As the facilitators running the group we are often asked what the group is like. We have a strong sense of what groups can provide, and in particular what this group offers these women dealing with this illness. The Group offers women a sense of belonging and comfort, the opportunity to help others and share experiences. Joining this group extends women’s social support and decreases the isolation they feel as a result of this diagnosis, where the demand to confront the reality of death has suddenly intruded on their lives. And it can instil hope, and in the face of a diagnosis of advanced breast cancer the idea of hope is precious. As Kay says in the DVD; “the doctors tell you you are going to die, the women (in this group) teach you how to live.”
The women are welcoming and pleased when new members join, and offer support and encouragement. The best time to join is early in the diagnosis, when the initial turmoil has settled and there is time to reflect and think about ‘what now?’, when there is time to get to know the others in the group, and time to think about how you want to live the life you have.
Most women who join want to know how other women deal with the illness. How do other women manage this new landscape they find themselves hurled into, what do they do about talking with their doctors and remembering the information they are given, how many times do they have tests and what tests do they have? What tips have they had from the nurses who have treated them about managing the side effects of chemotherapy, or the debilitating nature of pain, and the myriad other new and difficult experiences this diagnosis throws into their lives. Some of the women have been members for many years, and can offer suggestions not only from how they themselves have managed, but also from the pool of information in the group, a heritage from all the courageous women who have been members over the ten years we have been running.
The group offers a space to talk without having to worry about overloading families. Women are fearful about burdening their partners and children, they often feel burdensome enough already. Here they can discuss ways to share with their families, and bridge the gap this fear can create. This can mitigate the need to keep a brave face, which can have the unintended effect of distancing those whose support and comfort is most needed.
Fears of death and dying are topics not generally spoken about with ease and often need practice to address. Not many of us are able to face the fact we will die, and it is relieving to women to have a space where this is able to be openly discussed, often with laughter and black humour. We all have to die, and until we are faced with the inevitability of our own deaths we think it is something that will happen when we are ready, when we are old and have done all we think we would like to do, and we are now willing to say, ‘yes, now I am prepared to die’. But this fantasy is shattered with the diagnosis, so the need to think about death becomes urgent and confronting.
At times this can be a difficult group to be part of, and to run. Women do die in this group, and it is sad and painful to lose someone we have all got to know and admire. But the women in the group look after one another and are supportive of one another, and they are thoughtful and supportive of us too, and grateful for what we offer. They give generously of themselves in a variety of ways, and are inspirational. We all learn from one another, about the preciousness of life, about which aspects of death are the ones that frighten us, what can be thought about and addressed, and which areas we have no control over at all. Is it the idea of dying alone, or in pain, or with things undone that we want to have done? Are there people we want to speak to before we die, are there things we have not taught our children, have we told our partners and children enough that we love them, and have they had the opportunity to tell us, sufficient that we all feel heard? Do I want to travel before I die, or stay at home with family and friends? Death is a part of life. We each walk through life towards death in our own way. What we try to offer in this group is the opportunity for each woman to think about what her life and her death is for her, what she wants her particular walk to look like, and how to accomplish that.
Pia Hirsch
Mary O’Brien
July 2010.
Hand and Foot Syndrome #1
While we cannot endorse any particular brand, one of our women has found these boots, from Arcopedica, very helpful in relieving pain and burning in her feet.