Photo credit: Ami Barwell for Stand Up To Cancer
Defiance – what does that mean to you?
One dictionary definition is: proud and determined opposition against authority. To me it means challenging the norm, being brave enough to speak up for myself.
Ami Barwell’s Defiance exhibition for Stand Up to Cancer shows the gritty and raw reality of cancer. Sixteen men and women took part in the exhibition to show strength and solidarity against the disease, despite the changes to their bodies.
To celebrate the exhibition, I appeared on a panel alongside two others whose lives had been and are affected by cancer. The panel was hosted by Steph, who has lived with cancer as the wife of Doug, one of my fellow panellists. Myself, Doug and Tasha had portraits in the exhibition which show the scars caused by the surgery which cut away our tumours. What they don’t show is the mental scars which still affect our lives.
Despite being diagnosed with different cancers and having different treatment, the similarities of our stories were striking. We each talked about the psychological challenges that we faced at different points in our navigation of our diseases, and the way that we strived to take back control to try to find our new normal…whatever that may be.
Doug was diagnosed with Medullary Thyroid Cancer when he was 30. He hasn’t been given the all clear as he still has cancer in his throat but for now it’s under control. He had to have surgery to his throat and, as a result, lost his voice. I was really moved, listening as he described the fear; not knowing whether his voice would ever come back again. It has…but not as before and Doug describes that as almost like an invisible scar.
At the age of 17, Tasha was diagnosed with Neuroblatoma which completely changed her face. She talked about the disfiguring effect that the cancer had on her and on the way that others saw her. I was struck by the way that Tasha had to negotiate social media as a young woman coming to terms with what had happened to her. She berated the ridiculousness of selfie culture that she has grown up in, whilst at the same time trying to come to terms with her new face.
This was one of the few times that I’ve met people with cancers different to mine. Most of the time I talk to and meet fellow breast cancer patients, so it was fantastic for me not only to listen to Doug and Tasha talking about their cancers, but also to others in the audience who had different experiences.
One person in particular who touched me was Saima Thompson who has Stage 4 Lung Cancer. She pointed out the very low representation of BAME people in the exhibition and also in the room. This brought me up short as I just hadn’t been aware of it as a white woman. Quite an unsettling & revelatory experience for me. Saima also talked about the large number of BAME women who die from breast and other cancers because talking about their symptoms is considered taboo in their cultures. They just don’t go to their doctors in time for the cancers to be treatable. She is taking action and has set up a BAME cancer support Facebook group.
Saima is one of a growing number of BAME cancer patients who are speaking out about their experiences, trying to break the taboo that exists in their communities. One of her aims is to encourage people to report their symptoms to their doctor at an early stage, or at least confide in their friends and family.
Someone else working hard in this area is Leanne Pero. I met Leanne a few weeks ago when she was speaking on a breast cancer panel. She and the Leanne Pero Foundation has curated an exhibition called Black Women Rising ; the UK’s first all-black female cancer portrait exhibition. It aims to get more black female cancer patients connecting and talking about their cancer experiences, aiding their recovery process. She has tons of other hats apart from advocate for more cancer awareness in the BAME community and she is a seriously inspiring woman.
It seems to me that the word Defiance describes all of these resilient and impressive people. All of us have been and are being defiant in the face of adversity. We’ve all turned truly negative experiences into positives. We choose to speak honestly, openly and defiantly in the hope that others will hear and choose to be defiant themselves.
Stand Up To Cancer have raised over £62million in the UK so far, and their purpose is to speed up life-saving research. If you would like to donate, head here.