My Voice Saga

ToBeGolden
ToBeGolden Member Posts: 695
in Head and Neck Cancer #1
Visited my voice therapist yesterday, and she got my voice prosthesis working again. For those that do not know: I've had my voice box removed and had a tracheal-esophogeal puncture (TEP) at the time. A one-way valve is fitted so when I cover my stoma (hole in the neck) air is forced into the esophagus, which vibrates to give me a voice.

Well the prosthesis got plugged with mucus in February. I didn't want to have it fusses with, because I was in radiation therapy and just didn't want anyone poking around in my sore neck. So I started to learn esophageal speech. This is where I swallow air and then the esophagus vibrates as I force/let the air escape. Like a burp.

I've lived so long without a voice prosthesis, that I will continue to avoid using it as much as I can. Esophageal speech is definitely the way to go if I can master it. But the voice prosthesis is a good fall-back when I need to get something across verbally.

The voice prosthesis is (relatively) easy to use; esophageal speech is (almost) impossible. Only about 1% of laryngectomees use esophageal speech. The prosthesis has real seductive powers, why struggle when there is an easy way. Well, this all tells you about my personality. If I were not traveling the hard road, where would I be? However, now I have to use little brushes (inside my neck) to clean the thing. Rick.

Comments

  • longtermsurvivor
    longtermsurvivor Member Posts: 1,842 Member
    #2
    Rick
    you are one of the true heroes of this board. Fwiw, it looks to me, as I sit in the ENT oncology office, like people eventually get this stuff all sorted out. It is quite a journey, isnt it?

    best to you

    Pat
  • hwt
    hwt Member Posts: 2,328 Member
    #3
    longtermsurvivor said:

    Rick
    you are one of the true heroes of this board. Fwiw, it looks to me, as I sit in the ENT oncology office, like people eventually get this stuff all sorted out. It is quite a journey, isnt it?

    best to you

    Pat

    Rick
    If anyone can master the challenge, you can!
  • fisrpotpe
    fisrpotpe Member Posts: 1,349 Member
    #4
    do
    do what ever you have to, that is who you are. we are proud of you.

    john
  • CivilMatt
    CivilMatt Member Posts: 4,724 Member
    #5
    voice saga
    H Rick,

    I sound froggy and I startle people on the phone, but nothing to compare with your ordeal. Bless you for not giving up.

    Best,

    Matt
  • Tim6003
    Tim6003 Member Posts: 1,514 Member
    #6
    CivilMatt said:

    voice saga
    H Rick,

    I sound froggy and I startle people on the phone, but nothing to compare with your ordeal. Bless you for not giving up.

    Best,

    Matt

    On that note...
    We should get us all on a conference call one day and just say a quick hello (lol) so we can put a voice with a name .. :) I sound nothing like I did before treatments..and the phone is half if not 2/3 my livlihood.

    John (Skiffin) is the IT guy..he can set it up ...boo ha ha..

    Tim
  • Tim6003
    Tim6003 Member Posts: 1,514 Member
    #7
    CivilMatt said:

    voice saga
    H Rick,

    I sound froggy and I startle people on the phone, but nothing to compare with your ordeal. Bless you for not giving up.

    Best,

    Matt

    On that note...
    We should get us all on a conference call one day and just say a quick hello (lol) so we can put a voice with a name .. :) I sound nothing like I did before treatments..and the phone is half if not 2/3 my livlihood.

    John (Skiffin) is the IT guy..he can set it up ...boo ha ha..

    Tim
  • katenorwood
    katenorwood Member Posts: 1,912
    #8
    Love your attitude !
    Rick,
    I am so humbled at all of the journeys all of us have been on reading the H/N posts. You have a very strong...seriously strong will. And I am learning from you, and others to get out of my comfort zone and fight for the best normal we deserve ! Do whatever it takes to get back what was taken from you, and know we all are here to root you on. I too have Never taken the easy road...thru life...probably my age group...wanting to change up what I can for a better tomorrow. My thoughts are with you ! Katie
  • ToBeGolden
    ToBeGolden Member Posts: 695
    #9
    katenorwood said:

    Love your attitude !
    Rick,
    I am so humbled at all of the journeys all of us have been on reading the H/N posts. You have a very strong...seriously strong will. And I am learning from you, and others to get out of my comfort zone and fight for the best normal we deserve ! Do whatever it takes to get back what was taken from you, and know we all are here to root you on. I too have Never taken the easy road...thru life...probably my age group...wanting to change up what I can for a better tomorrow. My thoughts are with you ! Katie

    Strong Willed?
    Strong? Strong willed? Even the ICU staff at times called me strong. But many who know me say that I'm stubborn, pig-headed, and insensitive. I do seem to go through the world with blinders on. Which goes to say: there are two sides to any personality trait.

    On the other hand, my ENT surgeon was "shocked" at my first esophageal utterance in his presence. He asked, "How did you make that sound?" Because after 200 laryngectomies performed, I'm the second patient to use esophageal speech. (It's not that hard.) So my speech, as imperfect as it is, was unexpected.

    I also must relate this story: At the supermarket, I was asked, "paper or plastic?" I responded "plastic"; whereupon my purchase was placed in a paper bag. So my esophageal speech does need a little improvement. Rick.
  • bjw1955
    bjw1955 Member Posts: 67
    #10
    ToBeGolden said:

    Strong Willed?
    Strong? Strong willed? Even the ICU staff at times called me strong. But many who know me say that I'm stubborn, pig-headed, and insensitive. I do seem to go through the world with blinders on. Which goes to say: there are two sides to any personality trait.

    On the other hand, my ENT surgeon was "shocked" at my first esophageal utterance in his presence. He asked, "How did you make that sound?" Because after 200 laryngectomies performed, I'm the second patient to use esophageal speech. (It's not that hard.) So my speech, as imperfect as it is, was unexpected.

    I also must relate this story: At the supermarket, I was asked, "paper or plastic?" I responded "plastic"; whereupon my purchase was placed in a paper bag. So my esophageal speech does need a little improvement. Rick.

    wish you the best
    I haven't been on for awhile, you sound hard headed like me, are you sure your not a scorpio. Never give up hope thats all we got and I haven't stopped praying for you. god bless bjw1955
  • Pam M
    Pam M Member Posts: 2,196
    #11
    Good
    Good to hear you got the prosthesis going again.

    Does a cold affect your ability to practice esophageal speech? Makes sense to me - I'm just curious.

    I agree with you - if you can use esophageal speech, you know you have something you can do to keep from having to totally rely on your prosthesis. And the cleaning would be very intimidating for quite some time for me, I'd think.
  • ToBeGolden
    ToBeGolden Member Posts: 695
    #12
    Pam M said:

    Good
    Good to hear you got the prosthesis going again.

    Does a cold affect your ability to practice esophageal speech? Makes sense to me - I'm just curious.

    I agree with you - if you can use esophageal speech, you know you have something you can do to keep from having to totally rely on your prosthesis. And the cleaning would be very intimidating for quite some time for me, I'd think.

    A Word About My New Voice
    Today neither my voice prosthesis nor esophageal speech worked very well. I cleaned the prosthesis twice. Other days, they both work satisfactory.

    The bad news is: I need to be relatively calm to speak by either method. If I get excited (upset), the voice goes down the drain.

    So it's a catch-22 (love that book). When I have something important to say, I have no voice. When what I have to say doesn't mean much to me, I can speak just fine.

    I do have a couple of computers around the house. So I can use Word Pad / Microsoft Word / or Open Office to type a note to my wife. So nothing critical will get unsaid or misunderstood. However, I will try to use speech; even if I have to repeat myself several times.

    I can also text my wife via our cell phones. This is critical when she sends me into a store and I need to text: "What U Want?" She can call, and verbally tell me again. If I'm in the aisle hosting the desired item, it just might be possible for me to remember long enough so I don't have to resend: "What U Want?"

    If you're wondering, my memory is just fine. I can remember the starting time and channel for all sporting events, and other important stuff.

    Don't want to get into relationships: But I think it's totally unfair for the female partner to test the male partner by sending him into a store to buy stuff. Especially something like hairspray. I mean I don't have to just remember hairspray; I have to remember the brand.

    Now you see the trouble I cause when my fingers do the talking. Rick.

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