I’m sorry

First of all I am extremely sorry to scare you guys like that. But it was like my life crashed..once again.

Every appointment is a fresh death sentence for me. Its been 3.5 years and I haven’t heard or given anyone a good news.

I have seen 20+ doctors and they all agreed to at least 1 thing..its autoimmune..and my treatment which was very harsh btw was at least on the right path.

Now I am left with a residual mass (that wasn’t growing or harming) that needed surgery that was causing disfigurement.

I worked so hard to gather myself and I was really close to the finish line. I had everything planned. Just few months. This surgery and then I will be back home with dad and family.

Friends were congratulating me. I was working hard to get back to my normal form. Then I could go work and at least have some hope for future.

I started dreaming.

Then today’s appointment..

I had an MRI few days back. From a new place recommended by this new surgeon (only surgeon available who can perform this surgery).

And today we had to discuss the report and the plan.

Turns out my dingosis had been wrong all along. I might not even have autoimmune. It might not be in the region they kept on treating.

Now let me explain that mass/growth. I might show you guys MRI image too but I dont have cd player in my laptop right now so I will explain. We have optic nerve behind our eyeball and it extends to a small sort of opening of our brain.

In my case that growth is surrounding option nerve in that whole passage. fine. I knew it. It was a just a growth that has cooled down after years of treatment.

But today the doctor tells me its a benign tumor that has reach that small opening already. Maybe it has already reached brain.

I was staring at the screen blank and pissed thinking..this better be a joke…this is not happening..

A whole team was present there now I understand why. I am a case doctors fight over. Its rare.

The surgery stays the same. But the fact that this growth actually grows or keeps on growing…this crippled me.

My entire world crashed.

All I could think was ..my dad..he doesn’t deserve this. He is a great father and a great man who has been tested enough already. How is he going to deal with it. For him his rest of the life might be handling a sick grown up daughter.

What am I going to do later. I dont have one reason to live.

In fact I am going to be a burden on whoever will be kind to me and the rest will probably stop acknowledging my existence.

A useless sick person with an undiagnosed diseased that needs monitoring all the time.

This is all what happened.
I was scared lost mad and dont know what else. I posted that. Then I realized u all are worried. I am really sorry.

I called sam and I couldn’t talk. Partly because I had been crying so much I just couldnt speak.

Then I dont know if I passed out or slept I was gone for sometime that I know.

I have no idea what im going to do now. Cant think straight.

Edit: my next appointment is with a neurosurgeon..dont even know how to react to it.

86 thoughts on “I’m sorry

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  1. It’s okay to vent… I used to write a lot for therapy, and now I write for joy. Keep on praying and keep the faith that all will work out. I pray for you and your family too! It gets me through everything. I’m so sorry that you are going through everything you’re going through. It looks like you have a good following of people who care. God bless!

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    1. Its very wierd. Previously they were calling it orbital pseudo tumor. Now they are calling it meningioma i.e. a type of brain tumor with slow growth. My major concern if it keeps on growing then what. If it harms my brain….
      He was saying alot of things but im not convinced. This cant be tumor. A tumor wouldnt sit still like that for 3 4 years. I am thinking to send mri images for 2nd opinipn somewhere. Will do something tomorow.

      Liked by 1 person

      1. I believe a second opinion on a serious issue is simply prudent. Good move. Try to breathe. You scared me earlier….but I’m glad you wrote it. I hope you’re in a bit better frame of mind now. 😊

        Liked by 1 person

  2. Your body won’t give up as long as you don’t give up either. It has all the things needed to fight any sickness. Believe in its power and be kind to yourself ❤

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  3. Stephen Hawking was diagnosed with motor neuron disease at the age of 21, which made him become depressed and he almost gave up on his studies, but he continued because he has a bright mind and so do you, as I can see that in your writing. Don’t give up!

    Liked by 1 person

  4. Hey! I had no idea that you were going through all this and I wish from the bottom of my heart that everything becomes fine again…I really don’t know what to say,I just hope that you find strength and courage to brave this storm and wish I was there with you as a pillar of support.. this post was a heart-wrenching reminder of my long absence here.Iam so sorry and i pray and hope with all my heart that you become fine again.And i know you will.

    Liked by 1 person

  5. Hold on, Kitten!
    Never say ” no reason to live”. You have a million reasons, your dad is only 1 of many but start there.
    You say the surgery is the same? Great! Plus the knowlege that its filled the area and possibly putting pressure on the brain as well as nerves….the removal may in fact cure many issues. Also, finally finding a doctor that could find what others haven’t…thats great news! Finally, answers and real solutions possible! Getting back to that no reason statement…..when I feel pitiful about whatever Im going thru, I hold myself up to someone like, let’s say Stephen Hawking . He most definitely had purpose and a gifts to give to the world and in his condition, his personal strength and fortitude were awe inspiring! You have gifts, talents and you are loved. Lift your chin! See all these hands lifting you, ready to catch you, holding you up. Vent….we can take it. Cry….we’ll wipe your tears. Fight on…we charge with you. You are not alone.
    P.S. I’m a mom. Whatever our kids need in life….is everything we desire to give with everything in us. Your dad, is the same and we wouldnt trade a moment of it for the world.

    Liked by 2 people

    1. And i am crying again.
      Well the very first thing u said is right once they take a chunk of growth out and make space in bone there will be less risk for damage on the nerve. And bones too.
      Honestly i dont trust these new reports. This cant be true. The word written in report is meningioma ..thats brain tumor..it cant still still like that for 3.5 years..i doubt it. Right now my head is dizzy will see tomorow what to do

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  6. “What am I going to do later. I dont have one reason to live.”

    I can think of two reasons to live: your writing and your art.

    Someone once said, “I would have ended my life – it was only my art that held me back. Ah, it seemed to me impossible to leave the world until I had brought forth all that I felt was within me.”

    Liked by 1 person

      1. Yes, that’s why our community exists I guess. It is the best support system that I ever encounter. Vent here we all understand as we have all felt at least once what you’ve felt earlier.

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  7. I am sorry that you are going through these issues. You are strong and have many reasons to live. You are a wonderful writer and artist. Please know that you are not alone and that many people care about you. Continued prayers for healing and comfort. Take care.

    Liked by 1 person

  8. No words I can say will make things better. I can only suggest that you hold on to those that love you most. Don’t worry about being a burden or a drain, they love you. Let those that care, hold you up and help you. This is horrible, and no one deserves this. Stay strong and connected. I wish you well, stay strong.

    Liked by 1 person

  9. 0K, damn. Why am I hearing this just now? You shouldn’t hide that sort of things from us. Good God, Alyana. If there is something bothering you, say it. I want to know about it. Now, don’t lose your calm over this. These doctors know what are they doing, and if they don’t, there are others that do. Get in the ring with that thing and punch it. Let me know how did it go. Keep us posted and don’t hide shit from us. We care damn it!!!

    Liked by 2 people

    1. There are alot of things that you guys don’t know because i didnt see the point bringing them here. Sometimes i say ‘i could be next malala’ dont want to portray myself as a damsel in distress.
      Right now i cant really think tomorow morning will do something about it.
      Thanks for being supportive as always

      Liked by 1 person

      1. I know, but still. It seems unfair to not tell us. I told you everything about me. I really, really, really, REALLY like you and I want to know what is going on with your life. One click on my blog, and there it is, Night Blabbering and me spilling my guts out. If you want to get help, you need to open your hands and let us in. I know over a dozen of people who had serious troubles with cancer and LIVED… And I live in undeveloped country, so let that sink in. Yeah, people actually soldier up and fight the damn thing. Now, I am glad it wasn’t the bad kind that got to you and there it is, your silver lining. See, you are not damned, you are spared for something more. Ughhhhh, you scared me shitless. Seriously now, keep us posted.

        Liked by 1 person

      2. Now you just got me interested, but I know you don’t want to talk about it. Ugh, lets drop it here. All I wanted you to know is, we like you, we want to know what is happening so we can add some advises and ideas. Take some rest for now. We will talk later.

        Liked by 1 person

  10. Your diagnosis maybe true or false, the changeable is in constant flux .. ‘you’ in whatever condition, are the constant… your presence, your attitude, your gift are your truths… don’t sway with the winds… hang on to the sun light even when it rains cos it’s their for you and you know it…
    much love and well wishes… never give up and never stop your artistry…

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  11. Such a bad news. I really wanted it to be the end of the troubles. Guess trouble always find us. Stoner I don’t know what you’re going through. I’m not even going to try. But trust me when I say this, only you can fight and figure this out. I will be at the sidelines cause it’s the best thing me, Sam, your dad could do. But ultimately it’s your fight. It’s like a boxing match we can just coach and see you, but you’re the one who is taking and then giving a beating. Don’t look down on yourself. I know these are just words, but hey there is a guy half way around the world who is pissed and still thinks about you. I don’t know about the tumor but your influence is spreading.

    Liked by 1 person

  12. Sweetie, here if you need to talk 💗
    In 1980s I found out I had a pituitary tumor on optic nerve and pituitary gland behind my eyes. Had surgery and all was well. . they said it could grow back but doesn’t seem to have done so.
    I pray the same will be true for you 🙏

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  13. Ending things, yourself, is NOT the answer. You are here for a reason and you may be surprised at people who are ready, willing and wanting to help you, should you need it. Please keep fighting and try to keep focused on light not darkness.

    Liked by 1 person

  14. I’m glad you told us so that we had the opportunity to be there. And I’m glad that you were able to push it aside long enough to move through it. You’re valuable.

    Liked by 1 person

  15. You have a purpose in this life. Don’t quit yet. This is just a little bump in the road. My sister just had brain surgery for a tumor on her pituitary gland, it was on actually on her brain stem when they got in there. She did her research for a great surgeon and found one in Texas, now she has recovered well and her symptoms that she had for years are gone. It is scary, but we are all here for you cheering you on knowing that you are strong enough to fight through this. Take it one day at a time. If you would like I can get you in contact with my sister and when you are ready you can ask her questions about her surgery. Maybe it will help.

    Liked by 1 person

    1. yesterday only I googled pituitary gland as a fellow blogger has had that removed too.
      it was different from what I have in appearance and behavior both. I am still hoping they stop calling mine tumor its scary. but whatever it is. it is here. I have a few weeks to look into it further. the surgery is still the one I was going to have but it has different implication now.
      well I am so glad your sis was able to come out it. I am looking for second opinion already.

      thank you so much I will definitely ask if I need to know something that you so much for helping 🙂

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  16. Hey . Were there with you . Sending you lots of good vibes. Just want to you to know that you make me smile with your humour and your realness when everything else feels fake. I am thankful to have met you this way, warm hug to you dear sister✨.

    Liked by 1 person

  17. Sweetie, ending your life is not the answer to this obvious problem. You will meet with the surgeons that know what is best for you, and this will be taken care of. I am sending you virtual hugs and prayers your way constantly. You have to keep praying too. You’re gonna make it through this is what you have to keep saying to yourself. I’m here for you girlfriend! 🙂

    Like

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