I haven’t blogged for a while but I have been busy volunteering in the breast cancer sector in New Zealand. It is time to let you know what I have been up to.
In 2011, with my second breast cancer diagnosis, I had a strong feeling that I wanted to help others affected by breast cancer. I started by keeping a blog during my breast reconstruction so others could learn what it is really like to go through a have a mastectomy and breast reconstruction (and also to inform family and friends about what I was going through). Here is a link to my breast reconstruction diary.
While doing chemo, I enrolled in a website launchpad course with Serena Star Leonard and set up Breast Cancer Nirvana. I used the name Nirvana as I wanted people who visited the site to feel peaceful and supported while there.
Breast Cancer Nirvana has a few purposes:
- To change the conversation and reduce fear about cancer by sharing and shedding light on what is really like to have breast cancer. I also kept a chemo diary and later a moving forward diary.
- To make breast cancer a bit easier by providing simple and clear breast cancer information and resources for breast cancer survivors and supporters. I wanted to share all my lessons learned so that others didn’t have to learn everything the hard way like I did.
- To provide support, hope and inspiration to those affected by breast cancer. Most women (85% approx.) are surviving breast cancer now. Support and close relationships improve survival. There is hope and I wanted women to know about that.
- To provide tools to utilise breast cancer as a personal development tool (when you are through your treatment). When you are feeling better, there are opportunities to really look at your life differently. My latest Baring it All eBook shares my tools and tips on survivorship and how to manage your health and celebrate your life after your breast cancer treatment ends.
- And lastly to express my unique and creative journey through all the trials and tribulations. We are all unique and have our own voice and journey. BC Nirvana is an expression of my creativity and me.
Some of the main thing that I’ve achieved:
I have written eBooks on topics that I thought would assist others:
- 10 Dos and Don’ts for Supporting Someone with Breast Cancer (for friends and family – bc supporters). This is available for free if you subscribe to my website or for purchase in my shop;
- Chemo and Back Again (this was voted eBook of the week by the United States based kindle fire Facebook group), and;
- Most recently, Baring it All – 33 Tips on Creating a Great Future After Breast Cancer.
Public speaking. I have started doing public speaking for a variety of audiences such as the breast cancer nurses at the Wellington Cancer Society in 2013. In May this year, I spoke at the Nelson Regional Breast Cancer Trust breast cancer survivorship day. It was so inspiring having 90 bc survivors in one room with the laughs, tears and camaraderie.
Pasifika breast cancer projects
I am of Samoan descent and I started to think about gaps in the support systems that I saw around me plus statistics about Pasifika breast cancers survival not always being the best (for example, women not always accepting cancer treatments when offered).
For a few years now, I have had a vision of improved Pasifika bc survival rates. There is lots to do but I am inspired and there is a great momentum here.
In 2012, I contacted Tagata Pasifika and the TV crew came to the hospital with me for my last Herceptin treatment. I wanted people to see what chemo and the chemo ward are really like and hopefully reduce the fear of doing chemo.
In 2012, I started advocating with the NZ Breast Cancer Foundation (NZBCF) and others including Luamanuvao Winnie Laban about Pasifika bc projects. With the NZBCF, we talked through PI research and the need to gain more statistical and qualitative data on the reasons that PI women were presenting late or declining treatment. I felt that something needed to change. We also talked about Pasifika bc support groups and I committed to getting one started in Wellington.
Pacific Sisters Unite – Pasifika breast cancer support group
Since then, there is no looking back. I asked my friend Moera to help organise a PI bc support group in Wellington and we are a formidable organising team – especially with Moera’s sister Anne and our collaboration with Virginia and Chris from the Cancer Society Wellington and Pat Field from NZBCF. Thank you everyone!
- We held a Pasifika BC fono in Porirua in March called Pacific Sisters Unite which was funded by NZBCF and supported by the Cancer Society Wellington. It’s been a fantastic collaboration and there is a lot of interest and resources that have come out of this event.
- I’m proud to announce that we had our first Pasifika bc support meeting in early June – supported by PASIFIKA and Luamanuvao Winnie Laban. Thank you.
- My goal is to ensure that the support group is sustainable and that Pasifika women all over the Wellington region feel welcome and supported. The Cancer Society Wellington has now agreed to fund the venue and facilitation costs (thanks Virginia).
I have been appointed the New Zealand Pacific Island representative of the National Cancer Consumer Advisory Group. I am looking forward to contributing in that role.
Last week, I attended the Auckland Breast Cancer Network Pasifika breast cancer fono. It was really interesting to hear how many agencies are working together to support PI women with bc in Auckland. It is positive to see how much support exists and there is momentum to make things right in the Pasifika community.
At this point, I need to step back and focus on my writing and a day job for a while. I also have lots of ideas for the future but it is pretty hard to make all this happen as a volunteer. However, I am really proud of what has been achieved and feel that I have made a difference.
If you are of Pacific Island descent or know someone who would like to join the Pacific Island breast cancer support group, please contact Pacific Sisters Unite or email me.