Sunday, July 14, 2013

Heather, Lily and Hope

This weeks article might seem a bit out of place for a Stroke blog since it deals with cancer but, really, when you think about it, a caregiver is a caregiver is a caregiver regardless of why. The patience, work, hopes and devotion required are the same. 

Here is a letter I received recently from a man named Cameron. He wanted to share his experiences with us and I wholeheartedly welcome them. I feel certain you will, too.  

Here's his letter, followed by his story:Hi,

I came across your blog and really identified with a lot of your writing. My name is Cameron Von St. James and I was thrown into the role of caregiver when my wife, Heather was diagnosed with a very rare and deadly cancer called mesothelioma, just three months after the birth of our only child. We were initially told that she could have less than 15 months to live, but she was able to defy the odds and eventually beat the cancer. During her treatment, I had to learn quickly to be an effective caregiver, and there were many times when I became overwhelmed by the role, but we managed to fight through it together.

I was wondering if you would allow me to write an article about my caregiving experience for your blog? I know that this cancer isn't necessarily the focus of your blog, but I think that caregivers for any sort of illness often face many of the same challenges. A positive, uplifting story about overcoming illness of any kind can be a huge help to caregivers when they're facing a challenge! I'd love to share this message with your readers who might take something away from it. Please let me know if you’d be interested in seeing and sharing an article about our story.

Thanks so much for your help!

Here is Cameron's and Heather's story:

On November 21, 2005, my wife Heather and I had our entire lives shook to their very foundation because, on that day, she was diagnosed with malignantpleural mesothelioma, a very serious form of cancer.  It's also the day I took on the role of caregiver, a role I never thought I'd have to assume, and a role I was in no way prepared for. Just three months prior to this devastating news, we'd been celebrating the birth of our only child, our precious daughter Lily. We were heading into the holiday season, and joyfully anticipating Lily's first Christmas, when everything started falling apart.

The realization of what I could expect as a caregiver began to set in even as we were leaving the doctor's office right after he broke the news to us. He advised us to seek the advice of a specialist, and gave us numerous options in that regard; the local university hospital, a regional hospital with a great reputation, but lacking a mesothelioma program, or a mesothelioma specialist in Boston called Dr. Sugarbaker. We quickly picked option three, and could only pray that this specialist would save her.

The next two months passed in a chaotic blur. Prior to Heather's diagnosis, we both had jobs and set schedules, that was now a thing of the past.  Heather was unable to work at all, and I was only able to manage part-time hours. Between doctor appointments, traveling to Boston and caring for Lily, I gradually began to feel overwhelmed and helpless.  Anxiety that I would end up a penniless widower raising Lily alone began to creep in and over-take my thoughts. There were times when I would curl up on the floor and cry like a baby.  But never, ever, when Heather could hear or see.  I had to be strong for Heather.  That was my mission.  That was my purpose.  This sense of responsibility got me through these rough moments, and I resolved to be there for her no matter what.

Our saving grace was love and support from family, friends, and even strangers. The best bit of advice I can offer to anyone in our same situation is that if someone offers you any kind of help - take it. Don't be shy or too proud. It's one more thing off your very full plate. It will also serve as a much needed reminder that you and your loved one are not alone. You have family and friends who care about you and are willing to lend a helping hand if you ask them.  Don't be afraid to ask them.  You'll probably be surprised how eager people will be to pitch in - even if all you need is to vent for a few minutes. Learn to say yes to help without feeling ashamed.  Asking for help in times of distress is a sign of strength, not weakness.

Being a caregiver for someone who is seriously ill is a tough job. There's no point trying to sugar-coat it. It's very hard to deal with that kind of stress, uncertainty and anxiety on a daily basis. The fact is, this could be the hardest challenge you ever face in your entire life. You're going to experience times where it's very hard to resist being swept away by emotions like fear and anger.  It's extremely tempting to wonder, "Why me?" It's also very easy to ruminate on the unfairness of life, and to ponder how others walk around totally healthy while your loved one suffers. Don't beat yourself up for this, but don't let these emotions take you over. Its important to stay hopeful no matter what – hope is the most powerful weapon against despair.

It took years for Heather and I to return to a normal life, but we did. After mesotheliomasurgery, radiation and chemotherapy, she beat mesothelioma and is celebrating seven years cancer free.

Being a caregiver taught me many valuable lessons during my wife's journey. I found that accepting help from those around you should not be seen as a sign of weakness, but as the ability to accept love from those around you. Being a caregiver for a loved one taught me to advocate for a loved one in ways I'd never thought were possible for me previously, which also led to me learning how to manage my time and stress levels more constructively. When Heather's health improved, I returned to college, earning a degree which would have been much more difficult previously, as I lacked the necessary skills that being a caregiver provided me.  Most importantly, I learned the incredible healing power of hope.  Never give up hope, and you may find that you and your loved one are capable of accomplishing more than you ever imagined was possible.

Thanks for sharing that Cameron. One of the most important things a caregiver can learn is that they are not alone. There are others going through the same things and if we can connect somehow the road can get a little easier. 

One of the many things we do during our weekend Stroke camps is set aside time for caregivers to meet with each other and share their experiences and the ways they cope. Separately, the stroke survivors get together, too, and share their experiences as best as they can.  

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