Just a quick post to say thank you to everyone who has posted here and also to the many who have emailed me. I plan to leave this thread here for a while in case any more of you want to join in. I am especially keen to hear from those of you who don’t post or who post rarely.
When the posts and emails on this dry up, I will gather together the various ideas you have put forward and post a digest of your main points (I will of course make sure that your anonymity is protected).
I suggest that we then have a discussion, here and by email, about how we at Breast Cancer Care can support and help those of you who would like to post but don’t feel comfortable about doing so at the moment.
For those of you who don’t want to post but get a lot from the site just reading your are very welcome here and we hope that we fulfil your needs as well. If you ever want to contact us for any reason then you can always email us at <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>. All your correspondence will of course be kept private.
I very rarely post but read lots. I seem to be among a very small amount of people in my position as I am the wife of a man diagnosed with breast cancer in 2007.
When I was diagnosed last October I posted daily as I was off work and going through lots of emotions,was asking lots of questions,and as the months went by I found that I could help others, as always occurs.Now back at work I don’t feel the need to participate as much and although I come and read only occasionally will Ipost when something grabs my attention. It is a fab sight and there is lots of comaraderie
I was a very regular reader and poster last year during all my treatment - receiving (and hopefully giving) support, hints, tips and also fun on ‘chit-chat and fun’. I have not used the site much this year, only to look up specific things, although I did post yesterday as I happened to read a post I felt I could help with. I needed to concentrate on myself to try to get back into ‘real life’ and, to some extent, wanted to stop thinking about cancer.
It is a wonderful site - but I would also love to see a Triple Negative category. I don’t know anyone else who is triple neg but know there are some who use this site - in fact I think I might do a search now to catch up on a thread I contributed to earlier this year.
My husband found this site and used to read it to me I couldn’t even log on! As my cancer has progressed so has my ability to post. So for that I am really pleased with myself. I have made several cyber friends and have met one forum member a couple of times, that has been really nice. As I no longer work I log on most days and it is really interesting to follow women with primary bc and as the weeks go by you notice they dont post as often because they have picked their lives up and moved on. Sadly for us on the secondary forum when we stop posting it is usually because this rotten disease has robbed us.
One issue is time. I’m running a business and being a wife and a mum. (The business really took off after I had BC and as a result I am away quite a lot so I need to spend as much time as possible with my family when I am at home). In addition it takes a long time to look through 25 categories, each with numerous threads and then send considered replies.
Another reason is that as the time goes on the help I can give becomes more limited. Often what people need is someone going through the experience of BC treatment simultaneously or someone who is a little further along the road than themselves. My posts are simply not as helpful to others as they used to be.
Another reason is that almost six years after diagnosis my needs are different from others on the site. The common experience of BC that brought us all together doesn’t mean that we will always feel this way. I’m aware that the way I cope with the uncertainty of the future is very different from how other people cope. So, instead I tend to concentrate on one or two people I have felt an affinity with, usually through personal messages, or people whom I feel would benefit from specific advice.
All this doesn’t mean I won’t post but just that it’s going to be a fairly rare occurrence.
I do not post as I feel vulnerable giving personal feelings/insight on such a public arena. Before I was diagnosed I rarely used forums so do not feel totally comfortable about them. I do find the discussions very useful and perhaps will start joining in when I feel more confident.
I don’t post much now because it is five years since I was diagnosed and I’ve realised not much has changed, except even more people are diagnosed each year. The treatments haven’t changed, there are still far too few surgeons who can perform reconstructions, it’s still a lottery and there has been no progress in learning about the type of cancer I have. in the early days I explained a lot of pathology reports, you now do a leaflet that covers that, so I don’t feel I have much to contribute apart from telling people I’m still alive after five years. I still feel the same way about my surgery, that I was lied to by the surgeon who told me it wouldn’t change the contour of my breast. I think the medical profession still treat us like idiots.
I joined and after a couple of posts was shot down by a couple of people - so I went away and sat under my stone feeling a bit isolated. Also had privacy issues about the site. However I’ve decided the people who shot me down are entitled to think what they think, but aren’t going to stop me making contact with other people and finding like minded people, the support and fellow feeling of others (and the laughs) in the same boat - and also - being here to maybe change my mind about a few things & learn a few things. As for privacy - perhaps I’m a bit braver thinking I might not be here in 20 years… I work for myself though, so am not looking over my shoulder worrying that my boss might be eye-wigging. I tend to be on here more often when feeling a bit yukky, so am fairly uneven, cos I don’t always feel yukky.
I have found the forums very useful for practical tips so I often just read them for that. I started a thread once (when newly diagnosed and feeling in need of emotional support) and I found I was worrying about and reassuring people who answered me. I found that a bit draining so I decided not to do any more posts for a while. I have recently posted two asking for practical advice and I have found the answers very helpful.
I agree with Ms Molly, it’s terrible that search engines should be able to find us by user name. Can the Moderator do something about this? This is such a personal site and I agree with Islay that we are very vulnerable.
I don’t post as often as I am 3yrs down the line with no secondaries but I have a look at least once a week and sometimes post advice/ideas. The best forum from my point of view is ‘After Treatment is Finished’.
I am 2.5+ years post diagnosis and don’t post often - only if I have specific queries. I had reconstruction surgery in September so found that forum really useful. I don’t come on as often as I used to, though it does depend on my mood. I do find the forums a really useful source of information and support.
What would have helped me if there was a little line at the beginning of the thread that said:“To post a reply go to the most recent comment” or " To post a reply go to the end where you can write your reply!"
I have spent ages roaming around til I thought that I would give up. It was only on this short thread that I realized the reply box is at the end!
I rarely post - only if I have a specific question, feel I can really add to a conversation or help someone else. Personally, I also feel like I lack the connection that others seem to have on here because I don’t come to this website very often and so I would feel like an intruder if I jumped into some threads.
I vote to keep the discussions searchable from google. I would imagine that’s how a lot of people find this website - by searching for something they are worried about. Usernames can be made fairly anonymous if people are worried about family or friends finding their comments.
The reason is that the DCIS forum (DCIS is what I had) frightens the life out of me! When I had my mastectomy I was told more or less "The mastectomy will mean your chances of having breast cancer again are virtually nil, no need to test lymph nodes – it’s only DCIS; no need to test for hormone receptor status – it’s only DCIS; come back for an annual check up for the next five years and then we’ll discharge you.
But when I look on the DCIS forum, time and again I see people diagnosed with DCIS saying they had their lymph glands tested (and sometimes found positive), saying they’re having Tamoxifen, frequently even saying they’re on chemo. To be honest, I get scared I’ve been undertreated and given an inaccurately rosy picture of my chances of remaining cancer-free. And I wonder if, in the 4 years since I was treated, they have discovered that DCIS is much more likely than previously thought to return, even after mastectomy, and that new patients are having more thorough treatments.
So basically, I tend not to look because the info confuses and frightens me.
Thanks so much for all your replies on this. I am collating your responses (and we had many) and we will be incorporating your concerns into the way we run the new forums, due to launch early in the New Year.