Mesothelioma Widow Reflects on Caregiving Journey
- Cancer & Caregiving
- March 17, 2017
Shortly after my husband Brian and I celebrated 30 years of marriage, we learned that anniversary could be our last.
Diagnosed with pleural mesothelioma at age 52, Brian was not expected to live for another year.
The tragic news reminded me of my wedding vows: “In sickness and in health until death us do part.”
How easily these words slipped off my tongue that day, only to leave my mind once uttered. Thoughts of sickness and death had no place on this special day.
Besides, Brian and I were young, fit and fancy free — our entire future lay ahead. When the time came to say “I do,” I could not have been happier. All I ever wanted was to be by Brian’s side for the rest of my life.
On the night of our 30th wedding anniversary, it appeared I would be. Time had not diminished the depth of love and respect Brian and I had for each other.
We had lots of plans for the future. How quickly mesothelioma took them from us.
Becoming Informed About Mesothelioma-Related Pain
Coming to terms with Brian’s impending death was the hardest thing I had ever done, especially because for months after his diagnosis, he did not look or act sick.
When recurring pleural effusions caused him to become breathless, he went to the doctor to have the fluid aspirated and returned home to carry on as normal.
When he began to experience serious pain, I recalled the promise I made on the day of his diagnosis — to make sure he did not suffer unnecessarily.
I realized in order to keep that promise, I needed knowledge.
The information I found on reputable websites proved to be invaluable. Although it was uncomfortable to read about the aggressive progression of mesothelioma, it removed my fear of the unknown.
It also made it possible to have physical aids, such as a wheelchair and oxygen, in place before Brian actually needed them, eliminating any distress he would otherwise have suffered.
Even more empowering was the information I found on the internet regarding pain related to cancer. I used this to devise a pain and symptom management routine for Brian that proved to be extremely successful.
Pain Journal Helped Manage Symptoms
The routine centered on good communication. I kept a journal, dutifully recording what was happening to Brian each day. My journal accompanied us during doctor visits.
I was immensely pleased when the doctor told me the journal made his job easier.
Some things I took note of in my journal and why:
- Type of Pain: There are different types of pain (throbbing, burning, tingling, aching, dull and sharp) that can occur within the body due to cancer, its treatment or other unrelated causes. Identifying the type of pain Brian experienced helped his doctor determine where the pain was coming from and the medication needed to treat it. Not all pain responds to the same medication.
- Intensity of Pain: No two people experience pain in the same way. A pain scale using a range of 1 to 10 (from low to high) is a simple tool that makes it possible for individuals to describe the intensity of pain they are experiencing.
The pain scale made it easy for me to understand exactly how Brian was feeling and if the medication he was taking was doing its job. Because his tolerance to pain was stronger than most, he considered a 3 to be a good day.
If he told me his pain level was 5 or higher, I knew that he was in serious pain.
My notes describing the type of pain along with its intensity helped the doctor to determine how Brian was coping with the disease. He was then able to prescribe the correct medication and dosage to keep Brian’s pain and symptoms under control.
The time of the day when Brian experienced pain and whether it was before or after I administered his regular medication was important.
Pain suffered after medication indicated Brian was experiencing breakthrough pain — a term used to describe pain that comes despite taking medication at prescribed times.
This occurred numerous times as Brian’s disease progressed. Because of my diligence and the notes I kept in my journal, his doctor was aware and made prescription or dosage changes as needed.
By working with the doctor in this way, I was successful in keeping Brian’s pain to a minimum.
The same could not be said about the emotional pain I suffered. It was relentless.
I Felt Like I Was Dying, Too
Living in expectation of Brian’s death was the cruelest torture.
He was always my rock. Now, at the worst time of my life, I could not turn to him for strength. It was a huge loss but I put on a brave face for his sake. I did not want him to worry about me.
Although I felt incredibly fragile on the inside, I appeared to be strong. Perhaps this is why few people thought to ask how I was coping.
Whenever I met family members or friends away from Brian, they always asked how he was doing. I understood this was perfectly natural, but I often wondered why they didn’t ask me how I was feeling or how I was coping with the situation.
Given the chance, I would have answered: “I am sad, I am lonely and very afraid of what lies ahead. I can’t bear to think about life without Brian. I feel like I am dying, too.”
Because they didn’t ask, I didn’t receive the sympathy I so desperately needed.
Sometimes I found myself telling complete strangers on the street that my husband was dying. The look of sympathy on their faces justified the way I was feeling.
Despite my fears, I did manage to care for Brian at home until the end.
Taking Better Care of Myself
Since Brian’s death, I reflected on my caregiving journey and wondered if I would have done anything differently.
When it comes to the care I provided for Brian, — the answer is no. The peace I found knowing I made a difference in the quality of his life is immeasurable.
But when it comes to how I cared for myself — the answer is definitely yes.
I didn’t look after my own needs at all. For the two years of Brian’s illness, his welfare was the only thing that mattered to me.
I insisted on taking full responsibility for his care and devoted every waking moment to it. I gave up everything that once brought me pleasure and completely neglected my own physical and emotional well-being.
As a result, I put on a lot of weight, which made me feel uncomfortable and self-conscious. It also caused me to suffer constant bouts of indigestion and trouble sleeping.
My mother paid for my membership at the local gym because she was concerned, but I refused to go because I hated to be away from Brian.
In retrospect, asking a friend or family member to sit with him for an hour each day while I exercised would have been beneficial for us both.
Certainly, I would have lost some weight and felt more energetic. It would probably have stopped my indigestion, as well.
Nothing could have taken away the sadness I experienced as I lived in expectation of Brian’s death, but I may have coped with it a little easier if I had not pretended to be strong all of the time.
I have come realize the only reason people didn’t ask how I was coping was because I appeared to be doing very well, even though most of the time I felt as fragile as an eggshell. I constantly worried that I would not be capable of caring for Brian at home until his death, as promised.
The thought of seeing him die terrified me — but even this, I kept to myself.
To find some relief from my inner turmoil, I began keeping a personal diary. I wrote daily, pouring my rollercoaster of emotions on the pages, often in the form of poetry.
Although this became my strongest coping tool, it could never replace the comfort I would have found in the loving arms of friends and family.
If only I had asked for it.
Lorraine Kember is the author of "Lean on Me," an inspirational personal account of her husband's courageous battle with mesothelioma. She is an accomplished public speaker in Australia and is passionate about sharing her journey with cancer. Her website can be found at www.lean-on-me.net.