I just wanted to post a little word of warning, and say my thankyou’s and goodbye’s.
I have used this site frequently over the last two months since I was diagnosed with IBC. I have found it invaluable as a place to seek good advice, words of wisdom and encouragement, along with somewhere where I felt able to let off a little steam when I’m having tougher times and ask some of the difficult questions I didn’t want to verbalise.
Sadly, it seems that I am not as anonymous as I had hoped and some people reading my messages have taken offence to them.
Please be kind to yourselves, you are all such good strong people, but also be wary of posting messages which others might read and misinterpret, and consequently add to the stess and anxiety we’re all already under.
Whilst I have used the site as almost a open diary, it seems others aren’t happy to respect that we all need a little privacy, even on an open forum.
I will still lurk, and read your messages and send silent replies, but don’t feel able to contribute honestly as things stand.
Rebecca -
What could you have possibly said that would offend others on this forum? Who would complain and who would blame you for wanting to vent? I find this very difficult to read and believe.
We are in BC together; across countries and across all boundaries. If this Forum has helped you, I am sure the BCC facilitators will be able to work things out for you. Isolation and anxiety are the least of all things that you need right now.
So sad to hear that you have to say goodbye so soon and for such an awful reason, I too have thought about people I have had a moan about reading my thoughts and misinterpreting them and am really sorry and horrified it has happened to you.
I have read quite a few of your posts and have laughed and cried along with you, good luck with everything. Be kind to yourself (((Hugs))) Shonagh xx
I feel so sad after reading you post, Rebecca. Who would take offence at your messages? We come on here to let off steam and to talk to others in the same situation as ourselves. Sometimes this is the only place we can come to talk to people who know what we are going through. To have you leave because someone has taken offence at what you’ve written is awful. Please get in touch with the moderators on this site. They will be able to help and sort all this out for you. Please don’t leave. Breast cancer is isolating enough without being able to come and talk to those who care. Please reconsider, Rebecca, please.
It’s not a forum member that’s taken offence, it’s someone within my family who’s come here for support too apparently, but because I can’t now be open or honest with my feelings, it just doesn’t feel “safe” anymore.
Have just looked back through your posts and can find nothing that anyone could take offence at! We are all in this together and will, probably, say something that not everyone agrees with. I know I have got into some debates and made myself unpopular to some people, but I would never deliberately upset or offend anyone. Whoever has ‘complained’ about you (or whatever has happened), should think long and hard about it, because, as I said, we’re all in this together, regardless of diagnosis and NOTHING you have posted could be taken as offensive. Please don’t take it to heart and we will still be here if you need us.
Hi Rebecca
Please don’t leave … as you may know my daughter has IBC … an awful and aggressive cancer and its isolating enough to know only a few people have it. You can say what you like … the moderators would edit if something was said that would genuinely offend someone. The person taking offence has the problem not you. Lisa & I would love to hear how you are doing with IBC, I think you are both about the same age. You can answer me with a private message if you wish and I will answer back the same way.
Love and hugs
Sue x
Only just read your latest about family member. If you write on private message no one can read it unless family member can get in using your password. Change your password if that is the case! Sue x
I understood what you were getting at and am really bothered that someone who has come in here for support (i.e family/friends) has read your postings and felt it was an appropriate time to tell you that you have upset them when I gather whatever you have posted was about them upsetting you. I seriously worried about friends who were upsetting me reading my posts especially when I realised if you google a lot of BC terminology it brings up our posts as a reply. I discovered this while trying to research tamoxifen and SSRI anti depressants!!!
I feel for you so much as I gather this person/persons is close to you. I know nothing we can say can make it feel better and really feel for you especially as you are still going through treatment. I finished rads a month ago and am now back at work and still feel the need to post in here especially about my feelings.
Just wanted to let you we are out there for you when you need us. S x
So sorry to hear that someone within your family has taken offence to what you have said on the forums here. As has been said by others the stress of others getting offended and telling you so is just not what you need when you are dealing with BC.
In our situation we are all scared and I suppose a little self-centred and as such we do run the risk of saying things which others might take to heart. I have found myself a couple of times in the past few months opting to walk away from a conversation as I knew if I said something I was at high risk of saying way way too much.
I hope that you manage to get the situation sorted out with the least amount of stress to all concerned.
Sorry to read this thread…please do not leave…why not change your user-name and pass- word.
Obviously this is very difficult for you as it involves family…but please do reconsider and as has been said maybe private msg individuals you wold like to talk to.
Do take care
Karen x
I’m really sorry that you feel you may have to stop using the forums and hope you can find a compromise which feels right for you…maybe by using private messaging more, or perhaps as karen suggest by changing your user name.
I’ve been using these forums a lot for a long time but right from the beginning decided that I would never write about anyone I know in a personal way, so its off limits for me to say anything about my partner or friends…though I have occasionally referred to things friends have said but in such a way that if a friend was using the forums they probbaly wouldn’'t recognise themselves.
Its different when I use private messaging (which is why it was such a loss not to have a system for so long).
I think this is a whole tricky area for each of us…it is so easy to forget the public nature of the interent. I’m often amazed at the personal things people say on-line on blogs, forums etc.
Hi Rebecca
I echo everyone’s thoughts on this difficult situation. I am 3 years post diagnosis and I still occasionally come on to the site - more now to see if I can offer any help, but at one time to get support from the wonderful women out there. If I thought for one minute that some one I knew was reading my posts I would have felt that my privacy had been invaded and they were showing a lack of respect for my feelings. We sometimes need to use this site as an outlet for our emotions, so that we can spare the feelings of those close to us. It would be a shame for you to give all that up.
I agree with Karen - re-register with a new username and password that your family member won’t guess, and maybe don’t sign your name. It must be awful for you knowing that your anonimity has been breeched. Being able to say exactly what you want in a safe environment is invaluable. I had 6 months of counselling which allowed me that.
Please take care and know that we are thinking of you.
fantan xx
If you are getting a hard time from family members (and although as far as I know it has not happened to me, but I did put something in a post about a family member that had upset me, but then quickly edited it in the fear that they might read the forums as I know they have used the site for information too) But anyway what I was going to say is why do you not re join but using a different name, and that way you will be anonymous but still have the chance to speak and say how you are feeling.
The other site (sorry I can’t put a link - but if you google the abbreviation for breast cancer and another word for friend (also a well known brand of dog food) is a private forum. Only members can post and read, and it is only available to those with a diagnosis of breast cancer or those with a brca1/2 gene. If you need help to find the other forum, please pm me and I will give you the link.
Please don’t go we need you and you need us, I would just use whisperback or private messages so noone can read them. There are only a few of us with ibc and you contribute a great deal.
Please please don’t leave me.
Love Mel x
Hi Rebecca,
I can re–itterate what others have said,it can be a lonely time and we need a sounding board like this, please think carefully
Good luck
Mary
x
Rebecca –
I had such a nice, devilish thought. You could actually send messages to your family member, indirectly, on the forum. Wouldn’t that be interesting? Just a thought.
Why is this person reading your messages to begin with? It really upsets me that you have to deal with BC and the pettiness of a family member in the one place where you should feel free to talk.
I don’t know how, but somehow let us know you are OK.
Hi Rebecca
over the last couple of months I have found this forum a life saver. There are times when you want to discuss /rant about something without the added burden of trying not to upset family members. This should be a place to feel safe about our emotions and fears. It’s a shame the family member in question hasnt realised who needs this forum more, you or them.
Hope you dont stop emailing.
Take care
Lynn xx