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Hiedi
Hiedi Member Posts: 19
edited March 2014 in Head and Neck Cancer #1
Good morning or evening depending on where you are.
Looking for someone to talk to/with.
I'm still trying to navigate this sight and read a bit, and feeling very overwhelmed.
«1

Comments

  • doitforoj
    doitforoj Member Posts: 64
    #2
    Hi
    Hi Hiedi,

    My name is Kurt and I recently has been diagnosed with SCC of the base of tongue and has spread to the neck. Just had my PET scan and showed it has not spread anywhere else. Next week I have a out patient surgery to scope my throat and put in my feeding tube. Looks like treatment will begin the first of nov. If there is anything I can share I will ggladly do what I can.

    Kurt
  • Hiedi
    Hiedi Member Posts: 19
    #3
    doitforoj said:

    Hi
    Hi Hiedi,

    My name is Kurt and I recently has been diagnosed with SCC of the base of tongue and has spread to the neck. Just had my PET scan and showed it has not spread anywhere else. Next week I have a out patient surgery to scope my throat and put in my feeding tube. Looks like treatment will begin the first of nov. If there is anything I can share I will ggladly do what I can.

    Kurt

    Thank you Kurt I greatly
    Thank you Kurt I greatly appreciate it.
    By the way that picture is adorable!
  • doitforoj
    doitforoj Member Posts: 64
    #4
    Hiedi said:

    Thank you Kurt I greatly
    Thank you Kurt I greatly appreciate it.
    By the way that picture is adorable!

    thanks
    They are my 15 month twin boys. John and Owen. A big reason to be positive while going through this.
  • Hiedi
    Hiedi Member Posts: 19
    #5
    doitforoj said:

    thanks
    They are my 15 month twin boys. John and Owen. A big reason to be positive while going through this.

    Congratulations! (since i
    Congratulations! (since i couldn't do it 15 months ago) lol
    I use humor to get me through this although sometimes its lacking.
  • Hiedi
    Hiedi Member Posts: 19
    #6
    Hiedi said:

    Congratulations! (since i
    Congratulations! (since i couldn't do it 15 months ago) lol
    I use humor to get me through this although sometimes its lacking.

    BTW-I get your screen name
    BTW-I get your screen name now,
    I was thinking you were a "football" fan.
    (sorry I couldn't resist)
  • doitforoj
    doitforoj Member Posts: 64
    #7
    Hiedi said:

    Congratulations! (since i
    Congratulations! (since i couldn't do it 15 months ago) lol
    I use humor to get me through this although sometimes its lacking.

    humor
    Yes I believe humor is the best medicine. So where are you in your treatment.
  • Hiedi
    Hiedi Member Posts: 19
    #8
    doitforoj said:

    humor
    Yes I believe humor is the best medicine. So where are you in your treatment.

    I guess you can say the back
    I guess you can say the back end of treatment, I'm passed the surgery,
    and radiation stage. And still in physical therapy to reuse the muscles
    in my shoulder, face and neck. I thought I could make goofy faces before
    but this damaged facial nerve is a trip.
  • Hiedi
    Hiedi Member Posts: 19
    #9
    Hiedi said:

    I guess you can say the back
    I guess you can say the back end of treatment, I'm passed the surgery,
    and radiation stage. And still in physical therapy to reuse the muscles
    in my shoulder, face and neck. I thought I could make goofy faces before
    but this damaged facial nerve is a trip.

    Are you frightened?
    Are you frightened?
    I go for my 6mnth. check up Monday and
    I'm beside myself with nerves. I know to
    be positive, but when I am thats
    when you're hit with the opposite news you're
    expecting.
  • doitforoj
    doitforoj Member Posts: 64
    #10
    Hiedi said:

    I guess you can say the back
    I guess you can say the back end of treatment, I'm passed the surgery,
    and radiation stage. And still in physical therapy to reuse the muscles
    in my shoulder, face and neck. I thought I could make goofy faces before
    but this damaged facial nerve is a trip.

    LOL Well your lucky the
    LOL Well your lucky the worst is pretty much behind you. I am in the waiting mode. Hard to wait 3 weeks before they will start treatment. The plan now is no surgery and do chemo and radiation. I don't know if this will change after they do the scope of my throat wednesday. I am in Atlanta going to Emory University Cancer Clinic. They are suppose to be good. We will see. LOL. And thank you for the congrats and funny on the OJ comment. Right now sleeping and eating are the hardest part. Everyone says eat as much as you can but don't have much of an appetite. I am eating but is tough. I feel better after the PET scan and knowing it has not spread further.
  • doitforoj
    doitforoj Member Posts: 64
    #11
    doitforoj said:

    LOL Well your lucky the
    LOL Well your lucky the worst is pretty much behind you. I am in the waiting mode. Hard to wait 3 weeks before they will start treatment. The plan now is no surgery and do chemo and radiation. I don't know if this will change after they do the scope of my throat wednesday. I am in Atlanta going to Emory University Cancer Clinic. They are suppose to be good. We will see. LOL. And thank you for the congrats and funny on the OJ comment. Right now sleeping and eating are the hardest part. Everyone says eat as much as you can but don't have much of an appetite. I am eating but is tough. I feel better after the PET scan and knowing it has not spread further.

    Yes I am frightened but it
    Yes I am frightened but it is more of what lays ahead. I have read a lot of what to expect but I guess until you go through it you never know. I am thinking about you and hope your scan comes back great.
  • Hiedi
    Hiedi Member Posts: 19
    #12
    doitforoj said:

    LOL Well your lucky the
    LOL Well your lucky the worst is pretty much behind you. I am in the waiting mode. Hard to wait 3 weeks before they will start treatment. The plan now is no surgery and do chemo and radiation. I don't know if this will change after they do the scope of my throat wednesday. I am in Atlanta going to Emory University Cancer Clinic. They are suppose to be good. We will see. LOL. And thank you for the congrats and funny on the OJ comment. Right now sleeping and eating are the hardest part. Everyone says eat as much as you can but don't have much of an appetite. I am eating but is tough. I feel better after the PET scan and knowing it has not spread further.

    Thanks, i don't even try
    Thanks, i don't even try sometimes it just pops in there and I have to write it.
    (sometimes gets me into trouble) but that's another story :)

    I can relate on the loss of appetite. I too experienced that. I think it
    was mostly stress oriented though. Believe me, what I lost in weight I definitely
    recovered when I was able to eat normal food again. I even may have over
    compensated. (forgot how good things tasted.

    The sleeping thing is driving me BONKERS!!!!!! Ever since my diagnosis in Feb 09, I can't sleep worth a crap!!! It's horrible!!!!

    Not spreading is always good news to hear. I suppose that it was I'm looking
    forward to hearing Monday.

    I'm located in Ohio, so I'm not too familiar (if at all) with EUCC, Up here I'm not
    far from the Cleveland Clinic so it looks like we are both in good hands respectively.
  • Hiedi
    Hiedi Member Posts: 19
    #13
    doitforoj said:

    Yes I am frightened but it
    Yes I am frightened but it is more of what lays ahead. I have read a lot of what to expect but I guess until you go through it you never know. I am thinking about you and hope your scan comes back great.

    I do suppose that was bit of
    I do suppose that was bit of a ridiculous question to ask. I guess I needed to hear at that moment that I wasn't alone. Although deep inside I know I'm not. And someone else always has it worse off than I do. I thank you, for everything, especially your friendly company at this time. And know that I am hear for you if need be.
  • doitforoj
    doitforoj Member Posts: 64
    #14
    Hiedi said:

    Thanks, i don't even try
    Thanks, i don't even try sometimes it just pops in there and I have to write it.
    (sometimes gets me into trouble) but that's another story :)

    I can relate on the loss of appetite. I too experienced that. I think it
    was mostly stress oriented though. Believe me, what I lost in weight I definitely
    recovered when I was able to eat normal food again. I even may have over
    compensated. (forgot how good things tasted.

    The sleeping thing is driving me BONKERS!!!!!! Ever since my diagnosis in Feb 09, I can't sleep worth a crap!!! It's horrible!!!!

    Not spreading is always good news to hear. I suppose that it was I'm looking
    forward to hearing Monday.

    I'm located in Ohio, so I'm not too familiar (if at all) with EUCC, Up here I'm not
    far from the Cleveland Clinic so it looks like we are both in good hands respectively.

    LOL yeah sometimes I think
    LOL yeah sometimes I think my brain is not connected to my mouth. The worse for me rigth now is waking up. that moment you wake up and then suddenly you realize O yeah...I have cancer. Like be told again every day. That and everyone you have to be positive. I know I have to but you still have to think ...what if. People don't get thhat.
  • Hiedi
    Hiedi Member Posts: 19
    #15
    doitforoj said:

    LOL yeah sometimes I think
    LOL yeah sometimes I think my brain is not connected to my mouth. The worse for me rigth now is waking up. that moment you wake up and then suddenly you realize O yeah...I have cancer. Like be told again every day. That and everyone you have to be positive. I know I have to but you still have to think ...what if. People don't get thhat.

    Oh yeah!! Guilty here!!
    Oh yeah!! Guilty here!! (brain to mouth connectivity)

    That moment is awful isn't it, and 9 out of 10 times that is when you are the most alone,
    everyone is asleep and everything is dead quite. Except you and the thoughts.
    (EWE I'm prolly not helping)

    Being positive is also exhausting too. Especially when you're forcing it
    or trying to find it. I'd be better off with a 500 year old treasure map, and
    an undisclosed location sometimes. LOL
  • doitforoj
    doitforoj Member Posts: 64
    #16
    Hiedi said:

    Oh yeah!! Guilty here!!
    Oh yeah!! Guilty here!! (brain to mouth connectivity)

    That moment is awful isn't it, and 9 out of 10 times that is when you are the most alone,
    everyone is asleep and everything is dead quite. Except you and the thoughts.
    (EWE I'm prolly not helping)

    Being positive is also exhausting too. Especially when you're forcing it
    or trying to find it. I'd be better off with a 500 year old treasure map, and
    an undisclosed location sometimes. LOL

    Not depressing at all.
    Not depressing at all. Refreshing the honesty. Yes being up for everyone is tough. I have found the pity parties to be helpful. Just be alone and let it out for a few minutes. Are you married.
  • Hiedi
    Hiedi Member Posts: 19
    #17
    doitforoj said:

    Not depressing at all.
    Not depressing at all. Refreshing the honesty. Yes being up for everyone is tough. I have found the pity parties to be helpful. Just be alone and let it out for a few minutes. Are you married.

    I've had my fair share of
    I've had my fair share of pity parties, and you're absolutely right, letting
    it out helps. I'm engaged to a wonderful, beautiful, woman. (yes you read that right)
    But I doubt we will ever be "legally" married.

    I'm assuming you are married?! If so how long? How is she coping?
  • doitforoj
    doitforoj Member Posts: 64
    #18
    Hiedi said:

    I've had my fair share of
    I've had my fair share of pity parties, and you're absolutely right, letting
    it out helps. I'm engaged to a wonderful, beautiful, woman. (yes you read that right)
    But I doubt we will ever be "legally" married.

    I'm assuming you are married?! If so how long? How is she coping?

    Been married 8 years and she
    Been married 8 years and she is amazing. Very strong and supportive. It is tough because we have yet to really share are fears. Just being strong for each other. LOL yep did read it twice...was thinking Heidi is an unusual name for a guy. LOL. Well I can honestly say I am 100 percent for gay rights. and believe it or not I vote repulican. LOL...simply repulican for economic reasons. If somebody loves somebody who should say that they should not be together or get married. Don't understand hate for love. Most important I am glad you have someone to lean on while going through this.
  • Hiedi
    Hiedi Member Posts: 19
    #19
    doitforoj said:

    Been married 8 years and she
    Been married 8 years and she is amazing. Very strong and supportive. It is tough because we have yet to really share are fears. Just being strong for each other. LOL yep did read it twice...was thinking Heidi is an unusual name for a guy. LOL. Well I can honestly say I am 100 percent for gay rights. and believe it or not I vote repulican. LOL...simply repulican for economic reasons. If somebody loves somebody who should say that they should not be together or get married. Don't understand hate for love. Most important I am glad you have someone to lean on while going through this.

    LMAO!
    (I'm actually
    LMAO!
    (I'm actually republican can you believe it?!)Economical reasons as well, and believe
    it or not I'm a conservative person too. Oh well, guess God broke a mold or two with me, and still dropping them obviously) hehehe

    It's good to see several years behind a marriage nowadays, Koodo's to you and your wife.
    The talks will come, there is always a time and place. Being strong and there for each other
    is all you can do (plus the honesty).

    I wish my finance had someone to talk to and lean on for support, I don't know how she did it. I don't know where I would be if it wasn't for her. But regardless I'm blessed and it seems that you are too.

    P.s. I like your views feel like running for office? :)
  • doitforoj
    doitforoj Member Posts: 64
    #20
    Hiedi said:

    LMAO!
    (I'm actually
    LMAO!
    (I'm actually republican can you believe it?!)Economical reasons as well, and believe
    it or not I'm a conservative person too. Oh well, guess God broke a mold or two with me, and still dropping them obviously) hehehe

    It's good to see several years behind a marriage nowadays, Koodo's to you and your wife.
    The talks will come, there is always a time and place. Being strong and there for each other
    is all you can do (plus the honesty).

    I wish my finance had someone to talk to and lean on for support, I don't know how she did it. I don't know where I would be if it wasn't for her. But regardless I'm blessed and it seems that you are too.

    P.s. I like your views feel like running for office? :)

    LOL well as long as you are
    LOL well as long as you are on the ticket with me. You need to have her long on here. The are people on here who are family members friends and spouses who are on here. I have to and try and sleep. Kids get up at 7. I have really enjoyed. Good to laugh hope to do it again soon. will be thinking about you Monday.

    PS Glad he broke the mold.
  • Hiedi
    Hiedi Member Posts: 19
    #21
    doitforoj said:

    LOL well as long as you are
    LOL well as long as you are on the ticket with me. You need to have her long on here. The are people on here who are family members friends and spouses who are on here. I have to and try and sleep. Kids get up at 7. I have really enjoyed. Good to laugh hope to do it again soon. will be thinking about you Monday.

    PS Glad he broke the mold.

    It was an absolute pleasure
    It was an absolute pleasure Kurt!!! And thank you as well you've really helped me this evening as well! And I'm sure there will be more laughs to come, especially if I have anything to do with it.
    Try and get some good rest, my prayers are with you.

    Thanx!! your not too shabby yourself!!

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