Pain

KTeacher
KTeacher Member Posts: 1,103
in Head and Neck Cancer #1

Don't want to be a Debbie Downer but I was wondering about your pain level.  I haven't had pain related to diagnosis of my previous cancer(s).  Lump on lip wasn't painful until after surgery and removal of 1 inch of lip, 50 stitches.  A year later, lump on neck, no pain pre surgery.  Neck dissection.  My weird eye situation was more of a vision problem until a few weeks before surgery, then headaches.  I am back on pain meds.  Not one to take them unless needed.  Cancer is on nerve on cheek.  Very painful.  Stabbing, hot pain with headackes thrown in the mix.  I see a radiologist next Tuesday.  Hopefully there will be a plan.  I think cyberknife is a possibility but I have had radiation (H & N) 3 times in the passed 3 years.  Mouth is not working that well either.  Back to soft food, not complaining, I like to eat!  But the food rolls out of the side of my mouth and I don't know it, numb.  Just feeling like I'm going a little crazy.  So hard to see my husband and family worry so much about me,

Comments

  • CivilMatt
    CivilMatt Member Posts: 4,722 Member
    #2
    sorry for the pain

    KT,

    My pain level for you is overwhelming; my pain level for me is nominal. I am sorry that you are in pain, but I do hope the doctor can help you manage it with proper medication.  There are so many different pain meds.

    I am glad you still like to eat; I bet you never guessed you would have to be so methodical about every bite.  These cancers and their side effects make us relearn many of our life routines.

    I do hope some “good” plan comes from your doctor appointment.   Something with success written all over it.

    Be strong, I am thinking good thoughts and saying a prayer or two for you.

    Matt

  • Noellesmom
    Noellesmom Member Posts: 1,859 Member
    #3
    pain

    The face is an area filled with pain receptors and with obvious reasons.

    I'm sorry you are hurting and hope the doctor gets started quickly on a way to control/end the pain.

    Let us know what you find out!

  • katenorwood
    katenorwood Member Posts: 1,912
    #4
    Hello KT !

    I too am very sorry to hear your in pain.  Nerve paths are weird, and depending on the sites yes I agree the pain stinks !  Are they sure there isn't an infection in the mix of things ?  My own personal rule of thumb with the pain medication is if it's at a 4 out  of 10 take the pain med.  It's hard to get it back under control if its at a 8 or 9.  And the stress of pain while fighting to get better isn't a good thing. 

    I know what you mean about feeling a bit crazy.....very normal.  Things feel like there out of our control, and happening way to fast.  Your family loves you so much....let them take some of the burden.  I know for me that's the hardest part !  I too don't want to see them worrried or hurting. 

    My prayers are added to everyone elses...and we are pulling for you !  Many hugs sent !  Katie

  • phrannie51
    phrannie51 Member Posts: 4,716
    #5
    KT....

    You've been through so damn much in the last 3 years....gawd almighty!  I sit here in awe, at your incredible determination to beat the beast.  If you need pain meds, then like Katie said....stay on top of that pain.  There are so many nerves in the face and head, I can only imagine what an abcess tooth feels like and times that by 10. 

    I'm praying for a plan for you.....cyber knife is so precise.....and Candi (hwt) just brought SBRT radiation to the table...another type of radiation that can possibly be used for reoccurances.  Tucking you into my pocket....I want to keep you safe from this cancer crap....Snuggle into the arms of you family, they love you so much....

    p

  • Grandmax4
    Grandmax4 Member Posts: 723
    #6
    Please ask about this

    Years ago, my Dad started experiencing a pain so terrible, in his face, it would literally drop him to his knees...after many, many tests , it was determined he had Tic Douloureux..his was resolved by cutting the nerve . I watched my Dad suffer and cry, it was the worse pain imaginable.Anything could set it off, the touch of a fork when eating, shaving, etc..he never knew when it would attack...wishing you the very best of treatment KT, and a resolute to your pain..you are much respected for the strength you have ..bless you

     

  • debbiejeanne
    debbiejeanne Member Posts: 3,102 Member
    #7
    kt, u r so such a strong

    kt, u r so such a strong person, i really admire you.  i'm sorry u've been thru so much and that u r n pain now.  cancer is such a cruel disease.   i understand u don't like for ur family to worry about u but they love you and i'm thankful that u have loved ones to be with you thru this.  i am saying prayers for all of you.  btw, you r not a debbie downer.  God bess you.

    dj

  • jim and i
    jim and i Member Posts: 1,788 Member
    #8
    So sorry to hear you are

    So sorry to hear you are suffering. The cancer on the nerve has got to be painful. Jim's cancer was pressing on a nerve in his ear and that was awful for him so I imagine the cancer on the nerve itself has got to be unbearable. I pray the doctors can alleviate your pain quickly and that you beat this beast.

    Debbie

  • fishmanpa
    fishmanpa Member Posts: 1,227 Member
    #9
    Ouch!

    KT,

    My goodness! I'm sorry you're dealing with so much pain. I had some peripheral neuropathy from chemo but it was nothing compared to what you're describing. Hopefully they can find something to control the pain.

    What you mentioned about your family hits home for me. Of all the things we deal with having cancer, sparing the hearts of our family and friends is for me, the most difficult aspect. May you find strength and peace and a way to continue the battle and may they find peace and srength as they stand by your side. 

    Positive thoughts and prayers

    "T"

     

  • longtermsurvivor
    longtermsurvivor Member Posts: 1,842 Member
    #10
    Grandmax4 said:

    Please ask about this

    Years ago, my Dad started experiencing a pain so terrible, in his face, it would literally drop him to his knees...after many, many tests , it was determined he had Tic Douloureux..his was resolved by cutting the nerve . I watched my Dad suffer and cry, it was the worse pain imaginable.Anything could set it off, the touch of a fork when eating, shaving, etc..he never knew when it would attack...wishing you the very best of treatment KT, and a resolute to your pain..you are much respected for the strength you have ..bless you

     

    you raise a good point

    as it is almost certain that this degree of pain originates with the trigeminal nerve.  As you suggest, there may be other interventions possible.  Injection perhaps.  Anyway, hoping  Bev gets some resolution of this soon.

     

    Pat

  • luv4lacrosse
    luv4lacrosse Member Posts: 1,410 Member
    #11
    Pain

    Have you tried a Fentanyl Patch? Worked well for me and the medication was a steady release with minimal side effect.

    Mike

  • KTeacher
    KTeacher Member Posts: 1,103
    #12
    Thank you

    for your support and kind words.  I am very glad to have the support of family, friends and the CSN group.

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