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  2. Typing this via my mobile, as my laptop doesn't function at the moment... hope this works...

    So yesterday was a clear failure visit at the university eye clinic. I went there because after the last operation in December, the Professor said she wanted to see me now in April for a control check of the left eye and then discuss and make an appointment for an operation on the right eye. So far the theory.

    I had to wait over an hour until some assistent doctor in her practical year and a medicine student began some tests on my eyes. After an eternity of attempts to torture my brain by sending ridiculous lightening effects, angle view experiments etc on my eyes without any break, they told me to return to the waiting area, the doctors would come to see me soon.
    Another hour of senseless waiting later, I asked if they'd forgotten about us (my dad was with me as I can't drive myself with hardly seeing anything anymore).
    Another one-day-to-be doc came to have me undergo another series of tests. Finally she told me she would recommend a new pair of glasses and then release me home. Whatever I asked her or whatever I mentioned about the planned op, she always said there was nothing to be done anymore about my f***ed up situation regarding both my eyesight and remaining brain tumour. Wtf she was so negative and treated me like, I dunno, a retarded idiot or something stupid like that. I'm not cool but I was expecting to be taken serious when coming all the long way to talk about a treatment not too unimportant for my every-day-life...
    However, before I lose myself in ranting again here, I asked to see the professor (who did the two eye operations in 2014 and had told me another op would definitely improve my overall eyesight on the long run). Waiting area again. After another hour, my dad told the reception lady we could not wait much longer as we still had a 2 hours ride home ahead of us and he had to leave for work in the evening. The lady called the prof's office somewhere in the clinic - bottom line was, the prof had no time to see us. Maybe if we would wait a little longer, then maybe... wtf it was around 8 hours since we arrived at the clinic, with official appointment and all,and all we got was a test marathon, a monster headache and some assistents who obviously didn't care, shoving me off telling me there was nothing else to do about "such a complicated rare case " like me (congrats). One of them advised me to return to their clinic "in a year or so" for another routine check of the eyes... we left then.

    A wasted day. No results from any test. No words exchanged with the professor. No word about another op or any other option for further treatment.

    It's like the whole path of recovery and a small attempt to function in every-day-life again was put on a full stop now. I dunno, wth. We need to talk about it here in the family, what to make of it and what to do now. It is no matter of urgency as the eyesight problem is only a side aspect of the tumour issue (which is at a good state so far, see MRI from January) - but still it can't stay this way.
    We'll see. One way or the other. Bottom line: yesterday was a clear waste.
  3. absolutely outrageous!! having an appointment and coming all this way, and then not even getting to see the professor who should do all the tests and talking, what with you being a RARE CASE and all. bullshit, really, pardon my french.

    as much as I could keep on ranting, there is one good thing I'm getting out of this, mate, and that's you not accepting this and letting things be as they are maybe there you have your answer/decision already. get that second opinion we talked about, this can't be the end of the line!

    /big hugs
  4. uhhh really bad moments ..i m sorry for you ...that happens here too ..waiting a lot for a doctor who already have an appointment

    Do you have the phone of that doctor ? can you call him ? maybe that s a way to talk to him without that waste of time
  5. friends here asked for an update. okay, here is a short one

    the thing is, nothing much has happened. The eye-sight issue is still as bad as before. I got two new pairs pf glasses, but hey, I can only use either the right eye (for walking without getting out of balance, but with hardly any view due to the damaged "viewing nerve", whatever it is called in English), or the left operated eye, which is somehow "sharper" in view but leaves me dizzy when I watch with it for a longer time. So blah, I still cannot work properly (yes, even if I lie about it concerning earning money for my insane amount of tickets, S. ).
    I cannot drive a car on my own (which drives me insane, being dependend on everyone all the time), nor can I ride a horse, nor...... blah. It sucks big time.

    The Cushing syndrome is at full force again the past weeks, affecting weight, heartbeat, blood pressure, muscle decrease, bone structure decrease, bone pain.... big shit (excuse my choice of words, I usually don't do this, but I'm frustrated).

    Bottom line: still retarded as you can be, still not able to handle major things on my own, still incredibly unsure if and how to get to the U2 gigs in a few weeks and make it through every single show, physically. Sucks big time.

    End of rant. Let's go back to the funny side of life *off searching for that*



    ps: again, but still heart.felt, thanks to those who still care and ask me again and again how I am. I love you, you know who you are
  6. Originally posted by MacStripey:friends here asked for an update. okay, here is a short one

    the thing is, nothing much has happened. The eye-sight issue is still as bad as before. I got two new pairs pf glasses, but hey, I can only use either the right eye (for walking without getting out of balance, but with hardly any view due to the damaged "viewing nerve", whatever it is called in English), or the left operated eye, which is somehow "sharper" in view but leaves me dizzy when I watch with it for a longer time. So blah, I still cannot work properly (yes, even if I lie about it concerning earning money for my insane amount of tickets, S. ).
    I cannot drive a car on my own (which drives me insane, being dependend on everyone all the time), nor can I ride a horse, nor...... blah. It sucks big time.

    The Cushing syndrome is at full force again the past weeks, affecting weight, heartbeat, blood pressure, muscle decrease, bone structure decrease, bone pain.... big shit (excuse my choice of words, I usually don't do this, but I'm frustrated).

    Bottom line: still retarded as you can be, still not able to handle major things on my own, still incredibly unsure if and how to get to the U2 gigs in a few weeks and make it through every single show, physically. Sucks big time.

    End of rant. Let's go back to the funny side of life *off searching for that*



    ps: again, but still heart.felt, thanks to those who still care and ask me again and again how I am. I love you, you know who you are
    Prayers to you!
  7. Originally posted by MacStripey:friends here asked for an update. okay, here is a short one

    the thing is, nothing much has happened. The eye-sight issue is still as bad as before. I got two new pairs pf glasses, but hey, I can only use either the right eye (for walking without getting out of balance, but with hardly any view due to the damaged "viewing nerve", whatever it is called in English), or the left operated eye, which is somehow "sharper" in view but leaves me dizzy when I watch with it for a longer time. So blah, I still cannot work properly (yes, even if I lie about it concerning earning money for my insane amount of tickets, S. ).
    I cannot drive a car on my own (which drives me insane, being dependend on everyone all the time), nor can I ride a horse, nor...... blah. It sucks big time.

    The Cushing syndrome is at full force again the past weeks, affecting weight, heartbeat, blood pressure, muscle decrease, bone structure decrease, bone pain.... big shit (excuse my choice of words, I usually don't do this, but I'm frustrated).

    Bottom line: still retarded as you can be, still not able to handle major things on my own, still incredibly unsure if and how to get to the U2 gigs in a few weeks and make it through every single show, physically. Sucks big time.

    End of rant. Let's go back to the funny side of life *off searching for that*



    ps: again, but still heart.felt, thanks to those who still care and ask me again and again how I am. I love you, you know who you are
    The fight go on !! You are here ! and more than time before !

    and you are going to see some irish boys( they are not boys anymore)

    Always is nice to see you here !
  8. I never got to fully come back to your last PM, life keeps getting in the way Always good to see you around. The Show Must Go On, or so they say... Much love, K PM later! Promised!
  9. thank you, Greg, always appreciated

    Pato, the left eye was closed for about 2 years (since the damage was done during surgery #2 in 2012), then a surgery was done in the eye clinic in Giessen in 2014 twice to regenerate the eyebrow muscle.something so I can open the eye lid again with raising my eyebrow..... sounds complicated, and it is, but it works I just can't use both eyes together anymore, but hey, at least I can use the left eye again
    I still owe you a pm, for such a long time, will get back to you soon

    Sergio, no hurry, you know our deal on that and yeah, Queen, omg love forever
  10. Great to hear from you, as always Kirsten. As Pato said, you've been around here a lot more than usual and it's good to see!
  11. okay folks, short update.

    Some medical checks have been done again recently. Slight change for the worse in blood tests and hypophysis work, but bearable as far as the main functions are concerned (said the doctors).

    Still trying to train my left eye for more and more every day use. Difficult. But no choice for me, right. So... feeling for balance while walking is still damaged, swaying every now and then, feeling slightly dizzy now and then. Cortison is still butchering my system, bones ache, short-time memory damaged due to the stroke-like incidents and the radiotherapy. Headaches and numb feeling on the left body side sometimes. Hell yeah. Feeling alive, right, one way or the other.

    Typing this as tomorrow -- TOMORROW, friends!! -- the first major travel in my life AFTERWARDS begins. The travel for the next U2 pilgrimage after the heavenly gift of 360° two summers long, a lifetime ago, Now, half blind, fat from cortison and omg not myself anymore ... except for my fangirlish will to see U2 and a bachelor degree in bank robbery. They saved my life. They do it still, every day. So keep your fingers crossed I'll make it safe to Amsterdam tomorrow - and God help me, the moment the band enters the arena and I am there and alive to be WITH them, I know God is with me, and I will cry tears for the sake of being alive

    /being emotional

    a journey of 4 years since the first diagnosis comes to a happy high-point tomorrow for me. And all that because of our band -- and because of you, my friends, my family here. You carried me through. And you still do. I love you, guys walking on.

    Emiel, tomorrow night will be for you, too. Always with me
  12. Kirsten! Hope you have a great time tomorrow and at all the other shows you'll be seeing this year!

    Have fun!!!