Ray and Mavis N. married since the fourth day of June in 1960.
For over 51 years, they shared their lives together . Even when Mavis was diagnosed with mesothelioma, Ray assumed the role of a caregiver.
We thank Ray for talking with us and giving us his views. Their name is withheld on privacy.
How was the adjustment of the role of a caregiver?
He was a little over 2 years now and I'm not sure I've adjusted to it. But I'm used to. I know that at this stage it is too early to think I'm good at it. Because I know it will get harder and harder as the disease takes its toll. I just wish I am at the height when I need it most.
What are some of the challenges in caring for a mesothelioma patient?
challenges I'm sure are similar for all carers and mine will arise when my wife is at a stage where it is largely based on my physical, I am no longer young, fit and as strong as I was. I think they'll come when I need physical strength may for lifting. Others will be emotional. Hide my feelings of sadness as we travel this road together.
Have you had an experience of caregiving before?
None for professional or medical sense. But a relationship for life between the two is that taking care of the other is all about. This comes naturally.
What was your reaction when you found Mavis had cancer?
When the diagnosis hit my brain was numb. My stomach felt sick, the way it was delivered was painful. We were told that the test results and the results of culture were back. There are only two conditions that are the result of your condition. The first is a lung infection the other is mesothelioma. We excluded an infection YOU have mesothelioma.
What the hell is it then? You have a terminal lung cancer he said. There was a long silence before I said, you just said Terminal, is there no cure. No. There was the answer. Oh god how long have we got. He said 3 months to 2 years perhaps. With what we have been left alone to think. My world collapsed. That was the end of my world in just a few weeks all I had loved for the past 53 years will end. We looked at each other and held hands, but silence says it all. This pain is with me every day since.
Where did you turn for giving care resources?
Nowhere insofar as we knew there was nowhere to get help. It was foreign to us. I just tried to do everything I could to minimize any stress both physical and mental that I could for her.
Were there many available?
I do not know.
What kind of support groups have you helped?
The only support we have found was to friends and family. But we are members of a group of campers. They were so wonderful in their support. We had so much support from people around the world using groups of people involved in diseases related to asbestos and meso-warriors. Mavis became very active in these areas. She wrote a book and runs a daily blog that has now received over 55 thousand hits and is played all around the world. We get a lot more facebook. What we would have done without the computer is amazing.
What are the common questions that you got on mesothelioma or care giving?
Where did she get? Does it work with her? How long did it take to materialize. What are the symptoms? Is it painful?
We thank Ray for taking the time to share his story as a caregiver. Survivor Insight is one of the sections of our site the most requested and most visited. It helps to build community, and allows others to learn from others. Are you strong enough to share your story? Reach out to us outreach@asbestos.com.
