In the past, many of us had never heard of the word. Tragically, due to the ever growing list of innocent people who have lost their lives due to it, we now know that mesothelioma is caused by the inhalation of asbestos dust and that many years may pass between inhalation and onset of disease.
With no known cure presently available, the shock of receiving a mesothelioma diagnosis is intensified by prognosis, fear of the unknown and pain associated with this disease. My husband had lived in the West Australian mining town of Wittenoom for seven short months as a child. Forty five years later, at the age of 52, he was diagnosed with pleural mesothelioma and given a prognosis of three to nine months.
Accepting that his disease was terminal was a catastrophic experience and my feelings of helplessness were overwhelming. I greatly feared for the pain he would suffer and determined that I would do everything within my power to ease his burden. I realized that I could not do this without knowledge and searched the internet for everything I could find regarding mesothelioma; the stages of the disease and the pain and symptoms my husband would experience as his disease progressed. I learned a lot and in this way, I came to realize, that although I could not stop my loved one from dying - I could help him to live.
One of the most important things I learned, was that in order to obtain the best possible pain control - medication must be taken at regular prescribed times, regardless of whether pain is or isn't present, effectively keeping in front of the pain. I learned that there are different types of pain and that not all pain responds to the same medication; and how to measure intensity of pain and encouraged Brian to communicate to me - the type of pain he was experiencing and its intensity. Brian soon realized the benefits of this - It was an immense relief for him - to know that I understood what he was experiencing and more importantly - that I could do something about it.
I also began keeping a daily journal in which I listed the various medications Brian relied on, the times they were to be taken and their dosage. In this journal, I also recorded any break through pain he experienced careful to describe its type and intensity - Any symptoms Brian experienced both due to the progression of his disease and the side effects of the medication were also recorded. I took my journal with me on every visit to the doctor, my records enabling him to easily assess how Brian was coping with his disease and provided the means by which to accurately determine the strength of medication needed, to bring Brian's pain and symptoms back into control. As my efforts resulted in his improved quality of life, I lost my sense of helplessness and gained strength.
Author: Lorraine Kember
Experience has taught me that knowledge is the key, to better quality of life, not only for the mesothelioma patient but for those who care for them. My understanding of the stages and symptoms of mesothelioma, allowed for me to be one step ahead of its progression and gave me the opportunity to have medication and later, physical aids such as oxygen, wheelchair etc - on hand before Brian needed them. This alleviated much of the fear, pain and discomfort he would otherwise have suffered.
Chronic untreated pain is debilitating, it dramatically affects a patient's ability to participate in daily routines and in some cases takes away their will to live. Through my experience and the knowledge I have acquired, I have come to realize that many people are suffering chronic pain unnecessarily. This is in part due to them not being made aware of the importance of pain management and being shown the simple tools necessary to achieve it: lack of knowledge regarding the benefits and side effects of available medication is also a factor.
Many patients associate morphine and methadone with drug addiction and are reluctant to take it due to their belief that it will cause them to become "high" or sedated, this and their attempts to brave out the pain results in their pain spiralling out of control. This could be prevented if they were informed that chronic pain effectively "uses up" medication and that these drugs, when taken for the relief of pain associated with cancer, can dramatically reduce both the occurrence and intensity of pain, without causing sedation.
Testament to this, despite the large amount of methadone Brian was taking, he remained active and alert, drove his car for eighteen months after diagnosis and was able to continue going fishing, which was the passion of his life. Keeping him out of pain became the reason for my existence and I was vigilant in giving him his medication at prescribed times. There were many occasions when caring but uninformed loved ones and friends, said to me: "Brian does not need for you to be giving him medication at this time - he is not in pain." And I would patiently explain to them, that the reason Brian was not in pain, was because the regular medication he was receiving effectively allowed for him to remain in front of it.
As Brian's disease progressed, there were times when his pain broke through his stable medication, however due to our good communication and the use of hydromorphone; we were able to bring it back into control within a short time.
I believe that all patients and their carers must be encouraged to talk to their doctors about the progressive symptoms of mesothelioma, so that informed choices can be made regarding available treatment and medications. It is important for health professionals to realize and support a family's need to maintain some control over their lives, this removes their sense of helplessness, gives them purpose and helps them to cope with the anticipatory grief associated with terminal diagnosis.
Brian was not bed bound until three short days prior to his death. As was our wish, he passed away at home surrounded and supported by all of his loved ones. Through this, I have found much peace...
