Secondary Live Chat

I think this is the first time I have ever started a topic!

I posted to the ‘sticky’ about the new look website tonight, but thought I would raise it here as well.

Am I being a bit of a misery? I have found it very frustrating when others have come into our LiveChat sessions who do not have Secondaries. Over the months there have been several occasions when this has happened, A male partner, a daughter, individuals who have primary bc etc.have appeared in the chat room, and I feel the Moderators have almost been reluctant to make the position clear at the time this happens. I feel that those with Secondary breast cancer have so few opportunities to be with just others that are in the same position as we are; where we can share our concerns without having to be careful, without having to offer support to others who are not at the same stage as we are. We only have this one opportunity a week for one hour and it is very precious. I recognise that it must be difficult for the moderators to vet every person who comes into LiveChat, but sometimes it is not difficult to spot the misfits. I have noticed that some of you are much kinder than I am - and seek to help when this happens. But surely this is what the forums are for, not the specific LiveChat sessions.

Ok rant over. Maybe I shouldn’t come into LiveChat!

dawnhc

I have not been in the live chat room in recent weeks as I have been in hospital then been recovering/asleep but I must say that I agree with Dawn and feel that the chat room should be open to those with secondary cancer only rather than the realtives of. I have had some lovely chats with daughters of women with secondaries but wondered if it might be more appropriate for a seperate chat room for this. I also feel sometimes that husbands of those with secondary cancer enter the chat room and tend to listen rather than participate and I feel that if there were a number of husbands on any one evening I would probably feel more inhibited about subjects I talk about.

Of course this is a difficult situation for all of us involved but I agree with Dawn that there should be just one place exclusively for those with secondary cancer to discuss our hopes, fears and side effects.

Angee

Hi Angee,

My rant is mainly because of what it states on the website re: Secondary Live Chat:

This session is only open to people with a diagnosis of secondary breast cancer,
that is when the cancer has spread to another part of the body.
Anyone who doesn’t have secondary breast cancer will not be able to participate in this session.

and the fact that the moderators do not enforce this.
If it is a problem identifying who has secondaries then I hope the new website will provide them with the means to do so.
It would be great if there was a session for those family & friends, but maybe there would be a need for a sprinkling of members with bc to whom they could talk during the session, besides the nurse/moderator. It’s never easy to get the balance right but if there are stated guidelines as to who the sessions are for then they should be adhered to. I don’t see why they can’t ask when someone enter chat - if they are not known “Hi xxx, welcome to 2ndary Live Chat, may I ask if you have Secondaries”. If I can spot them surely the mods can.

There you go - I am off on a rant again!

dawnhc

One of our dear ex members (unfortunately no longer with us) would spot anyone new entering the chat room and immediately quiz them over where their mets were and what treatment they were on. It used to make me laugh - and soon weeded out any interlopers.

Jenny

Hi Jenny,

Yes I have been know to ask the questions too! and drawn moderators attention to the fact on occasion. My frustration is that action is not taken before members start asking the questions. I cannot see that it is a problem for the moderator to ask the question as soon as a member appears in livechat who is not known to them. moderator. Surely part of being a moderator - especially on LiveChat is to familiarise with who is who, and if in doubt ask. I appreciate that not everyone with secondaries accessing the site actually posts.

dawnhc

I haven’t been in Live Chat recently but do totally agree with you, Dawn. I have found though in the past that I can feel inhibited about saying things particularly when chatting to those people supporting mothers with sec bc. I seem to be offering reassurance and support rather than it being a mutually supportive “thing”. There obviously isn’t a separate Chat for relatives (and perhaps that is something BCC could consider setting up as they clearly have needs/concerns etc) but I would be happier if Secondary Live Chat was kept as it was intended - ie for those with a secondary dx only.

I actually had a email from one of the moderators several weeks ago asking my views on whether Live Chat should be open to relatives of those with secondary bc. I responded then saying I didn’t want it to be opened up in that way - was I alone in responding that way? Or was this a case of seeking views and then not acting on them?

Kay

My views were not sought on that Kay :slight_smile: I wonder why. I think they may already know LOL. But I was asked months back now if I thought it would be a good idea to put a notice up in the Chatroom saying it was only for those with Secondaries. I think this happened once or twice even. But I think it needs the personal intervention of the moderator at the point a person enters the LiveChat, before they become involved in the conversation.

dawn

Just wanted you to know I totally agree with the comments here. I already feel inhibted about the live chat thing (have looked in and then jumped straight backout) and not sure I would want to particpate ever knowing that people without secondaries might be in group. I hope that doesnt sound unpleasant or unhelpful - if I came on to the chat would want to be sure its a ‘safe’ environment.
cathy

I too agree with your comments. It is a difficult subject but I too feel that people with secondaries need a totally “safe” environment in which we feel free and uninhibited to share our feelings. I have found myself offering support on the live chat to relatives while feeling anxious about my own worries myself and really bottling them up. I certainly feel that I do spend a lot of my life at the moment trying to be strong for those around me and feel really although it doesn’t come easy to me I should be able to feel really able to admit my true fears and worries on the live chat without having to offer support to others not with the disease. Hope that doesn’t sound selfish.

Like Kay, I was contacted a while back asking my views on relatives of those with secondaries using the chat room and I responded. I agree with AnneS about feeling you are offering support to other people’s raltives when you have come on the chat room to find a mutually supportive environment.

I have been plucking up courage to join the secondaries live chat - I know its time as I was annoyed with myself for missing the last one due to feeble excuses. However, I think I will be reluctant to come on line if people are not in a similar sittuation themselves. Selfish I know - but sometimes we must be. I will give it a try. Everyone of us is a daughter, many mothers and many OHs. Some of us are ideal for offering advice and support to those close to secondary sufferers, but I am no way ready for that - I can`t even offer support to primary sufferers anymore as I feel their sittuation is now so far removed from mine .

I think the system where a close one can post a normal message and wait for a message from someone who feels ready/able to reply as a normal forum is ideal. From my experience people reply really promptly and well with great advice in the normal forms available.

TFN

Jane