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Intro of Pennyrose

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  • Pennyrose
    Pennyrose Member Posts: 6

    Thank you for your words of support.

    I am sure to enjoy my Chemo Free time and hope you are all getting some respite over the Christmas break.

    Cheers

    Pennyrose


  • ElaineG
    ElaineG Dragonfly Posts: 60
    HI PennyRose

    With a good dose of humour, I would answer "both" re your Question of making plans for life or funeral!
    Seriously - I hope that makes you smile :)
    In all seriousness no-one knows (think of those people at Dream World this week).  

    The good and bad thing about our situation is that we KNOW death is real - not something many of us deny or struggle with all our lives.  If anything it makes us more determined and or resilient to do the things that matter - when we are still here - even though at other times we feel like curling up in the foetal position and DOING NOTHING - because why bother?  Sometimes (having just finished a PhD) I wonder what is was all for and more importantly, or more recently, so, what does that mean now - how can I use it etc. before I go?

    Re your isolation - this can be good and bad....
    It can be difficult if you are not in a position to drive but sometimes it can be a mindset thing.....i.e. I sometimes feel more isolated at home in a busy suburb in Sydney with traffic and people all around as opposed to being by myself in nature....
    but sites like this are so awesome because we can connect with others that really understand the ups and downs of what we are dealing with on a daily basis :)
  • Pennyrose
    Pennyrose Member Posts: 6

    Hi Elaine,

    Not sure if this is the spot to reply - so hope you get it.

    Thanks so much for your insight and a different way of looking at our situations - we are very lucky to have this site and this organization to share and care for each other

    It makes it so much easier.

    Thanks again so much.

    Pennyrose

  • ElaineG
    ElaineG Dragonfly Posts: 60
    Yes! And I agree!
    I think (and read very early on) that PSYCHOSOCIAL support is critical.....so quickly established a key group of girlfriends around me - all great but all busy....
    So, yes they are all "there" - but sometimes even the close ones - you don't want to call them or even answer their call because you feel flat - and they never quite get it - like we all do......
    it is the strangest thing sometimes - being isolated within our own prison - but that prison can be our mind - but how do we escape that prison - well all the "little things" that so many other women have mentioned - and sometimes "just doing it" even if we don't feel like it - eg a walk or a meditation (guided so you can have that third party to focus on!) etc. etc.

    but it's a MASSIVE ASK ISN'T IT ..... DAY IN DAY OUT!!
  • ElaineG
    ElaineG Dragonfly Posts: 60
    Oh and Pennyrose - sometimes these sites as great as they are can keep you feeling trapped in the smog - so again you have to be judicious with time management - and NEVER go on them in the evening.... :)
  • maggie001
    maggie001 Member Posts: 30
    Hi ElaineG, I love reading your posts and today they have really helped me turn my mindset around to one that is more positive. You have a lovely way of 'saying it like it is' with a positive spin - thanks!
    Maybe it's because I am feeling that the horrible toxicity of Afinitor is slowly leaching out of my body and I feel a quarter human , or maybe it's reading the inspirational, informative first hand  posts from so many ladies on here, but now I feel more empowered to ask my oncologist to change my treatment plan to Letrozole and ask for consideration of HIPEC (no harm in asking right?) .
    I am feeling a fighting spirit coming back into me after being bowled over and feeling defeated by my mbc diagnosis a month ago.
    I would never have thought we would need to be so invested in our treatment but I am more convinced than ever that we shouldn't just accept what is dished up to us. 
    So thanks everyone, very happy to have found you all and I hope you are all having good days and nights,
    cheers Judy
  • ElaineG
    ElaineG Dragonfly Posts: 60
    Thanks Judy!
    Yes we have to be proactive, take charge patients - AND find the 'right' oncologist for us - i.e. as individuals. For me that was 4 and the spark in that consultation was like a light from heaven - seriously - I now have totally, unswerving faith and confidence in her and I can now better manage all the other aspects like diet, exercise etc.
    We deserve the "best" treatment that is possibly available and although that differs for all of us, we as human beings have right to that treatment and it should NOT be a function of where we live....

    Re fighting spirit - again agree with that - it is one of attitude and inner being strength as opposed to fighting the cancer - because that's a joke - the cancer is part of US - so no, we cannot fight ourselves - so yes it is semantics but MBC is all about acceptance not fighting it.  The newer treatments will manage and contain it - and with less side effects and increased time before there is further disease progression as time goes by.

    So.... hopefully you will join us in Martin Place Friday Oct 13, 2017?!

    Exercise is key :)


  • maggie001
    maggie001 Member Posts: 30
    If I am still in Sydney on 13 October 2017 I will most definitely see you in Martin Place! I am originally from Perth and moved to Sydney for a work opportunity. I am now grappling with the question of whether to continue working or whether to give up work and focus on my health. If I do this, I will return to Perth where I have the support of family and close friends. If the path of the uncertain road ahead were clearer this question would be more easily answered. 
  • ElaineG
    ElaineG Dragonfly Posts: 60
    Yes - I understand.
    I've struggled recently having just finished a PhD - but full steam ahead (with awareness and balance) before I have to stop - be that tomorrow or in 30 years+ time!!
  • ElaineG
    ElaineG Dragonfly Posts: 60
    Oh and Maggie - I'm an old Perth girl - went to primary school (before Adelaide and Melb) then back to UWA and was there for the Americas Cup!
  • maggie001
    maggie001 Member Posts: 30
    We have so much in common ElaineG!! Both of my daughters went to UWA. Hope things are going well with you