protecting your security online

Hi everyone

I have just deleted a thread ‘facebook’ in which people were writing their whole names and other personal details. As this is an open forum which can be read by anyone browsing the web we do not allow the publication of details such as these. This is to protect you from unwanted attention. If you want to swap details then please do it by using our private message system (just type the name of the person you want to contact in the box ‘send a private message to.’)



oh well i knew it wouldnt take you long,surely its up to us if we put our full names or not its not like we were putting our addresses in was it?

Hi Ann,

I agree some people use their full names as their username! Surely we were not breaking any rules??? We were not forcing people to join in!!!


I would be careful with your names. I googled my name 2 years ago and found that a charity application I’d made for a charity I worked for had published my home address accidently. My husband’s address also came up from a triathlon he’d entered so you do have to be careful. with your name as a username and I was certainly under the impression you were not supposed to put your full name as a user id so BCC should make that clearer. Some other lady on site found her relatives were reading her entries here and were finding stuff out she didn’t want others to know .
I think my onc reads my enties here as he has commented about reading somewhere about someone having a marked success with a particular chemo combo on and when i googled it I could only find my thread here and my blog!! I know he uses google cos I asked him which search engine he used thinking he would use medline!!!
I know it feels like a spoilsport action but honestly you don’t know who is reading it. Just google your BCC ID and you’ll find all your entries.
The PM system is good but not as good as the old contact buttons they had here when I joined in 2005.
All the best and glad you’re having fun!!!

I used to work for a major broadband provider in their complaints deprtment and we were contstantly advising ppl not to use their names in forums etc … I took my own advice and whenever I join a group or forum I use a nickname - hence the name lilacblushes. I know it may sound harsh for BCC to delete the thread but they are doing it for your own protection.

I can see both sides of this argument…some 6 yrs ago, before I got bc, I used to belong to the US Crohn’s and Colitis Foundation help forum - basically to find out what was happening with new drugs that were not licensed in England. Through that site, which was defunct some 2 yrs later by their lawyers in New York, I met one of the most wonderful young women I have ever had the fortune to meet. She was newly diagnosed with Crohn’s, desperate for information and experience, and privately e-mailed me. Thence began the most incredible cyber friendship - she was Scottish, living in San Francisco and working for a charity for abused and neglected children as their Accountant.

Shortly after we started to email each other, we were both diagnosed with cancer - her with pancreatic, me with breast. I guess we emailed each other, with 3 long pages each time, twice a week. When she died in Feb 2007, at age 37, her son of 15 yrs old e-mailed me within hours of her demise to say how sorry he was that he couldn’t give his mother the love and support I, as a stranger some 6,000 miles away had done, and could I tell him “who his mother really was?”…she had read some of my e-mails to him - as funny as I could make them. I was in tears for days, that this young boy could take the time to write to me, after such a traumatic experience. I had hard copied some of her e-mails and wrote to him saying, with his father’s permission, I would send them to him, but have not heard back…as of yet, but I know I will. It is so sad that we had made arrangements for my friend and her 2 children to come and stay with us last summer, but not to be.

All I can say, is that I am so thankful for the internet - for both myself and my late friend - we had some 4 years of wonderful cyber friendship, and shared in each other’s lives. Crohn’s is such an orphan disease compared to breast cancer, and I am trying to do all I can to negate the “bubonic plague” syndrome of a socially unacceptable disease, as cancer used to be. I can vividly remember when my father was dx with colon cancer, my mother saying: “Don’t tell anyone your father has cancer!” I went ballistic with her (a very gentle, caring, but naive lady), and said: “Mum, we have nothing to be ashamed about” - pity she didn’t get it, but she was of another generation.

I hope we can promulgate on the internet what we wish to communicate, without being at risk. I felt so desperately alone with Crohn’s for some 30 yrs until we got the internet, and I could research my disease, find a drug that was not licensed in England, even now, and badger my consultant gastro for it off license., and talk to others in the US who have it. Cancer information is widely available now thankfully, and I hope I will be free to advocate about Inflammatory bowel diseases too.

Without my being able to give my friend my e-mail address, I could never given her, or her son the support she needed. And, I got back so much from such an intelligent and articulate friend.

dippykate - yes, I was horrified to google my screen name, but my address, phone number or e-mail is not available outside of safe sites.

Take care all,
Liz …

oh liz,what a sad story,but happy because you gave so much help to that lady and her son,that was touching too read.I googled my screen name and didnt find anything about myself on there…I went through lots of pages too.My profile page on face book is only on view too friends so there is no problem for me,and I am by no means well off if someone thinks they can get my money ha ha x

I want to give an example of safety or lack of it on the internet. A little while ago there was a thread on your pets name…I think I posted to it about the safety of doing that, or I pm’d the moderators to ask them to warn members. Sadly this was ridiculed and I think the suggestion was that some were perhaps a bit paranoid, maybe not exactly in those words. I know for a fact that some were using their pets names as their passwords. I think that someone on that thread had also posted that she was going away on holiday. If she was using her pets name as her password someone reading that thread could have accessed her account here, found out her phone no. and address… need I go on? Please take the moderators warnings about personal security on the site seriously. And please moderators can you be faster to remove the sort of things that can be a security threat to members. The full names of members in the first facebook thread were up for some considerable time before your warning was made in the thread and names removed.


thanks dawn for your warning…I still have nightmare of my first husband finding me…he got a life sentence for attempted murder on his 2nd wife and 2 boys…I don’t think he can find me from my postings…I regularly check my screen name.

I have never even looked at Face Book, My Space, or Friends Reunited… I have too much going on my life to be bothered, but do understand the problems they have caused to many people and their relationships. Sad…

Facebook is different to Friends Reunited in that you choose who has access to your information. I have a busy life too, but I find facebook a fantastic way to keep up with friends all over the country, that I normally would not have time to speak too! It has it’s plus sides.

A few of us ladies are now on there and have a group going which is nice to put faces to names, but I do take on board the safety aspect too.

Jules xx

I dont have too much going on in my life,i keep in touch with my friends in cyprus,scotland etc etc,I now live in a tiny village where I have no friends so its great for me,not working ,hubby off to afghan soon,29 may,then il be on my own with my son until end of september,then it will be even more boring so probably I will just be on here all the time,you are lucky liz that you have got such a full life.not everyone has though.


Hi everyone

Thanks for all your very thoughtful comments on this. I just wanted to come back to remind you all that if you want to exchange personal details with another member you can do so by using the private messaging system. Just type the name of the person you want to contact in the box ‘send a private message to’.

Best wishes to you all