Carolyn's story - Personal stories • Breast Cancer Foundation NZ

Carolyn's story

Although one in nine women gets breast cancer, nobody in my immediate circle of friends or family had developed it. I had what turned out to be a false alarm when I was 20. Having discovered a large lump in my right breast, I was admitted to Hutt Hospital to have it removed. It turned out my lump was benign and I put all thoughts of breast cancer behind me. I didn’t even carry out breast self-examinations. That was until 2005, by which time I was 46.

Then a colleague’s wife died from breast cancer at the age of 42. My older next door neighbour had just finished chemotherapy and radiotherapy after a mastectomy, and I was aware the government had recently brought in free mammograms for women aged 45 to 69. But I was always too busy to have one. That year, 2005, had already started out to be a rough one.

Completely out of the blue my healthy 17-year-old son had suffered a string of violent seizures. He was rushed to hospital – test after test failed to find what was wrong. After he came home, I just wanted to stay at home, be a mum and bake cakes. I took a month’s annual leave and decided to make good use of my time off, doing one extra thing for the family each day and one thing for myself.

As I sat reading the Dominion Post one morning, an ad for free mammograms leapt out at me. The phone happened to be beside me so I rang the 0800 number. I honestly don’t think I would have made the call if I had to walk to the phone. That’s how much I didn’t want to think about it. But Kylie Minogue had recently been diagnosed, and the media was full of it. My daughter had just encouraged me to buy a breast cancer designer T-shirt from Glassons, which had given me a funny, spooky feeling.

Feeling virtuous after making the call I thought nothing more of it. I had heard you could wait up to a year for the appointment to arrive, but two weeks later I received a phone call telling me I could have a mammogram if I could get to the Kapiti caravan within the next half hour.

There was no history of breast cancer in my family and, apart from the stress of my son’s illness, I felt fine. It was a shock when I was phoned two weeks later, and told I needed to go to the breast care clinic at Hutt Hospital. Instantly I felt sick with dread. I knew I had cancer, despite reassurances from the nurse that most women who get called back in fact don’t have the disease.

As my boyfriend Mark and I sat waiting at the clinic, we saw woman after woman walking out with relieved smiles. After I was given another mammogram on my left breast we had to wait. Everything felt so surreal. A ‘star-shaped growth’ had been seen in my left breast (not my right, where I had the other lump out). But they couldn’t pinpoint exactly where it was. Ultrasound failed to pick it up so they couldn’t needle biopsy it. I was sent home and told I’d have another appointment soon.

I sat alone in my house feeling completely and utterly knocked out. I didn’t feel I had enough energy to fight this new battle, as I was already emotionally drained. This seemed too much to bear. The few stories I’d heard or read about the disease had all been horrific and terribly sad.

Finally a friend, Tina, put me in touch with her sister Jenny who had recently had ductal carcinoma in situ (DCIS). I felt more optimistic after talking to her. Then a friend from work who now lived in Auckland contacted me. Sue had had a mastectomy, but she felt great now, and had made positive changes to her life as a result. I felt even more optimistic. I bumped into an 80-year-old woman when walking our dogs on the beach. She is a little rosy apple of a woman, as fit as a fiddle and still plays tennis. She told me she’d had a mastectomy 16 years ago and never looked back. I had had no idea. My neighbour Lynn told me that now her treatment was finished she felt better than she had in years.

Gradually I came to realise this wasn’t a death sentence. The stories from those women helped me brace myself for what was ahead. Another agonising 10 days went by waiting for an MRI. After I’d spent an hour and a half in the MRI scanner the specialist couldn’t find the lump. I went away happy, convinced this growth didn’t exist. But after another appointment at the breast care clinic and more mammograms it was decided I had to have an operation. They couldn’t biopsy it any other way. The operation was to be just a week before we had a holiday booked in Samoa with all our five children. To get the children together for a week away amid their busy schedules had taken months to organise.

The nurses were wonderful and reassured me it would be fine, giving me special waterproof dressings for my wound. The operation was a breeze. I was in and out of hospital in one day, with hardly any discomfort. We went to Samoa and had a blissful time. It seemed especially poignant having all my children together. I refused to dwell on what the biopsy would find.

The appointment for the results was scheduled a week after we got back. Yes it was cancer, but it was only stage one. Yes it was invasive, but it was very small. All in all I was lucky. But I would need another operation, an axillary clearance to remove my lymph nodes to see if the cancer had spread.

Friends came to visit me at home. They brought lasagne, carrot juice, chocolate, books, bunches of flowers and even a rose bush. After you have lymph nodes removed, you are not supposed to have anything to do with roses as the thorns can prick you and cause lymphoedema, a permanent swelling of the arm. My friend Marie had thoughtfully brought me a thornless rose bush. A district nurse came to see me daily to check the drain I had under my arm. I came to hate it, with its leaking pinkish, then yellowish, fluid. I thought it was causing my pain, which never seemed to abate.

If the cancer had spread to even one of my lymph nodes I would have to have chemotherapy. Feeling more nervous than before any exam I had ever taken, Mark and I went for the appointment that would tell us if I had to have the dreaded chemo or not. We were elated when we were told the cancer hadn’t spread. The fact I had to have radiation for six weeks at Wellington Hospital seemed neither here nor there. Friends and relatives were all delighted, and most of them thought the problem was now ‘over’.

Two days before my radiation treatment was due to start, Tim suffered more violent seizures. For the first week or so of my treatment I was lost in a blur of worry and fear – he was home from hospital but I hated leaving him to go into Wellington. I was terrified he’d have a seizure while I was gone.

Gradually things got better. Tim’s medication seemed to stabilise his condition. I was coping well driving myself in and out of hospital every day and the treatment began to take on a soothing rhythm. Every morning I left home at 10.15, and I was usually back by around 1 pm. Some days I met my other son Joseph, who was flatting near the hospital in Newtown, or a friend for lunch. The radiotherapy itself only took around 20 minutes a day. I felt nothing during the whole procedure. My breast got red and itchy after a while but fortunately didn’t ulcerate.

I took a strange sense of pride in the fact I didn’t need anyone to drive me to hospital, or help me at home. I was saving up my requests for when I thought I would really need it at the end. Although I wasn’t going to work, I pretty much carried on as usual both at home with the children and socially. Some nights I looked in the mirror before going to bed and felt shocked at what I saw. My skin had a ghostly pallor with a yellow tinge and there were huge black marks under my eyes.

It wasn’t until afterwards that I realised my staunch independence and refusal to slow down during radiation probably wasn’t the wisest course of action. Illogically, I felt resentful that I’d done it all on my own. Many of the women I had met in the waiting rooms had a roster of friends and family driving them in and out, or making meals for them. I had turned down all offers of help.

On Boxing Day, just a month after my treatment was finished, my fit, young-looking mother had a severe stroke. Every time I went to visit her in Wellington Hospital I passed the cancer centre where I had my radiation. Each time I was surprised to find deep feelings of sadness for myself wash over me.

When I look back, I’m amazed I still went ahead with my annual New Year’s Eve party. In spite of everything, I really enjoyed it. Mark’s champagne cocktails may have helped!

I can honestly say that the treatment from start to finish was incredibly straightforward and manageable (even with the lymph node pain). The worst time for me was actually before the treatment began. It’s the fear of the unknown that makes those first few weeks a roller coaster of dread and hope. Once the diagnosis was made, I always felt I was in safe hands, and well cared for. Many times people went beyond the call of duty. There are many complaints about our hospital system. As a journalist I come to know of more of these than most people do. But when our system works, it works very well indeed. I can honestly say that the breast cancer care was absolutely fantastic.

People have asked me if I’ve ever wondered, ‘Why me?’ There is so much breast cancer about nowadays I felt it was more a case of ‘Why not me?’ It’s perhaps not the easiest way to change your life, but for me it has been a big wake-up call. I now take much better care of myself and I don’t always put other people’s feelings or needs ahead of my own, as I usually did.

During my treatment and operations I continued working as a television journalist, using the sick leave I had acquired over 23 years with TVNZ. After I returned to work permanently I suffered repeated infections in the site where my lymph nodes had been taken out. I took several months’ unpaid leave. During my time off I had to have another operation to fix the cause of my infections.

Ironically, at a time when I had no income, I decided to extend my mortgage and renovate my house. I created a new bathroom and, best of all, a peaceful bedroom with a sea view. I painted them myself. It was a boring, arduous job (I am now, quite literally, a one-armed paper hanger as I have to avoid repetitive movement in the arm without the lymph nodes), but ultimately very satisfying.

After returning to work for another year, I finally decided to take redundancy. After years of fretting about making enough money to pay the bills I now feel surprisingly relaxed about it. I used the redundancy payout to take all the children on holiday to Fiji, along with Mark and his girls. It’s only money after all. Experiences are so much more important to me now than saving for a rainy day.

At the moment, I feel like I am living my dream lifestyle. I have just finished a year-long creative writing course, where I completed a very shaky first draft of a novel. And I wrote this book. It has been an amazing privilege to talk to these extraordinary women and write their stories. I have learned more from them than I could ever have learnt from a whole library of self-help books.

Every single day I wake up I am thankful. My daughter is the only child left at home now. I love the peaceful, harmonious life we have. Both my boys are at university and I see them as often as I can. Tim’s seizures have stabilised thanks to medication. I am not nearly so worried about the distant future, and much more interested in the present. I no longer sweat the small stuff (well, I try not to), and there is almost a magical quality to the time I spend with the people I really care about. I walk my dog on the beach every day. I try to meditate and manage to bake a few more cakes for my children.

I read more books, and go to more live music. I have planted a vegetable garden for the first time since I was a child. I am much, much kinder to myself, actively trying to silence the ever-present critical voice in my head that has told me all my life to work harder, try harder, be better. I am trying to replace it with a voice that praises my efforts and likes what I do and who I am.

I feel incredibly lucky to have kept my breast, my hair and my life (at least for now)! The cancer was caught very early. My story has inspired many of my friends and even acquaintances to have mammograms. Caught in time, breast cancer is nowhere near the nightmare many women fear it is!

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