Suze J - did you go to the meeting? was it organised by GOSH? was it an information evening for BRCA1 and 2 carriers?? i went, and thought it was really interesting and very informative. i also met some lovely ladies during the discussion group session afterwards (group 3). i wonder whether we went to the same talk and perhaps you were in my disucssion group? my dad (who is also a brca carrier) and my hubby also went, but they were allocated different discussion groups.
also, after hours of agonising, taking lots of advice and many sleepless nights - we decided to speak to the children a couple of weekends ago.
actually, the reality of the discussion was far worse than the prospect of it and i cant tell you the relief that we both feel having got that conversation over and done with. its early days i know, but they all seemed to cope with the news very well. it was summed up quite nicely by my son (12) when he said......'well, i think its really great to know this news mum, your family have been living with this for years, and didnt know - if you had known about this mutation then your cancer might not have been so big - now we can all protect ourselves as the doctors will keep a close eye on us wont they.....AND theyre making such big advances in genetic medicine mum, it will all be very different for us in about 20 years'......ha! my husband and i were blown away by the maturity of his attitude and comments.
i felt the following really helped preparing in our talk with the children:-
1) not rushing into the conversation, giving us time to come to terms with the discovery ourselves, before sharing it with them (i was determined not to become emotional and to turn the news about the discovery into a positive i.e. this new knowledge is power). this positive attitude/approach from us (which incidentally we also used when we told the children about my breast cancer diagnosis last year), really helped them remain positive and receive the information in a calm and measured way.
2) we wanted to strike a good balance between providing them with some information, but not providing too much, we also wanted to make sure we didnt accidentally leave out any important info - so, we did a lot of homework, and used the Royal Marsden document (and other advice found on the internet about talking to children about hereditary genetic mutations) to help give us a framework - or 'agenda' to use for our discussions with them. this was essentially a list of pre-agreed bullet points that we worked our way through. this meant our discussion had structure and it was therefore easier to stick to a pre-agreed 'message' that we wanted to give them. (happy to give a copy of these notes to any1 if yr interested - PM me)
3) we sat all the kids down together and spoke to them collectively (as we wanted to encourage an open forum/discussion) - but afterwards, some 4/5 hours later, we spoke to the children individually, to check their personal understanding of our discussions, to make sure their understanding was correct and allowing them to voice any particular concerns that they either hadnt voiced before or had been playing on their minds.
4) before we told the children - i had a quite word with key members of staff at their respective schools and warned them about the conversation that we were planning to have with the children. this way, i was able to ensure that they would keep a close eye on them and enabled me to check if there were any specific mechanisms in place, should the children struggle with the news. i also provided these members of staff with a copy of my notes, which ensured that should the children want to talk to teachers, they were receiving a consistent message from us all.
so, all in all, it went really well and im so glad that weve now had the conversation. all kids dont seem bothered as they feel that for them, 'this' issue is a lifetime away - and theyll worry about it as and when they need to and they dont need to now (phew!)
now - ive got to start tackling the issue of deciding what preventative surgery and when!
