on Sep 16, 21

Giving support after a devastating diagnosis: "You’re not alone”

The Good Registry is proud to support the Breast Cancer Aotearoa Coalition (BCAC), which aims to improve the wellbeing of the 3,000+ women who receive a breast cancer diagnosis in Aotearoa each year.

“We know it’s quite a devastating diagnosis to receive,” says BCAC treasurer Louise Malone, “but we just want those women to know, ‘You’re not alone. Many other women have been through this experience and come out the other side of it.’ And we want to support you and make you feel you’re not alone.”

The volunteer-run organisation, founded in 2004 by breast cancer survivors, relies on support and donations from groups like The Good Registry to provide support services to women across the country.

Part of their service includes distributing support packs to women who have recently received a breast cancer diagnosis. These ‘Step by Step’ packs include an information booklet of  “up-to-date information about what sort of treatments might be offered to you,” says Louise, “and just good in-depth information, all based on evidence, all fact-checked and based on reliable information.”

This information is so important to the women, BCAC Chair Libby Burgess says, because, “Information is power, so if you understand what’s happening, you’re well informed, then you can make good decisions about your treatment and care.”

Every pack also includes a diary for the women to use for future appointments and planning.

“When you get a breast cancer diagnosis, you have to see lots of different specialists, and it’s quite good to have something to help you organise all those appointments and all the things they ask you and what questions you’ve got,” Louise says.

The third item in the pack is a journal, which Louise says they receive positive feedback about.

“People tell us they find that really useful for recording their feelings and their thoughts and to get that sort of emotional stuff recorded in a place is helpful. Some people like it just to write questions they want to bring up with their doctors and that sort of thing,” she says.

The journal has also been used by some family members, says Libby, “to write their thoughts and feelings and their experiences as they go through your breast cancer diagnosis, because it impacts the whole whanau.

“People say it’s a fantastic, empowering resource that really helped them through their breast cancer journey.”

A $20 donation through The Good Registry covers the costs of distributing a support pack to one woman who has recently received a diagnosis. BCAC was able to send out over 1,200 packs in the last year thanks to the kindness and generosity of the givers at The Good Registry. BCAC has received more than $10,000 through The Good Registry. 

As BCAC is volunteer-run, with just one part-time employee and no premises, donations like those through Good Registry allow them to provide these important services for women in need. 

They also run and facilitate private member groups that allow women to build a community amongst themselves, as well as advocating and pushing for improvements in the health system on behalf of the community and communicating with specialists all over the country.

“It’s really important that there is a good, clear voice from people who’ve experienced breast cancer in those rooms where decisions are being made about what sort of services should be provided and how well they’re going,” Libby says.

Louise says the partnership with The Good Registry fits well with their organisation, as they are committed to really making a difference in the most efficient way they can.

“We really rely on something pretty straightforward, pretty efficient, and the super idea that is The Good Registry just runs in such a streamlined way, just gets the support from people who want to make a difference in the most efficient way - straight to the charity that can do something to help others,” she says.

- By Ellen Sinclair 

 Breast Cancer Aotearoa Coalition resources

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