I live in the UK and am an artist and Lecturer at University of the Arts London.
In 2018 after a year of increasingly severe back I developed Cauda Equina Syndrome, a neurological emergency, which eventually led to a diagnosis of a very rare primary bone tumour in my spine, Giant Cell Tumour of the sacrum. When I say rare, in fact one-in-a-million. The route to diagnosis was shocking, shattering, and totally reorientated my sense of who I was.
The rarity of my condition has meant I've been under treatment with some very specialised teams of multi-disciplinary Doctors in sarcoma and spinal oncology across two London hospitals, the Royal National Orthopaedic Hospital London and University College Hospital London. I'm currently taking an experimental drug, Denosumab, to which I've responded well. In July 2018 I was told I am stable and am currently in the middle of a shared decision-making approach with my Doctors to work through what happens next.
In the midst of this I've discovered I am one of those patients who wants to know everything about my condition. I've been called an expert patient by my Doctors recently. Making the difficult decisions about treatment has sometimes felt like I'm sitting an exam but I am helped in this by a great relationship with some of my Doctors.
In June 2019 I was invited to speak at a university symposium on vulnerability at University of the Arts London (UAL, where I work), using my experience to consider wider issues of illness and mental health in relationship to institutional contexts. It was the first time I had spoken publicly about my illness. I am pleased to say I got a passionately positive response. There were even gasps!
I've recently been working with colleagues at UAL to set up a research hub for Arts, design and health, which we are calling HEARD.