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If you don't post can you tell us why?

36 REPLIES 36

Re: If you don't post can you tell us why?

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.

Best wishes to you all for the festive season.

Ann

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Re: If you don't post can you tell us why?

I don't look on here or post much nowadays.

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.

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Re: If you don't post can you tell us why?

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.

Love to all
J x

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Re: If you don't post can you tell us why?

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!

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Re: If you don't post can you tell us why?

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.

Re: If you don't post can you tell us why?

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'.

Re: If you don't post can you tell us why?

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.

Re: If you don't post can you tell us why?

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.

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Re: If you don't post can you tell us why?

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.

Molennium

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Re: If you don't post can you tell us why?

deleted

Re: If you don't post can you tell us why?

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.

Re: If you don't post can you tell us why?

Hi,

I used to post often but not very much recently.

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.

Best wishes,

Sue

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Re: If you don't post can you tell us why?

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.

Love Debsxxx

Re: If you don't post can you tell us why?

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.

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Re: If you don't post can you tell us why?

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

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Re: If you don't post can you tell us why?

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.

Re: If you don't post can you tell us why?

HI everyone

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 . All your correspondence will of course be kept private.

Best wishes to you all

Ann

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Re: If you don't post can you tell us why?

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.

Jane

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Re: If you don't post can you tell us why?

I also am not happy that I can put in a subject and my name and google will find it.
That is my main reason for not posting regularly!!!

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Re: If you don't post can you tell us why?

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.

xxx

Re: If you don't post can you tell us why?

Just responding to the question re posting.


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?

M

Re: If you don't post can you tell us why?

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.

Merlyn

Re: If you don't post can you tell us why?

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.

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Re: If you don't post can you tell us why?

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

Re: If you don't post can you tell us why?

Hi hlaura

If you would like to change your user name just send an email to quoting your current user name and what you would like to
change to.

Best wishes

Sam (BCC Facilitator)

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Re: If you don't post can you tell us why?

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 !!!!

Re: If you don't post can you tell us why?

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

Re: If you don't post can you tell us why?

Hi Moderators

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.

Re: If you don't post can you tell us why?

it just takes so long for me to type
and i look up all the spellings for the big words the doctors and nurses use

Re: If you don't post can you tell us why?

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

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Re: If you don't post can you tell us why?

Belinda
that is interesting - I check it out.
Ena

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Re: If you don't post can you tell us why?

P.S moderator

Can you tell me why when I highlight text and click the italics icon it doesn't work?

Sorry, I probably shouldn't ask that here but I'm not sure where to ask.

Thanks,

Rowena

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Re: If you don't post can you tell us why?

Good question, thank you moderator.

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

Thanks,

Rowena

Re: If you don't post can you tell us why?

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

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Re: If you don't post can you tell us why?

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

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Re: If you don't post can you tell us why?

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.

If you don't post can you tell us why?

Dear forum users

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.

Please email

moderator@breastcancercare.org.uk

Thanks very much

Ann