Forum Discussion
Are you a member of the private Living With Metastatic Cancer group?
My name is Rachelle and I am based in Melbourne. I have MBC and joined the newly formed MBC Advisory Group to help BCNA, at this stage, with the revision of the Hope & Hurdles hardcopy guide and to inform BCNA of emerging issues affecting people with metastatic breast cancer.
I have also put my hand up to be a group leader of the private ‘living with metastatic breast cancer’ group to encourage people to share their experiences and support one another. I will also keep you informed of the advisory group activities and welcome your thoughts on the good things and gaps in care that you may experience in your local areas to share at committee meetings.I see that people are more active in this forum but I was hoping, along with BCNA, that we can transfer the activity to the private group, where people may feel more comfortable to be open with their posts/comments yet feel reassured that all posts remain private.
If you are not yet a member, please consider joining. If you are a member, perhaps you would like to post your story under the Stories announcement.
34 Replies
- @Jenny_BCNA could you please send @Maggs54 the link to join the living with mets group, thanks @kittykat.
- Hello, I have been diagnosed just over a month ago with secondary breast cancer. Bone Mets.
I am interested in hearing if other women have had similar side effects to the medication I have been put on (Verzenio and Letrozole). I was managing ok (just minor expected side effects) but now starting to feel dizziness in morning and chest tightening / discomfort.Can I please join the private group.
Thank you, - Hi @Ssbabel I have sent you an invitation for the MBC group. Kind regards
- Hi @Ssbabel ..., welcome to BCNA - So sorry to see you here, but you are in the right spot for support, tips and even laughs!
Feel free to put up a post outlining your story so far in Newly Diagnosed .... what type of BC you were diagnosed with and what treatment you’ve had .... then chat on the Mets group about more private stuff. Xx
Personally I found that it mucked with my BRAIN more than anything else! And sometimes that is very hard to control, as it has a mind of its own! 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 always 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
For your 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, 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
Shoot me a message if I can help you in any way. We have a great bunch of people here who ‘get it’ .... so you can raise any issue, ask any question and get an honest answer from someone who’s been thru it xx
take care - @Riki_BCNA I'd like an invitation too as I also keep going around in circles.
- Hello @Georgie17 and welcome. I haven't seen your request in the group but will send you an invite.
- Hello, I have requested to join this group but not sure that my request was accepted.
- Hi Everyone access to the MBC private group should be fine now. it has been checked. Please let us know if you have any further problems.
- @Riki_BCNA @RachelleRachelle
Hi. After I posted this comment I became a member so I thought somebody from BCNA helped me. Sorry to let you know late.
but it did took a while. - Hello @Benmamy and @HD4873 I have sent you an invitation to join the private MBC group. I will follow up on this tomorrow @RachelleRachelle
