On the need for agency

The value of action when you feel powerless

After diagnosis in January the next few months was a blur of shock, surgery, initial recovery. I had to figure out how to explain this to friends and family. Work with Andy and Josh to see how this would reshape our work together on Rodeo, and with Janna on how our lives would need to be refactored.

It became quickly apparent that in medical terms, I would simply have to trust the process - I would have no agency here. The constraints placed upon me would provide even less autonomy in the rest of life too. For example, no driving for two years after Radiotherapy, reduced social energy and immune system curtailing my work with other conferences.

I was reminded of so many of the speakers and writers we hosted at Mind the Product over the years who talked about the value of giving people agency in their work. It offers an individual a sense that they can influence outcomes and can provide a little more psychological stability. I knew I needed to find something here fast that I could do for myself.

I’ve written already about the routines I developed to help get through treatment. I went further into the medical side too, looking into nutritional research. I found things that support my bloodwork through Chemo, but even things that go further and make the actual chemo treatment even more effective. As with many meds, the cells under attack can become resistant to the chemotherapy treatment. I found something that current clinical trials are showing makes cells more sensitive to chemo attack: sulforaphane.

Finding and learning about all of those things was also part of the decision to start writing here. I needed space to process, but also wanted to share what I learn in the hope that maybe this helps others on their journey too. One of the things I’m grateful for is the help and support I’ve had from other brain tumour patients as I’ve travelled this path, and the sense that this might help others is a positive thought in tough year.

Something that really blew me away recently was my son’s decision to find some agency in this situation too, and that prompted me to write up some thoughts on the value of actually having some agency in tough situations. This has obviously hit everyone in the family hard too, and friends have often said Harry takes after me in many ways: need to take action is clearly one of them. A friend is doing a cycle ride from London to Brighton to raise funds for The Brain Tumour Charity, and Harry was quick to get involved. I’ve written about this charity before - they fund a wide variety of research projects but also invest in community and peer support programmes, and those were an absolute game changer for me in the early days of adjustment.

I’m therefore giving him the shout here - this charity has been immense for me, and I’m so proud of the Lad for taking the initiative and putting himself out there like this. We’d all appreciate your support there, if you’re able.