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I CAN TALK!!!

debbiejeanne's picture
debbiejeanne
Posts: 2266
Joined: Jan 2010

on 2/28/12 i had a complete laryngectomy for cancer of the larynx, stage 3 (i had 35 rad trmnts in sept./oct., 09, this was a recurrence).  since the surgery, i've tried several devices to make me talk.  one was a sticky thing that stuck to my neck around the stoma.  trouble was they never lasted more than 10 minutes b/c i would cough up phylem and it got between my skin and the sticky.  that broke the seal and i couldn't talk b/c the air leaked.  i also tried a plastic sticky w/the same issue.  again, couldn't talk.  then i bought this thing called a lary button.  the speech therapist said f i didn't cough when we put it in, then it wasn't in.  well, i coughed every time we tried it.  i coughed it right out!  that piece didn't even let me talk for 1 minute, much less any longer!  well, i withdrew from my family, friends and life in general.  we had a family gathering in may.  everyone was laughing and talking and just having a good time and there i was unable to participate.  it depressed me so i went n the house and went 2 bed.  i pretty much spent everyday in my room, alone.  i felt completely disconnected from the world and totally alone.  well, i had an appt w/the ent on 7/18/13 and the speech therapist stopped n 2 c how i was do'n.  i told her not good b/c i still couldn't talk.  well, i couldn't believe what happened!  she said, "i can put holes in ur lary tube and u'll b able 2 talk, do u want me 2 do that?"  HELL YES!!  y didn't she do this 2 start with 1.5 yrs ago???  y did i have 2 go 1.5 years not talking?  y did i have 2 spend all that money on crap that didn't work?  y did i have to suffer such a deep depression and withdraw?  i have been talking non stop since she put the holes in.  i still cough up mucus but i simply clean the lary tube w/a tissue and i'm right back 2 talking!  it took her less than a minute to put the holes (3) in the tube!  i thot my sister was going 2 cry when i called and told her.  after our phone call ended, she waited 15 minutes then called me back to hear me say hello.  Laughing  this was my first phone call.  it sure feels good 2 b able to answer the phone.  oh, yea, we went out to eat from the doctor's office and for the 1st time n 1.5 years, i ordered my own food!!  i go out 2 eat now whenever i want.  i also go to thestore and anything else normal people do.  i can talk for myself now and its a great feeling.  no more wanting people to b able to read my lips and we would both get discouraged.

i know there is only one other person here w/a complete laryngectomy but we may have more in the future.  this is to let them know there is an easy way for them to talk and they don't have to go thru what i did.  sharon, i think ur husband talks already but f not, maybe this can help him.  john, now f u call me, i can answer  Cool !

God bless,

dj

TracyLynn72's picture
TracyLynn72
Posts: 645
Joined: May 2013

I am so happy for you!  I can't imagine going that long and not being able to talk and join in conversations.  I had about a week where I couldn't talk and it drove me nuts!!  I am so, so glad you are able to communicate better now.  Why in the world didn't they punch those holes in there way back when??  

debbiejeanne's picture
debbiejeanne
Posts: 2266
Joined: Jan 2010

thank u so much, tracy!  it is nice to b a part of the world again.  Laughing

dj

peggylulu's picture
peggylulu
Posts: 367
Joined: Dec 2012

That is so WONDERFUL !!!! I am so happy for you ! That must be the best thing that could happen for you next to being NED ! I couldn't talk for about 5 weeks so I know how awful it is .

Peggy

CivilMatt's picture
CivilMatt
Posts: 2841
Joined: May 2012

dj,

Well you have some catching up to do.  It is nice someone finally helped the situation.

Rick (ToBeGolden) is in similar circumstances, he taught himself to Esophageal speak (I believe). Either way, you are doing good to hang in there.  Who knows what (good) surprises are still out there for you?

Matt

Grandmax4's picture
Grandmax4
Posts: 578
Joined: Dec 2011

what awesome, wonderful news~~I teared up at the pain and sorrow in your story~~chatter, sing,yell and shout~`i'm just beside myself with happiness for you !!

phrannie51's picture
phrannie51
Posts: 3621
Joined: Mar 2012

I'll bet you've stored up a whole of things that need sayin', too Smile.

My mom had a laryngectomy....and she was a talker all her life.  I saw her go thru the depression when she spent the first few months of not being able to talk to her friends.....and then the frustration when she couldn't be understood.  I'm just so SO happy for you!!

p

donfoo's picture
donfoo
Posts: 1159
Joined: Dec 2012

What a story! So glad you are able to talk now but one does wonder what the inmates at the asylum were doing for the past 18 months? Did nobody even think to try an apparently really simple procedure to restore your voice? Oh well, better late than never. don

cadharose's picture
cadharose
Posts: 51
Joined: May 2013

That is wonderful news. I know how great it feels when something goes right after such a grueling ordeal. I am very happy for you.

Ladylacy
Posts: 463
Joined: Apr 2012

I am so happy for you.  You must have a TEP.  That is something my husband couldn't have because of all the radiation he had.  In fact when he decided to try one, that's when the doctor found the cancer at the cervical of his esophagus.  But he does use the electrolarynx and can speak with that.  Do you have a TEP?  I have seen the lary tube with the holes and if that would help him speak better I will order him one.

Sharon

debbiejeanne's picture
debbiejeanne
Posts: 2266
Joined: Jan 2010

sharon, yes, i have a tep.  i don't know f the lary tube w/work w/o it.  ck w/your doc.  good luck.

dj

fishmanpa's picture
fishmanpa
Posts: 1104
Joined: Jan 2013

DJ,

For whatever reason, I had no idea you were unable to speak! We all have our cross to bear with this disease but dang! Hard to believe something so simple solved a year and a half issue. It does make you wonder why they didn't do it sooner. I'm happy for you!

BTW... Be careful with those one letter spelling choices... you just told John "f u call me" ~lol~

"T"

debbiejeanne's picture
debbiejeanne
Posts: 2266
Joined: Jan 2010

t, u r so funny.  i actually laughed out loud.  good point tho....lol.

dj

Duggie88's picture
Duggie88
Posts: 524
Joined: Feb 2010

Debbiejeanne

What can I say that you haven't aready said(LOL). That is fabulous news. I only had to go a few months without talking and had paper and pen and even one of those erase boards with me. I also had no idea of your situation but am certainly very happy for you. Your poor husband, a year and a half of catch up. You can yell at him for something he did a year ago. (Just kidding)

Yes like "T" said you did do a "f u" to John and now I await his response.

Enjoy the day

      Jeff

debbiejeanne's picture
debbiejeanne
Posts: 2266
Joined: Jan 2010

jeff, y were u not able 2 talk?  did u have a laryngectomy?  anyway, i'm glad u can talk now!  talk on.

dj

Skiffin16's picture
Skiffin16
Posts: 8057
Joined: Sep 2009

All that I can say is AWESOME......

LOL, well one other thing does come to mind...., your poor hubby...

He's going to get an ear fulll, two years of catching up..., LOL..

Extremely happy for you girl...

BTW, we can make it the CSN "secret" code for telling some one to F Off...., just say "Well... 5FU", LOL...

John

fishmanpa's picture
fishmanpa
Posts: 1104
Joined: Jan 2013

That's funny John/Jeff ~lol~.... the thought crossed my mind as Marcia is sitting here talking away about her dreams from last night that make no sense whatsoever, that being a woman and unable to speak would be sheer torture ~lol~

"T"

TracyLynn72's picture
TracyLynn72
Posts: 645
Joined: May 2013

The short time I couldn't speak WAS torture!! LOL  

debbiejeanne's picture
debbiejeanne
Posts: 2266
Joined: Jan 2010

john what a great idea...lol.

dj

debbiejeanne's picture
debbiejeanne
Posts: 2266
Joined: Jan 2010

thank u everyone!  it is great 2 b back amoung the living.  i have been making up for lost time Laughing.  hubby told me 1 day i talk to much, take a break.  i told him he had a break for 1.5 yrs and that break is now over.  all jokes aside, its nice 2 have a conversation w/him, especially in the car.  car rides were always lonely and very quiet.

john, i like ur idea.  that way it doesn't even make us appear rude...lol.  we all knew u'd come up w/something clever. 

thanks again all and KEEP ON TALKING!

dj

Ingrid K's picture
Ingrid K
Posts: 811
Joined: Mar 2011

DEBBIEJEAN

OH MY,  like T-Man. I had no idea that you could not speak.  All this time on these boards, I must have missed that, but no worries, you've got it covered now.

This is seriously the best news I have heard in ages.

I am sooooo very happy for you.

and I for one think you are entitled to a few "F U's" after all these years of silence.

You just keep on talking !

 

 

debbiejeanne's picture
debbiejeanne
Posts: 2266
Joined: Jan 2010

thank u ingrid.  ur post gave me a big chuckle!

dj

lorig01
Posts: 66
Joined: Jul 2012

Wow. I read your entry at work this morning and screamed out loud! FANTASTIC!!!!! MIRACLE!!!! I have a big smile on my face.   That is the best news I have heard in a long while...  Congratulations!!!!

debbiejeanne's picture
debbiejeanne
Posts: 2266
Joined: Jan 2010

thank u lori, i'm glad i could make u smile.  have a wonderful day.

dj

osmotar's picture
osmotar
Posts: 951
Joined: Jul 2011

Wonderful news.....

 

Linda

hwt's picture
hwt
Posts: 1836
Joined: Jun 2012

Truly a blessing! I am so happy for you and your family. Celebrate!

Skiffin16's picture
Skiffin16
Posts: 8057
Joined: Sep 2009

LOL, I can just envision..., the "Official" CSN H&N 5FU Salute....

When ever we meet another CSN in person, we can give them a little head tilt, with a hand salute similar to a two finger tap to the forhead (middle and index of course), then sort of a wave upward...

With a salutation simultaneous of 5FU ..., LOL

JG

CherieLW's picture
CherieLW
Posts: 395
Joined: May 2013

Debbie, that's wonderful news!  So glad that things continue to look up!  Praying that they continue to go uphill! :)

Cherie

wolfen's picture
wolfen
Posts: 1173
Joined: Apr 2009

I heard you loud and clear! So happy for this bit of news. In our family, Ron was the talker and I was the silent one, even though you'd never figure that one out from the blabbing I do on here.

Luv,

Wolfen

debbiejeanne's picture
debbiejeanne
Posts: 2266
Joined: Jan 2010

wolfen, thanks 4 replying.  its always good 2 c u posting.  how is the puppy?  has ur son moved n?  i hope all is well w/u.

dj

Ruben and Jude's picture
Ruben and Jude
Posts: 152
Joined: Apr 2013

WOW, what a story. I hope your speach therapist learned something new!!!  What a shame it took someone so long to figure out what you needed.  Good for you.

My husband is a talker, but after going through a tonsilectomy and 35 radiation treatments his talking was down to a few whispered words. I longed to have a normal conversation with him. He was such a talker in the past, that I used to think.....geez, I wish he'd shut the F(ront door)! Now that he's talking again, all I can say is.... keep talking honey.

Good for you.... keep talking honey!

Jude

debbiejeanne's picture
debbiejeanne
Posts: 2266
Joined: Jan 2010

thanks jude and i'm glad ur husband is talking again.  we don't realize how important that ability is until we lose it.  cancer makes us appreciate a lot of basic things, just like tasting and eating.  who would have thot?  well, u just keep listening while ur honey just keeps talking   :0)

dj

wolfen's picture
wolfen
Posts: 1173
Joined: Apr 2009

The puppy is "all puppy". When my son comes over, she is so excited to see me that she almost knocks me over and smothers me with slobbery kisses. It will be a while before she understands "Down".  LOL  In fact, I put a picture of the three of us on my expressions page, if you care to look

No move yet. He's still looking for a job & needs to clean his place up a bit before anyone can list it.

Luv,

Wolfen

debbiejeanne's picture
debbiejeanne
Posts: 2266
Joined: Jan 2010

where do i find ur expressions page?  i'd love 2 c the pic.

dj

Skiffin16's picture
Skiffin16
Posts: 8057
Joined: Sep 2009

Click her name in the avatar, her profile will pop up, Expressions are to the right a few tabs...

Click Expressions and it will open up threads she has posted there, photos, etc...

JG

debbiejeanne's picture
debbiejeanne
Posts: 2266
Joined: Jan 2010

thanks, john!

dj

Hondo's picture
Hondo
Posts: 5643
Joined: Apr 2009

 

 

I am so glad to see you finally have your new voice and you are talking up a storm with it. The little things we take for granted in life sometimes but when we don’t have them anymore we realize the lost of them. It is hard for me to talk to someone on the phone sometimes because of my tongue going numb and I can’t pronounce the words, maybe I will look into your little device. I thank God everyday now just for being able to wake up in the morning and get out of bead by myself, because there are many who can no longer do something so simple.

 

Take care little sister and may you continue to speak up.

 

 

God Bless

Tim Hondo

 

 

Crazymom's picture
Crazymom
Posts: 289
Joined: Nov 2011

I am glad you perservered and have found an answer... Yea!

 

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