After undergoing cancer rehabilitation for almost three years, a thought has formed to write and share the experiences I have learned having a serious cancer disease and the rehabilitation needed to tay alive. But not as an I had cancer kind of genre, but more of an account that travels with me through the work i engage in.
I have so far been lucky. The diagnosis I got during fall of 2015, Non Hodgkins, large B-cell lymphoma (LBCL), is, to quote a dear colleague of mine, possibly ”the best cancer” diagnosis to get in my age, even though it is very aggressive, it responds well to treatment. There are well-developed treatment methods and a lot of knowledge about how these work. But how we respond to the situation, treatments and investigations, the care we face, the support we receive from people in care and in the social network that surrounds us, in its entirety, is of a very fine weave of relationships, I am fully aware it differs greatly from case to case.
For a long time I have been working on problematising digital mediated care, in research, teaching and technology development. Throughout the stages of my rehabilitation process, various phases are documented in image and text. Through this experience, my curiosity about how we can understand digital care has grown. For me, this curiosity has played an important role in managing the balance between being patient and the person I am with or without illness. Cancer rehabilitation do take a lot of one’s power and energy, it is exhausting in so many ways. It’s really only now, after 15 months ini remission I find my self having the energy to start working with the data I have collected and to deal with it in a organised manner.
On the 26th of February, this coming Monday I will give myself the experience to ski the 90 km between Sälen and Mora in Sweden. The efforts made from being seriously ill to again be able to endure a test as Öppet Spår entail, combined with continued work in the exploration of digitally mediated rehabilitation, is the focus this page onward will have.