Sweet Louise, caring for women
Words: Bridget van der Zijpp
Photography: Supplied
"One Tuesday, in early January 2021, I found out I had breast cancer, but that it was curable. By Friday of that same week, I found out I had breast cancer that was terminal. Treatable, but not curable."
At only 38, Karen Barnett's staggering diagnosis was both immediately shocking and completely life-changing. Battling through the toughest time of her life, she was introduced to the charity Sweet Louise, whose kaupapa is all about stepping in to offer caring support for women like Karen who find themselves facing the worst possible news.
'Members' of Sweet Louise all have one thing in common: incurable breast cancer. They generally find out about the organisation through their health professionals, such as an oncology nurse or doctor. The charity's wraparound support framework includes such things as appointing personal support coordinators; providing hardship vouchers; helping with meals and housekeeping; organising fun family outings; helping with social contacts and medical appointments; and arranging regular peer group meetings.
"At the Sweet Louise support meetings, it's a safe place to check in with others, but also with myself," Karen says. "Being in a room with women who are at different ages and stages in their own journey, it shines a light of understanding. They meet me where I am at. I feel l am seen for who I am, the person and not the cancer."
Sweet Louise was established by Scott Perkins in honour of his wife Louise, who lived with terminal breast cancer for 10 years. Determined to live as well as she could for as long as she could, her positivity left an indelible impression on many.
"Louise hated the fact that so many of her days were dictated by doctors' appointments, scans, chemotherapy, radiotherapy," says her sister Janet, "so she filled any gaps with lunches with friends, getting her hair done, having massages, facials, morning tea with family, going to parties, planning functions. She was very much the life of any party." After her passing Scott brainstormed with friends and family, looking for the best way to both honour his cherished wife and assist others in the same situation.
With the help of a large founding donation from Deutsche Bank, Sweet Louise was established 20 years ago and began supporting women in Auckland from offices in Eden Terrace.
Since then, its services have been extended throughout the country. Sweet Louise's nationwide team of 11 support coordinators have mostly come from within the health sector. Auckland-based support coordinator Nadine Morton has a background in occupational therapy and counselling.
"Every day is unique," she says. "We will usually visit someone at home or at the hospital and often the first question is: 'How can I help?' Then we listen. We help in whatever way a member needs." Nadine says that the women they see can often feel shunted from hospital departments and to endless appointments with strangers.
"Sometimes women can be so consumed by pain and exhaustion that even simple things become difficult. I might help a member organise an appointment with their oncologist or contact family members for them because they need support. Other days I might arrange a day out so women can enjoy precious time with their children. That gives the whole family a real boost."
Every year the organisation spends around $1.5m on their members' well-being. Sweet Louise doesn't receive any government funding, relying instead on donations and fundraising. One of its cornerstone fundraising events is the annual Walk 50k this May, where supporters take on a walking challenge that can be done as a solo activity, with friends or as a team. The event has its own website and Facebook page, with registrations opening in March. Now in its third iteration, in the past two years, thousands of walkers have banded together to cover over 300,000km, raising in excess of $850,000.
The charity actively encourages fundraisers to have fun, and alongside regular donor-giving others come up with their own uniquely tailored ways to help them meet funding goals. During 'Sweet October', where supporters host their own fundraising tea parties, one participant, Malia, chose to add a Pacific spin, pairing up with koko, the traditional hot drink of Samoa, and naming her event Sweet Koko-tober. She hosted about 60 people at her party and raised more than $4000.
And Karen Barnett didn't let her diagnosis hold her back when she decided to bungee-jump off the Auckland Harbour Bridge to raise funds on Metastatic Breast Cancer Awareness Day.
"I didn't have a choice to get cancer, but I can choose how to respond to it," Karen says. "I choose to make the most of the time I have. After my diagnosis I decided to take life by the horns. Bungee jumping was well outside my comfort zone, but I want to practice what I preach. To live more and fear less!"
Janet thinks her sister would be proud of the support Sweet Louise offers to its members and how it is helping other women in a very practical way to also live a positive life.
Sweet Louise
1G/29 Karaka Street
Eden Terrace
Phone: 0800 793 385
Website: sweetlouise.org.nz
Instagram: @sweetlouisenz
