Thursday, 4 February 2016

The other side of fear ~ Naz

Little did I know that the thought of writing about my fears and anxieties as they related to my breast cancer experience would make me apprehensive. After all, I was an academic specialising in the cognitive and neural underpinnings of emotional vulnerability. I had spent many years of my life studying the brain mechanisms of attention and cognitive flexibility in anxiety and depression, and had become interested in how we could target and influence those mechanisms to reduce the impact of anxiety and depression and boost resilience towards psychological well-being. As the idea elaborated, my fears exaggerated and the whirlpool of mixed emotions was what I experienced – they in fact felt very alive. ‘It will be liberating’ one of my friends said, and while I cherished the idea of that thought, the anxiety about how I would do justice to the description of the many roller coasters I experienced, their effects on my young daughter, on my work and to the person that I am now, concerned me. I broke the ice by putting pen to paper and relished the thoughts that raced through my head, the sensations that rushed through my body, and the tears that found their ways to the surface. Three years ago, at the time of my breast cancer diagnosis on the 2nd of January 2013, I would have never been able to see this day, me: alive, at work, vigilant, and eager to tell the story. And yes, in a strange way, it felt rather liberating.

Resilience has been defined as the process of adapting well in the face of adversity, trauma, tragedy, and injury. Resilient people are flexible and able to regulate their emotions as necessary. They are able to embrace their feelings and thoughts and not fight them. Emotions signal to us what is important, and as such should not be ignored. They are what makes us human, dynamic and insightful. Resilience is also dynamic and fluid and a much desirable thing to have when confronted with a breast cancer diagnosis. 

It is estimated that every 10 minutes a woman is diagnosed with breast cancer in the UK (Cancer Research UK, 2014). With medical advancements, a large proportion of sufferers live years beyond their diagnoses. However, the negative psychological impact of diagnosis and treatment on cognitive health, predicts the development of anxiety and depression in a significant proportion of women.  Diagnosis at a younger age is a risk factor for vulnerability, cognitive impairments and their consequent impact on career and responsibilities of a young family. Survivors face fear of recurrence, loss of fertility and early menopause due to medication, altered physical image due to major surgery, changes in sexuality and fear of mortality. Psychological interventions are sparse and the effectiveness of the existing treatments highly limited. Many women continue to doubt their abilities in the jobs they once used to hold and suffer enormous insecurities in the work place.

Every year 2.6 million women with a breast cancer diagnosis are told that they should be grateful for a second chance to survive. The experience of fear and hope are very much mixed for a patient diagnosed with breast cancer. She is fearful of the consequences of cancer diagnosis and treatment, but also hopeful that with appropriate treatment she can get better. ‘I have a treatment plan’, I thought. I was confident that I could cope well. Multiple major surgeries, extensive chemotherapy for four and a half months, and a long course of radiotherapy took just over a year to complete. The depression, the exhaustion, and the side effects of treatment were overwhelming. Chemotherapy had left me suppressed emotionally, physically in agonising pain, brain dead, fatigued and dissociated from the self I knew. I was hospitalised with Sepsis three times with heavy antibiotics and blood transfusion. If chemotherapy was killing the cancer cells, it was killing billions of good cells to achieve that aim. Ella, my daughter, who was only 3 at the time was my inspiration to fight, but what if I could not make it? what if I could not be there for her? How will she cope? I am everything to my daughter and she is everything to me. How do you explain the implications of breast cancer to a child who is 3 years of age? ‘Mummy you will get better’ she kept telling me with fear in her eyes. ‘Mummy, I had breast cancer too, but now I am better and my hair has grown back and my breast is not sore anymore’. As treatment continued I was hopeful that I would regain my life and my confidence. I will be able to think clearly, to get rid of the chemo brain and mental fog, the fatigue that crawled on every inch of my body, the emotional roller coasters. Little did I know that my journey would start only after my treatment had ended.

‘You are looking so amazing, Naz’, ‘you can now put that chapter of your life behind you and move forward’. ‘Move forward’ was all I heard from everyone. You have fought so well Naz, even managed to write articles during chemotherapy. You are a role model for everyone.’ Yet I felt at rock bottom with a mixture of fears, compassion for others, smiles and confidence. Alone in an ocean trying to find my way to the shore. The waves were high, they were scary, and kept pushing me back to the deep end, no matter how hard I fought. Perhaps I need to fight harder, I thought. Why am I depressed when I should be happy and grateful for a new life? Someone like me should know better. Who am I? Am I the same person, or a different one, a stronger person or a weaker one? Expectations for regaining what was lost were overwhelming. I wanted to scream as I wanted to many times during chemotherapy but couldn’t find my voice due to emotional numbness. I was looking at myself through a glass that could not be broken, I could not touch me, I did not know me, I did not know how to reach me.  Everyone knew me as a positive and optimistic person, always smiling and strong, full of opinions and vocal. But in a paradoxical way, the fear, the agony and the pain felt somehow to my strength, I could identify with them. They seemed to lessen when I listened to them and accepted them. They are part of me, but they are surely not me. I am a changing person.

What does it mean to survive? We live with the assumption of being immortal even when we know we will one day die. Yet the fear of our own mortality in a paradoxical way makes the battle for survivorship harder. Fear has the power to numb our feelings when we fight it, and it has the power to make us stronger when we embrace it. It can guide us when helpless. It signals what is important to us, and as such should not be ignored. How can we foster resilience in the shadow of cancer? To keep going amid the fears fuelling every breath, for our loved ones, despite knowing we will have to let go of what is no longer ours.

As time passed by, Ella began to understand more about breast cancer and she now writes stories about it, she is five years of age and a rising star. She has told us that she wants to be a teacher, so that she can teach doctors about cancer. I cherish my moments with her with great intensity, the emotions are overwhelming and exciting when I am with her, because I am aware that I am not guaranteed tomorrow. I somehow have to believe that she will be OK. As time passed by, I became determined to translate the neurocognitive interventions I was developing in anxiety and depression research to targeting emotional vulnerability and promoting resilience in breast cancer. Through our efforts we were successful in obtaining some funding to pursue research into building resilience in survivors of breast cancer. Jess Swainston, my PhD student, is pursuing this work under my supervision. The research prospects are exciting yet scary. I recall my oncologist saying: ‘Is it too close to home Naz?’ But that made me more determined. After long deliberations I decided to set up the Centre for Building Resilience in Breast Cancer where I founded the private and closed support group: Building Resilience in Breast Cancer. We grew from two members to over 290 members in just three months. Along the way, I met the two sisters I never had: Tamsin and Vicky, who run this educational support group with me. In addition to psychological support that our members provide for each other we engage in research led debates on advances in the psychological aspects of breast cancer research. I have spent a life-time in education but for me the wonderful ladies I have met through my breast cancer journey, as well as my the many thousands of students that I have taught and the numerous that I’ve supervised, have taught me far more than I have ever learned as a teacher, a student, and child. There is a silver lining in everything we experience.

I have high hopes for our centre to expand, flourish, and reach out to the thousands of ladies affected by this deceptive silent disease. And I am somehow confident that we will achieve this aim.

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