A breast cancer diagnosis is often the start of an arduous journey that leaves many sufferers feeling worn down, beaten and at breaking point.
Breast cancer charity Sweet Louise has been offering support to New Zealand families affected by incurable forms of the disease for more than a decade.
Here, five members talk about how their lives have changed since their diagnosis, and how valuable the group’s support has been.
Jo Bhagat (Pictured above)
Jo, 64, lives in Auckland with her husband and has a 26-year-old son. She has been a Sweet Louise member since June 2013.
I was diagnosed with inflammatory breast cancer in 2008 and found out four years later it had resurfaced. I was given months to live but was determined to prove the oncologists wrong.
To begin with I was numb with disbelief. Soon after, I felt lost and scared about what was in store for me as nobody in my family had cancer. I figured it was best to tell my family straight away. Everyone took the news differently. Some took a long time to accept it, while others immediately offered their love and support.
The first thing I did was take a family holiday to the South Island – something I’d always wanted to do. I also took up cross-stitch. I had to give up my job once treatment started, but other than that I took everything in my stride and decided to just live life.
Having cancer opened my eyes to the fragility of life. I consciously started appreciating the kind gestures of others even more than before.
I want everyone to know they should never, never, never give up. Live life to the fullest, give it your best shot, then let it take its course. Enjoy what you have – you might not have it tomorrow.
Noralle Olive
Noralle, 30, has a 13-year-old son and lives with her parents in Warkworth. She has been a Sweet Louise member since June 2015.
I was first diagnosed with breast cancer last year, a few days after my 29th birthday. I had some pain in my chest but thought I had sprained something at the gym. My doctor couldn’t find anything unusual, so sent me away.
It didn’t get better so I went to another doctor, who also couldn’t find a lump but referred me to a breast clinic. Once there, I had an ultrasound and the cancer was quickly seen.
When the doctor told me, it was like being stabbed, like being cut so deep that you’re numb at first but you know it’s bad and it’s going to hurt later. That pain has never stopped.
Learn to slow down
I had a mammogram and was brought back in for a biopsy. Despite the anaesthetic, I remember leaping off the table in pain. A biopsy isn’t just a quick needle, it’s a needle going in many times to each tumour. I had three; two in my breast and one in my lymph nodes.
After the biopsy, I planned to have a cancer-free party. But when I found out the cancer had spread to my lungs and liver, I cancelled it. My whole world came crashing down again.
I remember feeling like I was standing on a cliff with someone trying to push me over the edge. I had to break the news to my 13-year-old son. I kept it factual but positive. The rest of my family knew I was going for tests but it was still a huge shock.
After my diagnosis, I left my job and moved in with my parents. I left New Zealand for the first time to go to the Gold Coast and Sunshine Coast with my son.
Cancer has made me see things in a new way. I’ve never felt so connected to nature. Making memories is far more important than making money. It’s also taught me not to take anything for granted and not to give up.
I’ve had to take time out for myself and Sweet Louise has helped with this. You have to learn to slow down and enjoy what you have now – tomorrow could be much worse. I love how a stable blood result can now be such a celebration.
I still have most of life’s normal stress, but I have an advanced breast cancer diagnosis on top of it. I don’t always talk about cancer with others as it scares people, but I find talking about normal life stressors a nice distraction.
Youth is no barrier
I try to make others aware that breast cancer isn’t always about finding a lump and that being young doesn’t make you immune. I try not to get offended with silly questions or statements as I feel like that’s people just trying to connect.
I get more offended when people tiptoe around me. Cancer is a part of me, but I don’t want it to define me. I’m still me; I still have the same strengths, quirks, weaknesses and faults. I’m just me with cancer.
I can’t change the cards I’ve been dealt but I do my best to make the most of what I’ve got – spending too much time feeling sorry for myself won’t help. My prognosis forces me to think about things no one my age should have to, but it doesn’t mean I accept it.
I wish more was being done for advanced breast cancer and I wish people recognised charities like Sweet Louise, which do so much to support women. If advanced breast cancer was given the funding it needs, then perhaps we could find a cure or at least make it a chronic illness. Newly funded drugs are so important but we’re very limited in New Zealand. These drugs could extend lives and make such a difference to sufferers.
Anna Southern
Anna, 55, lives in Auckland and has a 15-year-old son. She works as an administrator for Breast Cancer Network and has been a Sweet Louise member since April 2012.
Back in 2007, I was having a shower when I noticed a lump in my breast, which I’d had for 15 years, had changed. I had it checked with a mammogram but convinced myself I was overreacting. When the doctor told me I had breast cancer, I was more concerned about picking up my six-year-old son from school than listening to the information I needed to know. I was a single parent, had just bought my first home and was looking forward to doing lots of DIY.
In coping mode
I was diagnosed with multifocal stage II infiltrating ductal carcinoma. I knew that breast cancer could be serious, but I hadn’t had much exposure to it and initially felt confident it just needed to be treated and I’d get on with life. I went into coping mode, focusing on what needed to be done, rather than what could happen.
When I told my family, I was as unemotional as possible. I stuck to the basic facts without focusing on the worst-case scenario.
I let my son know why I was going into hospital (something bad the doctors needed to remove) and reassured him that he was okay.
I had medical insurance, so opted for immediate surgery – a partial mastectomy followed by radiation, which I delayed for six months. My closest friend died suddenly days before I started radiotherapy. He was my main employer, so I also then faced having to look for new work.
Things were fine for two years, then I was diagnosed with recurrent cancer in my left breast and a new cancer in my right. I had a bilateral mastectomy with an immediate TRAM flap reconstruction. I was working full-time for a charity, which was really supportive. My surgery was in December and I had six weeks over the Christmas holidays to recover and return to work.
A year later, another local recurrence was found and treated with surgery and radiation. Then the following year another recurrence was found and I started on hormone treatment.
In October 2012, a CT scan indicated progression of the disease to my lungs and bones. At this point, I reduced my work to 20 hours per week. It took quite a while for me to understand what living with breast cancer meant.
It wasn’t until I met a beautiful woman who had been living with metastatic breast cancer for 16 years and was still in great health that I realised it wasn’t an immediate death sentence.
Living long-term
When I finally joined support networks like Sweet Louise, I came to understand that people do live long-term with breast cancer. I also realised that every single person with breast cancer has a very different story and you can’t compare – you just have to get on and live your own life.
Since my diagnosis, I’ve focused on having a healthier lifestyle: better nutrition, more exercise, fewer toxins in my immediate environment, dealing with unresolved feelings and creating a more supportive community for myself.
My son was accepted into Dilworth School, where he boards, which has provided massive support by relieving some of the day-to-day pressures of being a parent, as well as the financial stress of schooling.
I’m often told that I’m an inspiration, and I hope I can help someone along the way, but I’m just doing the best I can each day. There are still too many people dying of cancer, and there are also a lot of people living with it long-term.
While we are waiting for cures, I think we all have a responsibility to take more care of ourselves, our communities and our environment, because after nine years of living with cancer, I do wonder if we can do a little more to reduce the risk.
Juanita Sullivan
Juanita, 46, lives in Wellington where she works as a service desk analyst. She has four children ranging in age from 18-27 and has been a Sweet Louise member since June 2013.
Four years ago, I found a lump in my breast but shrugged it off because I thought it was a pre-existing cyst. My doctor said I needed to have a biopsy. I remember not worrying about it. At the time I was working and enjoying having a busy life.
My youngest was in Year 10 and his rugby games filled each Saturday. It was always a family event. I have three girls and my baby is the boy. I was social; friends are important to me and five of us had travelled to Rarotonga the year before. I’d just got engaged and everything was humming along nicely enough – no complaints.
Being healthy the key
During treatment, things changed a lot. I couldn’t take my son to his games any more. I think I only made two games that season. Friends became invaluable and came from everywhere. My mother was doing all she could for me. I felt bad for her as we’d only lost Dad earlier in the year.
My kids made sure I wasn’t alone at home when I was going through treatment, and my partner at the time, Pat, was great – my shoulder to cry on.
My weight has always been an issue and, after the diagnosis, my health became even more important. I’ve been trying to get fit for years and I felt like crap after treatment. As a consequence of the chemo, I lost 10kg, but they wouldn’t give me a breast reconstruction because I was still overweight.
My friend Cheryl had joined a fitness group called Big Uppz, and encouraged me to join. It was exactly what I needed. They’re an awesome bunch of supportive people and I lost a further 10kg. The following year, I ran 10km in the Round the Bays event in Wellington. This month I’m doing a quarter marathon in the Iron Māori event and I recently joined the gym, mainly for the swimming pool. I feel stronger now and it’s good to be active.
Whanau and friends
These days I’m travelling more, taking more opportunities instead of procrastinating. I’ve been to Bali and am planning a trip to Vietnam next year. In February, I went to the Prince concert in Auckland, which was expensive but I’ve always been a fan and, well, what the hell!
I’m also going to the One Love festival in Tauranga next year. I go to the movies and out for dinner a lot more. I try to make memories and take loads of photos. It’s all about whanau and friends. There’s a song I like with the awesome line: “I hope you get the chance to live like you were dying.” I feel like that really applies to my life now.
Being a member of Sweet Louise has taught me that I don’t need to feel dramatic about a cancer diagnosis. It’s part of who we are; it’s not a death sentence.
Even though I had a ‘plan’ and felt better for it, my perception was that if you get cancer you die; I’ve had a few close whanau who have passed because of cancer, so no wonder I felt this way. I don’t think we hear enough stories with good results.
Anne Hayden
Anne, 68, is a researcher/writer. She lives in Greytown, has two children and three grandsons, and has been a Sweet Louise member since November 2011.
Around the time of my diagnosis in 2004, life was good. I was doing a creative writing course, my husband David and I had a bach on the Coromandel, which we visited every few weekends, and we had a wonderful dog called Angus, who was a favourite of many of the locals in Devonport, Auckland, where we lived at the time.
Gathering support
One night, I found an almost golf-ball-sized lump in the side of my breast. David had gone to the bach by himself and I’d stayed to look after Angus, who’d had shoulder surgery.
I told one of my doggie friends I met while giving Angus a short walk later that morning, then it clicked – I’d better tell David. He asked, “Do you want me to come home straight away?” I said, “No, I’ll be fine.” I then phoned one of my writing friends, who suggested I ring the breast care service provider first thing and demand an appointment, which I did.
David offered to come with me but I said, “No, I’ll be fine. You have to go to work.” So he did. My appointment was the following day. The doctor didn’t use the word ‘cancer’ once, only saying, “I’m very concerned” about six times. She did a biopsy and made an appointment with the surgeon for the next day.
David was with me when I saw the surgeon, who said we had no time to wait. I had a wide network of friends who we told after meeting the surgeon. I remember spending a lot of time on the phone, sub-consciously gathering our support group around us.
The surgeon told us the diagnosis and that the breast had to come off. I had three weeks to decide whether to have a reconstruction as well. Having nursed a number of people with mastectomies in the 60s and 70s, I decided on the reconstruction and it was carried out two weeks post-diagnosis.
The herceptin campaign
Shortly after that, I started my doctorate – an incredible distraction. It took a year longer than it should have because I initiated the Herceptin Petition calling for the provision of full funding for the use of the breast cancer drug, which was presented to Parliament in May 2006.
Suddenly I became involved in the media without having had any media training. I was asked to join the Breast Cancer Advocacy Coalition’s steering committee, where I became very involved in continuing breast cancer and Herceptin campaigns until I was diagnosed with a melanoma of the eye.
I decided then it was time to concentrate on my stuff instead. I resigned from the committee and my role as chair of campaign group Herceptin Heroes. I also wrote Laugh Your Tits Off! – a little pink book of cartoons with funny captions based on my thoughts and our experiences with breast cancer.
I also made some small lifestyle changes. I changed my alcohol consumption from a glass of wine every night to one to three nights a week. I try to keep my weight under control. I’m very careful about what products I use, personally and in terms of cleaning and laundry products. I eat only a little beef, and have reduced my [overall] meat intake.
Cancer can be a big and harsh lesson that can be avoided to some extent. However, when and if it comes, we all have the necessary inner resources to cope if we believe in ourselves. It’s very important to use those networks, which were invaluable for me.
Sweet Louise is a wonderful and generous organisation that helps you feel special and that you and your family are not alone in your situation. Through meeting other members you are encouraged that all is not lost, and much is to be gained in friendship and kindness.
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