We know from statistics about our discussion forums that many of you just read the site and never post. We would like to find out a bit more about your reasons for this. Could we trouble you to send us a quick email at the address below telling us if
You are happy just reading and not posting
Or, if you would like to post, what puts you off
All responses will be treated in strictest confidence and will help us develop the forums into the future.
I do post occaisionally but am very careful about what I say. I am very put off by the fact that I can google my user name and all my comments come straight up.
I read more than I post, although I do post sometimes. I often feel that I have nothing to say on a particular subject, particularly as I am Triple Neg I often do not know the treatments people are talking about. Can we have a section for Triple Negs please?
eal69eal - is that true? I just googled Ena and nothing came up relating to my posts.
Ena
Hi Ena, eal69eal is quite right…I just put Ena222 breastcancercare in google and your posts came up…I’m not trip neg but I do think we should have a trip neg forum…Belinda…x
I do post but never give my real name. Like eal69eal I also worry that someone could in theory google ‘Rowena’ and ‘breast cancer care’ and all my posts would be available. Just because of the nature of breast cancer many, if not most, posts discuss feelings and opinions which are very personal and intimate and I shudder to think that they could be used in a malicious way.
As time has gone on I have gained more confidence because I have been posting (infrequently) for 3 or 4 years and I have never had a bad experience. So I am happy with the site and how I use it.
However, I think that not posting is not necessarily a bad thing. It is possible to get loads of useful information from the forum without posting - and posting is so time consuming!! Posting does help me to organise my thoughts sometimes and make decisions - but I do feel that for me with limited time and energy I do better devoting myself to my husband, friends and work rather than spending hours posting.
I do understand why some people just want to ‘dip in’ and take what they want/need and I don’t think they should feel under pressure to post. The lymphoedema forum is brilliant and very much appreciated. I often read the messages which are full of useful insights and I only post occasionally
I read alot and try and post if I feel I have something constructive/interesting/funny/objective to say. I find i have some times typed it then not posted as it is out of context or may be taken the wrong way, several threads have gone that way and the way people post is picked up differently by readers. I also tend to start rambling so I will stop!
louise
It took a while for me to post anything, about 4 months I think. Right at the outset it is difficult to come to terms with the diagnosis and just admitting to yourself and others what you have.
After a while though you realise that other people might benefit from what you have already been through and so you post your experience. The expressing of your own opinions is also useful as the other people in your life may not either have the knowledge to know what you are talking about or the necessary emotional response/empathy. Then it’s useful to read others experiences on topics that are not generally covered by your BCN or other medics.
I do post but am very careful as I don’t want my children to know how I am feeling and scared like others that as I use my real name (wish I hadn’t) but didn’t realise that googling would bring posts up until later. It has put me off posting. Also there are some really knowledgeable women on here and they seem to say it so much better. I am always a bit scared of upsetting anyone because I am always putting my foot in it and would hate to upset anyone on here. Scared of rambling too like Louise lol Eileen xx
As Eileen said I didn’t realise when I started that I shouldn’t use my real name,to change my user name would I have to re register?I was just thinking that if I use something really different I might forget it !!!
If you would like to change your user name just send an email to <script type=“text/javascript”>eval(unescape(‘%64%6f%63%75%6d%65%6e%74%2e%77%72%69%74%65%28%27%3c%61%20%68%72%65%66%3d%22%6d%61%69%6c%74%6f%3a%6d%6f%64%65%72%61%74%6f%72%40%62%72%65%61%73%74%63%61%6e%63%65%72%63%61%72%65%2e%6f%72%67%2e%75%6b%22%3e%6d%6f%64%65%72%61%74%6f%72%40%62%72%65%61%73%74%63%61%6e%63%65%72%63%61%72%65%2e%6f%72%67%2e%75%6b%3c%2f%61%3e%27%29%3b’))</script> quoting your current user name and what you would like to
change to.
i find it hard sometimes to join in the chat and feel out of place. plus i forget what pages i have been in. i recently came out of hospital had a full hystorectomy due to being progestrone positive breast cancer. have had some pain in my lower back and tummy which has been said to be an infection which i picked up in hospital the day after my opp. they say either my bowels or bladder. been given two lots of antibiotics but the pain is stiil there. just wondered if it could have been damadge caused by the opp as no one wants to be more telling.feel very uninformed and in alot of pain. not sure im even talking to the right person so could u please help.
poppet39
I use various boards, mainly for current affairs; this is the only cancer one I have ever used. I would never, ever use my own name on any messageboard, it doesn’t matter what it’s for. I also get concerned about people taking things out of context and find that some posters can be very quick to cut you down in flames if you have a positive attitude. I’ve moved on quite a lot with counselling in the past few months and am now thinking about cutting myself adrift from this board and also a group I attend once a month which has other BC ladies in it. I feel I would perhaps get on with life, work and study a bit better if I did this.
I’m also never sure whether the names of doctors should be mentioned either tbh, really all just concerns from a privacy pov.
I have noticed that on occasions people have been shot down for the comments they have made so I am extremely careful about what I type.
My prognosis is very good but when I am having a bad day, I go on to the site and it helps me to remember how lucky I have been. I don’t always feel that I need to say anything.
When I first came on the site it was after I had had a mastectomy.
I did venture on a few weeks previous but saw the word cancer and shut it down.
The first few months I only read, as I didn’t feel I had anything to say, I just needed info about various topics and reassurance about feelings, all this I got from reading.
so I was USING IT TO MEET MY NEEDS
I am not the kind of person to ‘bare my soul in public’ so to speak and am very aware that whatever I write is visible to ANYONE on the web unless its a PM, Do I really want my Headteacher or one of the staff at school to read about how difficult / emotional I have found some parts of the treatment? ’ TOO VISIBLE TO OTHERS
Happy to write from experience if that will help or benefit someone else so most of my posts are of that nature or are to people with whom I have built up some kind of relationship. And now as time has moved on I don’t always have the time to post, knowing that someone else will probably do so. DONT ALWAYS FEEL I HAVE MUCH TO ADD
The chit chat section is good with the various fun topics and games as they are quick and don’t require knowledge experience or would be embarressing if someone were to read them. Also I good way in to posting.
I really value the forum though - it has been so helpful and supportive. I have been really reassurred just reading some threads despite the fact that I would never post on some simply because of the visibility problem.
I have made ‘friends’ on here and learnt so much - so a big thank you.
And does it matter if people read rather than post?
I do post occasionally, but find it very frustrating as it is so difficult to find threads on which I have posted, when I want to check for any replies.
Perhaps there could be a “My Threads” option where a list of threads to which we have added are easily accessible.
Also, I agree with the others that it is worrying that what we think we post in private is actually available to anyone on the web.
As a very regular poster I shouldn’t really be replying!
But just to say:
I accept this is an open forum, understand my posts can be googled and post knowing that. Please keep it like that…makes for a dynamic forum. The world wide web is not private…why does anyone imagine it is?
I don’t want ‘private’ bits on this forum…I think they close down the possibility of connection. There are many things I wouldn’t dream of posting on an open forum or on an artifically created ‘private’ one…one to one pm contact is different…looking forward to a better messaging system on new site. The internet is great but it is the internet not a confidential counselling service.
I use three US websites, rarely post on one, and never on two others. I use them for information, but don’t have time to get involved in posting. I guess that’s how many non posters here feel.
Non posting is just fine, occasional posting is just fine, regular posting is just fine.