Self-advocate, anyway

January 14, 2015

By Corrina Cameron

2014 08 12 Corrina CameronPost-cancer is a wonderful place to be, but your medical journey doesn’t stop there. In order to thrive post-cancer, it is very important to self-advocate for any difficulties you are having.

Since the removal of a gastrointestinal stromal tumour and half of my stomach in 2007, life has changed considerably. No one warned me that it would. No one told me that I may not be able to tolerate certain foods any more. No one told me to expect to be nauseated for months after every meal until I figured out how my new stomach worked. No one told me I would not be able to absorb B12 naturally and would have to get shots for the rest of my life. No one told me that iron and calcium would also be difficult to absorb and that I’m always at risk of anemia and osteoporosis. No one told me that I would develop hypoglycemia. All these are the little inconveniences (cancer’s equivalent to “first world” problems) that come with having survived a rare and misunderstood cancer.

I will admit, there have been frustrating moments with my surgeon, oncologist, doctor, and nutritionist over the years. I lacked the stomach acid to properly digest food, but my surgeon thought I had too much acid and put me on acid reflux medication, which clearly did not work. My oncologist couldn’t care less about any post-surgery inconveniences. The cancer hasn’t come back, so his job is done. My doctor thought I needed to take Gravol to help with the nausea, but didn’t address the cause of it. The nutritionist insisted I eat more dairy to help with the hypoglycemia after I had just said dairy made me really sick. For some reason I thought these experts could figure me out, but was let down over and over. “I just want to be as normal as possible,” I thought, but none of them seemed to have solutions to my inconveniences.

I wanted to have energy again, play sports, and go out with friends for dinner and not get sick. Maybe that was too much to ask after surviving cancer, but I wanted to live life now that I had more of it left.

I started seeing a naturopathic doctor who specialized in cancer and digestion. She helped get my eating on track and diagnosed my B12 deficiency. She also inspired me to do my own research on living with a partial gastrectomy. Thank goodness for the Internet! All of a sudden, the bits and pieces of fragmented knowledge that I had gained over the years started to come together. My symptoms and conditions all started to make sense. I started seeking out the help I needed and asking more intelligent questions of medical professionals. I also came to realize that doctors are humans and can’t possibly know everything about me and my newfound condition, especially one so unique and rare. They did the best they could with the knowledge they had.

The medical system in Canada is great, but not perfect. It is important that we equip ourselves with knowledge and advocate for ourselves when things aren’t quite right. Also, don’t feel guilty advocating for your post-cancer inconveniences. You are still alive, so try to really live.

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