and bought a few things and ate some tiramisu when we got home.

    Unfortunately the tiramisu tasted like shaving cream...

    But the cream of broccoli soup was okay and the coconut water is fine.  That's about all I can manage right now. Having to take more compazine I guess I'll have to get a refill so I can keep eating.  :( For dinner I'll do more of the cream.of chicken stuff I made yesterday.  That was pretty good.

    Seeing eye kid is going to start some cream of potato soup for me God bless her.

    We bought unsalted bone broth and some coconut milk.  I'll have to try the coconut milk and see if it tastes like anything(besides salt-yuck)

    Just taking it easy.  Watched the Jeff Bridges version(Coen Brothers, yeah!)of True Grit.  I forgot how good that movie is.  Might start Once Upon a Time in the West.

    Later.

     

    Ozy

  • ozymandible
    ozymandible Member Posts: 324 Member
    edited July 2021 #183
    Coconut milk is good!  Not

    Coconut milk is good!  Not salty.  If I can keep up my fluids maybe food will be more attractive.  : )

  • GibiSamtin
    GibiSamtin Member Posts: 9
    edited July 2021 #184
    I hope you okay

    Get better buddy

  • SuzJ
    SuzJ Member Posts: 446 Member
    edited July 2021 #185
    Ozy..

    You are almost there, but also at the worst part.. Radiation, the gift that keeps on giving. Talk to (usually) the radiation people  my RadOnc Nurse was awesome.. after treatment, I woke up one morning, with gloopy sores all over my neck - ewwww...

    Went to Radiation, and found my nurse, and finally cried about something. I woke up with my hair, nightdress, everything, stuck together. She took me back, showed my son how to clean it, how to apply cream, then cover in padded dressings, then tubukar stocking over it all. took a week or 2 to heal, no scars.

    Also (sorry) you are headed into phlegm hell - I thought I was superwoman, but this part kicked my butt

  • ozymandible
    ozymandible Member Posts: 324 Member
    #186
    SuzJ said:

    Ozy..

    You are almost there, but also at the worst part.. Radiation, the gift that keeps on giving. Talk to (usually) the radiation people  my RadOnc Nurse was awesome.. after treatment, I woke up one morning, with gloopy sores all over my neck - ewwww...

    Went to Radiation, and found my nurse, and finally cried about something. I woke up with my hair, nightdress, everything, stuck together. She took me back, showed my son how to clean it, how to apply cream, then cover in padded dressings, then tubukar stocking over it all. took a week or 2 to heal, no scars.

    Also (sorry) you are headed into phlegm hell - I thought I was superwoman, but this part kicked my butt

    Thank you for the information

    Thank you for the information-definitely watching out for that stuff.  Using the creams faithfully but I make sure it's all off of me before I get the next zap I don't want to roast like a chicken.  As soon as I get zapped, I put the first dose of creams on second one goes on near bedtime.

    The opiates I take are mostly just enough to dry up secretions some so I don't choke at night.  I do sleep sitting up.

    I have 8 more zaps to go now.  I just look like I have a bad sunburn right now.  The radiation nurses tell me I am faring better than most.  Hoping it doesn't all go sideways in a day or two.

    How did you clean it up and manage it anyway?  I would really appreciate that information!  

  • wbcgaruss
    wbcgaruss Member Posts: 2,451 Member
    edited July 2021 #187
    YAY Ozy

    Still at it and getting to the finish line it is in sight now. Yes watch the phlegm I slept in a recliner also but woke up a couple of times with it in my throat cutting my air off and rough to clear-Take care-God Bless-Russ

  • ozymandible
    ozymandible Member Posts: 324 Member
    #188
    Thanks Russ.  I still have

    Thanks Russ.  I still have the snot sucker and used it once or twice in the last couple of weeks.

    Just got back from radiation, gas and grocery seeing eye kid made me some cream of asparagus soup gonna try and eat that.

    Was up a couple pounds probably just fluid from chemo.

  • ozymandible
    ozymandible Member Posts: 324 Member
    #189
    Well I felt good enough to do

    Well I felt good enough to do dishes, some laundry, scrubbed bathroom sinks and toilets and made wonton soup for seeing eye kid and myself.

    Unsalted organic chicken bone broth, garlic, ginger, carrots, celery, cabbage, wontons, rice vinegar, sesame seeds-didn't have sesame oil, soy sauce and some soft cooked rice.  Seeing eye kid had egg rolls with her unblended soup.  My soup was blended but it was still kind of tasty.

    Don't do mixed berry ensure.  Seeing eye kid said it was strictly SHTF food a cut above cannibalism.  LOL!  She's funny.

  • ozymandible
    ozymandible Member Posts: 324 Member
    #190
    I forgot I'm using flavored

    I forgot I'm using flavored sparkling water to cut the crud in my throat.  No caffeine, no sugar so can use at bedtime.  Don't want to get too much baking soda in me neutralizing stomach acids and slowing down my digestion.  Getting hard to meet requirements but still feeling ok.

    7 more rads!!!!!

  • ozymandible
    ozymandible Member Posts: 324 Member
    edited July 2021 #191
    I must have hundreds of

    I must have hundreds of people praying for me.

    Believe it or not, I ate a piece of cheesy garlic toast last night.

    When we got home from rads I made eggs benedict for me and the seeing eye kid and was able to eat!!!!!!!!!!!!! With coffee!!!

    Not a whole lot of flavor had to take tiny bites but was able to eat.  

    Seeing eye kid thinks God is letting me have whatever I want before it all goes sideways.

    I have chicken carnitas in the crockpot.  I'll fry it up and make tacos out of it on homemade tortillas tonight.  We'll see what happens-could be a bust.

    God is so good!

  • wbcgaruss
    wbcgaruss Member Posts: 2,451 Member
    edited July 2021 #192
    ozymandible said:

    I must have hundreds of

    I must have hundreds of people praying for me.

    Believe it or not, I ate a piece of cheesy garlic toast last night.

    When we got home from rads I made eggs benedict for me and the seeing eye kid and was able to eat!!!!!!!!!!!!! With coffee!!!

    Not a whole lot of flavor had to take tiny bites but was able to eat.  

    Seeing eye kid thinks God is letting me have whatever I want before it all goes sideways.

    I have chicken carnitas in the crockpot.  I'll fry it up and make tacos out of it on homemade tortillas tonight.  We'll see what happens-could be a bust.

    God is so good!

    God Is

    In fact Good to us--

     

    https://www.youtube.com/watch?v=8TG8Bb-6t60

     

    Glad you can eat so well at this stage.
    Also, you seem to still have a high energy level.

    Go! ozy Go!

    Take Care-God Bless-Russ

  • ozymandible
    ozymandible Member Posts: 324 Member
    edited July 2021 #193
    Hi Russ.

    Hi Russ.

    Chicken carnitas was a bust for me but seeing eye kid liked it.

    I ate the rest of the cream of asparagus soup.

    If I get hungry later I guess I'll just tube it since I already brushed my teeth.

  • wbcgaruss
    wbcgaruss Member Posts: 2,451 Member
    edited July 2021 #194
    Well The Chicken

    Carnitas might have been a bust for you but it sure seems they didn't go to waste the kid was sure at em. Hey, you had asparagus you can't beat that anytime so you actually did eat something-Great. Carnitas-never heard of them-you eat exotic-great keep eatin.

    Take Care-God Bless-Russ

  • ozymandible
    ozymandible Member Posts: 324 Member
    edited July 2021 #195
    Carnitas is just spanish word

    Carnitas is just spanish word for meat?  I cook chicken or pork in the crock pot with citrus and spice then brown it in fat after cutting up.

    It goes on homemade corn tortillas with cilantro and onions and tomatillo sauce.  Really nummy stuff on a normal day.

     

    I busted out my tube supplies today.  Tired of pills getting stuck in my throat(I hacked up more than a few)and tired of trying to eat stuff that  tastes like nothing.  

    I'll keep the swallowing equipment functional with whatever I use to degunkify my throat and the occasional ensure.  I just can't keep trying to eat tasteless stuff right now it's starting to turn my stomach.  Not worth getting my teeth filthy right now.  

    Man, my stomach is tiny now and anything I put in there just turns into gas.  Burping and pain all the time.  Maybe that will be less with formula.

    Maybe now is the time to keep it simple.  Maybe real food is getting to be too much work for my poor cancer ridden body to handle.  Haha!

    So I suppose I'd better put swallowing exercises way higher on the old priority list since I'll be doing a whole lot less swallowing now.

     

    I only have 6 more rads to go.  I don't know if I'm on a lower dose or what but right now I just look like I have a sunburn and not even a really bad one.  My mouth is pretty good.  Not too sore.  That could be because I'm actually missing that one nerve that refers pain all over the place on my right side.  I'm actually having far less pain now than before I had my surgery.

     

    I have enough tube feed and ensure to last about a month.  After my mouth heals and some of this chemo rad crap is out of my system, things should taste a lot better and not be so grainy.  Right now, no matter how much I blend something, I can feel the tiny little particles sticking in my throat.  I don't know how on earth I was able to eat what I did the last couple of days.  

     

    After my food settles I'll clean up, change my jammies and work on the baby quilt I started for my son's friend.  My son has known this guy all his life, he has always been a very good friend to my son and I've fed him countless times and treated him like my own.  I've always thought the world of him.  He and his girl are expecting a little boy which is a miracle because they both have issues which would make that difficult.  He had cancer when he was a little boy-some kind of leukemia IIRC.

    Ok, over and out for now.  :)

  • ozymandible
    ozymandible Member Posts: 324 Member
    #196
    wbcgaruss said:

    God Is

    In fact Good to us--

     

    https://www.youtube.com/watch?v=8TG8Bb-6t60

     

    Glad you can eat so well at this stage.
    Also, you seem to still have a high energy level.

    Go! ozy Go!

    Take Care-God Bless-Russ

    That was great!

    That was great!

    Are these people from your church?

  • ozymandible
    ozymandible Member Posts: 324 Member
    #197
    After today only 4 rads and 1

    After today only 4 rads and 1 chemo.  Will try and eat some little thing every other day or so so my esophagus doesn't get amnesia.  Still driving there and back.  Got the silvadene and domeboro from the NP just in case my neck gets really nasty.  I added coconut oil to my skin care regime.  It felt very soothing.

    The seeing eye kid and I went to the fabric store yesterday.  First time in three years. I needed a couple things to finish out the baby quilt and we got t shirt fabric for a shirt for me and PJ set for her.  Maybe I'll post a picture of the quilt if it turns out ok.  I'm lousy at apparel but I keep on trying.

    Ok, time for brekkie.  Rev up your syringes!  Haha!

  • ozymandible
    ozymandible Member Posts: 324 Member
    #198
    My last chemo was today!!!!!!

    My last chemo was today!!!!!!!!!!!!!!!

    Woohoo!!!!!!!

    That is all.

    ?

  • ozymandible
    ozymandible Member Posts: 324 Member
    edited July 2021 #199
    Well, things have been going

    Well, things have been going sideways quick!

    It really hurts to swallow now.

    Looks like I will be tubing it for sure for a while.

    I just ate an open face egg sandwich last night too.

    I hate to see what I'll be like next week after the last rad.  :)

  • ozymandible
    ozymandible Member Posts: 324 Member
    edited July 2021 #200
    Kind of just sleeping a lot. 

    Kind of just sleeping a lot.  Not really talking much and tubing it for food now although still drinking a sip or two of glutamine water just to keep things from drying up too bad and hoping the glutamine heals me a little.

    Hurting unit now bit could definitely be a lot worse(hoping it doesn't get a whole lot worse though)

    Putting the silvadene on the worst spots three times a day not hurting as much as before.  

  • ozymandible
    ozymandible Member Posts: 324 Member
    #201
    Grinding up pain pills and

    Grinding up pain pills and other meds to put into my tube.  Pain pills every 4 to 6 hours depending on what I'm taking.  Gabs are six hours, vikes are four trying to do both every six hours just to keep it simple.  Compazine is every six hours too.  Nothing too earth shattering on the pain meds.

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