A Caregiver's Personal Story
EXCERPTS FROM Lean on Me: Cancer through a Carer’s Eyes BY LORRAINE KEMBER
The Beginning of a Family's Trial With Asbestos Blue
He was only a child when it begun
And he played as children do
In his yard with his toy cars and tip trucks
But his sand was asbestos blue . . .
In December 1999, my husband and I were walking home from a game of lawn bowls when I became aware of his shortness of breath. I was surprised and concerned when he told me that he had experienced this on several occasions. Believing this to be due to chest a infection, I made a doctor’s appointment for him the next day.
Chest X-rays revealed fluid on the lungs, over two litres of which was drained, giving Brian immediate relief, but it was a tense wait for the pathology results. Through the Internet I had become aware of several conditions which may have been responsible for fluid on the lung; these included asbestos- related diseases. Brian had lived in Wittenoom as a child and I was afraid of his diagnosis. Not wanting to worry him unnecessarily, I did not mention my fears to him. I prayed that he had pleurisy or pneumonia but the pathology results revealed that there were cancer cells present.
When Brian finally received his diagnosis, my worst nightmare became reality. He had pleural mesothelioma, a terminal cancer of the lung caused by the inhalation of asbestos dust. We found it inconceivable that the disease was the result of Brian inhaling asbestos dust as a child and that it had lain dormant for forty-five years before become lethal.
We were still reeling from the shock when, without preamble, the young doctor gave his prognosis. His exact words were, “Three to nine months, I reckon”. That he could say this so unfeelingly amazed me. His total lack of compassion did not encourage even the small comfort of tears. I felt as if Brian and I had been shot and from that moment on we were waiting to drop.
Undoubtedly, were mortally wounded. We suffered shock, disbelief, anger, helplessness and utter despair; in fact all the symptoms of grief one feels when a loved one has actually died. Suddenly, we had no control over our lives; our journey through terminal illness had begun.
Throughout the course of our married life my deep love for Brian and my determination to resolve difficulties had seen us through many trials. I found it hard to believe that nothing could be done to save his life and begun surfing the Internet for information regarding mesothelioma, all the time praying for a miracle, hoping against hope to find a doctor who had successfully operated on or cured someone of it.
It was a sad realization to discover that for Brian there were no miracles; however, I learned a lot and it helped me to accept that he was dying. With my acceptance came a fierce determination to ease his burden. I continued to seek information regarding mesothelioma and the pain and symptoms Brian would experience, due to the progression of his disease. In this way, I came to understand the importance of pain management and symptom control and realized that although I could not stop Brian from dying – I could help him to live.
My acquired knowledge regarding pain and symptom management enabled me to communicate with Brian and to understand the type of pain he was experiencing and the intensity of that pain. I was then able to work hand in hand with his doctors, to bring his pain and symptoms under control. As my efforts resulted in his improved quality of life, I lost my sense of helplessness and gained strength.
Together, we achieved for Brian, a quality of life few thought possible, considering the nature of his disease. Testament to this, despite his prognosis of three to nine months, Brian survived for 2 years, remained active and alert, drove his car for eighteen months after diagnosis and was not bed bound until three short days prior to his death.
Brian's courageous battle with mesothelioma came to an end on the 24th December 2001; he passed away at home surrounded by his loved ones. He was 54 years old.
This page is written by Lorraine Kember, author of Lean on Me: Cancer through a Carer’s Eyes. Her book is written from her experience of caring for her dying husband in the hope of helping others. It includes insight and discussion on: Anticipatory Grief, Understanding and identifying pain, Pain Management and Symptom Control, Chemotherapy, Palliative Care, Quality of Life and dying at home. It also features excerpts and poems from her personal diary. Highly recommended by the Cancer Council of Australia. Although not available in bookstores, you can learn how to purchase it by clicking on the above link.
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