Guest Post: In Your Shoes

LIVESTRONG leaders, Vanessa Reid (left) and Shu Milne

LIVESTRONG leaders, Vanessa Reid (left) and Shu Milne

Today’s special guest post comes from my dear friend and passionate cancer advocate, Vanessa Reid.  Vanessa is a LIVESTRONG  leader and has recently returned from the third annual LIVESTRONG Assembly, which aims to promote the collaboration and exchange of ideas among the Foundation’s most important partners, advisors and constituents through small group meetings, presentations and social gatherings. In today’s post, she shares her experience at one of these sessions. 

LIVESTRONG staffer Rebekkah Schear handed out envelopes *and told us to open them; mine said your results are normal but Scott who was sitting next to me, his said that he had cancer. The effect was immediate upon Scott, I could see him well up as we sat there. Such was the reminder of those words it triggered something still deep within him regarding his own past diagnosis of cancer. Others around the room reacted to the news depending on what they read.

I was starting to become emotional watching other people and listening to what they had to say. Rebecca split us in to 2 groups and asked those who had been given the positive diagnosis of cancer some questions. This was interesting as it elicited such a variation of response, not least when geography came in to play. So extreme is the lack of medical care in some countries that one man said that he would tell no one or go for any help as there really is no point as there is no treatment for cancer in his country for most people. Many people in the developed world said they would tell family and friends, but in some instances people said they would not tell employers. This was interesting as this topic came up during three different discussions I was involved in at the assembly. Earlier a lady had said “that we think there is no stigma left here in the US but this right here, not telling an employer well that is because of stigma.”

LIVESTRONG Leader (France) Shu Milne said that she had more of an emotional reaction this time reading that piece of paper than when she was given her actual diagnosis.  It was such a powerful exercise; it was as if cancer arrived in to the room. It opened up the emotional wounds of a cancer diagnosis, it made us feel stigma and see treatment inequality too. Someone who read that their results where normal said it made them feel guilty. This concept of survivor guilt was another topic I heard being discussed a lot over the few days at the Assembly.

During the assembly cancer was never far from us as a topic but for these 30 minutes or so it was lobbed right in on top of us in such a way that we could feel its power to disrupt lives. It also illustrated powerfully to me when I observed Scott, Shu and others that cancer never does really leave your life, their emotional reactions to the words on that piece of paper acutely brought that home to me. I felt privileged to be there and this was just one of many outstanding sessions I took part in at the LIVESTRONG Foundation Assembly.

*This session was titled “In your shoes” and the exercise LIVESTRONG designed for us was to enable everyone to get the patient perspective –  as LIVESTRONG say this perspective is the most important one.