New to the group with spinal mets

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  • gjf
    gjf Member Posts: 11
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    @FYONA1 Hi, no I haven't experienced hair thinning  :)
  • FYONA1
    FYONA1 Member Posts: 138
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    Hi @gjf
    thankyou for letting me know 
    you must be very fortunate with your hair as most women on this combo have experienced hair thinning/loss
    i guess I'll just have to wait and see what happens to me 
  • gjf
    gjf Member Posts: 11
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    @FYONA1 yes I am pleased about this I didn’t actually know hair loss was common for people on this combo. All the best.
  • FYONA1
    FYONA1 Member Posts: 138
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    Hi @gjf
    how should I feel if I've been told I might have five to ten years to live
  • gjf
    gjf Member Posts: 11
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    @FYONA1 I only know how I feel, and yes the uncertainty is without doubt, hard. I was diagnosed 10 months ago and it was hardest then, in many ways. I’ve got more used to not knowing, my oncologist does not give much away nor does she really know. Of course, no one really does. I have my own ways of dealing with this which I am happy to share but... sometimes positive thinking and peppy people aren’t what one wants to hear. It’s not everybody’s cup of tea! Sometimes though (not always!), that way of thinking helps me. I do also think giving yourself time helps...try to relax, breathe and treat yourself at this really difficult time
  • FYONA1
    FYONA1 Member Posts: 138
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    Hi @gjf
    i would be very happy if you could share some of those ideas with me plz
  • FYONA1
    FYONA1 Member Posts: 138
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    Hi @gjf
    i forgot to mention to you that I had my ecg and bloods yesterday everything was good to continue on with the ribociclib and letrozole 
  • gjf
    gjf Member Posts: 11
    edited May 2018
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    Hi @FYONA1 , sure thing:
    I feel glad I, and my loved ones, have time to prepare for the end - which hopefully is a very long way off!  
    i feel grateful I am being so well cared for, by my loved ones and the medical team plus the wonderful charities like BCNA
    I also treat myself to the following whenever I can: listening to music, have hot baths, spend time with friends/family - especially those I don't feel I have to make an effort with!, I exercise a lot (walking, swimming, cycling etc), I try to relax, read a book, I've taken up learning the piano and I love it, I get out in nature even if that's just in the garden, I stroke the cat, I try to meditate, enjoy the winter sun, and eat good food.  And I try hard (not always successfully!) to be in the moment when I'm doing any of those.  I work for myself so I'm trying to give myself time off and at the same time make my work as un-stressful as possible.
  • wendy55
    wendy55 Member Posts: 774
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    Hi @FYONA1, have sent you a private message,and I agree totally with the above,

    Wendy55
  • FYONA1
    FYONA1 Member Posts: 138
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    Hi@gjf
    thanyou so much for sharing this with me
    i went to the hairdresser today and had my hair cut and she checked it for me I will be continuing to do this with her every three weeks as I'm worried about it thinning out or losing it 
    most of the women on this combination have experienced some sort of hair thinning 
  • FYONA1
    FYONA1 Member Posts: 138
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    Hi @wendy55
    i sent you a personal message thankyou
    fyona xx