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I guess there are times we all need to reach out, this online forum has always provided me with so much hope, help and inspiration and I thank the women that have reached out to me over the past 2 years to provide that …. now, just trying to navigate through this new set up has caused so much anxiety that I will say my goodbyes and not use it any more. Who in gods name decided that this was a good idea … we are dealing with so much shit already that this forum that was once so simple and easy to reach out too has become a navigational nightmare .. I’m on my 2nd fight with bc and whilst doing this 2nd fight, whilst still receiving treatment from the first fight, I now find out that I have triple negative cells in the other breast… so prepare for a 3rd fight… and all whilst still recovering from a double masectomy due to the 2nd fight… I get online desperately needing someone to tell me it’s going to be okay and spend 20 minutes just trying to find a “spot online” in this new website that I can even get at to write … shame on you for making life more difficult … life sucks enough as it is right now , than you adding to it by us having to have a degree in IT just to be able to navigate our way to get help and support is absolutely beyond disheartening… you have just removed the lifeline of hope that so many of us cling too … and that is … the ease too which we used to be able to write, express, and receive support … I have no idea how to get back to this page, I have no idea if this or where this will even be posted … what I can tell you is … simplicity in times of adversity is what people need, you just took that from so many of us .
17 Replies
- Also, click on the small envelope next to your profile picture at the top of the screen (where you log out) and then on the little square with the pencil and that gives you the old format message screen where you put in the name of the recipient.
- @Cath62
Just click on @Chevvy above and it will go to her profile and you'll see a pink box with the word message, click on it and you have the opportunity to write and send a message
Take care - @Chevvy I have been trying to send you a private message but no success. I will try to work it out over the next few days. My thoughts are with you 💐
- The new look and navigating certainly isn't user friendly, despite have 3 aging smiling women looking at a computer screen together. I am tech savvy, but I still feel the new look is not a plus for the service users. Why make it more difficult to navigate.
@Chevvy I have sent you a private message. - If I reply thru email I can get in but it’s an old email and not logged on TonyaM.. doesn’t even have a direct reply … but my thanks to everyone for all the kind words .. I did just want to persevere long enough to find a way in to say thanku , cause I do appreciate you lovely ladies taking the time to write. But I’ve done 2 fights already, and a bilateral masectomy, now triple negative cells … i just can’t be bothered fighting to learn how to use a new format on here when it used to be so easy to reach out too. I will feel really bad not being able to reply if I can’t access into this site again so please don’t write. Many thanks for the support the past few years when the first fight began, I wish I had better I.T skills so I could understand how to navigate this page better and not feel like I’m saying goodbye to such a great support network. Maybe once I’m stronger I’ll try again. I hope 2023 brings beautiful things for all of you … 🥰xo
- Hi @Chevvy, I’m so sorry you are going through this bc shitshow again.And yes, my sentiments exactly- who thought it’d be a good idea to change the online network format just before Christmas when staff would be taking a break.I’m just going to call it like I see it-wrong,wrong,wrong!
- Oh @Chevvy I am so sorry to hear your news. Please stay with us. I hope the advice others have given you helps. Sending lots of love to you and a big virtual hug.
- @chevvy I've been in a similar situation and can feel your despair at not being able to run, crawl, fly or pray your way away from this wretched disease.
Regarding the new format, if you turn whatever device you are using to a landscape view, you can see some features you will be familiar with. God knows why the developers thought that was a good idea when most other platforms favour portrait, but there we are.
Hang in there chick. I'd love to be able to tell you everything will be OK, but we both know that is not something anyone can promise. Most of my fingers and toes are involuntarily crossed, but I'll double down and wish you the best.
Stay with us. MXX - Hi @Chevvy, I am sorry to hear of your recurrence of breast cancer and hope you have a good support network around you. I will PM you a couple of simple screenshots that could make all the difference to your navigation of the Online Network. Apologies for any anxiety the changes have caused you.
The BCNA Helpline will be back next week (Tues) 3rd January if you need to chat with someone.
In the meantime please, the below services are available:Cancer Council 13 11 20 (Please be aware that they are working reduced hours during this time)
Lifeline 13 11 14 is available 24 hours a day 7 days a week
Beyond Blue 1300 224 636 also available 24 hours a day 7 days a week
If you would like to talk with an Aboriginal or Torres Strait Islander Crisis Supporter, 13YARN is available 24 hours a day 7 days a week on 13 92 76.
- Dear @Chevvy,
I don't like the new format either, but it is already getting a bit more familiar to me. I too have found the network very supportive and helpful. Now I like to give back, even if it is only wishing members happy birthday, or making the occasional reply. Please hang in with the new format and don't leave the network.
from jennyss in Western NSW
