The human brain is hardwired to seek out danger. It’s part of being human, an inbuilt survival mechanism designed to protect us. Normal functioning of the mind enables us to project our thoughts to things and events in the future, and to past events, things that have already happened. This is an integral part of our survival mechanism, stimulating our stress response, and although it is a normal part of human functioning, it often doesn’t serve us well from a mental health perspective. It can limit our ability to truly enjoy the present moment and means that we miss such a lot of what’s going on around us as our human mind detaches us from our present moment experience.
So as part of this process, what happens to the mind when it hears devastating and trauma-inducing words such as ‘You have secondary breast cancer. It’s incurable’? Once those words are heard and absorbed into our memory bank, our stress response is triggered in a way that creates a hugely traumatic reaction in our mind and body as the impact of the words and their relation to the life-limiting effect of the disease are registered in our mind. Trauma of this kind is held within the very core of our being. It affects us at a cellular level. Along with ongoing cancer treatment that allows us to live for as long as possible with the disease, the mental effect of such a diagnosis requires special attention.
But therein lies the problem. While new and innovative cancer drug treatments target the growth of metastatic breast cancer cells, how are the mind and our emotional responses to the impact of a secondary/metastatic breast cancer diagnosis treated? Some might argue that it’s of secondary concern in relation to controlling the spread of the disease. But we want to live well with the time that we’ve got, and without proper attention to the health and wellbeing of our mind, the ability to live well with secondary/metastatic breast cancer is compromised.
Mental health support for people living with secondary/metastatic breast cancer is an important aspect of our care but its provision across the UK within an NHS setting is patchy and limited to a number of weeks instead of the lifetime support that we really need, however long that lifetime might be.
In 50 years, people will look back and ask, ‘We did what?’, as medics reflect on the current system and the delivery of such devastating news without adequate and long-term mental health provision in place.
It’s essential that our cancer treatment is holistic in its approach. Our mental and emotional functioning is dramatically affected by a breast cancer diagnosis. The seeding of uncertainty, fear, grief and anxiety all require special care and mental health intervention so that our cognitive functioning is supported to enable us to live more presently. It’s little wonder that so many of us experience an acute decline in our mental wellbeing as we carry the added heavy emotional burden of a secondary/metastatic breast cancer diagnosis. Living with uncertainty and facing our mortality every day is a full-time job in terms of the headspace it takes. We need a healthcare system that truly recognises and appreciates the nature and type of mental health support we require.
My children were six months old and three when I was diagnosed with primary breast cancer and, if I’m honest, I didn’t give my diagnosis the attention it deserved. I was a ‘very busy’ person juggling full-time work and being a mum to my baby son and my little girl. Breast cancer wasn’t going to get in my way. But it did, again, three years later when I received another diagnosis of primary breast cancer. Perhaps if I’d been able to access appropriate mental health support on the NHS at that point, I would have been better prepared to cope with the shock of my secondary/metastatic breast cancer diagnosis three years later. It would have helped, too, if I had known about the red flag symptoms of secondary breast cancer, but I was totally ignorant of what they were. In 2007, when I was diagnosed with secondary/metastatic disease, social media was in its infancy; Twitter had only become a thing a year earlier, Instagram didn’t exist and I didn’t join Facebook until 2011. Fifteen years ago, my diagnosis of secondary/metastatic breast cancer came at a time when there was very little online support for people living with the disease.
I believe that part of the acute shock associated with my secondary/metastatic breast cancer diagnosis, and which triggered the significant and rapid decline in my mental health, was because I didn’t know anything about the signs and symptoms of metastatic disease until I was diagnosed with it. On the day of my diagnosis, my oncologist, because I asked her to, gave me her opinion about my life expectancy. She told me that she thought I had up to two years to live.
That moment is permanently etched in my memory bank. Understanding that the reason for the breathlessness I’d been experiencing for six months was because of metastatic disease in my respiratory tract – lung and pleural lining – hit me like a sharp blow to the head and left me reeling. Everything that I thought I knew about myself disintegrated in that moment.
But I am just one person among thousands of people who are told every year that they have secondary breast cancer. Each of us has a story to tell, and as part of that we find ourselves asking questions too. How can we have a healthcare system that doesn’t acknowledge the severity of a secondary/metastatic breast cancer diagnosis upon our mental wellbeing? It affects every aspect of our lives. My business closed, and while I waited to die during the first two years of my diagnosis, I spent many days in bed, unable to function properly. This was directly linked to the state of my mental health.
I am fortunate. Not fortunate to have been diagnosed with secondary/metastatic breast cancer, but to have lived with it for fifteen years. And how has that happened? The answer is that the biology of my disease is currently responding to Letrozole, which so far has found a way to stabilise its growth. How do I mentally live well with it? Because for the last fifteen years I’ve been under the care of an excellent clinical psychologist. But only several weeks of that support has been provided by the NHS. I have paid for the rest privately. That is also how I am fortunate. I have done without other things to fund it but many people aren’t in a position to even consider paying privately for their mental health support.
It shouldn’t be a dilemma with which we are faced. Mental health matters and it matters greatly when you are diagnosed with a life-limiting disease. It should be a natural and readily available part of our care.
Metastatic May gives us the opportunity to explore a range of issues associated with secondary breast cancer. The issue of adequate mental healthcare provision is one that requires so much more attention. It matters greatly to me and this is why I campaign for change.
It matters to us all.
Laura Ashurst – METUPUK member and patient advocate.