profiles

Public Archive
21

To the moderator:

I am right there with JaneRA - when I got bc I was very isolated in a Fort in Cornwall miles from anywhere. having repatriated from Spain. I had only two friends and no near relatives to help out. I have no parents, neither does my husband, and my only living close relative is a sister some 600 miles away. My husband is an only child as were his parents, and we have no children. I didn’t even know what lymph nodes were until dx with idc and my bc nurse showed me them on a diagram. Only when going through chemo did I find this site as I also had a huge flare of Crohn’s and that was more than enough to deal with. I eventually was able in 2003 to exchange email addresses with another woman on the this site who had almost the same dx as I had, and she has become a very valued and trusted friend.

I have for some 7 years been a member of the now defunct American Crohn’s and Colitis Assocn interactive website where we could exchange email addresses. I met a young 34 yrs old woman on there - Scottish but living in the USA, and she was having tests for Crohn’s. At the same time as I was dx with breast cancer, she was diagnosed with pancreatic cancer and Crohn’s. . She and I became soul mates in cyberspace - bc is one thing people can almost understand, but nobody wants to hear the details of living with Crohn’s. Somehow, we were able to “talk” to each other via e-mail, and she was due to come and stay with me this year, with husband and two young children, but sadly died last February at 37 yrs.

What I am trying to say is that if we hadn’t had the facility of exchanging e-mails on the CCFA site, we would never have had the wonderful relationship we had, when we both felt we had no-one to talk to about our problems. When she died, her son of 15 yrs e-mailed me immediately to say how sorry he was that I, as a stranger, living some 6,000 miles away, could give his Mom the love and support he had not done. It was a very salutary moment in my life. I have saved all my friend’s e-mails (so articulate and erudite) in case he one day wants to see them. He said he didn’t know his mother as a “person” like I did, although she sometimes read him my funny e-mails. So, that is the benefit of being able to email someone privately, without difficulty, and I and my husband, are so thankful for her caring for me with my own problems, when she had a terminal prognosis.

I sometimes think these sites give more prominence to medical matters, although they are extremely important, but at the same time, we do need to contact other people going through this horrendous experience, privately. We don’t always want to bare our souls here in cyberspace where anyone can read them. .

Since you stopped the direct e-mailing facility I haven’t felt able to contact anyone directly, although some 5 yrs out from dx I know I have a lot to give privately to anyone who is floundering like I was at dx. .
Amen…
Liz.

22

Just want to add my support to both LIz and Jane - there is the potential to feel quite ‘bare’ on open forums and would also like the opportunity to having a private message facility that comes through my emails and also a marker, through my emails, when someone has posted a thread to something that I’ve also made a comment on.

I agree with the others that it can take ages going through all of them and I can’t always remember which ones I’ve made a comment on!

I’ve got to ‘know’ some lovely ladies here and on other sites as well and the information and support that has been imparted is invaluable especially in certain areas that the hospital just can’t tell you about. It’s not always about the medical info that’s important - it’s knowing where to access other sites, insurance companies, complementary therapies, etc. etc.

Pinkdove
x

23

Dear All

You can use our private messaging system to send messages to another individual registered on these forums. We introduced this system to enable people to post messages to each other without requiring them to divulge their e mail address to someone who, after all, they do not know. In protecting the privacy and safety of our members we are following best practice on many websites, which do not allow any exchange of private details.

The history of this site in particular has informed our decision. When people were allowed to contact each other via email, a few people so abused the system as to cause real psychological harm to others. As a charity charged with caring for people with breast cancer we cannot under any circumstance let that situation develop again. Therefore we will not allow the swapping of email addresses or other personal contact details.

If there is one particular person with whom you wish to begin a correspondence the best way to do this is to set up a new discussion in the private messages category. Then just check when you login to see if you have any messages. The only people who can see these messages are you, the recipient and the moderation team. The moderation team randomly checks messages to ensure that no-one is misusing the system. Again we do this to ensure maximum safety and security for our members and this decision is informed by the bad experiences some of our members have had in the past.

We have noted that some members have asked for an alert system whereby they could receive an email telling them a private message in waiting for them. We are investigating the possibility of introducing this.

Kind Regards
Katie
Facilitator

24

I have been around the forums long enough to remember the difficulties which led to the withdrawal of the old private e-mailing system. I know that a very few women were upset because they received some e-mails they didn’t like but to describe this as ‘real psychological harm’ is completely wrong and over the top. Did you get a clinical psychologist in to diagnose the harm? At the time the vast majority of users still wanted a private messaging system. The current system is not private since moderators can read our messages. It is also strangely disconcerting to see ‘private’ messages in the middle of threads.

The internet can be dodgy…we are all adults and know the risks. Other cancer sites here and in the USA operate private messaging sytems which are as ‘safe’ as the internet can be.

I like these forums, (edited in line with forum terms and conditions -moderator). I find it incredibly patronising that a breast cancer charity should tell me who I can and cannot swap my e-mail address with.

best wishes

Jane

25

I don’t tend to get involved in the politics of sites, but I do find it very strange that moderators CAN READ private messages, because in fact that’s what they are, PRIVATE.

I belong to quite a few different forums and did until recently moderate one of them. At no time could I read private messages, yet there were hundreds of people using the messaging system.

Recently on another forum someone even brought this issue up and although it was a different system to the one I had worked with, the answer was exactly the same - Private messages are just that, private. The moderator cannot access them unless sent the message directly to their own in box! I agree with Jane, we are adults and know the risks of the internet. If you are not willing to undertake the risks then don’t use the system.

I wonder what the rulings of the internet say about this say about this? Such acts as the The Freedom of Information Act 2000, The Computer Misuse Act 1990 and Data Protection Act 2000? In my eyes the fact that the BCC forum do read these messages must suggest that this forum is being used as a commercial system rather than a domestic system?

I thought the whole point of the forum, is so that we can talk to others in a similar position, to gain support and advice to help us through our diagnosis, treatment or even losses.

Lynn

26

Like JaneRA I remember the problem on the old forum and I agree with Jane it’s completely over the top to call this real psychological harm! It involved a small handful of forum users and we have all had to suffer because of their actions ever since. Thankfully I made contacts on the old style forums and have been able to meet up with others, several times, for continued friendship and support.
A private message cannot be called private if a 3rd party is able to read it. BCC you are asking us to trust the Moderators (who we don’t know) but you seem unable to trust us. It’s such a shame.

27

I am very annoyed that my post above was edited by moderators. All I did was name another breast cancer site where it is possible to send private messages and if wanted, exchange private e-mails. I did not even give the web link. Does this mean that we are not allowed to mention other websites?

Jane

28

Hi Jane, sadly I think this may now be the case, I read one of dawnhc’s messages a few days ago which also mentioned this.
Belinda.

29

I think this site is very interesting and informative,I read a lot but I rarely post these days,as for private messages cannot agree more with what has already been said,It is uncomfortable to me that anyone other than the recipient could read them,and I cannot understand the argument against private messages being just that,totally private,we are all adults…also if another website is mentioned in total good faith in a caring and informative way,why oh why does a moderator have to intervene,I find it all a bit un nerving…people want to write their own posts,not have a ghost writer lurking in the background,sorry but I do find it all a little disconcerting to say the least,…D.

30

Hi Jane, longden and belinda

Just reading your posts, can I suggest that you have a look at the post previously written by Katie above as it explains some of the reasons why Breast Cancer Care have made these decisons.

I hope you find this helps to clarfiy things for you all.

Kind regards

Sam
Bcc facilitator

31

Thankyou Sam, I did…before I posted,kind regards .D.

32

It is quite clear that Jane, Longden and Belinda did read the post referred to Sam, unfortunately it has failed to convince them …and the rest of us.

33

Is it a year or two years now since the new look site was launched? The main issue of contention on this board continues to be private messaging, or contact buttons as they used to be. I am sure I am not alone in NOT using the private messaging system, because that is a misnomer isn’t it? It is just not private.

Jenny.

34

It seems very strange to me that we cannot use the private messaging system with any degree of privacy, the thought of someone else checking up on me at my age is ridiculous. There is always a facility to report abusive mails and the moderators could become involved at that stage.
I am also a member (post edited by moderator) and have made the closest, most supportive network of friends imaginable. We have met, even though scattered around the country, chat on the phone and are there for each other at any time of day or night. To know someone is there who knows you and your history so well that you do not need to go through it all again before starting your latest tale is a blessing.
It is difficult here to form any ‘off forum’ relationship, with no facility to exchange personal details and I think that is the only thing downside to an otherwise excellent site:)

35

Dear forum members

I am going to close this thread.

It is the policy across Breast Cancer Care not to allow the exchange of private emails and the discussion forums are adhering to this wider policy. Although we recognise that some of you have different views on this our decision has to be final. As we have said many times this is to protect the security of the site and our members.

We would encourage you to use our private messaging system if you wish to communicate something with other members that you do not wish to appear on the world wide web.

Best wishes

Jane

Moderator

Breast Cancer Care