help me

deron67
deron67 Member Posts: 1
in Head and Neck Cancer #1
I had my surgery on january 31st of this year,its now July my Radation ended in April and I stilln hurt I cant eat still on protein shakes cant talk right my mouth is always dry and i just hurt all over is anyone else going thru this anyone

Comments

  • Tim6003
    Tim6003 Member Posts: 1,514 Member
    #2
    Hi Deron ...
    Yes sir.

    I finished my radiation on January 20, 2012. For the first 30 days it was BRUTAL, for the next 30 days after that was NOT much better ...in fact I did not get off my pain meds until the end of April (that would be 3 full months) ...I took 6 Narco a day and wore two Fentynol pain patches ...my wife still says May was a rough month ...that would mean I was in pain for four months ...and I did not have surgery...just radiation and Erbiux....you did have surgery.

    It's no fun my friend ...but all sounds normal. Of course I am no doctor and you should always keep your doctors / team informed of how you are doing. They are there for you and pain control is an important part of healing. You've probably heard this, "stay ahead of the pain" ....

    My feeding tube did not come out until June ....I lost 70lbs in treatment and to date have lost 85lbs total....

    My mouth is still dry, quite dry. I keep bottled water by the bed. The mouth sores, swollen tongue, ulcers, pain swallowing are all par for the course.

    John / Skiffin posts a SUPERTHREAD on here from time to time that another lady created, it's very helpful.


    Bes,

    Tim
  • fisrpotpe
    fisrpotpe Member Posts: 1,349 Member
    #3
    Tim6003 said:

    Hi Deron ...
    Yes sir.

    I finished my radiation on January 20, 2012. For the first 30 days it was BRUTAL, for the next 30 days after that was NOT much better ...in fact I did not get off my pain meds until the end of April (that would be 3 full months) ...I took 6 Narco a day and wore two Fentynol pain patches ...my wife still says May was a rough month ...that would mean I was in pain for four months ...and I did not have surgery...just radiation and Erbiux....you did have surgery.

    It's no fun my friend ...but all sounds normal. Of course I am no doctor and you should always keep your doctors / team informed of how you are doing. They are there for you and pain control is an important part of healing. You've probably heard this, "stay ahead of the pain" ....

    My feeding tube did not come out until June ....I lost 70lbs in treatment and to date have lost 85lbs total....

    My mouth is still dry, quite dry. I keep bottled water by the bed. The mouth sores, swollen tongue, ulcers, pain swallowing are all par for the course.

    John / Skiffin posts a SUPERTHREAD on here from time to time that another lady created, it's very helpful.


    Bes,

    Tim

    Tim
    try Stopper4 for your dry mouth. i tried everything over the years and found this, by far 3-4 times better than anything else for me. the only place you can get it now is on line. esp. at bed time and thru the night

    john
  • fisrpotpe
    fisrpotpe Member Posts: 1,349 Member
    #4
    same
    i finished my treatments many years back on april 1, it was end of aug. before eating anything that is substantial. it's going to hurt and you may just need to try more and more things, kind of like pushing it a little. no matter what you eat it is going to hurt, so starting off with things like scrabbled wet eggs or loose mashed potatoes, anything soft and work your way up. keep in mind each step will get harder each time but in reality the recovery is slow and until eating most anything will the pain finally go away.

    good luck
    john
  • CivilMatt
    CivilMatt Member Posts: 4,722 Member
    #5
    help
    deron67,

    I can eat, except most everything feels awful. Nothing tastes right so I live mostly on smoothies. My mouth is often as dry as the desert. I don’t travel anywhere without my water bottle. So minus the hurting pain I feel your pain.

    Your conditions sound normal to me.

    Best,

    Matt
  • Mikemetz
    Mikemetz Member Posts: 465 Member
    #6
    You're pretty much on schedule
    As Tim said and I can support from my own experience, you are pretty much on schedule in your recovery. I stayed on the Fentenyl patch for more than four months following the end of rads, and had my peg tube a while longer than that. I was OK to get back to work in a limited capacity, but there was a lot of pain control and "rest management" (aka, naps) going on well into the summer after finishing rads in April.

    mike
  • Tonsil Dad
    Tonsil Dad Member Posts: 488
    #7
    Mikemetz said:

    You're pretty much on schedule
    As Tim said and I can support from my own experience, you are pretty much on schedule in your recovery. I stayed on the Fentenyl patch for more than four months following the end of rads, and had my peg tube a while longer than that. I was OK to get back to work in a limited capacity, but there was a lot of pain control and "rest management" (aka, naps) going on well into the summer after finishing rads in April.

    mike

    12 weeks out.
    I finished 33 rads on April 13th and as of now I can eat most
    foods but very slowly ( I can't eat bread) , my problem is ...half
    way through eating I get little blisters pop up in the back of my
    mouth which are very painful and this stops me swallowing so
    I stop eating and have a smoothie. The taste has come back
    a little but the main problem is I have no saliva so its sips of
    water or lots of gravies and sauces with the food.
    I am not complaining or mermering as time will heal everything,
    as that is the only problems I have so I thank God everyday.
    Just give it time.

    God bless
    Tonsil dad,

    Dan.
  • longtermsurvivor
    longtermsurvivor Member Posts: 1,842 Member
    #8
    do not despair
    I finished rads on 2/23. Only about half my calories are from solid food, the rest from shakes. It just takes a long time for some of us. I was in depositions all day yesterday. Took along some ensure, because I knew food would be a problem. Half an hour lunch break, at a fast food restaurant, lol. There isnt a thing on the menue I can eat, in less than about half a day of effort. So I chugged down my ensure while the others stood in line to pay. Im a cheap date!

    Pat
  • Tim6003
    Tim6003 Member Posts: 1,514 Member
    #9
    fisrpotpe said:

    Tim
    try Stopper4 for your dry mouth. i tried everything over the years and found this, by far 3-4 times better than anything else for me. the only place you can get it now is on line. esp. at bed time and thru the night

    john

    John...thanks....
    John..thank you. I need to do that!!!

    Tim

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