Speaking as a laryngectomee

Life as a laryngectomee:

This is a comment I left on a Facebook group for laryngectomy patients.

Some are going to get into a severe defeatist mode after a laryngectomy. They will find fault in most aspects of this new way of life. And they will spread this defeatist spirit to all around them. I say that it must really SUCK to be them. And to be those around them as family, care-givers, supporters,etc. I'm in my fifth bout with head & neck cancer. Looking at my 3rd surgery in 6 months--this time a complete neck dissection/reconstruction followed by re-irradiation & immunotherapy. Had a neck dissection with the lary, then again with a pectoral flap fistula repair. I fricking hate dealing with this crap, but I'm going to beat it. I won't be able to use my prosthesis for a while and will have to use my EL again. If someone has problems understanding me with an EL? Well, F*CK THEM!!! Most don't want to deal with a person with any form of handicap, so they won't take a few extra seconds to process our 'speech' with the EL. I saw the same thing my last two stays on the head and neck cancer floor with my nurses. Couldn't "understand" me because they just didn't want to do so! My SLP would bring her students and interns by to see me because I could vocalize so well with the EL. And I know most can understand the EL if they let their brains adjust to the sound of the EL. If they refuse to try to understand us, then use the magic phrase "F*ck 'em!" Hell, after my laryngectomy So all you larys that haven't taken the time to fricking master trying to talk with an EL or TEP--stop your moaning and at least attempt it. It is going to take a while, months even before you make it work right. But if you cannot make a grand effort at it, why didn't you just let the cancer kill you? Jesus, you're alive and still going after having some awful crap happen to you. I felt sorry for myself too--until I started noticing the other people in the head and neck cancer clinic missing part of their jaws, part of their faces, totally disfigured--and realized how fricking lucky I was to just have a hole in my neck that I could breathe through. I think some of you just need a swift kick in the buttocks to get you off the pity train. btw, I love the posts I read of the folks who post their positive stories of making the best of their condition, of learning how to speak again whether with the prosthesis, via EL, or esophageal speech. And every time someone posts these type of stories, you will always have comments by a particular subset of larys. It totally irks me to see someone post their defeatist speil of "but I can't do it", "it didn't work for me", "I gave up and quit trying", "blah, blah, blah', "whiny, whiny bullsh*t"--because these folks will always have someone like them chime in with their own story of defeat! You are just looking for someone to support the fact that you are a quitter. Make your SLP and your family proud--try, try, and try again!!! You CAN DO IT!!! It doesn't happen overnight! I only used a notepad for a while because the EL sounded so robotic. But I got tired of people thinking I was deaf too. lol I practiced whenever no one was around, so the self-consciousness I usually felt was not an issue. Then I had a situation where I was trying to talk to someone(from Japan) and they were in tears because they could not understand my EL speech. So I had no choice but use my vocal prosthesis. Just seeing the smile on that young lady's face and hearing her say "I can understand you now!", made the effort I made to speak completely worthwhile. btw, I host & teach on my organic farm. I have people come from many different countries to learn about sustainability, permaculture, and organic methods. Since my laryngectomy, I was so happy to know that I could use an EL to speak, I figured out how to use that rascal immediately. I would have to shake the spit out ot the EL straw every few sentences, but I could talk up a storm!!! I've hosted folks from dozens of countries. Most international folks had no problem understanding my EL speech. And none have difficulties understanding my TEP speech. So those who think folks don't understand you, it's all in your head. They will understand you if they try! And to the SLP that had the original post, don't let them give up. Tech them the magic words, "F*ck them if they don't want to understand." Sorry to go on a tirade, but like a good preacher once said, "you gotta step on some toes sometimes if you're going to save these souls". 😏😉🎤⬇️

the initial tube was a 10/55 which would tickle my trachea too. finally settled on a 10/27 which was prefect. tried a button, but stoma is shaped correctly to hold it in without strap. with strap, it hit the prosthesis wrong when talking so 10/27

because i had radiation before lary, i was lucky to develop a fantastic fistula above my stoma that grew and grew. my neck dissection for the laryngectomy failed to heal internally. it was like a zipper busting and unzipping inside my throat. in 6 wks it was almost twice as big as my stoma. so i got the pectoral flap repair. so i lost my left pectoral muscle, a nice big ass scar, and much of the use of my left arm. due to the pec going under the skin and over the collar bone, then above the stoma, the pec would cause occlusion of stoma without the larytube. and why i fought to try every possible size to find one that didn't irritate me