In 1996 I was a 40 year old secondary school teacher with a ten year old daughter, when I found a lump and was diagnosed with primary breast cancer. The treatment was a mastectomy followed by 6 months of chemotherapy.
Unfortunately, in 1999, aged 43, a persistent cough and a sore hip lead to a diagnosis of secondary or metastatic breast cancer. Like Kay, Jane McGrath (the cricketer’s wife) and Belinda Emmett (Rove’s wife) and many women in Australia, the cancer had spread into my bones and small nodules in my lungs. Breast cancer is the main cancer which affects women and is the main cause of cancer death.
By this time, I was much better informed about breast cancer and I was also told by my oncologist that advanced breast cancer could not be cured, but there was treatment which would hopefully extend my survival. This time round, I really needed someone to talk to besides my wonderful husband and parents. I had to face a life of living with an illness, ongoing treatment and the possibility of an early death. I needed help to realise that I had done nothing to deserve this diagnosis – that I was just one of the unlucky ones and it was bloody bad luck! I needed to meet other women with a similar diagnosis to help me feel normal again. I needed to see that I could still strive to live joyfully despite this major challenge.
There was little or no real organised support for women with advanced breast cancer at this time and in fact some of us experienced a lack of understanding from the breast cancer community. We were women living with advanced breast cancer who could not be cured and apparently this was many women’s worst nightmare. It almost seemed, and still does at times, that it is better for others, if we do not speak out. The emphasis is on being positive, that most women survive breast cancer; and the majority do, thanks to early detection due to screening and advancing treatment. Each year in Australia, over 11, 500 women and 100 men are diagnosed with breast cancer and over 2,600 women die. The most recent stat for Qld is 460 Queensland women died from breast cancer in 2003. The five year survival rate for breast cancer has increased from 71% to 87% over the past 15 years since breast screening was introduced. However, only 68% of women diagnosed are surviving 10 years or more.
Between one quarter and one third of women diagnosed will be diagnosed with or develop advanced breast cancer. This is a considerable minority! Proper statistics are not recorded. Cancer registries just record initial diagnosis and death. We want them to record both primary diagnosis and secondary diagnosis. How can governments and health systems plan for the treatment, care and support of people with advanced cancer without up-to-date, correct statistics of incidence and length of survival?
Luckily for me I had a very caring breast surgeon, Dr Chris Pyke, who told me about this support group which had just commenced and I joined in late 1999. This group, facilitated by professionals and in partnership with the women members, has made a tremendous difference to my quality of life. I realise that I am not alone. It is a friendship circle of women across Qld, who understand what I go though and gives additional, specialised support. This illness is ongoing for me and over time it has progressed. For the past 4 years I had been more on, than off chemotherapy. There really does need to be options of psychosocial support for women like us. This website is an extension of the service of our group and expands the options available. It is very important that these services be funded and I am not embarrassed to make a special plea to our Qld Members of Parliament, present tonight, to make sure these services and others are funded on an ongoing basis. This group is well established, supported by experienced professionals with specialised knowledge and understanding of advanced breast cancer, and based on good, solid psychosocial theory and practice. It is a leader in its field and it has teleconferencing facilities for rural, regional and remote Queensland women. It delivers a lot for a relatively small amount of money. It is a service which Qld Health presently funds and can be justly proud of. Thanks to the foresight of Dr Bronwen Beacham, Mary O’Brien and Pia Hirsch, Queensland has an excellent, ‘state of the art’ psychosocial support service for women living with advanced breast cancer. It helps women like me, live with a better quality of life, so that I can continue to contribute to my family and community. Current women members will be able to help support new women using this website.
What can friends do to help?
If you want to help, ask what would be helpful. Practical tasks – shopping, ironing, mowing the lawn, making a meal, walking the dog, hanging the washing – are often the ones that take the effort, energy or time that someone who is having treatment doesn’t have.