Learning to Live with the Trauma of Cancer

Avoidance Didn't Work

For a long time, I was mute in the face of cancer. My most traumatic experiences seemed beyond my capacity to put into words. Even now, part of me is in shock: I’m asking myself whether these events really happened and I’m still trying to process, or make sense of them.

I find ways to avoid thinking about cancer – I turn off a TV programme because the main character has cancer. I feel ambushed when I see a poster about cancer at the bus stop. I say ‘I’m fine’ even though I sometimes feel quite the opposite. 

I’m constantly amazed by the number of times I manage to overlook organising my repeat prescriptions and the many reasons I find for putting off appointments and ongoing check-ups. This is my “avoidance” -  a term used to describe the conscious and unconscious mechanism that allows us to manage painful feelings and memories. 

Most of us do this. It’s natural to want to avoid painful memories and emotions. We try to forget about cancer, a wish shared by our family and friends who also want desperately for us to ‘move on’. 

If only we could. 

Maintenance treatments, scars, pain, fatigue and ongoing side-effects like lymphoedema are all a daily reminder of cancer and our ongoing vulnerability. 

Trauma & Cancer

Trauma is a word generally associated with war, natural disasters, an assault, abuse or an accident. Yet studies show that nearly 80% of women with a breast cancer diagnosis experienced PTSD (post-traumatic stress disorder) symptoms for at least a year after their diagnosis.  

As a woman diagnosed with breast cancer twice, this shocking statistic does not surprise me. I know I’m not alone and many of us are impacted by symptoms of PTSD many years after we’ve finished active treatment. 

When we’re confronted with a life-threatening event like cancer, the task for our brain is to protect us and aid our survival. When we need to be vigilant to potential threat, our emotional brain is on high alert. The words ‘you have cancer’ hit us with waves of fear, panic and anxiety, triggering the release of stress hormones, preparing us for flight or fight. 

Yet one of the most frightening aspects about the experience of cancer is that the threat to our lives comes from within us. Cancer is a part of us at a cellular level. We are unable to run away from the danger it poses – there is simply nowhere to flee and nowhere to hide. Finding safety can feel impossible. 

So we experience ourselves becoming emotionally numb, as our brain goes into protective mode. Or we feel as if we are watching ourselves from a distance. 

If we experience emergency admissions and complications in our surgery, the experience of trauma moves beyond a discrete, one-off event and we can find ourselves living in a state of heightened emotion for many months.

While we should be careful not to take on labels without a clinical diagnosis, there’s evidence that many of us are impacted by symptoms of post-traumatic stress, such as nightmares, flashbacks and intrusive thoughts. “Re-experiencing” is the term used by psychologists and psychiatrists to describe the process by which we can mentally re-live our previous experiences of trauma. 

Re-experiencing Trauma

My own conscious awareness of re-experiencing arrives as a feeling of foreboding, a sense of dread that something terrible will happen, often just as I fall asleep. There are sensory experiences – certain smells and sights – which trigger the fleeting feeling that I have cancer again. My emotions can be so immediate and vivid that I am transported back in time – the past and present momentarily, and confusingly, intermingle. 

Like others, I find re-experiencing is particularly distressing in medical settings. A simple blood test triggers mild anxiety. The possibility of having my wisdom tooth removed provokes a sense of panic. The prospect of a scan leads to such severe scanxiety that it can become a real struggle to concentrate as so many of my cognitive resources are used to regulate my anxiety and my fear ‘It’s back.’ 

The Imprint of Cancer

Many of us struggle to confidently interpret the sensations of pain and discomfort which become part of our ‘new normal’. We can lose touch with our bodies and don’t recognise a ‘normal’ physical reaction to harsh treatments like chemotherapy and radiotherapy, and when to seek medical advice. We don’t want to seem over-anxious by bothering our GP or specialist nurse (if we have one) and we don’t want to be dismissed as a hypochondriac either.

One of the psychological tasks I face is to integrate my experience of cancer into the story of my life: to learn how to find a way of living with continuing uncertainty and the threat cancer poses to my health. I’m vigilant for signs of further recurrence since my survival depends upon prompt diagnosis and treatment. 

In his book, ‘The Body Keeps the Score’, the psychiatrist and author Bessel van der Kolk says that no trauma is “just an event that took place sometime in the past; it is also the imprint left by the experience on our mind, brain and body.”

The emotional and psychological imprint left behind by cancer is as real as the physical scars which cover my body.  

You may be surprised to hear that I was last diagnosed with breast cancer in 2012. I last had surgery associated with cancer – due to a failure of my reconstruction – in 2016. Three years ago. 

I tried to move on from my experience of cancer by adopting a position of denial, which is to say, I tried not to think about it. I thought that if I pushed through my painful feelings, I’d get to the other side. I thought I’d be able to forget about cancer. I failed. 

There was no other side. I have learnt that a healthier approach involves acceptance, adjustment and the realisation that I must learn to take my experience of cancer forwards with me, into the future, into the unknown.   

Post-Traumatic Growth

When I read that someone is grateful for their experience of cancer, I understand that they are describing their “post-traumatic growth”, a concept which refers to the ways that we grow and learn from the trauma that we have endured.  

Post-traumatic growth can lead us to re-evaluate our priorities, values, and find new meaning in our lives. 

I have seen too much suffering to embrace the idea that cancer is a gift or a teacher. There is, I believe, a crucial difference between recognising that we can come through the crisis of cancer, resilient and strong, and coming to the view that we are resilient and strong because we had cancer. 

If there is growth, it is because there is a ‘clever me’ inside each and every one of us who can use the trauma of cancer as a springboard to learn from. My experience is that post-traumatic growth has made the burden of my trauma easier to carry. 

I can’t give you a prescription for dealing with the trauma of cancer. Talking can help because it involves us expressing our feelings and supports us to gain greater self-awareness. By making connections to others, we can feel less isolated. Yoga, exercise and mindfulness can also help us to find ways to re-connect with our bodies. But, it takes courage to face trauma and we need permission to do this in our own time. 

Post-traumatic growth can’t be reduced to a set of tips. It is a way of being. It is the process through which we learn to see ourselves and our place in the world. 

For me, it is the profound gratitude for the astonishing miracle that is my life. It is my joy in places and people that I previously took for granted. I have come to realise that post-traumatic growth does not mean becoming entirely free from the painful memories of what has happened to me. My experiences, my grief and the challenges I face are part of who I am, not something to be pushed away. 

I think we can learn to talk to ourselves kindly. We can learn to accept and understand the significance of our experiences and feelings in ways that validate our responses so that we live more authentically. With practice, we can learn to reveal our vulnerability. We can learn to see ourselves, and I mean really see ourselves, in all our flawed and imperfect beauty.

Tamsin is a social worker living with her family in South London. She was first diagnosed with breast cancer at the age of 40 in 2009 and again in 2012. A soft-touch mother and manager, she is learning to live with the long-term effects of breast cancer, including lymphoedema in her right hand and both arms. Tamsin is a would-be writer and reluctant blogger who pens occasional pieces to challenge the ‘single story’ about breast cancer and to raise greater awareness of the enduring emotional and psychological impact of cancer.