I have been talking about doing this for several months now with the women I have met in New Zealand and Australia. I had been collecting emails from the international IBC mailing lists I belong to, but had been too caught up in my own life and health to do anything about it. With joining the committee of Breast Cancer Aotearoa Coalition and knowing if we started the group they would support and publicise it through their networks, it gave me the impetus to put the idea into action. I sent out emails to the addresses I had plus sent a message though to the mailing lists to pick up any ‘lurkers’ I may not have contact details for. Within 4 days I have had positive responses from just about everyone and as of today we have 13 members. It is so exciting to be part of this, our hope is that we will be able to link up more with women who are newly diagnosed with IBC so they dont feel so isolated and alone. Belonging to the international forums is good but there is a need for a more localised network, one that understands how our health systems work. With Inflammatory Breast Cancer being rare but also one of the most aggressive forms of Breast Cancer, you can feel that you are the only one dealing with it. I was lucky that my breast surgeon put me in touch with L , a long term survivor, but most women with IBC dont get that.
Hopefully this network will give them that chance.