Good Bye

OK I will start with the fact that I am a very straight person. Life is very black and white for me.

I decided to use the forums for support. I have had some lovely responses but the majority of my postings go unanswered. I have no idea why and to be honest wont worry myself over it. All I can say is if you decide to use a forum feel ready to give as much as you recieve and do not get into cliques because it makes others feel very isolated and excluded.

As I say there are some girls on here who have made me welcome but I dont feel at home here or supported so I wish you all well and hope you all beat or keep this horrible disease at bay. My heart felt wishes to you all and good luck.

Lynn

I’m sorry it hasn’t benefitted you in every way and I’m impressed by your straight talking.
I’m pleased you’ve had some lovely responses, I have too.
I agree the cliques can be very exclusive and if you post amongst the regulars, you can be totally ignored. I have found this to be the case too. When one is feeling vulnerable because of this disease, it can be heartbreaking to be ignored &/or excluded. At times, it happens in life and it is with women in the same situation whom you feel you’re connected with to whom you turn. If you haven’t felt heard here on the forums either, it can indeed be isolating.

I’m sure you need the same support as we all do during this journey and I hope you find it. Maybe phoning the helpline and speaking directly to someone will be useful to you. I have used it at times and been reassured. I wish you the very best Signet with your recovery and hope you progress well. It is indeed sad that it is under these circumstances that I am connecting with you. The forum is only as strong as it’s members and by your experience you have highlighted real weaknesses here. I am as guilty as the next user to not connecting with you. I have learnt a valuable lesson here tonight.

Good luck Signet with your health and I do sincerely hope you are supported elsewhere. This is surely a very lonely journey without it.
My thoughts will remain with you. Welsh girl x

Hi Lynn

I am sorry you feel unsupported and find the forums unfriendly. I don’t think that people conciously avoid answering posts but the structure of the forums mean that posts disappear off the front page very quickly. If someone knows a particular thread then they can seek it out but a new thread may “disappear” before anyone gets a chance to respond.

One thread that you might find helpful and supportive is anyone else with liver secondaries, they are a friendly and helpful group and I am sure they would welcome you. a link to the thread is here.

breastcancercare.org.uk/forum/viewtopic.php?f=10&t=10741&p=408096#p408096

Whatever your decision re the forums I wish you all the best with your treatment.

Fiona

Hy Lynn,
So sorry you feel as you do, l can understand it, as few times l have been ignored, but as said previously it is the way of the forum, there are so many comments by people that some hardly get noticed, yes there are the regulars, but good for them that they have connected to others so well. Please don’t give up, there will be a few out there that will value your opinion and you will get a lot of help from.
Lots of Love
Sandra

Lynn -
I am sorry you feel unsupported and isolated.
As FionaM has said the structure of the forum now means that it is extremely hard to keep track of all the posts and things now get “lost” very quickly. A lot of people complained when the format of the site changed and I think those complaints are still valid - these boards just aren’t as user friendly as they used to be. Buddy threads will always dominate the “latest post” section because they have regular contributions.

More people read these discussion boards than post on them and derive enormous comfort from reading about similar experiences and shared info even if they don’t actually post. So it is really important to keep posting I think. And this is a forum for ALL women affected by breast cancer and it saddens me to think that you are not finding the support you are entitled to here.
I really hope that this issue can be resolved for you and I wish you the very best of luck.

Oh I do hope you will reconsider Lynn…I know, as I replied to one of your posts yesterday, just read your reply :slight_smile: that you have had SO much to deal with. The secondaries forum is, I think, a really supportive place. If you post there rather than the various other forums you will, I just know you will, get all the support you need. No slur on the other forums intended but women with secondaries do (sweeping generalisation here!) tend to stick to the secondaries forums as our experiences and how we deal with living with breast cancer and ongoing treatment is often so very, very different from those women with primaries. Fiona has pasted the link to the really friendly and supportive thread for those with liver mets…I just know the ladies there will be so supportive, knowledgeable and kindness itself…do drop in there and have a read. Take Care…and with Love…Private message me anytime…xx

PS…Lynn I realise I’m suggesting you join us on our forums,we can be a secondaries ‘clique!’
Your posting has reminded me of my very first posting, seven years ago. (I was diagnosed stage 4 from the beginning when my hip spontaneously fractured.) I didn’t receive a single reply and sadly watched my post slip down the page. xx

Please think again, I’ve only just started to use the forum this week and have found it to be a great support.

think the problem is that it quite hard to keep a track of what is going on , lots of different threads all the time and finding pages you have read the night beofre and wish to comment on is quite hard to do.

please stay, it will help to dip in and out when you need support !

Victoria :slight_smile:

Hi can i just say that if you click on the top of the page where it says save this discussion to profile, you can easily recoup all topics of interest when you go into your saved discussions when you click on your profile Hope this helps

Anne x

Hi Lynn
*****************Bumping up******************Bumping up**************
like you my sons life is very black and white, so l know how you feel!
Much Love
Sandra xxx

Yes I think its the forum set up. I’m new since last week, and felt the same, but I have not given up yet. My last time was in 2003 and it was different then ( diagnosis, treatments, forums… all has changed)
What ever you decide. Take care and all the best.
Love Maria

Hi Lynn
Just wanted to say that I’ve been thinking about you and hope that you can find the support that you need. I hope that you may reconsider using the forums but you should do what is best for you. I for one will be here to support you as I’m sure many others will be too.

Much love to you
Jennie xx

Hi Lynn

I don’t know where you have been posting but I don’t recall seeing you on the ones that I read. Can I suggest that you start a topic yourself? I am absolutely certain you will get responses. Please don’t leave. I have found this forum invaluable and I am sure you can, too.

Ann x

Lynn

I have just had a look for some of your posts and it appears that you do get replies from ones you start yourself. Maybe, as others have said, the ones in a clique are more of a problem. All I can say is steer clear of them. I don’t think it is personal, just that some people have history with each other.

Please carry on joining in. I am sure you can get back as much as you are giving.

Good luck.

Ann x

Lynn,we don’t want to see anyone leave.I don’t belong to a particular thread either so its hard sometimes if I would just like to “chat”.But I do my best to answer people asking for support and I answered you yesterday as I was incensed that the nurses had left you feeling so scared.
I too have posted in the past and not received a prompt reply and felt it was personal at the time but looking back that was just because I was down and oversensitive.You are having a tough time just now and your head will be all over the place so its natural to feel the world is against you.But its not,we really are all here to support each other.
Please keep posting,remember some new person may be reading the forums looking for someone in their situation to share with and that someone might be you!
Please think about coming along on the 18th,we really are a friendly bunch (slightly mad but friendly LOL!)
Love n hugs
Dot
xxx

Thanks Ann , i didnt know you could do that, so now can keep track of all the threads :slight_smile:

Lynn, just been having a look at more comments on other threads, from what I can see I think a lot of people know each other through meeting at the groups. Where do you live? maybe an idea to meet up with a group. I know for 6 moths I have resisted going to a meetings or being part of the forums becuase it somehow makes it all more real, but have found all the chat really helpul the past few days.

Stay well Victoria :slight_smile:

Hi all

I am sorry you are leaving the forum Lynn, please reconsider. I have never found it anything other than a wonderful place to come to share tears and happiness, worries and stresses. I am not part of any group and have never met any of th women on the forum - although I love dipping into threads where people know each other and making the odd comment. Some of the threads are so funny and some so packed full of great advice. If you have questions about bc this is the place to be.

I do hope you reconsider, I personally would be lost without the wonderful support on this site.

Love to all Anne xx

Hi Lynn,
I don’t use this forum as often as I used to because it seems so vast now. I have sometimes felt my comments have been ignored but at others it has been excellent It was a godsend when first diagnosed 6 years ago. I use another site which is used by fewer people. If you google bcpals you should be able to find it. I don’t remember seeing any of your posts so do not know your situation. I was diagnosed with bone and liver secondaries last year and things aren’t going too well at the moment but I’d be happy to offer support. I did look at the liver secondaries thread but it is such a big thread with so many people on it I found it hard to take part.
My best wishes
Kelley

Sorry you felt like this last night Lynn. I understand I have found it difficult to find a place in the forum but I have found that there are at least four ladies that always seek out and answer posts. I thank those ladies as they help by being there.

I think when we are in the terrible place that you were last night, we go from very low to feeling a bit better, then low again…all over the place. You did get responses and seemed to take comfort from them in your other thread.

I guess you felt you needed more and I think at this stage in your diagnosis then you will feel like that, there is nothing anyone can say to make it alright, but people will try to help.

I often read the threads and feel better but when you shut the page down it all comes back. There is no magic wand but at least you can get moments of calm from reading other peoples stories.

I hope you find the support you are looking for.

I tend to read, rather than post, because, like you, I too have found it incredibly cliquey, so I can fully understand why you no longer want to participate. In fact, I only returned recently, after taking a break-as I (and several other members), were ridiculed and bullied, for not sharing the opinions/toeing the line, of the clique, and their self appointed “expert”.

At a time when we need to be treated with respect and compassion,being ignored and mocked is too much to bear. I wish you well, and hope that you find the help and support you need and deserve.