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I Have Stage IV Breast Cancer But Breast Cancer Awareness Month Doesn't Represent Me

13/10/2016 17:04
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Breast Cancer Awareness Month has barely registered on my radar this year. More than 10 years ago I was treated for primary breast cancer with the full works: mastectomy, chemo, radiotherapy, hormone therapy. Then two years later the cancer came back in my liver and bones. Once again I had gruelling chemo, but this time I also had a surgical procedure on my liver that treated the ten malignant lesions growing there. Since then I've been on a combination of drugs to block the oestrogen circulating in my body and strengthen my bones, and that's worked for me. It seems that my hormones were on a suicidal mission to get me killed, but as they continue to be neutralised by the treatment I'm on, my progressive disease hasn't progressed.

My last experience of chemo and surgery was more than seven years ago. Today, I am very lucky to be able to say that my cancer registers on my life via two little pills taken daily, and six monthly CT staging scans to check my metastatic disease is still behaving. So I'm not being hard-hearted and selfish when I say that Breast Cancer Awareness Month means less to me now. It's just simply that I've lived with cancer for so long that as 2016 arrived and my health stayed stable, my aim has been to stop defining myself by my own cancer diagnosis.

When you get told your cancer has become metastatic, the terminology that goes along with that makes you feel like you're prostrate on the ground with a faceless assassin's boot on your neck as you wait for the inevitable. Those difficult words that define our understanding of stage IV cancer are on a sliding scale of shittiness, with 'treatable' at the best end of the scale, and 'terminal' at the worst. Every day becomes about enduring gruelling treatment and hoping that it works. Life becomes about survival, and it's very difficult to think about anything else. In such extraordinary circumstances, a network of medical professionals, family and friends become your support system and the life you had before cancer treatment goes on pause. But then that state of emergency can't last forever and slowly but surely the extraordinary becomes normality as you find a way to cope. Resilience comes daily as a matter of course. This isn't about rictus grin positivity. It's the difference between curling into the foetal position and shutting out your reality, or getting out of bed each day to take part in life, whether that's going to work or getting the kids off to school. Living with side effects from treatment, and living with the knowledge that the disease you have is a killer, is the default setting for life from here on in. When you start with that as the base line, in the days, months and years after diagnosis even the smallest day-to-day achievements can be nothing less than heroic.

But after living with cancer for so long and forgetting what it's like not to have the disease, - and I feel beyond guilty saying this when women are dying - I want more than just survival. At the age of 38, I want to plan for the future; I want to feel confident about focusing on my career; I want to travel the world; I want to have a family. But the dichotomy of cancer is that our society defines you in one of two categories. There are the 'lucky' ones who are considered cured, or there are the 'unlucky' who live in that constant state of emergency, where enduring treatment to survive requires single-minded focus. But as more people like myself are living longer with stage IV cancer, there is a yawning chasm between those two states.

I promised myself at the beginning of this year that I'm not going to let cancer define me; and yet it still chips away at my sense of who I am. With incurable cancer we're not supposed to get a promotion at work or apply for a new job; we're not supposed to travel to far flung destinations or do sports; we're not supposed to apply for mortgages because we want to move house, and when cancer treatment means that we can't conceive naturally, we're most definitely not supposed to put in an application to adopt a child. Society sees us as the wrong side of a statistic, a hazard and an unacceptable risk, to the degree that we are made to feel like we should be grateful to be alive and not want more.

I am living with a disease that by default is still widely described as terminal, and yet I've had seven years of stability with the very real prospect that I could continue to stay in remission. As cancer treatment continues to improve, the more immediate future for breast cancer is more women like me living longer and better with metastatic disease and less women dying of the disease. Secondary Breast Cancer Awareness Day is a great initiative, but surely those of us with secondary breast cancer could also participate in the wider conversation during October. For the nearly 60,000 people diagnosed with breast cancer each year, perhaps that diagnosis would be less terrifying with the knowledge that if the disease spreads, it might be possible to find a way to live with it.

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