When my husband, Brian, was diagnosed with pleural mesothelioma, he was told nothing about the disease other than it was an asbestos-related cancer with no cure.
Given a life expectancy of less than a year, he was not informed about the stages of mesothelioma or the symptoms he would most likely experience as the disease progressed.
Knowing Brian as I did, I suspected he was happy to keep it that way.
But it was different for me. I feared the unknown and decided that I needed to know more about the illness that was threatening my husband’s life.
Fortunately, I was accustomed to searching for information on the Web and did some research on mesothelioma. I wasn’t ready to believe Brian was dying of this disease and hoped to find someone who had been cured.
I never found a miracle. Instead, I learned that many people around the world died of this incurable disease. That dispelled all hope I held for Brian’s survival. There are no words to describe the depth of despair I suffered because of it.
To make things worse, I felt completely helpless. I had no idea what was going to happen to Brian or what I could do to help him.
Mulling over this one day, I suddenly had a thought that changed the way I felt about Brian’s illness and my ability to cope with it: “I can’t stop Brian from dying, but I can help him live for as long as possible.”
And that is exactly what I set out to do.
Scheduled a Meeting with Brian’s Doctor
I called the hospital the following day and made an appointment to visit his doctor. I had lots of questions that needed answers and hoped he could provide them.
When I saw the doctor, I handed him my list of questions, fully expecting he would begin discussing Brian — but I was wrong.
Instead, he turned to me and asked: “How are you, and how are you coping with Brian’s illness?”
His question took me by surprise. Since Brian’s diagnosis, he was the only person who had asked how I was feeling. It opened up a floodgate of pent-up emotions. I burst into tears and told him Brian’s terminal illness diagnosis made me feel as if I was dying along with him.
It was the first time I put a voice to my feelings, and it was strangely alleviating. I started crying and couldn’t stop. The doctor didn’t attempt to stem my tears. He knew it was exactly what I needed.
Doctor Offers His Advice
When I finally managed to pull myself together, he explained my feelings came from the grief I held over Brian’s impending death. “Anticipatory grief is very much like the grief people suffer when someone has actually died,” he said.
He recommended I seek counseling and begin writing my feelings in a journal as a way to cope. I promised him I would take his advice.
When we met again to discuss Brian, the doctor took my questions about my husband’s illness seriously. “Leave them with me,” he said. “Make another appointment for later in the week. By then, I will have some answers for you.”
That first appointment to Brian’s doctor marked the beginning of many visits over the following months. During that time, we discussed many aspects of Brian’s disease, including what I could expect as his disease progressed. The feedback was painful to hear, but it took away my fear of the unknown and allowed me the time to put things into place to ensure Brian remained comfortable and pain-free.
A year after Brian was diagnosed, he needed chemotherapy. We lived in Exmouth, Western Australia, at the time. It’s a small town and finding treatment there was impossible. We were forced to relocate to Perth.
It was hard leaving Brian’s doctor and the support I had come to rely on. The doctor had truly helped us during the worst time of our lives. I will always be grateful to him for that and his advice about coping with my grief. The journal I began at his suggestion soon became my strongest coping tool.
‘Knowledge Is Power, Isn’t It?’
The excellent relationship I had maintained with Brian’s doctor in Exmouth gave me the confidence to talk to his other doctors.
I continued keeping myself informed about the different mesothelioma stages, and his doctors came to respect that and my determination to ease Brian’s journey.
Toward the end of Brian’s illness, he needed a stent inserted in his throat to help him swallow. I immediately researched the types of stents available and which were considered the best.
On the day before Brian’s surgery, I asked to speak to the doctor performing the operation and told him exactly what type of stent I wished him to use on Brian and why.
After showing some surprise at my request, he said, “Knowledge is power, isn’t it?”
I wholeheartedly agreed.
Without knowledge, I would not have mustered the confidence to talk to Brian’s doctors about his illness or be able to work hand-in-hand with them to ensure that he achieved a good quality of life.