Beyond pumpkins and pink ribbons…
The first is that, through a story I was working on, I got to learn about the tremendous courage, strength and ongoing pain and exclusion of the people living with metastatic breast cancer. The second is that one of the women who touched me along that journey died last month shortly after her dying wish was granted – to reach and celebrate her 40th birthday.
As a journalist with a background in psychology who often writes about nursing, I have pondered and written about the psychological aspect of nursing, and of caring for patients who then die. I have also written about professional boundaries and the difference between crossing them and simply being human.
I come from a family of nurses and have great admiration for their profession. I always say I could never be a nurse because I’d never cope emotionally. But the thing is, as a journalist, I too get to know people, hear deeply personal stories, tag along on deeply vulnerable journeys and, sometimes, feel deeply happy or sad as a result.
Earlier this year before moving back to Toronto from London UK, I attended a powerful visual and sound installation called ‘I am not my cancer’ about the experiences of three women bravely living with metastatic breast cancer. The installation was put together to launch the results of The Invisible Woman survey which included responses from 60 women living with the diagnosis in the UK, all of whom reported feeling isolated and invisible. This makes sense because only 23% of people surveyed in the UK had any knowledge that this population existed.
Many people feel that breast cancer has already ‘been done’ and shift their attention to other lesser known and ‘more deserving’ cancers or conditions. This post is not meant, in any way, to downplay the experience of women living with early breast cancer or with any other health condition. They too are living day in, day out, through experiences I cannot begin to imagine.
But the truth is, while everyone was working to increase survival rates for breast cancer, no one asked the question, what would happen if these people actually survived? Better treatments and higher survival rates mean that people with an incurable form of breast cancer are living where they would have previously died. Their cancer is advancing and spreading, and no one knows what to do with them. They represent an entire population of women who are not being represented by pink ribbons and 5k runs – they are, in large part, ignored.
While they are undoubtedly resilient and strong, they are also suffering, often weak, confused, exhausted, in constant pain and – unlike the early breast cancer community – they are completely out of hope. It’s for this reason that they often feel excluded from the rest of the breast cancer community who are fighting to beat their cancer and might subconsciously (and understandably) not want to surround themselves with women who will never get better and who are certain to die.
But they are still alive, and doing their best with the time they have left. Many women reported that their friends and family were less attentive and supportive when they were diagnosed with metastatic breast cancer than they were with their original early breast cancer diagnosis, and that health professionals often expected them to 'already know the ropes' or were less fussed about them because there was no longer hope for a cure.
This is only a small snapshot of the things I learned about these inspiring ‘invisible’ women who made themselves visible to me. I not only saw them, but heard them - and felt them. And now that one of them is gone, I feel her absence too. This post is in memory of Ismena Clout - and in honour of all those living and dying with metastatic breast cancer.