Noob with floor of mouth cancer

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  • ozymandible
    ozymandible Member Posts: 324 Member
    edited May 2021 #102
    Ha!  Went to my mom's house

    Ha!  Went to my mom's house today and fixed the tile that fell off the tub enclosure.  It was a real mickey mouse job I did but it looks okay and didn't cost anything we already had what we needed to get it done.  So thankful I can still do what I did before surgery.  I am hoping that being strong enough to do these things will help me get through chemo and rads better.

  • ozymandible
    ozymandible Member Posts: 324 Member
    edited May 2021 #103
    Went to the dentist a couple

    Went to the dentist a couple weeks ago but just now got teeth cleaned.  The dentist didn't think I would need dental trays but I did buy some RX high flouride toothpaste from them.

     

    Had another chemo consult with the nurse practitioner instead of the doctor this time.  Patient education.  Labs were drawn.  Inching closer

  • ozymandible
    ozymandible Member Posts: 324 Member
    edited May 2021 #104
    I hope the delay in treatment

    I hope the delay in treatment didnt make this spread.  The right side of my throat feelsweird when I swallow and I feel like I have a tennis ball under my jaw on the right(bad)side.  I keep getting a headache in my right jaw joint back of head.  Don't know why.  Exercise?  Chewing on one side only?

  • wbcgaruss
    wbcgaruss Member Posts: 2,451 Member
    edited May 2021 #105
    ozymandible said:

    I hope the delay in treatment

    I hope the delay in treatment didnt make this spread.  The right side of my throat feelsweird when I swallow and I feel like I have a tennis ball under my jaw on the right(bad)side.  I keep getting a headache in my right jaw joint back of head.  Don't know why.  Exercise?  Chewing on one side only?

    Thanks For

    Keeping us updated ozy. I certainly hope there is nothing extra going on. Try not to worry many odd things happen in H&N like telegraphing pain and other things going on. A lot of functions and nerves in one small area. Is your treatment starting soon? Take Care-God Bless-Russ

  • ozymandible
    ozymandible Member Posts: 324 Member
    edited May 2021 #106
    In a few days Russ. Trying

    In a few days Russ. Trying not to think about it.  Dreading it yet looking forward to it.  :)

  • ozymandible
    ozymandible Member Posts: 324 Member
    #107
    Oh headache was because my

    Oh headache was because my neck needed cracking.

  • ozymandible
    ozymandible Member Posts: 324 Member
    #108
    Eating potato salad, cheetos

    Eating potato salad, cheetos and crackers-while I can.  So far so good.  I got up early enough to eat a couple of scrambled eggs and toast before I went in I think some of the old timers said don't go in on an empty stomach.

  • wbcgaruss
    wbcgaruss Member Posts: 2,451 Member
    #109
    ozymandible said:

    Eating potato salad, cheetos

    Eating potato salad, cheetos and crackers-while I can.  So far so good.  I got up early enough to eat a couple of scrambled eggs and toast before I went in I think some of the old timers said don't go in on an empty stomach.

    Congrats And Good For You

    You made it through your first treatments and pretty well. This is a big deal getting the first one done and maybe the next one or two then you will probably be as comfortable with it as you are going to get. Thanks for the update-Wishing You The Best-Take Care-God Bless-Russ

  • ozymandible
    ozymandible Member Posts: 324 Member
    #110
    Thanks Russ.(and lurkers.  Hi

    Thanks Russ.(and lurkers.  Hi lurkers!)  Still no nausea(yet...)  Took bedtime dose of zofran.  They gave me compazine for breakthroughs.  Took my gabapentin for a good night's sleep without obsessive worrying and to get rid of occasional twinges in neck and forearm(dissection and graft).  

    My chemo nurse had difficulty finding a vein for me.  She lobbied for a picc line because of how tiny my veins are and not wanting to wreck the poor little things with chemo drugs.  I was just loving being able to jump in the tub again.  I will have to triple bag the peg and the picc after I get them and carefully work my way around them when I shower and use my graft arm to shampoo my hair so the water doesn't run down. Luckily I'm old and have dry hair so I can go a couple of days without scrubbing my scalp but I have to be clean ain't no two ways about it!   First world problems, right?  Haha!

    I have plants to pot up and transplant before I get too rekt.  Need to restring the retractible clothesline.  Put new grout in the cracks on the shower floor.  Get after the weeds with the Weedeater.  I'm tellin you it never ends but I'm so grateful to be alive and still able to do this stuff.

    I might be one of those unlucky souls who gets burnt to a crisp though.  I could really feel that lukewarm water on my neck amd it's only the first day. ? I am not wearing makeup on the bad side because I want to just sort of rinse and go because we aren't supposed to scrub around the nuke site.

     

    Speaking of that time to put the lotion on my skin(obscure movie reference)and get to sleep.  Good night.

  • ozymandible
    ozymandible Member Posts: 324 Member
    edited June 2021 #111
    I decided some of the

    I decided some of the headache might be lymph gland(lack of)related.  Doing light lymph massage per YT video Russ posted.

    Day 1 chemo and rads  wasn't as bad as I thought.  It's hard to get my mouth where I can breathe through it or my nose for a bit so the first half was repeatedly panicking over whether or not I will be able to swallow around the dang mouth guard that I almost couldn't get in.

    Chemo(once a week)was about 5 hours.  So far so good on the nausea.  I felt a little queasy about halfway through but that went away.  (disclaimer-I haven't tried to eat yet will let lurkers know how it went later). Don't take anti nausea meds until bedtime and then I will follow the schedule even if I'm not sick as per patient and medical recommendations.

  • wbcgaruss
    wbcgaruss Member Posts: 2,451 Member
    #112
    ozymandible said:

    Thanks Russ.(and lurkers.  Hi

    Thanks Russ.(and lurkers.  Hi lurkers!)  Still no nausea(yet...)  Took bedtime dose of zofran.  They gave me compazine for breakthroughs.  Took my gabapentin for a good night's sleep without obsessive worrying and to get rid of occasional twinges in neck and forearm(dissection and graft).  

    My chemo nurse had difficulty finding a vein for me.  She lobbied for a picc line because of how tiny my veins are and not wanting to wreck the poor little things with chemo drugs.  I was just loving being able to jump in the tub again.  I will have to triple bag the peg and the picc after I get them and carefully work my way around them when I shower and use my graft arm to shampoo my hair so the water doesn't run down. Luckily I'm old and have dry hair so I can go a couple of days without scrubbing my scalp but I have to be clean ain't no two ways about it!   First world problems, right?  Haha!

    I have plants to pot up and transplant before I get too rekt.  Need to restring the retractible clothesline.  Put new grout in the cracks on the shower floor.  Get after the weeds with the Weedeater.  I'm tellin you it never ends but I'm so grateful to be alive and still able to do this stuff.

    I might be one of those unlucky souls who gets burnt to a crisp though.  I could really feel that lukewarm water on my neck amd it's only the first day. ? I am not wearing makeup on the bad side because I want to just sort of rinse and go because we aren't supposed to scrub around the nuke site.

     

    Speaking of that time to put the lotion on my skin(obscure movie reference)and get to sleep.  Good night.

    ozy I Had

    A port in my chest and it is under your skin and it heals over. This would be an option same as a pic line but may not be the right thing for your situation but run it by your chemo nurse. A Port gives you more freedom of movement and is under your skin so you can shower, etc. But picc lines are for the shorter term. Run it by your nurse and here is a link about the pros and cons of both  https://blog.mighty-well.com/2017/07/picc-line-vs-port-important-facts-to-know-before-making-a-decision/

    Wishing You The Best-Take Care-God Bless-Russ

  • ozymandible
    ozymandible Member Posts: 324 Member
    edited June 2021 #113
    They said the port was more

    They said the port was more for long term so looks like a picc for this short timer.

    Cracks have been grouted in my shower and I have them covered with plastic.

    Weeds whacked.  Still have to string the clothesline and pot up my seedlings.  Maybe over the weekend.

    Seeing eye kid and I are cooking enchiladas, black beans and rice for dinner.  So far no nausea.  Ate eggs and toast again this morning and had a shake made from flavorless tube feed that I doctored up with stevia, orange, coconut, almond and vanilla extract withe a bit of fiber protein powder and flax oil it was pretty good for "pancake mix" which is what my daughter called it.  Had things to do didn't want to sit down and eat water pik and brush had to get on with things.

    No nasty Boost or Ensure for me!

  • ozymandible
    ozymandible Member Posts: 324 Member
    edited June 2021 #114
    Should have been an

    Should have been an uneventful day.  Radiation in the AM, lunch and a PICC line placement.  By the time I got home the thing was seeping blood I had to have my boy drive me all the way back so they could glue it up and put a new dressing on me.  So far so good.  Probably just going to do chicken soup or doctored up pancake mix tonight.  Whupped.  :). Kids planning to baby me.  Gonna hate having to slow down already.

    3 rads down and 30 more to go.  Didn't get sick from chemo, staying hydrated and fed so far so good.  Hanging in there.

  • wbcgaruss
    wbcgaruss Member Posts: 2,451 Member
    edited June 2021 #115
    All Good So Far

    With treatment sounds like you are doing well. This early stage is the easier part. The later stages and the several weeks after finishing are what you have to brace yourself for. But not everybody experiences it the same maybe you will have a not so bad time-certainly hope so. You're still on my prayer list through this. The pic line glitch I believe was just one of those things glad they got you fixed up-Wishing You The Best-Take Care-God Bless-Russ

  • ozymandible
    ozymandible Member Posts: 324 Member
    #116
    Thank you Russ.  The next two

    Thank you Russ.  The next two days will be glorious if I don't have to go anywhere!

  • ozymandible
    ozymandible Member Posts: 324 Member
    #117
    Good heavens I've only had

    Good heavens I've only had three rads and it already hurts to swallow.  I took two gabapentin, one vicodin and three ibuprofen and it took all I had to eat breakfast.

    Wondering if part of the problem could be lymph or other fluid bunching up in my head while I sleep? 

    May have to start sleeping in the recliner again?

    I'm doing my exercises but overnight it got extremely difficult.  

  • wbcgaruss
    wbcgaruss Member Posts: 2,451 Member
    edited June 2021 #118
    ozy Check With

    Your team about these problems. Stay ahead of the pain is good. Ask them about magic mouthwash it is a concoction you drink or gargle with that numbs your throat so you can swallow and you take it I think about 20 minutes before eating. It would be good to use the recliner a lot of us used one and later in treatment your saliva gets thick and especially gags you if laying down and you have to get it out and it is easier to work with the situation in a recliner..

  • ozymandible
    ozymandible Member Posts: 324 Member
    #119
    I'll ask them on Monday.  It

    I'll ask them on Monday.  It's more muscular than like mouth sores kind of thing.  Like I need a chiro adjustment or something.  What I've been doing is taking pain pills and slowly trying to power through the stretching and swallowing exercises.  If I don't keep exercising the trismus monster might get me! Might have to allow an extra hour for pain meds to kick in so I can eat in the morning before I go.

    I was not expecting this already.  Maybe in a couple weeks, yanno? But not after just three days!

  • ozymandible
    ozymandible Member Posts: 324 Member
    edited June 2021 #120
    Dang it!  These pain meds are

    Dang it!  These pain meds are going to turn me into a potato!

  • wbcgaruss
    wbcgaruss Member Posts: 2,451 Member
    #121
    ozymandible said:

    Dang it!  These pain meds are

    Dang it!  These pain meds are going to turn me into a potato!

    oxy Hang In There

    On the pain meds. Don't short-change yourself take them as you need them and don't wait till your pain is bad if need be just take them on a schedule to stay ahead of the pain. Take what is needed for now as it can change but you are in a situation where you need them. None of us like to take meds unless we need them but till you get through this cancer situation things are a little different and you have to adapt to the situation. Look at these meds as one of your tools in this cancer battle. I took a lot of meds during my first cancer but as you get through treatment I slowly phased them out and dropped them completely when I could. If you get to where you have trouble getting pills down there are liquid pain meds to take from liquid aspirin to Hydrocodone. And yes definitely keep going with the swallowing and stretching exercises. Take Care-God Bless-Russ

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