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Just felt like blogging...

CelbirdCelbird Member Posts: 680
edited September 2016 in Metastatic breast cancer

Today I'm having a blue day...feeling very much alone on this journey :-(. I am yet to meet anyone like me (a young 44 yr old) in Adelaide with secondary BC. And while this is a good thing (hopefully there aren't too many of us around in Adelaide), it saddens me to know that at the moment I am on this journey 'alone'. While I have some lovely friends who can relate to all things early BC, secondary BC is certainly a different ball game altogether. Don't get me wrong, I have some lovely online friends with secondary BC who are a great support, however it would be wonderful to meet up with someone else in Adelaide in the same boat as me. So today I have put the feelers out to various support groups to see who's out there. So far I'm yet to find a support group in Adelaide specifically for women with secondary BC, so you never know, maybe I just have to set one up! :-)

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Comments

  • FranPFranP Howqua Inlet. VicMember Posts: 396
    edited March 2015

    Hey ladfy just read your message you hang in girl you are not alone, i understand it would be soo different with secondary, and i am still pushing the manda moo project to get more research funding happening for all you beautiful ladies, and i have a petition going and have close to 1000 signatures already and hope to get heaps more at my mini field of women, 

    then i will haand it to Sophie Mirabella's office , and we will see what happens Amanda gave me permission to quote from her letters to her children so it has a very good impact. keep you posted. 

    maybe ask Di at BCNA if she has contact names in SA with 2ndry she would have an idea? worth a try. take care girl and it is normal to have blue down days. xxxxxFran

  • FranPFranP Howqua Inlet. VicMember Posts: 396
    edited March 2015

    Hey ladfy just read your message you hang in girl you are not alone, i understand it would be soo different with secondary, and i am still pushing the manda moo project to get more research funding happening for all you beautiful ladies, and i have a petition going and have close to 1000 signatures already and hope to get heaps more at my mini field of women, 

    then i will haand it to Sophie Mirabella's office , and we will see what happens Amanda gave me permission to quote from her letters to her children so it has a very good impact. keep you posted. 

    maybe ask Di at BCNA if she has contact names in SA with 2ndry she would have an idea? worth a try. take care girl and it is normal to have blue down days. xxxxxFran

  • PamelamaryPamelamary Member Posts: 240
    edited March 2015

    Dear Celeste,

    As an 'older" ABC woman from Melbourne, I can only send you warm wishes! A support group? You would be just the person to do it!........ Pam

  • PamelamaryPamelamary Member Posts: 240
    edited March 2015

    Dear Celeste,

    As an 'older" ABC woman from Melbourne, I can only send you warm wishes! A support group? You would be just the person to do it!........ Pam

  • Leonie MooreLeonie Moore Member Posts: 1,470
    edited March 2015

    Hi Celeste,  I feel your pain but I know that there will be someone similar to yourself.  My good friend (met at Look Good Feel Better back in 2007).  Our first diagnosis was very different but about the same time.  Then I was trained as a CLO (Community Liaison Officer with BCNA) in August 2010 whilst my friend trained in Sept 2010.  My friend was then diagnosed with secondary bc in her heart in November 2010 and I was diagnosed with mets in lymph node in December 2010.  We do so much together - Pidgeon Pairs.  Even though we don't have too much energy by ourselves, as a Team we achieve quite a bit for BCNA.  I am so glad to "have" her.  I hope you find your "Pidgeon Sister"  My friend is quite unique.  We have looked far and wide to find someone who has secondaries in the heart.  We keep looking and this is what you will do. Good luck. XLeonie

  • pisces_taspisces_tas Member Posts: 474
    edited March 2015

    Hi Celeste,

     Hope the " blue day " is over. Thanks for the comment. You are a source of strength to many I feel. We all need  a shoulder to lean on at times. I would love to catch up if I pass through to Adelaide in the future.

     I may be visiting my old friend in WA again in 2013, so could  stop over in Adelaide. My mother was from SA and I have been there when younger,  quite a few xmas times. I love the hot, dry weather of SA and longer summers ! Summer is too short in Tasmania, though the N. E. is temperate, maritime, and winters are pretty mild here.

    I will be going with another friend who survived a brain aneurysm, a few years ago. She lives in Melbourne.

    Life can be unpredictable for sure. I am reminded daily.. to try and take each moment as it comes. Acceptance of things " as they are "  can be difficult. 

    I have thought about things over the years and come to believe:

     "We ARE alone, but, we have each other." I do hope you can connect with another young person with ABC.

    Sending some LOVE, Kathy. ooxx.

     

  • pisces_taspisces_tas Member Posts: 474
    edited March 2015

    Hi Celeste,

     Hope the " blue day " is over. Thanks for the comment. You are a source of strength to many I feel. We all need  a shoulder to lean on at times. I would love to catch up if I pass through to Adelaide in the future.

     I may be visiting my old friend in WA again in 2013, so could  stop over in Adelaide. My mother was from SA and I have been there when younger,  quite a few xmas times. I love the hot, dry weather of SA and longer summers ! Summer is too short in Tasmania, though the N. E. is temperate, maritime, and winters are pretty mild here.

    I will be going with another friend who survived a brain aneurysm, a few years ago. She lives in Melbourne.

    Life can be unpredictable for sure. I am reminded daily.. to try and take each moment as it comes. Acceptance of things " as they are "  can be difficult. 

    I have thought about things over the years and come to believe:

     "We ARE alone, but, we have each other." I do hope you can connect with another young person with ABC.

    Sending some LOVE, Kathy. ooxx.

     

  • danielle ghilardidanielle ghilardi Member Posts: 204
    edited March 2015
    Hey hunny, your not alone! Normally I would not do this but if you are on fb their is a secret group for young women with bc and their are quite a few of the women with secondaries. I really think you may benefit from talking with some of these women. If your interested let me know so I can get you added. A lot of the women are also involved with BCNA it's a shame your all having troubles connecting up. Danielle. X
  • CelbirdCelbird Member Posts: 680
    edited March 2015

    Thank you Fran for your comments. It sounds like you are doing a heap of work to get more research funding for ABC which is wonderful news...thank you! Yes, you're right, blue days are normal, and today I am feeling much better :) x

     

  • CelbirdCelbird Member Posts: 680
    edited March 2015

    Hi Pam, thank for your warm wishes! Yes, maybe setting up an ABC support group is the way to go...will have to think about that some more! Take care, Celeste ?

  • CelbirdCelbird Member Posts: 680
    edited March 2015

    Hi Amy, thanks for your post. You've given me some good ideas about approaching my oncologst and breast care nurse about connecting me with other 'young' ladies with secondaries, so that's what I'm going to do. It sounds like a great idea, so it's worth a try. Yes, please send me a line when you're next in Adelaide, would love to meet you! I have a sister who will probably be moving to Canberra in the first half of next year, so perhaps I will come for a visit and look you up! Thanks again, take care Celeste?

  • CelbirdCelbird Member Posts: 680
    edited March 2015

    Hi Leonie, yes I believe I can't be the only female 40 something in Adelaide with ABC...surely not! lol! It would be lovely to find a "pigeon sister" like you say, and hopefully one day this will happen. I'm so pleased for you that you have a special friend that can relate to your situation, and that you spend enjoyable time with. Take care, Celeste? 

  • CelbirdCelbird Member Posts: 680
    edited March 2015

    Hi Kathy, thanks for your post. Yes, you are right, we all need a shoulder to lean on at times, but we also need to be understood by someone who can truly relate to the challenges of ABC. It's great to hear that you travel around a bit. Yes, if you come to Adelaide perhaps you can come to an Adelaide Breast Cancer Friendship Group get-together? That'd be great! Take care, Celeste ?

  • CelbirdCelbird Member Posts: 680
    edited March 2015

    Hi Danielle, thanks for you post. Yes, would love to get in touch with the FB group you mentioned...perhaps there are some Adelaideans on there, lol! Just let me know what you need me to do. Thanks again, Celeste?

  • danielle ghilardidanielle ghilardi Member Posts: 204
    edited March 2015
    If you add me on fb Danielle Ghilardi (Werner) I am able to add you to the group. Yes there are ladies from Adelaide :)) I hope it helps you a little more also. Danielle x
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