Opportunities and Breast Cancer
There was nothing special about my ‘journey’ with breast cancer (1) but the outcomes have been unexpected and rewarding. New opportunities and challenges arose resulting in my involvement in health issues as a consumer representative- or advocate as BCNA likes to call us. I have met many new people and made new friends.
A Bit of Background
We moved from Canberra to Melbourne in 1996 because of my husband’s job. I had to give up mine as science teacher/head of department in a girls’ college. I had also been heavily involved with curriculum development with the ACT Department of Education. It was a busy life. So, following the move, I decided to take a break from teaching for the remainder of the year. Well, I discovered life after teaching! There was tennis in the daytime, movies too, visits to galleries and exhibitions, time for lunch and coffees with friends. We lived in the city close to Victoria Market and five-minute walk to David Jones and Myers. So that was the end of looking for another job. I loved my new life. But I did feel a little guilty about having such a good time. The slight hiccup when my breast cancer was diagnosed in 2001 resulted in new opportunities to lessen this guilt. I met Lyn Swinburne!
Lyn had come to talk to the breast cancer support group organised by the breast care nurses at Peter McCallum Hospital. She talked about the little support available when her breast cancer was diagnosed and why she decided to rectify this and how BCNA began. So I left that day with a copy of The Beacon and opportunity to become a member of BCNA. How lucky was that!
We moved back to Canberra in 2003. Feeling slightly guilty about having such a good life I decided it was time to volunteer for something where my skills could be useful, l would learn new ‘things’ and be challenged. BCNA's Advocate Training Program was mentioned in The Beacon. My application was accepted and life changed.
The emerging role of consumer advocacy
The importance of the consumer voice in government decisions about health care is gaining recognition. Just think what influence BCNA has had in decision-making leading to better support and health outcomes for breast cancer patients. Repeat this in other health areas. The Consumer Health Forum (CHF) provides such input in several ways through its research projects and advocacy. It runs projects to find out consumer views on a range of health topics, such as Quality Use of Medicines, and reports the findings I am now sitting on some working groups/committees representing BCNA and others representing CHF. BCNA was my gateway to CHF.
In 2004 BCNA asked me if I was interested in nominating for the position of consumer rep on a reference group being set up by the TGA. It was to oversee changes to the rules, regulations, manufacture and marketing of complementary medicines. What a silly question! When teaching I had always tried to incorporate health topics into my courses and cautioned the use of medicines including vitamins, minerals, ‘natural’ remedies and homeopathy. My nomination was accepted and from that one opportunity many others have followed.
I am currently a BCNA advocate on three National Breast and Ovarian Cancer Council Working Groups: Sentinel Node Biopsy (which helps decide axillary node clearance), Bisphosphonates (drugs for treating patients with bone metastases) and Hypofractionated Radiotherapy (alternate schedules, eg three instead of five weeks).
I am also representing BCNA on the ACT and SE NSW Region Breast Cancer Treatment Group. A dedicated group of clinicians treating breast cancer patients is maintaining an audit of clinical practice and patient outcomes. Their Quality Assurance Project- Ten-year report has just been published.
About eighteen months ago CHF was asked to nominate consumer representatives to all the groups charged with planning an e-Health system for Australia. These are managed by Nehta- the National e-Health Transition Authority. I was appointed to the Diagnostic Services Reference Group (DSRG) that deals with pathology and imaging. Luckily there are two representatives, one for pathology and me for imaging. It’s great to have another representative to work with. Their pathology report was recently published and that for imaging will be available soon.
Has life changed?
Well, I don’t feel guilty any more! I spend a good deal of time reading and preparing for meetings and health workshops. My desk chair finds me sitting there several hours every day, writing reports, articles and items such as this one. There is always a ‘to do’ list. I am learning all the time and that’s good for the brain.
I still play tennis, have lunch with friends –but there are fewer movie visits. The pile of books to read increases beside my bed. My ‘book group’ book gets read only in the days before the monthly discussion. I do homework for my French class an hour before it begins, if I’m lucky. The weeds are growing beautifully in the garden. I still try to put my husband and family first. I suppose I’ve just substituted advocacy for teaching!
-- Geraldine Robertson, Canberra
(1) Except of course for the wonderful support of my husband, children and friends and the treatment and care by everyone overseeing my journey so that I am happy, fit, well and disease free eight years later.
