On behalf and in honour of my mother
by Tamar Paluch (aged 26)
On our fridge, there is a clipping from October 2007. It is titled 'Runner beats breast cancer' - a short piece on Kerryn McCann's triumph at the time. My mother collected many such clippings announcing that this celebrity and that had 'beaten' their cancer. Reading these reports upset my mother every time. She took issue not just with the language - 'breast cancer survivor'; and with the battleground metaphor; she also took issue with the false hope that this language evoked well before the established timeframe for a clinical 'all-clear'. Earlier this year she wrote, 'Having lived with breast cancer for the past ten years, I never called myself a survivor even at times of remission. Now, at an advanced stage of the disease, I certainly do not consider myself to be losing [a battle]'.
These were not the words of a woman without hope. These were the words of a woman who chose to live.This was a woman whose artwork was politely declined for entry into a cancer support organisation's art competition. Too confronting. Who was asked by her breast surgeon at the time to please keep her bald head covered in the waiting room. Too confronting.
A woman, who at the end of her life last month, was told by her phenomenal doctors 'We've learnt the hard way with you - you don't conform to any of our expectations'. She broke all the taboos about illness and dying - speaking frankly about what was, no illusions about what was not to be despite the deep pain that it caused her to know that her time with us was limited. In doing so she helped all those around her to come to terms with her advanced illness, or the illness of their loved ones, and its inevitability.
Yesterday, Lyn Swinburne (chief executive of the Breast Cancer Network Australia) was quoted as saying:
'But for some of us, that whole vision of fighting and this being a battle isn't actually something that's terribly helpful, because its almost like Kerryn, in passing away, has lost her battle. She didn't actually lose anything... she had a terribly aggressive type of cancer and no matter how hard she fought, it wasn't successful'.
Yet in that very same article the journalist wrote 'she won her fight with the initial disease'; and we will, no doubt, continue to see such language in the days that come. The media continues to foster this culture of win/lose, live/die.
Society needs to re-evaluate how we talk about these women and their experiences; especially for the sake of those who are at the end of their journeys, but also for everyone who is trying to support someone at any stage of their illness. Swinburne was right to say that the battle metaphor is not useful. It contributes to a culture of platitudes 'What a survivor! You'll beat it!'; where women are made to feel as though they could always try harder.
Earlier this year my mother wrote:
'When do you stop being a survivor if you are diagnosed with metastatic disease? And what of those women who do not survive? Have they not tried, not fought hard enough? Did they not run fast enough in their race for a cure? When did they stop being a survivor?'
Recently there have been some confused attempts to describe women as breast cancer sufferers rather than survivors. Surely we should do them true justice & honour, call them women living with breast cancer. Where living is the operative word, not cancer.
The BCNA is to be congratulated for their joint initiative with beyondBlue. They very sensibly recommend 'Spend[ing] time with people who make you feel good. Let people know that you want them to listen rather than give advice or make you feel that you need to be 'positive' all the time'. However, in the depression factsheet there is only one sentence which refers to 'dealing with the uncertainty of illness and imagining the worst'. Fear, grief, advancing illness, dying- these are all issues that people living with cancer will grapple with and confront. We, as health professionals & support organisations, need to work on developing a language for this part of the journey - this part of life - too. It was put to us so eloquently in a letter that we received from a man whom my mother befriended during one of her hospital stays. She supported this man and his dying mother in her final hours 'I've never met a person like Tova... She saw through my soul, my mother's and the hypocrisy of a society's denial of death in the reality of our lives'.
My mother would have mourned Kerryn's death, as she mourned Belinda's & Jane's earlier this year and those of so many women around her. But she would have asked - what have they taught us? And what can we all learn?
These are not women who succumbed or lost their battle. These are the women who teach us how to give, how to love and how to live; whose spirit is indomitable and their presence, in life and in their passing - electric. For this we celebrate them.