So afraid.

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Comments

  • Kent Cass
    Kent Cass Member Posts: 1,898 Member
    delnative said:

    Wow, Sweetblood!
    I just looked at your photo of the modified radical neck dissection. I had one, too, but my incision just went straight down from beneath my right ear and down the side of my neck. Yours is, to say the least, impressive.
    I hope you've healed well, with a minimum of scarring. My doc did a really good job, and unless you look closely, my neck looks kind of normal. Sort of.

    --Jim in Delaware

    Photos
    Checked-out the pix, Sweetblood. Nice PEG. Not so nice of a tumor, though. Musta been kinda ominous for you. As for the scar- only got a 2" horizontal from the biopsy, with the C. If you like scars, you'd love the dousey I got from the post-accident tracheaostomy days of my youth. Thanks for sharing the pix, Sweetblood.

    kcass
  • sweetblood22
    sweetblood22 Member Posts: 3,228
    Kent Cass said:

    Photos
    Checked-out the pix, Sweetblood. Nice PEG. Not so nice of a tumor, though. Musta been kinda ominous for you. As for the scar- only got a 2" horizontal from the biopsy, with the C. If you like scars, you'd love the dousey I got from the post-accident tracheaostomy days of my youth. Thanks for sharing the pix, Sweetblood.

    kcass

    photos
    impressive. lol. yeah, there were a couple hundred stitches there. my neck still hurts everyday. it is 'tight' feeling, and i have very limited mobility. sometimes the nerve endings have that burning pain, and i still have numbness. my left side of my bottom lip will always be paralyzed. i have tried to learn to smile 'evenly'. as far as the pain and lack of mobility goes, i know there is no way i can ever do my old job, or work minimum 48 hrs per week anymore. my left arm is still weaker, but at least i can lift it all the way up to my head. they warned me before surgery that my left arm could hang limp. i am glad it did not and i was able to get it almost back to normal.

    i added one photo of my full face, so you can see how swollen my face was. i still sleep with my head raised or i can have some puffiness. they had to scrape my jawbone cause the tumor attached itself to my jawbone. which i "felt". (not a physical feeling) i told my parents i thought that was the case, and the Ent and sure enough, that was so.

    the scar itself does not look too bad. but you can see a 'chunk' missing out of my left side of under chin and neck where they took out the tumor, salivary gland and all the lymph nodes. you can see where it goes in.



    that stupid tumor was hurting so bad at the end. It went from an invisible swollen lymphnode in october to the size of a large lemon in three months! eeew. i was so glad to get that thing out.

    yes, it was scary. i had swollen lymph nodes many times. thought it no big deal at first. knew i was screwed when the antibiotics did not work.
  • delnative
    delnative Member Posts: 450 Member

    photos
    impressive. lol. yeah, there were a couple hundred stitches there. my neck still hurts everyday. it is 'tight' feeling, and i have very limited mobility. sometimes the nerve endings have that burning pain, and i still have numbness. my left side of my bottom lip will always be paralyzed. i have tried to learn to smile 'evenly'. as far as the pain and lack of mobility goes, i know there is no way i can ever do my old job, or work minimum 48 hrs per week anymore. my left arm is still weaker, but at least i can lift it all the way up to my head. they warned me before surgery that my left arm could hang limp. i am glad it did not and i was able to get it almost back to normal.

    i added one photo of my full face, so you can see how swollen my face was. i still sleep with my head raised or i can have some puffiness. they had to scrape my jawbone cause the tumor attached itself to my jawbone. which i "felt". (not a physical feeling) i told my parents i thought that was the case, and the Ent and sure enough, that was so.

    the scar itself does not look too bad. but you can see a 'chunk' missing out of my left side of under chin and neck where they took out the tumor, salivary gland and all the lymph nodes. you can see where it goes in.



    that stupid tumor was hurting so bad at the end. It went from an invisible swollen lymphnode in october to the size of a large lemon in three months! eeew. i was so glad to get that thing out.

    yes, it was scary. i had swollen lymph nodes many times. thought it no big deal at first. knew i was screwed when the antibiotics did not work.

    Photos
    Sweetblood, I've got the crooked smile, too. I prefer to think of it as a wry smile, but there are times when I'd like to have a full-blown smile and I just can't.
    I too have a chunk missing on the right side of my neck, where they took out the one bum lymph node and a whole lot of good ones as a precaution. But hey, even if my neck looks funny and I can't smile right, at least I'm still here -- and still smiling. (Sort of.)

    --Jim in Delaware
  • train-nut
    train-nut Member Posts: 101
    Next Week
    Mary,

    I wish you well on your surgery next week. It won't be long and you'll be a fellow member of the Survivors' and More-Charming-Than-Ever Club. Rich
  • sweetblood22
    sweetblood22 Member Posts: 3,228
    delnative
    glad to know i am in the same boat. i have never seen another neck dissection. the other patients that went thru rads with me that were hnc patients did not have sugery. do not know 'what is normal'.

    glad i am not alone in the quirky smile club. :)
  • MaryRC
    MaryRC Member Posts: 114

    delnative
    glad to know i am in the same boat. i have never seen another neck dissection. the other patients that went thru rads with me that were hnc patients did not have sugery. do not know 'what is normal'.

    glad i am not alone in the quirky smile club. :)

    4 more days
    Thanks. Yep 4 more days till I belong to the quirkey smile club! I get a bit of anxiety off and on and when I feel it coming on I do something, like go for a walk, listen to my meditation CD. It all helps.
    Sweetblood, I hope you dont mind, I showed your picture of your stitches to my husband. He kept insisting I would have just 3-4 stitches. I am not sure if mine will be like yours, my lump is in the back of my neck, I know my ent is is opening the whole left side but I think the stitches will be farther down? I am not sure. Will know on Monday!
    I just hope I am not super sick to my stomach and have a migraine like I did when I had my shoulder surgery. My ENT said to tell the anesthesolgist about this.
    Mary
  • Kent Cass
    Kent Cass Member Posts: 1,898 Member

    delnative
    glad to know i am in the same boat. i have never seen another neck dissection. the other patients that went thru rads with me that were hnc patients did not have sugery. do not know 'what is normal'.

    glad i am not alone in the quirky smile club. :)

    Consider it...
    a grin, Sweetblood= you are winning a major battle. Yes, a most worthwhile grin, girl. You are a dear Sister, Sweet, and so is one Mary...

    You're getting close to where you wanna be, Mary. Be wanting it to happen, and tired of the damned wait while the C has had a chance to get stronger. Want it to get done NOW, and let yourself realize just how much you really do want it to get done NOW. You got so much life ahead of you, Mary, and so very many good things to do, and have happen. And the only danged thing getting in your way is this thing the Drs. got planned for you. Your life, Mary, and your body- the Drs. are only (albeit major) players on the periphery. Center-stage is you and C. Reckon it's time they enter the picture, Mary. They are not the Ace up your sleeve. Take a deep breath, Mary, and Sweet, and all who know, and have been there:
    the Wildcard is the Lord, and within you, Mary. You're still waiting, so you don't know, yet. Trust me, Sister, you are about to experience a very pleasant surprise, though it may take awhile before...you realize that you have been blessed by the lasting touch of the Lord, and that anything positive is possible. Yes, it comes with a price, to varying degrees with different people/cases, but know beyond any doubt that the Lord is with you, and the price will be entirely acceptable to you, and those around you, Mary. You will not suffer, physically. Between the Lord and modern medicine, all physical suffering is at a minimum. The Lord never gives one more than they can physically handle. Want the start to happen, Mary. You are not scared- you are ready. And all of us are with you, as are all you love and hold dear. Go for it, Sister.

    Believe

    kcass
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    MaryRC said:

    4 more days
    Thanks. Yep 4 more days till I belong to the quirkey smile club! I get a bit of anxiety off and on and when I feel it coming on I do something, like go for a walk, listen to my meditation CD. It all helps.
    Sweetblood, I hope you dont mind, I showed your picture of your stitches to my husband. He kept insisting I would have just 3-4 stitches. I am not sure if mine will be like yours, my lump is in the back of my neck, I know my ent is is opening the whole left side but I think the stitches will be farther down? I am not sure. Will know on Monday!
    I just hope I am not super sick to my stomach and have a migraine like I did when I had my shoulder surgery. My ENT said to tell the anesthesolgist about this.
    Mary

    Keepng this Positive Attitude Mary
    Mary, you've come such a long way from where you have started already with your attitude. If you haven't already done so, read through your postings from the beginning. It's like the steps of denial. You have finally reached the acceptance stages and you are in a positive place. This is where you become strong, you deal, and you are now in charge.

    Keep this frame of mind (and yes I'm sure there will be thoughts of doubt that creep back in a times). I'm so happy that you are in this frame of mind now. Attitude (at least tom e) has a huge part in kicking butt. Once you start your treatments watch the other patients and their attitudes. How they handle themselves, how they make you and others feel. You can immediately spot the ones that don't have that mindset and how it effects them and others around them.

    You can deal, if you feel something going on, whatever it might be, hiccups, indigestion, sickness, headaches, numbness in your fingers or toes, whatever, communicate this to your nurses and doctors. There isn't much that they can't prescribe for you or advise you on to make you comfortable. When you feel good, you have the power and confidence to continue kicking butt.

    Very soon in the future, you will be one of the veterans here offering your advice, education and experiences....

    God Bless,
    John
  • delnative
    delnative Member Posts: 450 Member
    Kent Cass said:

    Consider it...
    a grin, Sweetblood= you are winning a major battle. Yes, a most worthwhile grin, girl. You are a dear Sister, Sweet, and so is one Mary...

    You're getting close to where you wanna be, Mary. Be wanting it to happen, and tired of the damned wait while the C has had a chance to get stronger. Want it to get done NOW, and let yourself realize just how much you really do want it to get done NOW. You got so much life ahead of you, Mary, and so very many good things to do, and have happen. And the only danged thing getting in your way is this thing the Drs. got planned for you. Your life, Mary, and your body- the Drs. are only (albeit major) players on the periphery. Center-stage is you and C. Reckon it's time they enter the picture, Mary. They are not the Ace up your sleeve. Take a deep breath, Mary, and Sweet, and all who know, and have been there:
    the Wildcard is the Lord, and within you, Mary. You're still waiting, so you don't know, yet. Trust me, Sister, you are about to experience a very pleasant surprise, though it may take awhile before...you realize that you have been blessed by the lasting touch of the Lord, and that anything positive is possible. Yes, it comes with a price, to varying degrees with different people/cases, but know beyond any doubt that the Lord is with you, and the price will be entirely acceptable to you, and those around you, Mary. You will not suffer, physically. Between the Lord and modern medicine, all physical suffering is at a minimum. The Lord never gives one more than they can physically handle. Want the start to happen, Mary. You are not scared- you are ready. And all of us are with you, as are all you love and hold dear. Go for it, Sister.

    Believe

    kcass

    There's a lot of wisdom here
    The previous two posts are sterling examples of what makes this community worthwhile.

    --Jim in Delaware
  • MaryRC
    MaryRC Member Posts: 114
    less then 3 days
    I went to Memorial hospital today to get my blood work done, they took 3 tubes. This evening at 5:30 a gal calls me, saying that 1 tube of my blood was lost! So I have to go in tomorrow and have more drawn! Like I didnt have enough to do tomorrow.
    Did anybody have to have a blood transfusion with the neck disection? I know this is standard proceedure to be typed in a major surgery. I hope I dont have to have one.
    Thanks to everybody that has posted on here for me, I am prepared for this. My ENT has even commented on it, I said it was because of all of my friends on this site that have helped me in messages and private messages.
    Mary of Northern California
  • Hondo
    Hondo Member Posts: 6,636 Member
    MaryRC said:

    less then 3 days
    I went to Memorial hospital today to get my blood work done, they took 3 tubes. This evening at 5:30 a gal calls me, saying that 1 tube of my blood was lost! So I have to go in tomorrow and have more drawn! Like I didnt have enough to do tomorrow.
    Did anybody have to have a blood transfusion with the neck disection? I know this is standard proceedure to be typed in a major surgery. I hope I dont have to have one.
    Thanks to everybody that has posted on here for me, I am prepared for this. My ENT has even commented on it, I said it was because of all of my friends on this site that have helped me in messages and private messages.
    Mary of Northern California

    3 days to go
    Take care Mary a lot of us will be praying for you
  • staceya
    staceya Member Posts: 720
    MaryRC said:

    less then 3 days
    I went to Memorial hospital today to get my blood work done, they took 3 tubes. This evening at 5:30 a gal calls me, saying that 1 tube of my blood was lost! So I have to go in tomorrow and have more drawn! Like I didnt have enough to do tomorrow.
    Did anybody have to have a blood transfusion with the neck disection? I know this is standard proceedure to be typed in a major surgery. I hope I dont have to have one.
    Thanks to everybody that has posted on here for me, I am prepared for this. My ENT has even commented on it, I said it was because of all of my friends on this site that have helped me in messages and private messages.
    Mary of Northern California

    Monday
    I will be praying for you and cheering for Mike.
    After your surgery, we can start counting down your treatment too!
    I am glad that you feel more prepared now.
    Stacey
  • nicki74
    nicki74 Member Posts: 55
    staceya said:

    Monday
    I will be praying for you and cheering for Mike.
    After your surgery, we can start counting down your treatment too!
    I am glad that you feel more prepared now.
    Stacey

    update-mary
    hi mary, i have been reading these posts and i will be thinking about you and praying for you on the 29th! this website is such a great place to find that positive support one needs... my father who is 56 was diagnosed with stage 4 tongue cancer on february 1, teeth pulled already, trach and feeding tube put in and already had one round of induction chemo.. he looks great! he goes in for his second round the day after Easter.. thereafter he will start the seven weeks/5days chemo/rads.. there is a trace of the disease in his left lymphnode, the tumor is under is tongue and they think it maybe in his jaw.. he is in great spirits! has anyone on here had any experience with the disease spreading to the jaw, or no of anyone who has? your positive feedback would be great!

    and again mary, you are in my prayers and best of luck to you!

    nicki
  • Scambuster
    Scambuster Member Posts: 973
    nicki74 said:

    update-mary
    hi mary, i have been reading these posts and i will be thinking about you and praying for you on the 29th! this website is such a great place to find that positive support one needs... my father who is 56 was diagnosed with stage 4 tongue cancer on february 1, teeth pulled already, trach and feeding tube put in and already had one round of induction chemo.. he looks great! he goes in for his second round the day after Easter.. thereafter he will start the seven weeks/5days chemo/rads.. there is a trace of the disease in his left lymphnode, the tumor is under is tongue and they think it maybe in his jaw.. he is in great spirits! has anyone on here had any experience with the disease spreading to the jaw, or no of anyone who has? your positive feedback would be great!

    and again mary, you are in my prayers and best of luck to you!

    nicki

    Jaw bone
    HI Nicki,

    A good friend of mine had it in his lower jaw bone. They cut the bad piece out and transplanted a piece of bone from his hip - I think about and inch and half long section. The new piece has no teeth of course but is covered by gum and looks fine.

    He had bad complications in the hip do to infections as result of sloppy work at the hospital. He had no need for Chemo / Rads and is running full speed now 10 years later - though more relaxed.

    Cheers
    Scambuster
  • nicki74
    nicki74 Member Posts: 55

    Jaw bone
    HI Nicki,

    A good friend of mine had it in his lower jaw bone. They cut the bad piece out and transplanted a piece of bone from his hip - I think about and inch and half long section. The new piece has no teeth of course but is covered by gum and looks fine.

    He had bad complications in the hip do to infections as result of sloppy work at the hospital. He had no need for Chemo / Rads and is running full speed now 10 years later - though more relaxed.

    Cheers
    Scambuster

    scambuster
    hi thank you for your response.. the first option the doctors gave him, was the removal of his tongue, voicebox and part of his jaw.. the second option was the induction chemo and then chemo/rads for 7weeks.. he opted for the second option, just because the numbers they gave us were about the same, the doctors themselves said they would go with option two.. with extensive surgery, the numbers were 60%cureable and 80%controllable.. and without the surgery, 50%cureable and 70-80% controllable... so, i am hoping that we all made the right decision with the treatment option we chose... thank you again for your response..