Barbara's Story

I hope my story will be of interest to someone who maybe fears, as I did, what the future holds. In September 1996, my fiftieth year, I was diagnosed with breast cancer which had spread to many lymph nodes. Despite vague illness with apparently peri-menopausal symptoms for the previous ten years, I was totally unprepared to view myself as a sick person. I embarked on the treatment programme determined to get it all behind me: lumpectomy, adjuvant chemotherapy, radiation therapy, two months rest, and I returned to work in July, 1997.

Over the next three years I had inexplicable aches in my shins and ribs. By the beginning of the new millennium I was having occasional back pain and by April, having dreams where I saw myself stuck in dark, threatening situations. Because I seldom recall dreams, I noted these, but without understanding their significance.

I was reporting for regular post-cancer check-ups but really wanted to forget all about that past and, although I knew the number of lymph nodes that had been affected indicated I was at high risk for metastases, I refused to acknowledge that as the possible cause of my weight-loss, sore hips and increasingly constant thirst and faint queasiness. I just could not relinquish the image of myself as a healthy, strong, fit and active person. I was totally preoccupied with my teaching job, my university papers, and a holiday I was planning to have with my daughter on her return from overseas.

My surgeon ordered a bone scan, which showed shadows on the spine. He ordered an ultrasound of the liver, which showed dark patches. He referred me to an oncologist and I cancelled the first appointment.

Finally in late August, after an episode of sudden, frightening hip pain, I went to the second appointment with the oncologist, who told me that if I didnt't start chemotherapy immediately I wouldnt last till Christmas - my liver functions were in disarray and calcium was leaching out of my bones into the bloodstream. There were hard, painless cancerous lumps in the lymph nodes above my collarbone, of which I had been entirely unaware.

I went to the appointment very resistant to the idea of chemotherapy but was won over by the oncologist's conviction that the treatment would provide me with a good quality and probably length of life, and by the effort he made to convey this belief to me in my most unresponsive and hostile state. Later, he told me I would probably not have lasted another month without treatment.

In the three years since then, I've had six different treatments: three chemotherapy, two hormonal, one monoclonal antibody. Two of the treatments resulted in complete hair loss (which for me was the third time), two caused numbness in toes and fingers for a while, two have given me long periods (8 months and 10 months) of relative normality. All have, in their different ways, helped to reduce the metastatic tumours and suppress further growth of the cancer.

I've had periods when my self-confidence has ebbed, and times when I've been very dependent on my health care team, but I've managed to live a happy, even exciting life in our own home. I'm still learning to cope with the ever-present anxiety that is inherent in the knowledge that this life is dependent on a precarious balance between disease suppression and progression, with each progression of the disease meaning a change in routine and lifestyle as well as physical and emotional adaptation to a different treatment and its effects. Nevertheless, I'm very fortunate to have had a positive response to each of the treatments, and to be still here to tell the tale, to enjoy yet another spring, to look forward to another summer and another Christmas.

On my sudden retirement, one of my Year 11 students wrote, 'Nature's rule is to accept a thing completely, then you can avoid its trouble.' Fully accepting my position enabled me to get on with life and these three years of retirement have been enriched by many new experiences and insights, warmed by the continuation of old friendships and by the making of new ones, heartened by the quality of support from family.

Alongside my enduring professional interest in research into teaching and learning has grown a new, lay person's interest in the enormous body of research into the development and treatment of breast cancer. There are legions of people all over the world working on this: at least two of the medicines I have had since 2000 were developed and approved after 1996, when my cancer was first diagnosed, and I believe that we in NZ are fortunate to have effective new drugs made available so promptly.

My workaday world used to revolve around delivering the curriculum to students and assessing their performance in order to meet their learning needs. Now I am at the receiving end in a different system, having my own condition assessed, diagnosed and treated. From a world of teachers, students and parents I move in an out of one inhabited by specialist doctors and nurses and am aware of a hidden host other highly skilled people who work behind the scenes. I have confidence in the ability of our regional hospital to provide thoroughly up-to-date care for breast cancer patients, and am very thankful to have access to it.
- Barbara Retemeyer

Barbara's journey ended in October 2004.

Barbara's Story

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