Watching and waiting with a brain tumor diagnosis

Claire Snyman brain tumor survivor_ casual[1]2
Claire Snyman

Six years ago, at 34, the mother of a four-year-old, I was diagnosed with a nonmalignant brain tumor.

No one can prepare you for the words, “you have a brain tumor” or for the feeling that the world has stopped. The voice of the person delivering that awful message becomes your only focus.

Surgery was not an immediate option for me, so my treatment plan was to join the group of ‘watch and wait’ patients—monitored with yearly MRI scans to ensure their tumors were not encroaching on the important grey and white matter inside their skulls.

But watch and wait is easier said than done. I found it hard to quiet my mind. The "what if’s" and "what-now’s” began to fly through my brain.

So how did I learn to ride the wave of uncertainty and change in my life following my diagnosis? It was not an overnight process, but here are a few things that helped me along the way.

 

  • I surrounded myself with family, friends and a positive and solid medical team;
  • I became involved with a positive activity to focus both physical and mental efforts elsewhere e.g. charity work;
  • I became an informed (but not overwhelmed) individual about my condition;
  • I started to build my own toolkit which helped me feel more in control e.g. gathered resources, joined a support group, learned to become my body’s own advocate;
  • I remembered to breathe. When I was so caught up in everything going on, I reminded myself to mentally stop for a moment and take a few deep breaths to bring me back to the present; and
  • I wrote down my thoughts. The health benefits of journaling are vast, from clarifying thoughts and feelings to being able to capture your worries to simply get them out of your head. All it takes is five minutes of peace and quiet, paper and pen.

 

Two years after diagnosis, my tumor doubled in size and my brain started to swell. Surgery was required. After my surgery I had to concentrate on recovery, where I rode the wave of uncertainty yet again. I had to get up and remember how to surf once more. 

Overall, it was always important for me to try and find a way to deal with the uncertainty before it dealt with me.  Learning to ride the wave was the key.

Claire Snyman is an author and a blogger.  She works as a volunteer in the brain tumor community and a speaker, most recently at the American Brain Tumor Association’s National Patient & Family conference. Twitter: @clairehsnyman. This guest column appears on "Diagnosis: Cancer" through our partnership with Inspire, an Arlington, Va., company with condition-specific online support communities for over 850,000 patients and caregivers.

 

 

 


Read more Diagnosis: Cancer here »