by Sandy Dikschei
Mum had two aunties who had breast cancer late in life (between 70 and 80 years of age). We remember them as strong women who lived full lives, serving their extended families and the community. My family's 'nightmare' was re-ignited in August 1992. My little sister - this couldn't be true. We were stunned and shocked. As a nurse, this was a foreign concept to me, dealing with a woman so young with breast cancer.
My sister, Judy, was diagnosed just nine months after her marriage to Andrew, my best friend's brother. The disease stole Judy's dreams, her chance to have her own family, and after eight years her life. But before her death, she dreamed of a place of retreat and spiritual healing similar to her bush home in the Mandurang Valley near Bendigo. She wanted other women with breast cancer to find refuge from the trauma of their illness.
In the four years it's been operating, the Otis Foundation Retreat has given many of the women who stay there a profound emotional and psychological transformation. Andrew once said that there was an incredible amount of wisdom in Jude's vision. It is her idea and her legacy. She gave the idea to those she left behind to have something to focus on and to direct our energies to, to help us make some sort of sense about her death. Jude's dream helped Andrew get out of bed every morning for three years.
There are two luxurious units built with the goodwill and donations from the Bendigo community. Over 200 women have stayed at the Mandurang valley retreats and also in the beautiful village of Thredbo in the Snowy Mountains of NSW.
The owners of 'Creekside', Elspeth and Graeme Humphries, have generously allowed Otis to use their retreat as ours, from November to May each year. According to Elspeth, 'The Snowy Mountains are special to me, a place where I am surrounded by the vast timeless elements of nature. The mountains refresh my mind and spirit and I want other women to share that too.'
Our mission at Otis (named after a much loved dog of Jude's) is to provide a sanctuary for those with breast cancer. Among the first to stay at the Bendigo units was Alison Hill, whose diagnosis of advanced breast cancer coincided with the start of the conflict in Iraq. Her story featured on the ABC 7:30 Report. This is an excerpt:
"In the same week that a global war started I found out I had my own weapon of mass destruction, and that was a 9.5cm tumour. It just felt to me like when we had chemotherapy there were all of these little bits of poison going in through your body, almost like searching for bin Laden. Are they going to find that one mutant cell that could trigger the whole thing off again?
I left there a different person. I left there positive, determined, unwilling to see myself as a statistic. The medical profession has the battle strategy down pat. It is slash off the breast, poison the cells, burn the spot, but emotional therapy is something that's not part of that system: When you first lose your breast, suddenly you have, identity issues, femininity issues, sexuality issues. Suddenly you're a short, fat, bald woman with one breast. You're aware that on one hand maybe you should be getting your affairs in order, on the other you are thinking I'm not going to be beaten by this. I'm not going anywhere. So there's that sort of dual torment, I guess, between wanting to be alive and knowing that you might not be.
Something intangible happened there. I don't know exactly how it happened, but I somehow was able to work through lots of issues. To grieve for life that I had lost and to start embracing the life that I was going to be having post cancer, which was a very reduced kind of life. I think it is because it's such a gift and when you go somewhere and it basically has been built for you and you've never met these people, there's a wonderful feeling of belonging. Whatever time I have, it will be a good time."
More than 200 women have stayed at the Otis retreats and the visitors' book is full of similar stories, giving rise to La Trobe University researcher Jan Pascal to launch a landmark study into the psycho-social benefits of Otis. As Dr Pascal puts it, 'It seems to have a profound effect on people. Women do say they come here and have this transformational experience and they understand themselves better and feel stronger and supported, but we want to know in what ways.'
My mother, Joan, sums up her feelings about Otis. 'This isn't a memorial to Judy. She never wanted a memorial. She wanted people who had breast cancer to feel the benefit of what she felt when she was very ill. That's what is happening because it's such a gift and when you go somewhere and it basically has been built for you there's a wonderful feeling of belonging, despite the fact that most women who stay don't know us.'
Mum endured her own battle with breast cancer at age 70, when Jude was still alive. Mum wished she could have taken the whole disease away from her youngest daughter. I remember she gestured towards her breasts one day and said with tears in her eyes, 'What's the use of these saggy old things to me now anyway? Jude still needs her breasts.' These are the torturous thought processes only a mother could have, especially one who is now a breast cancer survivor.
With three retreats in Bendigo, Towong, and Thredbo, and another coming into operation near Brisbane, my sister's dream is expanding and we are going national. Andrew still drives the Otis Foundation, with the help of his wife Mary, a woman of great intelligence and ability in the business world. She has graciously accepted the Burley family is still a part of Andrew's life and we love her for this.
I know that Jude is looking from heaven with great joy in her heart, as her vision and dream is fulfilled. A foundation named after her little dog Otis that is nurturing those living with breast cancer, allowing their souls to catch up.
Sandy is board member of the Otis Foundation and sister of Judy , the visionary behind the Otis Foundation.
--Sandy
