Now lIving The Dream. Daksha Trivedi
Sixteen: The home coming
Seventeen: Who cares for carers?
Nineteen: Life is a onetime offer
Twenty: Learning to talk about cancer
Foreword
In writing a foreword for this book about a cancer journey, I wondered how I would word it. Three simple words “You have cancer” finds the darkest place in your heart and hits those loved ones around you. In a moment, your life is thrown into a huge chasm staring into the void.
In reading this tale of surviving cancer, I looked back and could relate to my own oesophageal cancer journey. Daksha’s powerful narrative reflects this in a way that is as personal as can be but is also true for all cancer patients to relate to their journey. Her journey echoes the emotions, the fears and the knowledge of how fragile life is, sadly for many, the diagnosis is too late. This transformative story gives hope and happiness we wish on everyone with cancer and their families who silently suffer along the way.
Daksha’s cancer pathway shows how important those around us all are, our loved ones and friends to support us, our many varied beliefs of someone watching over us, the fantastic National Health Service (NHS UK) with the skills of treatment and compassion and the medical researchers who give us the hope and life we all deserve. In addition, Daksha shares some of her helpful strategies for overcoming both physical and emotional difficulties discovering what truly matters in life. Though she charts her deeply personal experience, the book has a universal reach through her perspective both as a patient and an academic.
My pathway from diagnosis has taken me on a road of discovery into patient support, research for patients to understand the many trials they are invited to join and to Chairing the Oesophageal Patients Association (OPA), all things totally alien to my world of printing! The OPA was founded some 35 years ago as a charity by David Kirby, OBE to support Oesophageal cancer patients. His meritorious effort in promoting patient to patient support was the key in helping patients living beyond cancer. It is encouraging to read that Daksha has addressed the need to support cancer patients and their families, particularly those living in rural areas.
Cancer will not go away but we can reduce the toll on life by awareness, early diagnosis, research, treatment and support right from the start to patients by patients, not forgetting that belief in hope is a big part of the healing.
This remarkable book is a testament to Dr Trivedi’s tremendous courage and faith as she unravels the complexities of this triumphant human journey.
By David Chuter, Chairman OPA; supported by David Kirby, OBE; Founder & Life President, OPA
David Chuter, Chairperson, Guildford Surrey UK Support Group; Representative on The National Institute for Health and Care Excellence (NICE), contributing to NICE guidance for improving health and social care; Patient Ambassador: National Cancer Research Institute Consumer Liaison Group; World Cancer Research Fund; Cancer Research UK; Governor, NHS Royal Surrey Hospital Foundation Trust; Advisor to patient support groups across Europe for gastrointestinal cancers.
Introduction
The greatest gift
God gave us the gift of life; it is up to us to give ourselves the gift of living well
- Voltaire
My heart sank upon hearing three words “You have cancer”. Every day in the UK, around one thousand people hear these frightening words, and I never envisaged that I would be one of them. Life as we know it can vanish in a heartbeat and the unthinkable can happen in a moment. My twin brother whose face I remember so vividly, drained of hope and with pleading tearful eyes had uttered “please pray for me”. It was like his spirit was stolen from an unseen injury. I cried a river for my beloved brother’s plight. Sadly, he died of advanced stomach cancer within the year given to him. It beggars belief that only after six months I could face the same predicament. The shock and disbelief were hard to bear, and the overwhelming numbness incapacitated my family. We were gripped into a spiral of recurring thoughts about cancer and its unpredictable outcome.
In my altered state, I assumed the worst which exploded my fears and emotions throwing me into the abyss. “Am I dying?” “Has it spread?” were the words that re-opened the wounds before they had time to heal. The effects of this uninvited growth within my body, would soon spread to my family, friends and my professional life. For almost three months I suffered deeply in silence from the uncertainty of the treatment plan, during which time I wish I could have found the necessary support from those who had undergone a similar experience. The most frightening aspect was not knowing whether the treatment would work and what would happen to me. Whilst the medical professionals have a reasonable idea about how many people will benefit from a particular type of treatment, they can never be certain how individuals will respond.
As an epidemiologist, I can say with certainty that the probability of dying is still one hundred percent. Until we have a close encounter with a life-threatening condition, we refuse to accept the possibility of our own demise. Paradoxically, many faiths teach us to accept life and death with equanimity to minimise our suffering. Therefore, our potential to be fully human and fully alive does not necessarily depend on the presence or absence of cancer. Receiving this unexpected news radically changed all my preconceptions of how my life should be.
Having spent many years researching various chronic diseases, it dawned on me that fear remains the most chronic disease of our generation and finding a cure for it becomes paramount. My doctoral work had examined new ways of diagnosing breast cancer so that treatment could be targeted for cancer specific tumour markers. Working with Professors Harold Baum, the singing biochemist and Professor Michael Baum, a specialist in breast cancer treatment, I learnt to apply intelligent determination. I observed patients coming through the clinic, many expressing powerful emotions, namely denial, anger and guilt, preparing for death, whilst those who transcended these, had somehow conquered their fear of death. Only when I became a patient, I understood that there is no good cancer or bad cancer, there is just cancer with a big C. However hard we try, it is almost impossible to escape the word, which is like a dark menacing and a devouring shadow. Standing at the crossroads of life and death, this perfect storm which came from nowhere demanded a shift in my thinking about mortality. It was not about a new lease of life but more about viewing life differently.
Memories from my past welled up intense emotions raising fundamental questions. How did I get here? My life until now had to be perfect without question where academic excellence was the expected norm. I have lived with fear of failure, sickness and death, but mostly the fear of being alone. The familiar faces of my family had faded over time into the “matchstick men” as portrayed in L.S. Lowry’s painting. Even though my family life was somewhat fragmented, I pursued relentlessly the exciting field of science and medicine. I knew there had to be more to this world and my place in it than my limited understanding would allow. The great and the good have asked the same questions - Who am I, why am I here and what is the purpose of my life? My path of self-enquiry to this point has favoured me with valuable insights, but now my past juxtaposed with a crushing diagnosis. This insolitus occurrence became the catalyst for me to reflect on my life trying to make sense of what was happening to me.
Seeking answers to life’s questions, I had embarked on a personal odyssey for so long to discover a meaning to my existence. Many pilgrimages took me to India, the mystical land of my forefathers, full of scholarly knowledge and culturally exotic. I had a numinous experience at various places of worship and in contemplative silence, I learnt the wisdom from the