Between 2009 and 2011 I managed the impressive of feat of developing a life-threatening pregnancy complication called HELLP syndrome, having a premature baby, being diagnosed with Stage IVB diffuse large b-cell lymphoma and – just for good measure – contracting meningitis. My lymphoma was treated using the R-CODOX-M/IVAC-R regimen through a clinical trial. It’s pretty hardcore as these things go and meant six months in the hospital and eight shots of chemo to the spine. Shortly afterwards, I gave up reading the Economist to make more time in my life for People magazine.
Getting back into shape – physically and mentally – hasn’t been easy. Thanks in large part of medical advances, I’m still here, but it’s not been without it’s sacrifices. My lymphoma is in remission but one of the drugs that was used to treat it (Rituximab) left me with a chronic immune deficiency condition that requires monthly treatment. In short, I went from a pretty healthy 30-something, to one that was deathly ill, to one that manages to get by – all in the space of a couple of years. It’s been an adjustment to say the least.
I love airports and I have a terrible sense of direction. I enjoy good ideas even when they’re poorly executed. I am optimistic about pessimism but generally quite pessimistic about optimism. Eating food that comes on wooden sticks makes me extremely nervous. In my pre-illness life, I worked in international development and threw around words like ‘equality’, ’empowerment’ and ‘participation’ a lot. I thought I knew what they meant and I loved working in countries like Sierra Leone and Vietnam. Post-illness, I’ve tried to apply my understanding of participatory processes to patient involvement and engagement in the UK. It’s been an interesting experiment so far, with lots more to come but one thing I’ve learned so far is that we still have a long way to go in developing a truly collaborative model of health care – one in which both the patient and the clinician have views that are respected and acted upon.
I now work mainly as a freelance consultant in the field of patient involvement and engagement, as well as working for Shine Cancer Support, an amazing little charity that supports adults in their 20s, 30s and 40s with cancer. If you’d like to read more about my work, look here.