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Chevvy
Member Posts: 39 ✭
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 .
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Comments
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@Chevvy - I am so sorry to hear of your recent diagnosis xx I wish you all the best for your ongoing treatment and recovery xx
I hope you don't leave the group and am sorry the new format is causing anxiety with you ....
Please just try clicking on the Discussions link - that's the only one you really need to click on (or Groups if you are in any of the private groups.)
All the locked announcements are still up the top (same as before) and then the most recent posts are immediately below them (same as before.) Everything else remains the same - the messages 'envelope' will show when you get messages ... and the 'bell' shows any notifications on threads (and messages) that you've already replied to. You can start a new discussion there as well ...
Take care, all the best for your ongoing treatment xx. I hope you have supportive friends & family helping you out at this time xx Wishing you a better 2023 xx
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@Chevvy
I am sad for you that your BC battle continues....it's a so and so!
The new look forum has frustrated you but please persist! I'm an older person who didn't grow up with technology and calculators......
As @afraser mentioned above you may find the site easier to navigate on a laptop
The changeover happened when Telstra knocked off my landline for 5 days and internet for 12 days! Only had the smartphone and had to settle into the new format.
We're here to help
Take care
https://onlinenetwork.bcna.org.au/discussion/25153/new-online-network-homepage-navigation-video0 -
Hi @Chevvy
So sorry about your recent bad news.
I use a smartphone most times to access the online forum and it does take a bit of getting used to the new format but I have managed it despite being a 64 year old relative IT “ dinosaur”
This is how I do it -
1. click “ start here”
2. Sign in
3. Click either “discussions “ which takes you to the general discussions if you scroll down below the BCNA announcements
4. You can then either respond to other people’s posts or start your own discussion .
5.I am also a member of a couple of private groups and I am taken to them by clicking “ groups”
Take care 🌺1 -
Hi @Chevvy I think the timing of the new look and trying to navigate the forum now has been bad timing, especially for those wanting to reach out in their time of need, I can see it would be very frustrating indeed at this time for you, and many health professionals and support services are closed.
Please try to stick around as there are the stalwart members who will try as best we can to support you. @Afraser @iserbrown @arpie and @Julez1958 have made some good suggestions.
So sorry you are finding yourself going through this for the 3rd time. It really isn't fair, but we are here to support you over this very trying time. Best wishes.xx
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Hello @Chevvy. I hope that you have managed to relax a bit and come back to have a go at navigating the site. As you said, you've always had support and nothing has changed in that regard. I did send you a PM so I hope you found that (look at the top where messages have always been).
Mez put up a video to assist members but I did not need to use that as once she told me about the Discussions being in the top blue banner I managed to find my way around. I guess they have to keep up with the times and we all use different methods of accessing the site (me ? and old desktop !).
We are having a hot spell here after so many months of cold weather so the shock made me get a heap of winter woolies from the bed - washed and dry in the one day. Oh, the small things which cheer us up !
You are once again going through a bad time and we are all here to support you. Please be in touch again. Thinking of you. 💖💖0 -
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 NSW1 -
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.
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@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. MXX2 -
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!0
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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 … 🥰xo1
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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.
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