BLU
Active topics
  1. Best wishes and all the hapinness in the world to you, Kirsten
  2. Everyone who is with me all this time, I love you. I know I'm bad and unreliable on answering all your comments and pms, but be sure my heart beats for you. True friends are hard to find, and I carry you here in my heart. You know who you are. As always, take my virtual hugs as sign of gratefulness you're by my side all the time

    As for now, another step in this journey is ahead. Next week, April 16, I have an appointment again at the university clinic in Giessen, to check on the left eye which was operated twice last year, and to discuss how the chances are to operate my right eye as well to adjust it to the combined eyesight with the left eye.

    It is a complicated matter for me, let's be honest.
    Facts are: my left eye is now fixated and I can only look straight ahead with it, not sideways. The iris is not reacting on light changes anymore, it stays fully open (like I'm stoned or something). But I can see sharp with it, at least in the distance.
    The right eye's optical (visual?) nerve was once damaged by the tumour when it was at its biggest size back in 2011 (when it was discovered first), so when I look straight ahead, the whole right side is blocked for me, no sight there. A thing that will never change for any better again.

    Since the last operation in December, I can use either the left or the right eye for looking, not both together, as the view of both eyes creates differently angled and double images that cannot be compensated by glasses.
    Plus, when I use the left (sharp) eye, for tv or something, I must not move. As soon as I move, let's say walk around or turn my head too quickly, my sense of balance gets out of control inside the brain and I stumble or fall.

    Bottom line: no driving any car nor my beloved horse-drawn carriage, nor being able to find my way outside home by myself, I always need someone by my side to guard and guide me. Ever since the operation in 2012 was f***ed up

    To make my (as always) too long story short: next week i will have to decide whether they will do just another operation, another big and risky one, on my right eye, to try and get my two eyes onto the same angle level so that one day, maybe, I might use them both together again.

    You know I have taken all these steps from 2011 until now. But as I said to a close friend here a little while ago, the last two operations in Giessen, when things got difficult with the left eye, something inside me broke for the very first time. It all became too much. A heart that is broken is a heart that is open..... but broken nonetheless.

    I am not at all sure what to do now. Follow the path, keep my head up, fulfil family's and friends' expectations, and WALK ON, taking ýet another risk.... or not and give up, and leave things as they are now? I hate the state I'm in, being so bloody dependent on others while I was always used to doing things on my own.... I dunno. I am broken inside, let's face it. And I have no idea what to do. I am not as strong as people see me, you know. I admit it

    /blabla
  3. Hmm...
    Depends on what the risks of the operation are probably...
    And how much your current situation sucks (looks like... a lot, for which I'm sorry :s )
    I/we can't decide for you Kirsten. The only thing I'd like to say is : don't give up now. You've come too far already to surrender. 4+ years of fighting, it must be hard, but some day, someone or something up there will HAVE to respect your choice of fighting and give you something back. There's a moment of surrender for everyone in their lives, but I don't think yours has come already. My opinion. Take care.
  4. I'm really sorry to read this... I wasn't around when this was "on the news", and all I can say is that I really hope that you can heal... "emotionally".

    I don't really know you, and I've been accused by family and acquaintances of sounding too negative/pessimistic -even when what I say makes perfect possitive/optimistic sense in my head- so, please take my words with a grain of salt.

    Don't pay too much attention to your physical condition just focus on your emotional health. When you evaluate the risks and expectations of the possible surgeries, do it from the emotional health point of view, because in the end no matter how positive or negative the outcome of the surgery is, all that matters is how would you feel with yourself either if you went for it or not.

    Life sucks anyway, so surgery or not, life won't be perfect. That means that you're free to decide whatever you want because in the end there is no right or wrong option anyway.

    Good luck, whatever you decide, I really hope that you feel good with yourself!


    "What you don't have, you don't need it now, you don't need it now..."
  5. In my opinion, the simple fact that you're battling so hard and still manage time to keep sharing the whole thing with us proves that you're stronger than 99% of this community Kirsten. You've been dealing with this difficult situation for a long time, so I think it's ok you feel what you're feeling now. I can not imagine myself in a situation like yours...I'd probably quit, but you've been showing to us what the word strong really means, so I just hope you start feeling better and better and I wish you all the best, my friend!
  6. wise words from all the members above, not sure I can advise anything else, except for you to wait and see what the doctor says at your meeting maybe they can offer you some reassurance - no matter which way - and thus make the decision a little easier for you.

    but I want to put emphasis on the following: k, you are strong even in your weakest moments. what you have endured, even with the tears, is way beyond what most of us could. whatever you decide to do, it'll be a brave decision either way and for every step you are willing to take, surgery or no, I admire you and love you.
  7. kirsten, when i cant make a decision i turn to God in prayer ''to help me make the right decisions'' and sometimes when speaking to the doctors God uses them to help you make the right decisions by what they say, if you feel reassured or sceptical, needless to say i think you will make the best decision for yourself..
    on that note you are such a lovely encouragement to me on how positive and happy you always are and how you embrace life so lovingly despite of what your going through, your such a beautiful powerful little spirit and i admire you
    keep on shining, we love you
  8. Originally posted by AidanFormigoni:In my opinion, the simple fact that you're battling so hard and still manage time to keep sharing the whole thing with us proves that you're stronger than 99% of this community Kirsten. You've been dealing with this difficult situation for a long time, so I think it's ok you feel what you're feeling now.

    Once again Aidan speaks with truth. Nothing else to add, K. Just keep walking on whatever your decission is - everyone will admire you exactly the same. Even quitting now would be admirable. Just do what YOU want to do, screw the rest.
  9. Amen Aidan...you've walked on with us throughout this whole journey Kirsten - we love you and support you whichever way you want to go . As Sergio said, just do as you wish feel is best for you
  10. In Gießen right now. In the middle of a zillion tests and talks. I am pissed like hell. They don't take anything I ask or say for serious. Like I'm a retarded idiot. wtf
  11. I am grateful for all your input above, dears. It helps me think over my decision. Later today when I finished here. As for now,very moody Stripey here -_-
  12. How did it go, Kirsten?