Excerpt – Preface

I write this book for many reasons: To find myself, to educate and help others who may be struggling in the same way, and in memory of my sister.

I share with you our most intimate year in hope that it may assist you and others to help your loved ones and yourself.

Losing someone you love to terminal cancer is heartbreaking. Sharing their journey is challenging in all aspects: it alters your life and brings emotional, psychological, physical, financial and family issues to the forefront. You may face barriers with the health care system and pressure from health care professionals. You will meet health care providers who are caring, and others who lack compassion and understanding of end-of-life issues. Complexities related to processes of employers and insurance companies and the various bureaucracies exacerbate an already difficult situation. You live with death and grieve the living. You don’t know when it will end. Regardless, you are not ready.

At times, you feel people can’t relate – that they don’t understand. People are uncomfortable talking about death and the terminally ill. Many feel awkward talking with the dying. Others can’t psychologically deal with life-threatening situations. And some don’t know what to say and do, they stay away. While others support you the best way they can.

Yet death is another phase in life, one that is inevitable, one that is much bigger than any of us. It is a phase unknown to most of us until it reaches our being, until it reaches a loved one. All too often, it arrives prematurely in our lives. It takes us outside our comfort zone and introduces end-of-life issues with intense and powerful emotions – you learn as you go.

Death for the terminally ill is not an event but a process. Many don’t fully realize the challenges and opportunities involved. This will most likely change. As the baby-boomer population ages, more people will face terminal illness. More will become caregivers. More will experience intense loss.

In the book Saying Goodbye – A Guide to Coping with a Loved One’s Terminal Illness,[1] the authors identify how death and dying have dramatically changed thanks to medical advancement. Sudden death has become less imminent and is replaced with a terminal diagnosis, sometimes with a prognosis of many years. With this, the so-called traditional grief is being replaced with a contemporary one, one they refer to as – the new grief. This prolonged grief brings new and complex challenges for the family and patient.

I came across this book late in my sister’s journey. I found the authors’ introduction of the five stages of family grief quite pertinent: Stage 1 – Crisis; Stage 2 – Unity; Stage 3 – Upheaval; Stage 4 – Resolution and Stage 5 – Renewal. This new grief is real. It is confirmed by my family’s experience. The stages of family grief become evident as my story unfolds.

Another treasure is Help me live – 20 things people with cancer want you to know. [2]This great resource helps you to understand what patients with cancer are living. A summary of many chapters is intertwined in my book. My summaries have brought a common dialogue amongst our family members and friends, and it helped us be there.

On occasion I hear, “I’m not afraid of dying.” Easier said when death is not at our doorstep. Perhaps what people fear is not death itself but the process of dying – when physical limitations set in, the disability, the loss of independence and the suffering. Perhaps the focus is being ready to say goodbye to your loved ones and in letting go of your life on earth. Perhaps the fear is of so many unknowns.

Cancer is the leading cause of premature death in Canada[3] and the second most cause of death in the US.[4] Every day, close to 1800 people are expected to die of cancer in Canada and the US alone[5]. How will you support your loved one on their journey? Can such an experience be enriching?

How you contribute to a good death is your choice. You may not understand what your loved one is going through. You probably never imagined yourself on a death bed or living a death sentence. But what if it was you? What would be important to you as a dying human being?

Imagine a change in your life’s priorities. Imagine the opportunity to offer the greatest gift of love. Such a journey involves the people who are important to the dying. It involves you, family and friends, and it involves your loved one. Death is not an individual but a family experience. Deep within us we find the courage to help our loved one and we learn to forgive. It can become the most caring and compassionate thing we do.

[1] Okun, Barbara and Joseph Nowinski. Saying Goodbye: A Guide to Coping with a Loved One’s Terminal Illness. New York: Berkley books, 2011. Print.

[2] Hope, Lori. Help Me Live: 20 Things People with Cancer Want You to Know. New York: Random House, Rev. ed., 2011. Print.

[3] http://www.conferenceboard.ca/hcp/details/health/mortality-cancer.aspx (accessed May 24, 2014).

[4]American Cancer Society, Cancer Facts and Figures 2014. Atlanta: American Cancer Society; 2014.

[5] Ibid., p. 2; http://www.conferenceboard.ca/hcp/details/health/mortality-cancer.aspx (accessed May 24, 2014).