In This Together: The Bond Found in Chronic Illness

This blog has become a far greater project than I ever thought possible. I began writing here during a very difficult point in my life. I’ve written about my ups and downs, successes and failures, and general musings about life with the honest belief that no one would ever care to read what I had to say, but that I had to try to reach out to others anyway.

Then I started receiving emails from people telling me how much I’ve affected them with my writing. What many of them don’t realize is that their emails affect me too, and the last such email I received is the reason for this post.

Cameron first emailed me back in late August and shared his wife Heather’s story with me. Heather is a Mesothelioma survivor, which I’ve since learned is a rare title to have. She was diagnosed just months after giving birth to their daughter, Lilly. Cameron and Heather have a mission similar to mine: spread awareness about a seriously misunderstood disease.

Heather and I have very different diseases, but there is still a sense of solidarity. Much of the advice Heather gives to those with cancer is helpful for those with RA. So today, on Mesothelioma Awareness Day, I wanted to show my support of Heather and everyone else battling Mesothelioma by giving her (and Cameron!) a voice in this community.

 

A: I guess we’ll start with the obvious: What is Mesothelioma?

H: Mesothelioma is a cancer of the lining of the organs. There are three main types: Pleural, which is the lining of the lung, peritoneal, which is the lining of the abdomen, and pericardial, which is the lining of the heart.

A: Did you know something was wrong long before being diagnosed?

When I had Lily, 3 1/2 months prior to my diagnosis, they told me when I was in the hospital that I was anemic.. this was the first clue something was amiss, however, just having had a c- section, it didn’t seem like a big deal.. they told me to just be aware and perhaps eat more red meat. Then a couple of months later is when I knew it was more than just post partum symptoms. I was tired all the time, and extremely short of breath.. this is what made me go to the doctor.

A: I can only imagine how terrifying a cancer diagnosis is. How did you cope with all of the emotions you most likely felt after your diagnosis?


H: After the shock wore off,  I guess I would say a quiet determination set in. I had a tentative treatment plan laid out before me, and I just concentrated on getting through one day at a time. I took a leave of absence from my job, so I could spend as much time with my daughter as possible. I sought out my pastor, and went to him for prayer once a week, as well as keeping busy. I didn’t let my mind go to the negative.. I would beat this.. I had to.

A: Lots of people want to know how they can best support their ill spouse. Was there anything in particular that Cameron did for you that helped make the treatment process easier?

H: At first he was so angry.. it was hard.. we weren’t really talking much about it because he would just get so mad. Then all of the sudden, he made a turn around and he was my rock. I’m fiercely independent, and like to have control over certain things, and at a time when everything else was so out of control, I had to the over the travel arrangements and appointments. He let me do what I needed to do. He didn’t try to take over, he didn’t treat me like I was helpless or useless, quite the opposite, he stood by me, and encouraged me. He kicked me in the butt when I started getting down, he kept me smiling and laughing..And as far as parenting Lily, he was such an amazing help.. I don’t know how I would have done this without him.

A: Cameron, how did you cope with your wife’s cancer and your new role as her caregiver?

C: I was so angry. I have to say I didn’t handle her diagnose very well.  This is not what I signed up for when I got married and wanted to be a dad. I was faced with the possibility of raising Lily alone, and I was not ready. Once the anger subsided, and I realized people really wanted to help,I did everything I could to make this easier on Heather.

A: When I was initially diagnosed with RA, I turned to my writing in order to find strength. What was your outlet?

H: I felt like such crap for a year, that it took all I had just to be a mom. I didn’t really have or need an outlet. I simply didn’t have the energy for it. As time went on, and  started feeling better, I did a lot of things with my daughter.. just lately has writing become something I use, as well as drawing.

A: One thing I realized right away is that the RA community is very tight-knit. In a matter of a few clicks, I was able to connect with thousands of people just like me with a ton of tips and information. Did Mesothelioma patients have this kind of support system before you launched your blog and website?

H: When I was first diagnosed,  I felt utterly alone and disconnected.. No one had heard of mesothelioma, and when I did finally meet people who had it, they were much older men.. It took 4 years for me to connect with the meso community through the Mesothelioma Applied Research Foundation (www.curemeso.org) I went to their annual symposium, and met other survivors.. WOMEN survivors, my age! It was like a whole new world opened up to me.  I knew I had a lot to give and that is why I started the blog.. I didn’t want someone newly diagnosed feeling like I did..I want to communicate with people and connect them to all the resources available.  They can connect and find my story at www.mesothelioma.com/heather

A: If you could only give one piece of advice to someone battling an incurable/chronic illness, what would it be?

H: Find a specialist. Don’t be satisfied with what your family doctor says. Had I listened, I would not be here today.  Finding someone who knows your illness and knows what to look for makes all the difference in the world.

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