After being diagnosed with a rare Brain Tumour aged 31, Stephen was given a 12 to 18 month prognosis. This devastating news takes time to register, and longer to come to terms with.
During the initial days and weeks of Stephen’s diagnosis we sought information and support, online, in person and by telephone. At face to face meetings assumptions were made that we were brothers, a raised eyebrow, surprise, disapproval or apathy followed when corrected.
I was asked about my Wife, he was asked how his Wife had responded. The silence which followed was uncomfortable.
Online support was less hurtful, words on a screen cannot convey facial expressions or stunned silence however we were stunned by homophobic remarks in public forums.
Steve and I discussed forming an LGBT Cancer Support group as we’d been unsuccessful in finding one in the UK. Discussions and debate ensued but we agreed something needed to be done.
Steve planned to help me. He felt his role was supportive, not because he didn’t want to be part of it, but because he wouldn’t be around forever.
Nine months after his diagnosis Stephen died, our website had gone live with a holding page. We felt cheated and hurt by fates cruel twist but, Stephen was passionate about this and it will remain his legacy.
The fear of reprisal may not be justified and discrimination may be a perception but additional worry is unwelcome. Support is needed for the patient, their partner, family and friends who will also have concerns.
Our role is not to replace a doctor or other support service but to provide additional support targeted at the LGBT community providing re-assurance at a difficult time. If you have been affected then get in touch. We are here to hear.