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2nd Transplant and my daughter is so ill

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  • It’s already October… wow!

    thanks for being there. I hope your daughter’s shingles is better Audrey. apparently it takes ages. Mine was a milder form, had it round my ear.

    Today I got back from the clinic after overnight for my ECP treatment, leukapharese. Unfortunately spent the night in one of the rooms I was in for about 9 months whilst acute after the sct. My neighbour was beside herself which was difficult to cope with because she had lost her ability to speak coherently. I do so want to help and there’s such little we can do. I‘ll be ok, time heals.

    my cough was thankfully not gvhd and another bit of very good news is my new scleral lenses are in and working which means Im not in acute pain which is absolutely game changing. My feet still make me semi mobile but I’m walking without my granny walker now.

    I’ve been really frightened by Dave passing because he had high thrombocyte count and then apparently passed from an embolism, is that right Alison?. None of us can reserve a time slot to pass, so I’ll just keep going.

    I plan to carry on checking in now and again. I’m thinking of you, Michelleanne, Audrey and you too Alison. Very proud of you all. We’re heroes!

    Thank you 🥰

    much love

    Helen

    Liam_at_AnthonyNolan
  • Hi helen

    your news is promising , pleased your cough isn’t gvhd

    we can’t help everyone only listen everyone is so different with there recovery , doesn’t mean what Dave went through would happen to you please don’t think like that

    stay strong take each day one at a time ❤️

    Liam_at_AnthonyNolan
  • Thank you Michelleanne, it counts hearing it from you because you know what you’re talking about. And how it is to be frightened.

    but I will ask them if it’s a risk and if there’s any treatment of any kind. In the past they’ve just said no.

    love and thank you for being there. Even if we don’t check in so often.

    how are you?

    Helen

    Liam_at_AnthonyNolan
  • Hi helen

    lovely to hear from you

    I would it might ease your mind a little , as long as you can cope with the answer if it’s no

    I’m not to bad at the minute , having trouble with symptoms like vertigo don’t no where it has come from oh r it’s the cold weather

    always here whenever you want to chat

    stay strong and take care ❤️

    Liam_at_AnthonyNolan
  • edited October 14

    Hello,

    The vertigo symptoms sound challenging Michelleanne, … it would be nice to know why.. I hope it’s not too bad and you can cope.

    I’m being kind to myself at the moment which seems to help me be strong…

    for example , I lay down on the sofa today and didn’t have my inner critic feeling bad about it, even had the telee on, I even dosed off to sleep which is an achievement for me in the daytime.

    H x x x

    be kind to yourselves ❤️

    Liam_at_AnthonyNolan
  • Hi helen

    i don’t no what is causing it , I’ve had my flu& Covid vaccine so now I’ve got cold symptoms

    having a day like that does you good , I sometimes have days like that ,just a afternoon with a nice coffee and a biscuit in front of a lovely warm fire

    the simple things give you the most pleasure 😂

    enjoy your cosy days ****

    Liam_at_AnthonyNolan
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