Erin's Story

Erin's Story

I am a pediatric oncology nurse. Over the past thirty years, I have “walked the path” with dozens of kids diagnosed with brain tumours. I never expected to find myself on that same path as a patient.

Many years ago (1994), a brief episode of double vision led to an MRI being performed that showed a small, calcified lesion outside the brain. I was told that it was nothing. “It will never cause you any problems”, said the neurosurgeon who saw me at the time.

So, when I started to have problems with my balance in 2006-2007, I didn’t connect the two scenarios. My family doctor couldn’t find any abnormalities on his examinations. It wasn’t until the return of my double vision in late 2011 that someone ordered an MRI.

After months of waiting, I finally had an MRI in May 2012. Within foour hours of the scan being done, a doctor was on the phone to me. How was I feeling? OK, I guess. Any morning nausea? No (actually yes, but I wasn’t about to admit it). I also wasn’t about to admit to the two episodes of being unable to weight bear on my right side. They went away, after all. I am a single mom. If the doctor ordered me to go to the ER, who was going to look after my kids?

Everything came to a crashing halt a week later. A night of excruciating pain led me to the ER the next morning. By that time, one of my oncologist friends had seen my scans and had gone into action. I was admitted to hospital, and after four days in the ICU, I underwent total resection of a posterior fossa (cerebellar) tumour on June 4, 2012.

I went home ten days later and returned to work (and graduate school) in September, 2012. The diagnosis? Cerebellar meningioma. Non- malignant.

I ran my first Spring Sprint (now Brain Tumour Walk) this past June, one year after my surgery (almost to the day). It was an eye-opening event. I realized how lucky I was to be alive. I was also hit by a massive wall of emotion that I didn’t understand. Why had I been spared when so many others had suffered?

I had recently returned to my fitness regime and I was in the best physical shape of my adult life. A month before that run, I felt like I could conquer the world. All of a sudden, my own emotions were all over the place. What was happening to me ? Why had no one warned me after my surgery that I was going to feel this way ? And why was I feeling like this a year later??

Not knowing where else to turn, I finally called Brain Tumour Foundation of Canada. For the first time since my surgery, there was someone who acknowledged that “non-malignant” didn’t necessarily mean “benign”. I had experienced a life-threatening event and I needed time to heal, emotionally and spiritually, as well as physically. I needed to give myself permission to experience the emotions that I had denied myself for so long.

Three months later, the dust is finally beginning to settle and my emotional strength is returning. My last neurosurgical appointment in late July confirmed the meningioma diagnosis. There is no recurrence. I feel as if I can finally breathe again.

A close colleague, himself a cancer survivor, recently asked me a very poignant question. “How will you use this experience to make the world a better place” ? I still don’t have the full answer to that question, but sharing my story is a start. The brain tumour journey isn’t just a physical one. Reach out to others, talk about your story, and realize that this experience will change you forever. You are now a SURVIVOR.

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