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  • glossectomygirl

I feel....

Like someone is slowly choking my neck 24/7. Tightness wraps my entire neck and it's numb to the touch. Rotating my head pulls on the taught skin. My smile is still a distorted ghoulish grin with the high potential of drool.


Breathing through a stoma surprisingly feels natural. Except for the occasional large lung luggie that plugs the hme - good times. An odd phenomena is that when i get a tickle at the back of my throat (mouth/esophagus) this makes me cough, but the cough is through the trachea/stoma so it does nothing. My body hasn't figured out they are no longer connected. A larry tube isn't really the most comfortable thing in the world. Putting it in feels like, well like you are shoving a plastic tube into your neck. Dr.Seth told me yesterday that i can start using the adhesive hme's (no tube). However, the infection at the edge of my stoma only just closed up and the area is still sensitive. I'm going to hold on that a little longer.


Thongues are a funny thing. (I dubbed my THigh flap that sits in place of my tONGUE a Thongue. It is just a mass of thigh skin that fills the space where a tongue would be.) I can't feel it at all. When i drink water i only sense the coolness everywhere else in my mouth - it is as if the water is levitating at the top of my mouth. I can't feel that i don't have a tongue. Rather it is as if my tongue is pinned down. Although for a split second yesterday i had the phantom sensation that i licked the inside of my teeth. My Thongue is molting - creating 'granular tissue' which has the lovely propensity to bleed - particularly during the middle of the night.


The silence is surprising. I can't laugh, i can't grunt or moan. Just silence. I'm getting accustom to sound of my synthesized voice, getting faster with keyboard in hand trying to keep pace with conversation.. Here's the thing. When someone hold the door open for me, i can't say thanks. I could fumble with my phone and type it and by then they would be gone. I could smile - but even if i wasn't masked it would be a crooked grin with a tad of drool, lovely. So i try to nod my head and smile with my eyes. 'What kind of dog is that?' The girls are always by my side, so they fill in the blanks. Random chatter with strangers isn't a necessity in life, for sure. I will adapt. I will figure it out. But for now, it is just silence.



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kellyclif
kellyclif
Mar 11, 2022

You are healing and drinking all of your meals! The swelling has gone down so much, look at that beautiful face! Sending you lots of love from Ohio💗

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draatf
Mar 11, 2022

Sonya, beautiful pic ladies! You all have smiling eyes even through your sunglasses. You planned and prepared for your voice to be heard with your recorded voice. That was brilliant. You are even surprising your health care providers.

LOVE

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lisa goldberg
lisa goldberg
Mar 11, 2022

So gorgeous, you rock star!

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Hada V. Haulsee
Hada V. Haulsee
Mar 07, 2022

Numbness around a surgical scar I understand well. It gets better, but it never goes away completely. The many other challenges you are facing are beyond comprehension. You are facing them with courage and with the best support possible. Love and good thoughts from all of the Haulsees.

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Siena Fuentevilla
Siena Fuentevilla
Mar 04, 2022

you have a great eye smile!

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