Hi all, Welcome to all our new members this week (there's a lot of you! :). Hope you enjoy the network and do jump in when you're ready. To help you out, I thought I'd start this update with some ideas on how you can get the most out of the network: Getting started If you need help finding your way around, the best place to start is the Help page. There you can find some useful links and also download a simple user guide. If you want to read what other network members are up to, go to the Latest Network Posts page. To find that, go to the network homepage and scroll down to the tabs and you'll see it there next to the BCNA blog (or you can cheat and bookmark this link: http://www.bcna.org.au/node/all/blog/network ). Just be warned, you can spend a lot of time browsing around the posts, so be prepared! :) Joining or creating a group is a great way to talk to others with similar interests. To find existing groups, go to the Group Search page. Anyone can create a group so if you don't find what you need, you're welcome to start a new one (just click on the 'create a group' link at the bottom of the search page and fill in the form). If you create a new group, we'd really like you to tell others about it by making a post in the Online group announcements blog. If you want others to find you on searches, you'll need to make some of your profile information 'public' (the search engine doesn't search on fields set to private). To find out more about how to do that, read the tip on Privacy settings. Site updates As we announced last week, we've made some updates to the Network. A lot of these were fine-tuning the way the network works, but some you'll notice are: We've moved your publication subscriptions (the Beacon and The Inside Story) into a separate screen with your contact details. You can also use this screen to update your contact details with BCNA if they change (go to profile > edit > publications). The User guide has been updated, so have a look at that if you want to know more (it's on the help page). To help you find others of similar experience, we've made Breast Cancer Experience a required field on registration. For some members who didn't select an option for that first time around, you might notice it shows up now as 'please select'. Just choose the appropriate option from the drop-down box and save your profile. Group facilitators can now choose whether all members can post, or just the facilitator. This is for groups that only have one spokesperson. We'd suggest you make a note in your group 'our story' if you decide to use this function, so that new members know. That's it for now. Have fun and just ask if you need a hand with anything. Di

Hi Di I have been playing with the new site, but the map that is there is of an outlying suburb..Blackstone Heights- can it be altered to show Launceston city or second choice would be Kings Meadows suburb? (Where we meet) The info I put on our original page is ok for the new one, so I have tried to duplicate it across. Cheers, and I hope your =holiday was great, Mandy

I have spent several hours, joining and navigating my way around this site and I've even posted a reply to someone which seems to have posted successfully however I cannot ask my own question on the members blog. I have tried "joining" the network by using the link and get a big pink "ACCESS DENIED" message with no explanation or reason as to why I can't join the network or the blog or whatever it is that may put me in contact with other women having a similar experience. I'm asking for help however there's every probability that I won't be able to access your answers if you post them. For all the great things BCNA does, this has been a pretty frustrating experience I must say. Sorry to be so IT inept Galaxy Sue

Hi Galaxy Sue and welcome! Hope you find the site useful once you get going with it. You're off to a good start -- you've registered and set up your profile so you're in! After that, just have a browse around and either make a post of your own in your blog, or leave some comments on other people's (just exactly as you've done). There isn't a 'members blog' as such for you to join (the whole site is like a giant members blog! :). Did you find the Help page? Have a look there if you haven't, it has a simple user guide that you can download, with tips on finding your way around. If you just want to see what every one is posting, then go to the All Posts page. You can scroll down and click through the different pages at the bottom. Hope that helps -- the site works a bit like Facebook if you've ever used that. If you want to chat more, then I'd be really happy to talk to you by phone if you'd like. Just call me in the office ( 03 9805 2582) or let me know when you're free and I can call you.

It just takes a wee while to get used to, Galaxy Sue, and Di is the guru!

Di_BCNA

Member

15 years ago

Online network news

Hi all,

Welcome to all our new members this week (there's a lot of you! :). Hope you enjoy the network and do jump in when you're ready. To help you out, I thought I'd start this update with some ideas on how you can get the most out of the network:

Getting started

If you need help finding your way around, the best place to start is the Help page. There you can find some useful links and also download a simple user guide.
If you want to read what other network members are up to, go to the Latest Network Posts page. To find that, go to the network homepage and scroll down to the tabs and you'll see it there next to the BCNA blog (or you can cheat and bookmark this link: http://www.bcna.org.au/node/all/blog/network ). Just be warned, you can spend a lot of time browsing around the posts, so be prepared! :)
Joining or creating a group is a great way to talk to others with similar interests. To find existing groups, go to the Group Search page. Anyone can create a group so if you don't find what you need, you're welcome to start a new one (just click on the 'create a group' link at the bottom of the search page and fill in the form).
If you create a new group, we'd really like you to tell others about it by making a post in the Online group announcements blog.
If you want others to find you on searches, you'll need to make some of your profile information 'public' (the search engine doesn't search on fields set to private). To find out more about how to do that, read the tip on Privacy settings.

Site updates

As we announced last week, we've made some updates to the Network. A lot of these were fine-tuning the way the network works, but some you'll notice are:

We've moved your publication subscriptions (the Beacon and The Inside Story) into a separate screen with your contact details. You can also use this screen to update your contact details with BCNA if they change (go to profile > edit > publications). The User guide has been updated, so have a look at that if you want to know more (it's on the help page).
To help you find others of similar experience, we've made Breast Cancer Experience a required field on registration. For some members who didn't select an option for that first time around, you might notice it shows up now as 'please select'. Just choose the appropriate option from the drop-down box and save your profile.
Group facilitators can now choose whether all members can post, or just the facilitator. This is for groups that only have one spokesperson. We'd suggest you make a note in your group 'our story' if you decide to use this function, so that new members know.

That's it for now. Have fun and just ask if you need a hand with anything.

13 Replies

Chrisy
Member
14 years ago
Thanks for your reply Suz, I have come a long way, finished Chemo 1st December 2011 now on Radiotherapy day doses have done 9 out of the 25 still some side effects from Chemo, Muscle and Joint pain but am doing well hair can't come back fast enough and the 12 kilo extra weight from steroids is still hanging around. I am very interested in any research mine is breast cancer with hormonal receptors. My concern is for my 3 daughters who have breast cancer on both sides of the family resulting in a short life for their Aunts. The more we can learn about Cancer and the treatments the better. One day they may not have to take to the knife or injecting with chemicals that have horrid side effects. Lets hope that day is soon. Let me know how you are going in the meantime I will learn more about metastises in the liver. Lots of Love. Chrisy
Di_BCNA
Member
14 years ago
Hi Suz, Welcome -- I saw your comment, so thought I'd point you towards a group you might be interested in joining if you're looking for others with a similar diagnosis. It's the Women Living With Advanced Breast Cancer group, and you can find it here: http://www.bcna.org.au/group/4218. It's a private group, but you can still join -- just click on that link, and when the page loads look on the left side of the page and click on the 'request membership' link.

Also, welcome to the site! :) This is a fairly old post, so other network members may not find your comment here. If you'd like to chat more, the best thing is to either make a post in the Advanced breast cancer group blog (the one I gave the link for), or go to your own blog (look at the pink box on the right hand side of the page when you're logged in, and click on the 'My Blog' button), and make a new post. That will then show up in the All Posts page and others will see it.

Hope that helps -- if you need a hand with anything, just ask.

~Di
Sue_Cohalan
Member
14 years ago
Chrisy - sorry I am now just joining the network blog page (call it whatever). I cannot see any responses and realise it is now 16 Jan 2012 but figured the side affect you spoke of is so common it deserved a response as I too experienced this. Mouth rinsing and gargling with BiCarb soda dissolved in warm water immediately after meals and a gentle teeth clean, as well as in between meals if it gets bad, helped tremendously.

I have had 6 cycles of chemo for secondary breast cancer and found each cycle somewhat different so predictability is limited to only the most common of personal side affects each of us endure. Hope you are still going OK and the treatment has got easier on you.

I have done significant research and am looking for others who have a similar diagnosis and interested in latest research on treatments and the impacts on mean survival time (MST). I have breast cancer with multiple metastises in the liver. I was diagnosed in August 2011.

Looking forward to responses.

Suz
Sue_Cohalan
Member
14 years ago
Chrisy - sorry I am now just joining the network blog page (call it whatever). I cannot see any responses and realise it is now 16 Jan 2012 but figured the side affect you spoke of is so common it deserved a response as I too experienced this. Mouth rinsing and gargling with BiCarb soda dissolved in warm water immediately after meals and a gentle teeth clean, as well as in between meals if it gets bad, helped tremendously.

I have had 6 cycles of chemo for secondary breast cancer and found each cycle somewhat different so predictability is limited to only the most common of personal side affects each of us endure. Hope you are still going OK and the treatment has got easier on you.

I have done significant research and am looking for others who have a similar diagnosis and interested in latest research on treatments and the impacts on mean survival time (MST). I have breast cancer with multiple metastises in the liver. I was diagnosed in August 2011.

Looking forward to responses.

Suz
Chrisy
Member
14 years ago
Hi! I am wondering if anyone can help. With each Chemo for the first week I'm useless which is OK but my throat and aesophogas get extremely sore I get spasms and last Chemo I got blisters at the back of my tongue it makes it hard to eat and this goes on for two weeks before it gets back to some sort of normality. After next Chemo on the 29th I am going to weekly doses does anyone know if you get the same problems or because the doses are less is it milder
Chrisy
Member
14 years ago
Hi! I am wondering if anyone can help. With each Chemo for the first week I'm useless which is OK but my throat and aesophogas get extremely sore I get spasms and last Chemo I got blisters at the back of my tongue it makes it hard to eat and this goes on for two weeks before it gets back to some sort of normality. After next Chemo on the 29th I am going to weekly doses does anyone know if you get the same problems or because the doses are less is it milder
Di_BCNA
Member
15 years ago
Ha! Now you're making *me* laugh! :) All jokes aside though, do let me know if you're having trouble with anything -- we're planning a site audit early this year and knowing what you find difficult is really useful.

And you all know how I love to chat, so phoning me in the office is always a good option if you get really stuck! :)
Galaxy_Sue
Member
15 years ago
Yes, thanks Mandy. I've already worked out that Di's "the man" !! :-)
Custard
Member
15 years ago
It just takes a wee while to get used to, Galaxy Sue, and Di is the guru!
Di_BCNA
Member
15 years ago
Hi Galaxy Sue and welcome! Hope you find the site useful once you get going with it.

You're off to a good start -- you've registered and set up your profile so you're in! After that, just have a browse around and either make a post of your own in your blog, or leave some comments on other people's (just exactly as you've done). There isn't a 'members blog' as such for you to join (the whole site is like a giant members blog! :).

Did you find the Help page? Have a look there if you haven't, it has a simple user guide that you can download, with tips on finding your way around. If you just want to see what every one is posting, then go to the All Posts page. You can scroll down and click through the different pages at the bottom.

Hope that helps -- the site works a bit like Facebook if you've ever used that. If you want to chat more, then I'd be really happy to talk to you by phone if you'd like. Just call me in the office ( 03 9805 2582) or let me know when you're free and I can call you.