BLU
Active topics
  1. Good vibes & love to you Kirsten
  2. Originally posted by flowerchild:[..]
    hope this isn't gonna sound stupid, love, but if the doc thinks it's urgent, then he shoulda scheduled the scan first thing monday morning! not in a MONTH makes me think/hope it's not as serious as he might've sounded... all fingers crossed it can be easily managed, whatever it is.

    sending lots of love and positive energy your way I think of you every day.


    I agree with Jana . Anyway love form here ! an always with you
  3. Originally posted by MacStripey:Quick update, as real life never stops changing.

    My eyesight on both eyes has gone down rapidly in the past weeks. Eye doctor (<-- word?) did several checks. Optical nerves of both eyes showing major loss of function. Especially of the left eye, which underwent surgery a while ago. I can hardly see anymore. Plus dizzyness has increased again, unstable swaying walking. I freaking hate it.
    Headaches have returned for occasional bothering.
    MRI of the head just scheduled for in two weeks from now. My eye doctor says it's urgent to clarify if this is just an afterglow thingy of the radiotherapy I have to live with - or if the tumor is growing again.

    Maybe there was a reason why I went to Ireland last month, in means of while I still can. But unless I get results in two weeks, I want to believe life is not kicking my butt again.

    /update

    I need some Metallica / Linkin Park madness on my earphones now. Loud.

    ps: sorry for this in happy U2 news days, but I promised you,my friends, to include you on this, as you're always there and care. Much love, and apologies.


    Hi Kirsten,

    We discovered something this week and I thought of this post... Our daughter has stargardt disease (macular degeneration) and for the past ten years we've been waiting for something like this to come along. Not sure if you've heard of the OrCam, but if not, you should check it out...

    http://www.orcam.com/

    We tried one out for her and she immediately began weeping tears of joy.

    Anyway, thought I would share with to check out in hopes it may ease your situation. hope all is well.
  4. Originally posted by blueeyedboy:[..]


    Hi Kirsten,

    We discovered something this week and I thought of this post... Our daughter has stargardt disease (macular degeneration) and for the past ten years we've been waiting for something like this to come along. Not sure if you've heard of the OrCam, but if not, you should check it out...

    http://www.orcam.com/

    We tried one out for her and she immediately began weeping tears of joy.

    Anyway, thought I would share with to check out in hopes it may ease your situation. hope all is well.
    hey Greg,
    I never heard of these before, I just took a first glance and it seems to be an amazing innovation. I will take some time to explore it further, and find out if it could help me along - but thank you so very much for pointing me into this direction I will let you know once I got more into this device. Until then, all the best for your daughter (so happy she wept with joy over this helpful thing, I can feel her happiness!!), and for all your family as well. Walk On and thank you again
  5. Originally posted by MacStripey:[..]
    hey Greg,
    I never heard of these before, I just took a first glance and it seems to be an amazing innovation. I will take some time to explore it further, and find out if it could help me along - but thank you so very much for pointing me into this direction I will let you know once I got more into this device. Until then, all the best for your daughter (so happy she wept with joy over this helpful thing, I can feel her happiness!!), and for all your family as well. Walk On and thank you again
    Peace, love and happiness to you and yours, as well! Keep me posted!
  6. Time for an update. I will keep it short this time.

    As in every January, the massive round of controls were up.
    MRI of the brain showed the tumor has not grown again. Relief. And time gifted to me.Thank the Lord above.
    Blood tests are not well, they haven't been for months. Cushing syndrome still working its bad side on my body functions, kidneys, heart, bones, liver.
    Eye sight still getting worse, can hardly see anymore, all blurry. Oculists have given up on me. The crap.
    Brain functions show reactions to the long-time radiotherapy effects now. Memory gets blurry, I forget many things, I mix up names and places, sometimes I even have to focus hard on a situation to recall what I want or actually where I am. it is a kick in the butt for me who used to travel and meet people. I can't do many things anymore. I hate it.
    I mix up words, in means of saying wrong things, without even noticing it. I want to shout out loud and scream at fate or whatever is responsible for that.
    I have lost my joy de vivre lately. I am not the same anymore. Yes, I am alive. And a heart that is broken is a heart that is open. But still, it is broken. It was during i&e already, and it still is. I feel alone, and lonely, and I have lost my path in life. So easy to give up eventually.

    Got nothing else to say. Neurologist says thumbs up. I feel like head down. So tired of it all. Sorry, Emiel, I know I should be glad to be alive, but right now, I am no brave person anymore. Fate can be such a pain in the heart, on the soul, when one gets stolen of a life that was so loved once. So tired of it all.
  7. Oh I'm so sorry to read that MacStripey. I've read things posted in this thread now and then since I started lurking this site 3 years ago but I've never commented here in all that time because I'm 1. not very active on here and 2. was not ever sure what to even say to someone who was experiencing such a pain that I could not relate to. Well, unfortunately, cancer has crept into my life two months ago when my mother was diagnosed and suddenly hearing the stories of others has so much more meaning.

    You must have been through so much that I can not even comprehend, and I've even read that your own mom has had her own battle with cancer too. I don't know how you could feel but you must have felt everything I have been dealing with and so much more. So I have to say to you that you are still a brave person, even if you don't realize it. You being here still nearly 6 years after this thread started and still writing to us takes lots of strength! I will not tell you how you should be feeling, I have no place, but I will tell you that your story so far is an inspiration to me in ways you probably can't imagine! I know what you mean when you say you want to scream and curse whatever it is that brought this all on you, it's awful and terrible and I wish no one ever had to go through anything like this, what else can we do? But your journey so for is a beacon of hope for me and for that you should be proud! Every time I saw this thread updated I smiled knowing you were still here and fighting. Your presence and your posts may mean so much to someone. I hope you are able to find something to ease your loneliness, I'm hoping for the best for you. You'll be in my thoughts, my heart goes out to you! I wish there was more to give or say to you. For now I'll just leave you with a big ol' digital internet hug!!!
    (つˆ⌣ˆ)つ⊂(・-・⊂)
  8. I want to keep this as simple as possible and just wish macstripey and neontiger64 and your mother all the best, I don't know either of you but the journeys you have shared on here are inspiritational. I haven't read through this whole thread so id like to echo the sentiments to anyone else going through something similar.
  9. So tired of it all.



    WALK ON.


    That's an order.
  10. hi macstripey, i am sorry to hear of your illness. If you are in the states you may be able to get hyperbaric oxygen therapy for radiation induced issues to the brain. It would be called 'delayed effects of radiation/soft tissue radio necrosis'. Please look into this....it has helped people. best wishes.
  11. Hi MacStripey, I just want you to know that there are plenty of people in the shadow of these forum - like me- who are usually not commenting topics but who are following your story and holding you in their thoughts.
    So You are not alone.
  12. Hello Kirsten, I understand and I am really sorry to hear. I hope some new U2 music can help soon... or a little vacation, if this is possible. You truly are an inspiration to all of us. I send you all best wishes - thinking of you.
Contribute to the U2 community with uploading photos or by telling us which shows you have visited.
Contribute to the U2 community with uploading photos or by telling us which shows you have visited.
Contribute to the U2 community with uploading photos or by telling us which shows you have visited.
Contribute to the U2 community with uploading photos or by telling us which shows you have visited.