Hi Blossom,
I completely agree with your comments about it feeling like there is no one in charge. I felt the same. I think for many women this is where the breast care nurse comes in. It is a bit of a postcode lottery or pot luck in terms of how resourced services are in any specific location though. It sounds like you may have missed out on having a breast care nurse.
When it comes to breast reconstruction we can be really disconnected. There is no one place to get good information and advice. And i find this incredible, but started to understand that resources are so stretched and organisations dont focus on the minority of 8-12% of women having mast and selecting reconstruction.
This is the reason behind starting the breast reconstruction online group. Its a small thing with potentially a big impact for women who find it. I wish it was there for me. II think it is really up to us women to spread the word and try to help each other get informed. That is more likely than changing the views of the health professionals I think, or at least its something we can control and choose and immediately impact on.
I am so sad for women who dont get the contacts or the information they need for any part of their rollarcoaster with BC, it also makes me angry that health professionals can be ignorant of a womans needs and not inform or refer to known services. I am not sure what the solution is so I just muddle on doing what I think might help. At every opportunity i try to spread the word about BCNA and the support and information they offer, so that when people are with their GP they get the referral at that time, it can make such a difference. I believe that BCNA reach about 85% of women with BC counting the My Journey Kits sent out. BCNA have been around 15years or so, but I was oblivious until I got BC, we just dont know what we dont know.
Louie
