Cholesteatoma - the name of my tumor

One month ago
"I'm not 100% sure but I think you might have some extra skin growing in your ear, I'll have you go and check it out, this could be the cause of your bad hearing"

And unfortunately he was almost right.

Four years ago I lost almost all my hearing in my left ear after an operation. There was a chance on 0.01% that this could happen but I didn't know it then because the doctor never told me and of course I managed to be that 0.01% (I always manage the impossible)

One year went by and the doctor decided to do another operation to "fix" it. But with my eternal luck he couldn't fix it. 
The worst part of it all was that my doctor kept saying " nothing seems to be wrong"

The hardest thing with operations like these are the following days.
Uncontrollable bleeding from the ear
No washing your hair
Not being able to sleep on the operation side
loss of apatite
Having a bandage over your head for a week that is held in place by your own dried blood
Positive things
They give me a sidecut

I could make this list very long.

And I have been trough this two times. And I'm up for my third round. Worst part? This time it's not to fix some minor hole in my ear. It's not to fix my hearing. It's to remove my newly found noncancerous tumor - Cholesteatoma. 

I myself found out about this today and had never hear of Cholesteatoma before so I did my research.

"A cholesteatoma is a type of cyst found in the middle ear behind the eardrum. Cholesteatoma is a noncancerous tumor that forms when the skin of a punctured eardrum grows through the hole in the middle ear. If there is an ear infection, the skin will continue to grow into a cholesteatoma.
While the tumors are benign, the growths can cause damage to the ears by destroying bones in the ear and causing hearing problems. The tumors may also cause nerve damage, hearing loss, deafness, dizziness, and balance problems.
Cholesteatoma is a serious medical problem, and early treatment is crucial for the best outcome. Serious complications may occur if the tumor goes untreated, including destruction of both the middle ear structures causing Hearing Loss and inner ear structures causing Vertigo (feeling of spinning or whirling). Spreading of infection to the brain can lead to meningitis and brain abscess.
Cholesteatoma responds well to treatments. Patients are likely to recover fully without complications if the tumor is caught and treated early."
I am so utterly tired of all this. 
Why does it always have to be me? 
I was born with a syndrome that one in a million (literary) get and almost every operation I've ever done have gone wrong. 
I'm not even supposed to be alive, I couldn't eat when I was born on my own and had heart problems, thanks to doctors I'm alive.
But being alive is an everyday battle for me.
I almost broke down when the doctor (it's a new doctor btw) told me that I had Cholesteatoma and that he was really sorry, and that removing the tumor wouldn't give me my hearing back. 
But my own willpower kept me from crying. I would not break down. Not like this. Not now.
I wanted to tell the doctor no. I don't wan't to do the operation. I'm clearly not meant to be alive. Everything that has ever happened to me are my facts. And I don't want to live either. Because I'm so tired of all this. All my life I've always wanted to be like the other kids. I've been bullied because of my syndrome for ages, and even for  my lack of hearing. I'm just so tired of fighting back. I saw not going trough with this operation as my ticket out of this misery 

But I have to. As long as I live, As long as I breath I have to fight BACK. I am not weak. The opposite actually. I've been trough so much and I always get back to my feet, I always stand tall. 
This is my fight. 
And I have to fight it alone.

Operation in 15 days, 1th October.

 ~stay smart, stay strong
xoxo Lihini


  1. Jag beundrar dig så jävla mycket Lihini. Du ska veta att du betyder sjukt mycket och är en otroligt stor inspirationskälla! <3

    1. känner mig så lyckligt lottad som får all denna stöd, tack du anonyma människa <3

  2. Du klarar dig det vet jag, kämpa på som du alltid gör!