Forum v FB

[Janette]

Thanks so much for your thoughts, I really appreciate you sharing them. We do get quite a bit more traffic than posts that is for sure.

Christine, I'm really sorry there isn't much peer support for those with ABC here. I really do understand that you need to receive and give support to others with secondaries. It must be very difficult to see young ladies with young families lose their battle so quickly. I know we've lost so many ladies here as well.

I also understand that people try to move on from early BC. Those who stick around are very much appreciated.

I will try to get a default set up with this forum software to make it easier. Please bear with me on that one.

[JudyB]

This sort of forum is definitely much more beneficial than a FB page. This one was invaluable during my BC treatment but going through uterine cancer I had to rely on the FB page which was nowhere near as beneficial for two reasons. One, the people were mostly from the USA and whilst they were very supportive it was difficult to get useful information because no only do they do things differently there but there was no way of knowing where they were from unless you went to their private page which wasn't always public. Two, there are different sorts of uterine cancers, just like there are different sorts of breast cancers and once again you had no idea of knowing who had what. The people there didn't seem to realise this unless they had one of the rarer ones. It was like ER+ breast cancer people giving advice about treatment to triple neg people which of course was just not relative. They also prayed to much which annoyed the hell out of me. I have nothing against praying but when someone comes on for advice and they reply with things like 'let the good Lord guide you'.......... I left the group when someone started referring to people with breast cancer as princesses. When I said it was offensive she refused to stop it and the lady running the page did nothing about it.

I do believe however that this forum is slower due to FB but also because there are other BC forums around now that weren't when I first joined. When I first started here there were a lot of women who had finished treatment but because they had made good friendships they stayed. I think now we catch up with others on FB plus the newer members tend to move on after their treatment.

[chrismelb]

Well i log in whenever my computer gets turned on! I must say as an ABCer i get more info from the others who are travelling along a similar path.
I love this forum and always will but i only really post when i reply to something.
On Facebook, for everyone to see, i really don't post heaps but always on ABC closed group. We loose people all the time and so often you are blown away by how quick they just GO
Also the young ones with young kids are just heartbreaking losses but the online support is excellent. I was very happy that i was able to direct someone onto a trial by my onc at Peter Mac. Very rewarding to help someone, especially when they are young and have young kids. I'll help out anyone here also
Take care all
LC

[The new girl]

I agree Jezza,it's a mystery to me why people join and never join in but happy just to read it defeats the purpose of the forum I think
Rosa

[jezza]

Yes..and quite a few new members who I am sure would enjoy the feedback if they would just join in. Some of them are not new to breast cancer either so could give advice on their own experiences as well. I still feel that the new format is harder to navigate and wonder why so many join up and never log in at all once they are approved. I would say nearly all of my welcome PMs remain unread and I just have to delete them as my out box fills up!

No idea how to remedy this though.

jezza

[Mighty Oak]

Hear, hear, ladies!!
This site was invaluable to me during my travels along the bc road. I don't have, nor want, Facebook but I do despair at the amount of traffic we generate on this forum. Not too many new posters,but I believe there are lots of people who do read the posts.
Hugs, Mo xxx

[ruth1]

I am same Dibs - this forum is an invaluable source of support and advice and I hate seeing it losing its impetus these days. I feel I was very lucky to have had my dx and treatment when people still used this forum often so logging on and seeing at least 10 posts was not unusual. It certainly helped me through the really awful times back then and still helps today but I feel its important to pay it forward but we aren't getting the traffic to do that.

I use 2 closed facebook groups which are great but this forum has the benefit of 20 years or more of info gathered and stories told. This is a resource that facebook cant match.

[dibs]

Hi Janette,
I thought there seemed to be less discussion on the forums and you mentioned it on the Olivia N-J discussion page saying that since facebook the use has reduced. I am sorry to hear this because this forum is a secure and safe place to be able to discuss or vent to people who understand. The thought of some of the things I have voiced going viral to strangers with no concept of the journey is scary, I would never discuss this on such and open forum (maybe I don't understand FB and its parameters and it is safe) I just know how grateful I am to this safe forum for its understanding, advice and reality checks. Dibs