struggling with the way i look

po
po Member Posts: 18
in Head and Neck Cancer #1
hi guys im new to this was diagnosed with mucoidepidermiod carcinoma just 10 weeks ago just out of hospital nearly 3 weeks and now home. i had to have my eye cut under it and down my face near my nose and lip split. but now left with scars. they had to split my jaw to get at the tumour but physically im doing good according to the doctors. my wounds are doing good too. but i am really needing to hear from people that have been through the same as me as im struggling emotionally. my mucus drops down my nose all the time im numb and that will be forever. i cant open my jaw to eat properly and my speech is affected. i have bad days which are few thank goodness but was just needing some support. im going to join a support group going there on tuesday. i live in scotland and love it. thanks for reading this.

Comments

  • KTeacher
    KTeacher Member Posts: 1,103 Member
    #2
    3 Weeks
    3 weeks is a short time. I had an inch of my upper lip removed in Aug. 2010. 50 stitches between nose and upper lip. By the time I was finished with radiation mid October 2010 I was amazed how well I had healed. I had a skin cancer removed from my left cheek the year before that, hardly noticable. Nose running, I let people know that I couldn't feel it, please let me know if I need a kleenex (I always have them handy).
    Welcome to the group. You will get tons of useful information, be able to vent and ask questions--also get answers about how the rest of us deal with the side effects.
    Make sure that you stay out of the sun or invest in a good wide brimmed hat, I have quite a wardrobe of hats and sccarves now.
    Will you be having radiation? My skin was very tender to the cold outside, I looked like a bank robber sometimes but I am comfortable!
  • po
    po Member Posts: 18
    #3
    KTeacher said:

    3 Weeks
    3 weeks is a short time. I had an inch of my upper lip removed in Aug. 2010. 50 stitches between nose and upper lip. By the time I was finished with radiation mid October 2010 I was amazed how well I had healed. I had a skin cancer removed from my left cheek the year before that, hardly noticable. Nose running, I let people know that I couldn't feel it, please let me know if I need a kleenex (I always have them handy).
    Welcome to the group. You will get tons of useful information, be able to vent and ask questions--also get answers about how the rest of us deal with the side effects.
    Make sure that you stay out of the sun or invest in a good wide brimmed hat, I have quite a wardrobe of hats and sccarves now.
    Will you be having radiation? My skin was very tender to the cold outside, I looked like a bank robber sometimes but I am comfortable!

    nose running
    i have to tell people too if my nose runs coz i cant feel it also half my mouth is numb. and i too have to cover up in the cold i have horses and really feel the colod now though i keep forgetting to cover up. i was given the news of no chemo or radio 1 week ago coz all the margins were clear. does the nose get better?
  • Skiffin16
    Skiffin16 Member Posts: 8,305 Member
    #4
    Welcome PO
    I wanted to welcome you to the forum...great people here and tons of experience most are willing to share and help others with.

    Congrats on the all clear, other conditions I'm sure will continue to heal with time and additional care.

    Thoughts and Prayers,
    John
  • po
    po Member Posts: 18
    #5
    Skiffin16 said:

    Welcome PO
    I wanted to welcome you to the forum...great people here and tons of experience most are willing to share and help others with.

    Congrats on the all clear, other conditions I'm sure will continue to heal with time and additional care.

    Thoughts and Prayers,
    John

    thank you

    thank you
  • Hondo
    Hondo Member Posts: 6,636 Member
    #6
    Hi po

    You found the right place and hope you plan on staying. A lot of us here and all have some different type of cancer or the treatment for it. We find help and support through each other and to me that is the best type.

    Wishing you well
    Hondo
  • osmotar
    osmotar Member Posts: 1,006
    #7
    Welcome
    PO...welcome you will find this group very helpful.

    Linda
    in Arizona
  • KTeacher
    KTeacher Member Posts: 1,103 Member
    #8
    po said:

    nose running
    i have to tell people too if my nose runs coz i cant feel it also half my mouth is numb. and i too have to cover up in the cold i have horses and really feel the colod now though i keep forgetting to cover up. i was given the news of no chemo or radio 1 week ago coz all the margins were clear. does the nose get better?

    Yes
    Yes, it gets better but then when I am 'spring cleaning' it starts to run again. Last summer one of my grandsons, 2 at the time did not want to look at me but he did want to sit on my lap, he would walk backwards for 10 feet and then get up on my lap. His twin brother just wanted to announce to everyone, Grandma owie! I just had a neck dissection on July 22 and tomorrow I will complete radiation for the second time. When your skin is healed, we have a mineral makeup here in the states, works really well. I never did get back to wearing makeup when I went back to work last year (January, I am a Kindergarten teacher). This time I am only worried about a child making a comment about their father's scar looking like mine (I teach in a tough neighborhood).
  • KTeacher
    KTeacher Member Posts: 1,103 Member
    #9
    Look Good
    Look Good. . .Feel Better is a program with the American Cancer Society. They have a website--www.lookgoodfeelbetter.org
    There is an international program--www.lookgoodfeelbetter.co.uk
    Phone number: 01 372 747 500

    Hopefully this is a place for you to start. My mother always said, "Pretty is as pretty does," It's not your face but what comes from your heart. Let your light shine from within. Wear your scar proudly, this is the fight for your life.

    (In the U.S. people receive free products from this program, I don't know if you can get any products in Scotland)
  • po
    po Member Posts: 18
    #10
    KTeacher said:

    Look Good
    Look Good. . .Feel Better is a program with the American Cancer Society. They have a website--www.lookgoodfeelbetter.org
    There is an international program--www.lookgoodfeelbetter.co.uk
    Phone number: 01 372 747 500

    Hopefully this is a place for you to start. My mother always said, "Pretty is as pretty does," It's not your face but what comes from your heart. Let your light shine from within. Wear your scar proudly, this is the fight for your life.

    (In the U.S. people receive free products from this program, I don't know if you can get any products in Scotland)

    Look Good Feel Good
    I have now joined this group and start monday they are run by the Mcmillan nurses over here and offer other courses aswell they also have drop in sessions which help especially if your having a bad day thenks for your post glad there is something similar over there too.
  • mixleader
    mixleader Member Posts: 267 Member
    #11
    Appearance
    Hi, Po. I also have some trouble in public relating to my face and I feel self-conscious. The right side of my face is paralyzed and my right eyelid droops. My mouth doesn't open very far and my lips are pretty much paralyzed, so I have some trouble talking. I wear a large band aid on my righ jawline to cover a sore that won't heal due to cancer cells still being present. My right ear sticks considerably forward from the left since surgery altered it's support base. So, basically, I am butt-ugly but I still go out in public. Hey, this is me. Take it or leave it.

    Roger
  • Greend
    Greend Member Posts: 678
    #12
    mixleader said:

    Appearance
    Hi, Po. I also have some trouble in public relating to my face and I feel self-conscious. The right side of my face is paralyzed and my right eyelid droops. My mouth doesn't open very far and my lips are pretty much paralyzed, so I have some trouble talking. I wear a large band aid on my righ jawline to cover a sore that won't heal due to cancer cells still being present. My right ear sticks considerably forward from the left since surgery altered it's support base. So, basically, I am butt-ugly but I still go out in public. Hey, this is me. Take it or leave it.

    Roger

    Excuse
    Roger,

    At least you and Po have an excuse..me; I'm just butt ugly cause God made me that way.

    Hang in there.

    Denny
  • Hondo
    Hondo Member Posts: 6,636 Member
    #13
    Greend said:

    Excuse
    Roger,

    At least you and Po have an excuse..me; I'm just butt ugly cause God made me that way.

    Hang in there.

    Denny

    Denny

    You must have a pretty Butt because I see one Lady there who loves it.

    My wife was telling me last night that one of my ears look lower then the other. I told her that is because one of them I use for Low sounds and the other for Hi sounds. All we could do was to laugh at each other, the effects of treatment has scared us all in some way or the other. Now after 8 years I try not to let it bother me anymore but it does still hurt some when you walk into somewhere and people all start looking at you. And when you need to ask if they have a smaller fork or spoon because the regular size will not fit in you mouth.

    Life is still so very good
    :+))
    Hondo
  • po
    po Member Posts: 18
    #14
    Hondo said:

    Denny

    You must have a pretty Butt because I see one Lady there who loves it.

    My wife was telling me last night that one of my ears look lower then the other. I told her that is because one of them I use for Low sounds and the other for Hi sounds. All we could do was to laugh at each other, the effects of treatment has scared us all in some way or the other. Now after 8 years I try not to let it bother me anymore but it does still hurt some when you walk into somewhere and people all start looking at you. And when you need to ask if they have a smaller fork or spoon because the regular size will not fit in you mouth.

    Life is still so very good
    :+))
    Hondo

    hondo
    i have the same problem normal forks have a difficulty getting in my mouth now but i used to have a big mouth but now i have a very dainty one. the only difference is i have my hand in my mouth at all times hahaha
  • Hondo
    Hondo Member Posts: 6,636 Member
    #15
    po said:

    hondo
    i have the same problem normal forks have a difficulty getting in my mouth now but i used to have a big mouth but now i have a very dainty one. the only difference is i have my hand in my mouth at all times hahaha

    Hi po

    Life is still so good even with all the problems and side affects that go with it. It is hard for people to realize or understand what we go through everyday just to eat. At home I get my food and start before anyone else and then they come one by one and are all gone and finish and I am still there trying to finish my first plate. And believe me I use my hands a lot picking up what keeps falling off the fork or out of my mouth because I miss and hit the side wall. Ha ha ha

    If we can’t laugh about it we would cry so I prefer to laugh

    Thanks :+))
    Hondo
  • Greend
    Greend Member Posts: 678
    #16
    Hondo said:

    Denny

    You must have a pretty Butt because I see one Lady there who loves it.

    My wife was telling me last night that one of my ears look lower then the other. I told her that is because one of them I use for Low sounds and the other for Hi sounds. All we could do was to laugh at each other, the effects of treatment has scared us all in some way or the other. Now after 8 years I try not to let it bother me anymore but it does still hurt some when you walk into somewhere and people all start looking at you. And when you need to ask if they have a smaller fork or spoon because the regular size will not fit in you mouth.

    Life is still so very good
    :+))
    Hondo

    Forks
    Peg took care of the fork problem as well. :>)

    Denny
  • Hondo
    Hondo Member Posts: 6,636 Member
    #17
    Greend said:

    Forks
    Peg took care of the fork problem as well. :>)

    Denny

    Denny

    I see my ENT today and will ask her about the PET to see what she thinks. I am now down to 153lbs

    PEG a little for me in Mexico :+))
    Hondo
  • keep_the_faith
    keep_the_faith Member Posts: 49
    #18
    PO
    You need to stack tongue depressors (popsicle sticks)and put them between your teeth to open the jaw. Start very slowly, just a few sticks. Add another stick in between the others and keep it there for 30 seconds, then take out. Repeat three times, 2x a day. The more you use the muscles in your throat by swallowing liquids, the better your voice will get.

    Keep_the_faith

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