— I know it is easy — to be angry at BCC but I think we should also direct the main force of our anger at the people who have made it necessary that this action was even considered. I would love to know who they are, or at least what they did.
Having once been the target of a group of really nasty mails, for no reason whatsoever to my mind, I know how hurtful and frightening these mails can be, and how they can make you feel vulnerable and give the cancer a real hold on your life, causing terrible depression. Especially if you live alone.
Whoever has done this is sick, but the frightening thing is that because we don’t know who they are we suspect EVERYONE, even genuine people.
At the moment I am the target of nuisance calls and I have suspected neighbours, friends, old enemies - you name it … and it affects genuine people and friendships.
Please BCC, I DO understand your reasoning, (not necessarily agree with it), but can you not give us some indication of who or what kind of mail you are referring to. Thank you.
Joy xxx
Joy - nuisance calls Hi Joy
Really sorry to hear that you are being plagued with nuisance calls. I had this problem a couple of years ago and I subscribed to BTs Choose to Refuse service. You can block any number. You can also use it to block the last number that dialled in even if they witheld the number and you don’t know what it is. The caller then gets a message saying that you don’t wish to speak to him. I found it invaluable. I think it can block up to 10 numbers - you can block and unblock them as and when you like. My ex husband took to calling me at 3 a.m. I blocked his number except when my children were with him when I unblocked it. It was great.
Hope this helps.
Love
bjj xx
Questionnaire Just a thought - has anyone had the feedback questionnaire yet that was promised when the feedback room closed on 14th Feb, seeing as it is now 15th March?
Or have they missed me out?
When its it likely to be due please Moderator?
You can block e-mailers One thing if someone has your e-mail address and you dont want them to e-mail anymore you can block them and we are all able to do this.
I was gutted that my e-mail address couldnt be given to Nicola or others ladies i find who are going through exactely the same treatment as me.
I have already made some lovely friends and helpful friends on here.
I noticed BBC havent responded at all to any of the postings no explanation, one thing comes to mind is it too much work to pass on e-mail addresses??
Every site is going to get some ‘odd bods’ but as people have said before we are mature enough to cope you just ignore them or as i have said block them.
Will look at the site given above later and try and join
Ruthx
— — bjj
Thanks for your posting. I have been given a number to dial by bt with a digit to press afterwards to block the number even though caller witheld.
How do I go about UNBLOCKING it should the need arise. (I am thinking if I do this in a week’s time I can check if they are still phoning in or not, or whether I can relax)
Joy xxx
Joy Hi Joy
BT sent me a leaflet about “Choose to Refuse” - mind you I had to ask for it! It’s useful as it tells you what to dial and a bit more about the service.
I don’t know if it has changed since I started subscribing to this service but my leaflet tells me to dial 14258, enter PIN number (BT should have given you one) and then listen for a choice of options. One of the options is reviewing the list of numbers barred (if number has been witheld it will tell you so). You then have a choice of deleting numbers from your barred lists so that they can then phone you again. I regularly unbarred and then re-barred my ex husband. It’s really easy to do.
You can also just tap in numbers that you want to bar rather than having to wait until they call you first.
The number to call if you don’t know your PIN is 0800 800 150
They also have a Malicious Calls Bureau 0800 661 441 who were helpful and sympathetic towards me.
If you have any other questions please ask.
Good Luck
Love
bjj xx
posting email addresses I guess there’s nothing to stop us putting our email addresses in our profiles if we want them to be available. We can always edit them out of our profiles again if we change our minds. Its a shame they have to be made available to all or none though.
Personally i don’t mind as mine is in the public domain anyway with my work, but i can understand why not everyone would want to, like not everyone wants their phone number in the phone book.
Creating a special address It’s just occurred to me that one way of getting round this problem is to create an email address specially for putting on our profiles. All ISPs offer the ability to have several email addresses and most of us don’t use our full quota. This way we don’t have to make our normal email address public, but can still be contacted direct if BCC refuses to help.
Must go and work out again how to create a new email address…
Kathy xxx
good idea Kathy - if the technology is not too much. I note the folk on the secondaries forum seem to have another e mail address so presumably they get round it somehow. A few of us have also registered on the site someone referred to on chit chat and fun.
Celeste
Ssssh! - the other site I too have registered on the other site as well as this one and was pleased to recognise so many aliases from here! The disadvantage is that I shall now be spending more time on the computer as I shall have to check out BOTH sites every time!
The other site has the things I recognise from forums on other subjects that I have used and which have been talked about on the forum feedback here:
private messages facility
the ability to see who is online
to check messages updated since last visit
it keeps me logged in for when I revisit
uses the whole of my screen
and smileys and pictures too
but do you know I have got so used to this new layout on this one now it seems strange!
I would never give up on this BCC site though because it has been such a lifeline for me and there are always going to be new people just starting to find their way through this maze and I would like to feel that I can help in a small way with my experiences as others have helped me.
See you in BOTH places!
Linda
Sshhh…Me Too I thought I would take a look at the others too. Must admit they weren’t quite so easy to find your way around as this one - as some will probably notice I messed up. Maybe I should have chosen a different id so no one would know.
I even managed to negotiate the intricacies of creating different email ids - that took away some brain cells. Thinking of showing my husband how to do it - but on second thoughts … if he keeps to the main one I can read his mail too - how mean can I get.
And yes - I seem to be spending more time on the computer and getting problems with my neck and shoulder again - anyone else with bone mets find this a problem?
Hope to catch up with a few other split personalities here and there.
lol Dawnhc
Response from Breast Cancer Care We appreciate the strong concern on this question, but this is a decision that has been taken across the organisation in order to protect those who use all our services.
We know that it will always be a minority risk but as a national charity we have a duty to protect our clients from potential misuse and abuse.
We are one of the busiest international breast cancer forums, and therefore we are bound to attract attention from people who are not using the services in the way we would expect them to.
This isn’t about trying to stop conversation or sharing of ideas and experiences. We have no intention of patronising our members, or keeping information from them, but we have to maintain confidentiality.
We are looking into developing a system using contact buttons which will resolve a lot of these issues but until we have this developed, we have to stop email exchange of addresses, this includes all email addresses and email addresses in profiles.
Kind regards
BCC Moderator
— Well done Moderator - a response at last. I have resisted any comment or criticism until now. My thoughts are if you provoke anger or resentment it is best dealt with quickly. Judging from the various posts I think you boobed on this one! Sometimes silence is not golden.
Dawnhc
Why is this so difficult?! Hi Breast Cancer Care
I really don’t understand why this is so difficult for you. If you go onto ANY dating site (and believe me I’ve been on a few!), they all have an ‘anonymous’ way of contacting other people. Your own private e-mail address is never given out to anyone but your e-mails come through the site.
Surely this is the way forward. Maybe you could contact match.com and ask them how they do it!!!
Helen
I am shocked to return to the forum to find that the opportunity of exchanging e-mail addresses has been withdrawn. Without this possibility I could never have met a lady who has become a good friend: Roberta. I contacted her through the contact button on the old forum site, because we were both patients at Barts. We have since met a number of times there and elsewhere and she has been visiting me in hospital during my recent long crisis. Where 2 adult willing parties request the intercession of a third “postbox”, where is the so-called “danger”? If you receive messages from someone which become wearisome to you, just put them on your list of “blocked” correspondents.
It seems to me that there is some kind of hypersensitivity at work here, and not on the part of forum members. BreastCancerCare, you should EXPLAIN what kind of risk has been experienced, not just peremptorilly suspend a very useful and needed facility.
— JPOET —Sooooooo pleased to hear from you. Lovely to have you back.
Big hugs Joy xxxxx
Dear all,
I would like to echo the same viewpoints as others here in that I think the contact buttons should be re-instated.
I have felt for some time that the chat forums have lost their old “spark”.
I used to check on postings and replies several times a day. Now, perhaps a couple of times a week, if that.
I feel less compelled to use the forums and more worryingly, less interested in them for some time now.
Before, when we had access to contacting people on the site there was a sense of ‘family’ or at least a real closeness here. Now, I know of only a few of us who have rejoined the forums.
Why is this BCC? You have to look at this and listen to what the members are saying. By keeping quiet, you appear to not be listening to the demands of the service nor providing as good a service as previously.
Please listen to the users who as adults are more than fully aware of and accept all the implications involved in applying contact buttons once more. IT IS US, in our times of treatment and afterwards living with Bc who seek the virtual voices of people in similar situations. Not you. Sometimes we just need to be able to contact someone and have the opportunity to form closer, great friendships during such a horrendous time in life. I think it would be in the organisations best interests to re-think your decision soon.
Sincerely,
*pearly*
Support I have been meaning to add to this thread since it was posted, but just felt so angry and depressed over the whole matter I’ve left it until now. Many responses have echoed my thoughts very eloquently and to the point. JaneRA and JPoet’s posts especially come to mind and are people whose very valued contacts I would never have made without this facility.
I cannot imagine not having made the regular contacts I have, and regard this as simply a VITAL extension to the support mechanism which the forums provide. There are some times when I choose not to post concerns or events to the forums, but am able to have (and sometimes give) the support from similarly affected people on a more personal and private way via these contacts.
I’m sure that even the people that have said that they have been victims of abusive emails, would probably admit that on balance, they would still rather have made the close contacts that they have made. No one is forced to exchange emails, if people choose to take the very small risk for the potential benefit that may be gained and still get abusive emails, simply delete them and block the sender as has been suggested.
I’m sorry BCC but your responses still do not address the problem and with no indication of when a new facility is to be made available, it’s difficult to leave this one alone and wait. We made our thoughts very clear when you announced that this facility would be withdrawn on the old forum and that was back in October I think. We will therefore be approaching 6 months since this whole issue was raised and during that time new people have been diagnosed or found these forums for the first time and the bottom line is that these new people have been deprived of this type of support.
The minimum I feel you should do to dissipate the angry born from the lose that many are feeling (if not always voicing), is to indicate that you realise the importance of this issue and indicate a time by which it will be resolved.
Roberta
Other sites seem to manage. breastcancer.org runs an excellent private message facility, it doesn’t seem to cause them problems. breastcancer.org/
BCC - do you have a timescale? BCC - you mentioned that you’re looking at developing a system of contact that will resolve some of the problems that have caused you to shut down email address exchange.
Can you let us know a realistic timescale for this? It’s clear from the responses that many forum users (including me) regard the ability to email others as a critical element of support that they want from BCC so I hope that you can give us all some encouraging news soon.
I agree with much that has been said - that people can block unwanted emails etc, but if someone’s going through a particularly vulnerable patch - awaiting test results, had some bad news, worrying about treatment - getting one unpleasant email, even if you’ve had many supportive emails too, can be very upsetting, whether or not you block future mails from the sender.
I hope BCC will come up with something that everyone can agree is a good solution as soon as possible.
Daphne