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Welcome New Members

Mez_BCNAMez_BCNA VictoriaAdministrator, Staff, Member, Moderator Posts: 179
edited November 2021 in General discussion


A very warm welcome to our newest members this past week:

@Alyj27 @mago @Magenta @Linda87 @nita @Libélula

You have found your way to Breast Cancer Network Australia’s (BCNA’s) Online Network. This is a forum where you are not alone and can engage with generous members who provide meaningful support to each other. You can share as much or as little as you feel comfortable with to other members. Please explore our various Groups for members who are looking for greater peer-to-peer support.   

The following links may also be helpful in getting you started:  

Our long-time members (newbies too!) are a wealth of information regarding the useful discussion topics and information available through BCNA’s Online Network, therefore please do not hesitate to post your questions.  You have the option to add details about yourself to your ‘profile’ and if you would like more targeted member responses, you may like to add where you live ( eg. Sydney, Melbourne, regional Victoria etc).  

If you need help navigating the Online Network please message myself @Mez_BCNA or one of our other moderators. Alternatively, phone BCNA's Helpline 1800 500 258 Monday to Friday 9 am - 5 pm AEST. 

Comments

  • LibélulaLibélula Member Posts: 2
    Hello thank you for the welcome 😊 Not a group I ever thought I would be part of but so good that this forum exists. Connecting with other people who are on a similar journey helps alleviate some of the feelings of fear and loneliness. I was diagnosed in pregnancy and so a lot of my difficult emotions have been around grieving the loss of the birth I wanted and the way I want to parent and the way I thought this period of my life would be like...sadly a lot less joy and a lot more sadness and anxiety and being apart from bub for appointments and chemo and rest from effects of chemo etc. Just wondering if there are any other members who have a similar story who would be keen to chat?
  • arpiearpie Mid North Coast, NSWMember Posts: 5,726
    edited October 2021
    So sorry to see you 'join the club' that no-one really wants to join, and particularly hard, when diagnosed whilst pregnant.  That's really tough xx   @"Libélula":( 

    We have a group that is specially for 'Young Women' that you may like to join - where abouts are you?  You can add your town or region to your profile.  We may have members living nearby who could put you onto existing services & (covid allowing) even meet up for a coffee & a chat when safe to do so.  @Mez_BCNA - could you please arrange this?

    You will 'gather' HEAPS of paperwork - bloods, reports, Xrays etc - so find yourself a BIG BOX to put them all in - cos an A4 expanding file just won't be big enough!  This way, everything is in the one place & if you need to find it later - it should be there.

    If you live in Regional/Rural areas - you will be eligible for IPTAAS assistance with travel & accomodation costs (the name may vary from state to state.) Ask your GP or Specialist about it, as they will have to sign off your first appointments.  The NSW one is here:

    https://iptaas.enable.health.nsw.gov.au/

    If you can, take someone with you to your appointments for support - as it can be daunting sitting there alone.  A 2nd set of ears also picks up points raised that you may have missed - and ask relevant questions too (as did my Sister in Law with me.) Also, consider recording your meetings on your mobile phone - so that you can go over it again later, if you have to, to query a statement, or just to have as a record.

    Your whole world is turned upside down in a millisecond, as you navigate unknown areas of our health system! It is almost a conveyor belt! First you do this, then this, then go there and do that, then come back here and do this .... and it may take a year or two for your life to settle down.

    It is totally 100% ok to skip between anger, denial, sadness - but if you find the sadness is overwhelming you, please seek professional help! Your GP may be able to refer you to a psychologist ... or your local Breast Cancer Centre May have help there .... where you are more likely to find a bc specific psychologist who is more familiar with BC issues.  Just talking about it openly and sharing it with a professional should be able to give you coping mechanisms ... 

    You will make new friends who will support you (specially on this forum) and may lose some old ones, who just do not understand what you are going thru. Most of us here, have found wonderful friends within the group and have even met up with them in ‘real life’ before this Covid thing and since - hopefully they'll get on top of it soon & our lives return to a 'new normal'! 

    If there is anything you want to discuss in a more private manner, you can message a member (or a group of members) and chat in total privacy. 

    Personally I found that it mucked with my BRAIN more than anything else!  And that is very hard to control, as it has a mind of its own! I found that keeping BUSY, doing things is the secret . .... get back into your hobbies or take up a new one - even more so now with Covid as we can’t get together with buddies as readily as before.  

    Try & keep your sense of humour 'up there' - we have a really good 'funnies page' (called Friday Funnies, but we add them every day!!)  Just click on the link to add pics and posts ... 
    https://onlinenetwork.bcna.org.au/discussion/19116/friday-funnies#latest
    If you are into arts & crafts, we have a 'Creative Corner' 
    https://onlinenetwork.bcna.org.au/discussion/14979/creative-corner#latest
     and if into your garden, a Gardening post as well!! 
    https://onlinenetwork.bcna.org.au/discussion/comment/186078#Comment_186078
    And we now have a Fishing post, as that is one of my passions!
    https://onlinenetwork.bcna.org.au/discussion/19494/fishing-brag-pics

    If you have 'fur kids' - put their pic here & describe their funny antics ...   https://onlinenetwork.bcna.org.au/discussion/comment/92526#Comment_92526

    We even have a funny Xmas page .... feel free to add any that you’ve seen!
    https://onlinenetwork.bcna.org.au/discussion/20086/christmas-funnies-put-them-up-here-for-a-laugh#latest


    When you have some time ... check out the blog by a female British Breast Surgeon who went on to develop Breast Cancer, with recurrence.  She was amazed at just how much it changed her life, both mentally and physically ... and validates all our own ‘aches and pains’ ... if your Onc doesn’t believe you when you discuss side effects - get THEM to read this too!  

    http://liz.oriordan.co.uk/

    Try not to use Dr Google too much (difficult tho it is) as there is just so much conflicting information out there (and much of it is REALLY OLD & OUT OF DATE), and every BC case is totally 'unique' and it will only scare the pants off you!

    If you haven't had your surgery yet, we have some posts here on what to take with you to hospital, to make it 'easier' on you.  
    https://onlinenetwork.bcna.org.au/discussion/20232/hospital-bag-what-to-pack/p1

    And for your annual checkups, here are some ‘tick sheets’ to help you put your questions together for your medical team.  (Make sure you click on the documents at the BOTTOM of the post, as the others are only sample pages.)
    https://onlinenetwork.bcna.org.au/discussion/21973/questions-to-ask-post-surgery-of-yourself-to-your-specialists-tick-sheets-self-assessment/p1

    Take care, and all the best for your ongoing treatment xx

  • Mez_BCNAMez_BCNA VictoriaAdministrator, Staff, Member, Moderator Posts: 179
    Hi @Libélula, I have added you to the young women's group :)

    Also, here is a useful link to BCNA's website that provides information, downloads, and resources directly related to young women with breast cancer:
    https://www.bcna.org.au/understanding-breast-cancer/breast-cancer-in-young-women/

    The following BCNA podcasts may be of interest as well:  Episode 15: Young women and breast cancer  Episode 16: Young women and triple negative breast cancer  Episode 17: Young women and breast cancer (Ruth)

    You can also find services and support in your area, visit BCNA’s online service finder
  • LibélulaLibélula Member Posts: 2
    Hi Arpie and Mez. Thank you so much for sharing your advice and insights and all the resources to look into. I look forward to delving in, albeit with a little trepidation! Lots of info and lots of triggers. I guess that's part of the process though. Your help is much appreciated.
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