Question for the Lary’s. (Laryngectomees)

wmc
wmc Member Posts: 1,804
edited January 2014 in Head and Neck Cancer #1

Question for the Lary’s.

I am a neck breather and total Laryngectomy with neck reduction on both sides, level II~V 

and 86 glands removed. I have a TEP and use the HME to speak. I have marked biapical bullous emphysema Stage III 

but I get 98% on the oxygen, [My Doctor can’t explain this], however I can’t retain Oxygen and get short of breath very fast.

T3,N0,Mo  supragolottic squamous cell carcinoma. Surgery was Oct 2 2013.

 

I was told that we [Larys] can not blow out candles or whistle, and a lot of other things too. 

Yes I can not smell unless air is forced in my noise, and eating is a little different with swallowing 

and some loss of taste. Now I know how lucky I am that I did not need chemo or radiation. I was able to start 

talking in 15 days after my surgery. I have taught myself to blow out candles and I can whistle. I admit, not very

well, but I can whistle for my dog and do the two tone “wolf whistle”. I have worked at  this for two months and it not easy or like I did before the surgery but it is getting better all the time.

 

 I guess my question is, do you know of others that can also do this or is it that rare? My speech pathologist  

seemed shocked when I whistled.

Thanks:

wmc

Comments

  • Ladylacy
    Ladylacy Member Posts: 773 Member
    #2
    You are lucky

    My husband had his laryngectomy in March 2011 after radiation and chemo.  He can not whistle, blow out candles, etc.  What he can do is smell.  He will tell me he smells something that I have cooked or a candle that I might be burning.  If you check the www.webwhispers.org you will get more response to your questions as that is a site that deals mainly larys.  My husband cannot use a TEP to speak due to radiation damage plus undergoing another round of radiation and chemo for a tumor found at the cervical of his esophagus.   A lot of people can't use TEP for speaking due to many problems encountered either.

    Sharon

  • longtermsurvivor
    longtermsurvivor Member Posts: 1,842 Member
    #3
    You made me smile.

    I don't have a laryngectomy, but I can't whistle.  I used to be able to whistle loudly, but my several surgeries and rads have taken  that ability away from me.  So in this, you are well ahead of meSmile

  • debbiejeanne
    debbiejeanne Member Posts: 3,102 Member
    #4
    i can't whistle or bow out a

    i can't whistle or bow out a candle.  i can smell some things every once in a great while.  it's really cool that you can whistle and blow out candels.

    dj

  • wmc
    wmc Member Posts: 1,804
    #5
    Ladylacy said:

    You are lucky

    My husband had his laryngectomy in March 2011 after radiation and chemo.  He can not whistle, blow out candles, etc.  What he can do is smell.  He will tell me he smells something that I have cooked or a candle that I might be burning.  If you check the www.webwhispers.org you will get more response to your questions as that is a site that deals mainly larys.  My husband cannot use a TEP to speak due to radiation damage plus undergoing another round of radiation and chemo for a tumor found at the cervical of his esophagus.   A lot of people can't use TEP for speaking due to many problems encountered either.

    Sharon

    Thank you LadyLacy

    Thank you for your responce and the info on webwispers. They have been very helpful in my recovery with information. Truly sorry your husban had to have all the radition. I've heard how ruff it is, and hard on the body too. I had the option to not have it as they got the cancer in the tumor so I didn't have it, [yet might come later]. I will include him in my prayers.

    Thanks  Wmc

  • wmc
    wmc Member Posts: 1,804
    #6
    longtermsurvivor said:

    You made me smile.

    I don't have a laryngectomy, but I can't whistle.  I used to be able to whistle loudly, but my several surgeries and rads have taken  that ability away from me.  So in this, you are well ahead of meSmile

    Glad you smiled.

    Glad I got you to smile, and thank you for your responce as well. I am so new to having cancer that it doesn't seen real. I woke up from a check up to see in my lungs and was told " you have cancer" they could not get the scope past my vocal cords. 7/29/13. Then he was on vacation for the next week. New meaning to "Hell Week". But that is past and now to move on. Sorry for the rambling. Thanks again

    Bill 

  • wmc
    wmc Member Posts: 1,804
    #7
    debbiejeanne said:

    i can't whistle or bow out a

    i can't whistle or bow out a candle.  i can smell some things every once in a great while.  it's really cool that you can whistle and blow out candels.

    dj

    Thank you especially. Debbiejean

    Thank you especially for your email. It ment alot to me being new to the site and being welcomed, thank you. I am reminded daily I am a cancer survivor, and proud of it. I chose to fight and so glad I did and had great suport to help me. I will keep fighting, and do all I can to get back my life as close as normal, or as what it use to be as I can. I know it is up to me to recover and get my life back. With suport from friends and groups like this we all can.

    Thank you

    Bill

  • patricke
    patricke Member Posts: 570 Member
    #8
    LARY HERE

    Hey Bill, major congratulations on being able to whistle and blow out candles!  I can no longer whistle, or blow out candles, but I can blow a whistle with my stoma.  I could be wrong, but I believe that those abilities are fairly unusual for larys, certainly that question on Web Whispers would get a number of responses.  I am able to smell sometimes when there are strong smels in the air.

    I use an electro-larynx for speech, as the TEP just didn't work well for me.

    PATRICK

  • wmc
    wmc Member Posts: 1,804
    #9
    patricke said:

    LARY HERE

    Hey Bill, major congratulations on being able to whistle and blow out candles!  I can no longer whistle, or blow out candles, but I can blow a whistle with my stoma.  I could be wrong, but I believe that those abilities are fairly unusual for larys, certainly that question on Web Whispers would get a number of responses.  I am able to smell sometimes when there are strong smels in the air.

    I use an electro-larynx for speech, as the TEP just didn't work well for me.

    PATRICK

    Thanks Patrick

    Thanks for responding to me. I have put it up on WebWhispers but not to much responce yet.  I feel like I can smell sometimes if everything is just right. I went outside and I thought I smelled the neighbors fireplace but it was only me breathing it and that told my mind what it was just like when I could smell. I covered up my stoma and the "smell" was gone, so it was because I was breathing it in. Sorry the TEP didn't work for you but I still use my EL sometimes just in case I have to go back to it. I don't get as tired with the EL as I do with my TEP. Never knew how much I talked untill I had to write everything. Some of my co-workers asked what it was like, and I said just try not to talk for two hours and write everything down you want to say and you'll know what it is sorta like. LOL

    Have a great tomorrow!

    Bill

  • Ladylacy
    Ladylacy Member Posts: 773 Member
    #10
    Webwhispers

    I have found that if you send an email to webwhispers they will forward it to all those that have signed up to receive emails, that you get more responses than if you post it on their forum.  Seems like more people read the emails and respond than they do on the forum.  

    Sharon

  • lornal
    lornal Member Posts: 428
    #11
    Oh, I guess I'm one now

    But I don't know anything yet. It's only been two weeks. 

  • debbiejeanne
    debbiejeanne Member Posts: 3,102 Member
    #12
    lornal said:

    Oh, I guess I'm one now

    But I don't know anything yet. It's only been two weeks. 

    Lornal, I'm so glad your

    Lornal, I'm so glad your surgery is over.  I hope you are recovering well and coming to grips with the new you.  i had a lot of trouble accepting the new me and went thru quite a battle with depression.  if you ever want to talk, you can pm and i'll try my best to help.  the depression is much better now and i am accepting this new life.  i hope you are able to accept the new you without the depression.

    God bless you,

    dj

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