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Welcome to New Members

Mez_BCNAMez_BCNA VictoriaAdministrator, Staff, Member, Moderator Posts: 133
edited September 8 in General discussion


A very warm welcome
to our newest members who have come on board since I commenced my Member Support role three weeks ago:

@Cc101 @Yazzy @Lozza8 @Teabaglady @Clarke @Molly3 @Angel67 @Shovelbottom @Meex05 @AJDHN @Fionab @WonderRis @Lindryc @cramer1988 @ddevi @positivespririut1 @Whitt @HinterlandSian @Chantal282923 @PaulaBlack @Jen2008 @Suw @Melzee @Miss_G_ @moosa_K @priscilla66 @chrjoh2 @Tamblin @LBUSH @Panetone @Tasman @Rubylea @Tobes1 @Wegotthis @88nyc @Ashsammilodezzzi @Shazzz @maryann_n @Ber @Challenger1 @edwinaw @mryanne @ladyhawk @Aangela @taniajean @Cathnat @Brondocs @UCGConferences @Angelaa @Emily_BCNA @Banksia @Orlando @Zuko @Kath68 @Jakk @Justine1971 @Willowmum

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 within a private setting.

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

Navigating the online community

Community Guidelines

My Journey Online Tool

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.

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.

P.S I aim to make this a 'weekly' post

P.P.S I am still working towards return of the 'Friday update'

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Comments

  • arpiearpie Mid North Coast, NSWMember Posts: 5,570
    edited September 3

    Welcome to the club no-one really wants to join ....  We are happy that you found us - as we were in the same boat not that long ago. The members here are just wonderful and will provide you with as much support as you need.  Just ask away!

    If you live in Regional/Rural areas - you should 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 on your first appointments - and each specialist, too.  After that, it should be smooth going. The NSW one is here:

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

    There is a webcast in Mid Sept on the cost of surgery/ongoing treatment - you may like to attend!

    https://onlinenetwork.bcna.org.au/discussion/23739/managing-the-cost-of-breast-cancer-webcast-tips-and-resources#latest

    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 (specially in the 'wait times' between discovery & diagnosis, diagnosis & surgery, surgery & pathology results  . .... Try & get back into your hobbies (as you are able to) or take up a new one - even more so now with Covid as we can’t get together with buddies as readily as before.  

    When you have some time ... check out the blog by a female British Breast Cancer Surgeon who went on to develop Breast Cancer herself, with recurrence.  She was amazed at just how much it changed her life, both mentally and physically ... and validates all our own ‘concerns, 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/

    Some more info on some of the threads on the forum - we even manage to have a couple of laughs now & then! ;) 

    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 ...  I have a rather 'dark' sense of humour, so we have a more risque thread for those ones!  ;) 
    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

    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/16442/prep-for-surgery/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 with your ongoing surgery & treatment xx

  • Julez1958Julez1958 SydneyMember Posts: 187
    Hi Mez
    This is a great idea.
    I know when I first joined I was a “ lurker” and took a while to post a comment/ question.
    To all the new members, it can all seem pretty overwhelming at first and you will most likely be in shock, but there is a LOT of useful information on this website, including looking at the various threads on here.
    And don’t be hesitant to post a question, we have all been on the journey in one way or another and no question is ever too trivial or silly.

  • jennyssjennyss Western NSWMember Posts: 1,286
    Dear @Cc101 @Yazzy @Lozza8 @Teabaglady @Clarke @Molly3 @Angel67 @Shovelbottom @Meex05 @AJDHN @Fionab @WonderRis @Lindryc @cramer1988 @ddevi @positivespririut1 @Whitt @HinterlandSian @Chantal282923 @PaulaBlack @Jen2008 @Suw @Melzee @Miss_G_ @moosa_K @priscilla66 @chrjoh2 @Tamblin @LBUSH @Panetone @Tasman @Rubylea @Tobes1 @Wegotthis @88nyc @Ashsammilodezzzi @Shazzz @maryann_n @Ber @Challenger1 @edwinaw @mryanne @ladyhawk @Aangela @taniajean @Cathnat @Brondocs @UCGConferences @Angelaa @Emily_BCNA @Banksia @Orlando @Zuko @Kath68 @Jakk @Justine1971 @Willowmum,

    I have been part of this network since January 2018. You will probably have different questions and worries as your treatment rolls on. Come here for laughs and sympathy and information and understanding.

    from jennyss in Western NSW
  • BrondocsBrondocs Member Posts: 11

    Hello, I am a new member and appreciate so much hearing everyone’s stories. 

    In May 2018, I was at work and as I brushed some fluff off my shirt I felt a  golf ball sized lump on my chest. This turned out to be triple negative breast cancer and the lump had literally popped up overnight. I know this because I am small breasted and would have noticed if it had been there before. Within two weeks I was in surgery for a lumpectomy which was the easiest part of the whole process. The cancer had not spread to my lymph glands so I felt lucky.

    I then started 6 months of chemo. For the first four months of the heavy going chemo I was sicker than I ever imagined from the side effects. I ended up staying in hospital each time.

    But after that, when I went to once a week lighter chemo, I was managing pretty well. I was also part of an exercise physio research program which really helped me feel as If I had one thing to help me through. Then I had a month of radiotherapy – which was fine.

    THEN I had two years of great health until February this year when I developed a recurrent cough. I thought it was some sort of asthma, so I went to my GP who send me for a chest Xray.

    I was completely shocked to find out I had metastatic cancer all through my lungs, in my brain and in my neck.

    I had a week’s radiotherapy on my brain which had horrible side effects ( nausea, headaches, hair loss) combined with starting the heavy going chemo for the next 6 months. Again, I had terrible side effects – mainly trouble breathing, dizziness, exhaustion and clotting in my arms for the first four months, so spend more time back in hospital.

    My oncologist has moved me now onto an oral chemotherapy- capecitabine. I was wondering if anyone else was taking this and if the exhaustion from the 6 months of strong chemo infusions will dissipate or persist ? I haven’t had any additional side effects so far. My insomnia is also persisting and quite a few of the other side effects from the infusions.

    Any advice or info much appreciated !


     

  • June1952June1952 Regional VictoriaMember Posts: 1,288
    Hello @Brondocs.  Welcome to the site.  At the right hand panel you will see a list of groups - there is a group specifically for those with metastatic cancer.  Please do also join that group as they will know exactly what you are going through.  Thinking of you.  💖
  • arpiearpie Mid North Coast, NSWMember Posts: 5,570
    Hi @Brondocs - I am so sorry to hear of your Mets diagnosis.  :(  Gosh, you've been dealt a cruel set of cards. 

    As @June1952 says, You may like to join the Mets group, where those with more dedicated responses may be able to help you, in private xx    @Riki_BCNA should be able to help you join up.

    I'll also ask @Mez_BCNA to move your post into it's own segment in the Metastatic Breast Cancer category, so that you'll get more dedicated Mets replies xx

    I hope your exhaustion dissipates ....... My Hubby was diagnosed with Mets in January & is on Capecitabine and he hasn't been experiencing any real exhaustion (tho his Oxaliplatin infusion can make him drowsy) - Capecitabine can have some pretty 'ordinary' side effects in itself, so keep an eye out for flaking/peeling hands & feet (pawpaw ointment has helped control his.)  I think insomnia would be top of the list with any chemo.  :(  Hubby is up 2-3 times a night, sometimes for an hour or more at a time. :( 

    Take care, look after yourself & all the best with your ongoing treatment xx
  • BrondocsBrondocs Member Posts: 11
    Thanks so much for your comments - I thought this was the Metsgroup but I seem to have got it wrong !
  • Carissa_BCNACarissa_BCNA Administrator, Staff, Member, Moderator Posts: 138
    Hi @Brondocs

    The living with metastatic group can be found here https://onlinenetwork.bcna.org.au/group/2-living-with-metastatic-breast-cancer. This is a private group so you will need to apply and one of the BCNA mods will accept you. If you have any questions, please let me know.

    @Carissa_BCNA
  • Mez_BCNAMez_BCNA VictoriaAdministrator, Staff, Member, Moderator Posts: 133
    edited September 8
    Hi @Brondocs, while you have already received wonderful support from members @June1952 and @arpie - I have also copied your post to the Metastatic breast cancer category discussions:

    https://onlinenetwork.bcna.org.au/discussion/23765/new-member-question-re-oral-chemotherapy-capecitabine#latest

    Please feel free to reach out if you have any trouble navigating the Online Network.

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