Tuesday, April 16, 2013

Guest blog

Several weeks ago I was approached by a man named Cameron Von St. James.  He had read my blog and wanted to share his story.  His wife has a rare form of cancer called mesothelioma and he wanted to share his experiences as a caregiver.  Even though this is not related to CCHS, I still feel that it is important to share.  Rare diseases have a huge impact on families.  Many of us with a rare diagnosis have the same experiences and feelings.  I think that it is important for us to share our stories.  

Here is Cameron's story.

Learning to Cope with a Cancer Diagnosis

I know that my wife, Heather, has often wondered how her mesothelioma diagnosis affected me as I cared for her. I hope that this will give her more clarity and provide some level of help for those currently struggling through similar situations.

Our only child, Lily was born about three months before my wife was diagnosed with mesothelioma. While this should have been a joyful time in our lives, our joy was tempered with grief and deep concern as we heard the doctors’ diagnosis of mesothelioma. At that point, I had no idea how we would get through this seemingly impossible dilemma.

Immediately, I was asked to help make healthcare decisions with my wife. Although I felt completely inadequate for this task, I knew that I had to face reality because it was vital for me to be there for my wife and help make these decisions.

Initially, I could only feel angry and scared, and I did not know how to deal with these emotions. Many times, I found myself lashing out with profanities because I did not know how else to respond. However, for my wife’s sake, I gradually overcame these feelings since I knew she needed me to be there for her. I learned to mask many fears so that she would feel cared for and protected.

After Heather’s mesothelioma diagnosis, I found myself incredibly busy caring for her as well as taking care of daily tasks including childcare, work and travel. In the beginning, I had trouble finding the time for all these tasks, but I soon learned a system of dealing with the most important tasks first, and taking the list on one thing at a time. In addition, our family was blessed with many offers of help from family and friends. Without these people, I am not sure how we would have managed throughout these days.

One of the hardest periods was shortly after Heather’s surgery. For about two months following this, both Heather and Lily stayed at her parents’ home in South Dakota. Heather used this period to recuperate from her surgery and to prepare for her next round of mesothelioma treatment. However, during these two months, I only saw my wife and daughter once.

To make this visit, I had to travel 11 hours on a Friday night in a snowstorm. Upon my arrival, I was exceptionally tired, and only got to spend a little time with them. On Sunday afternoon, I had to turn around and repeat the 11 hour drive back home. It was exhausting and short lived, but seeing my family was worth every second of travel.

These two months were quite difficult, but I realize that they were necessary. Making the decision to be apart was the best decision for our circumstances because it allowed me to work while knowing that my wife and daughter were receiving necessary care. This was just one of the hard choices that I found myself making during this time.

Even though these were difficult times, I learned several things. First, I learned to accept help from others. Second, I found that the ability to make difficult decisions is actually a blessing because it gave us a sense of control over this difficult situation. Through all of our struggles, Heather is still here and still healthy over six years later.  I hope that our story can be a source of hope and help to those currently battling cancer.

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