Following his diagnosis with a glioblastoma (GBM) in November last year, Martin Heaney has launched a podcast series in which he explores what it is like to live with brain cancer. He writes an interesting blog exploring his sense of time after being given a life-limiting prognosis.
I am a 61-year-old lecturer in performing arts at the University of East London. I am living with a diagnosis of grade 4 glioblastoma, diagnosed five months ago and am currently on a course of chemotherapy as standard treatment.
It all came as a shock. So much disruption and discussion revolving around time, or, with a life-limiting prognosis, what felt like a lack of it.
How much time did I have exactly? Doctors could not tell me. They gave me average forecasts. All of a sudden time was not mine to take or have in ways that I had taken for granted a few weeks previously. My diary was shredded.
Somehow, this didn’t frighten me – not straight away at least. Relaying the news about my diagnosis to friends and loved ones was more difficult. The end-of-life probabilities were harder for them to hear than me.
All the same, so many thoughts about the future went crashing through my mind: people I wanted to see, conversations I wanted to have, places I wanted to go. Alongside that, I had completely new schedules: urgent appointments, therapies, friends who wanted to see me soon. Time became scarce, hard to find. But each moment became more important. I had less time for trivia or unpleasantness. I became inclined to turn down some invitations.
My experience of time was changing. Things felt more heightened, urgent, sometimes unrelaxed. I began to ask myself whether the steroids I was taking as part of my treatment were having an effect. I was forgetting things. Was my sense of time and memory still reliable?
As the months since my diagnosis have passed, I have been finding a new sense of time, chaotic, but not constrained. I am thinking about the potential repercussions of my death but I am not preoccupied by them. I am writing more. Yes, I have cancer with a life-limiting prognosis but I also feel more alive and creative than I did before.
I realise that thinking about the future is essential. I plan where I can. I can find time to be with people and have conversations with those closest to me. These have become vital to me, as have events and reunions.
Hospital appointments and treatment sessions create a new rhythm. Sometimes I resent that… I have to cancel things I might enjoy. Time is not my own like it used to be.
How can I reclaim time? Find a new normal? Finding moments to stop activity has become important. It’s not just about managing the fatigue that comes now with chemotherapy. It’s about not feeling subject to every mood or thought that enters my mind. https://anchor.fm/dashboard
Steroids continue to heighten my feelings and experience, sometimes in ways I don’t enjoy. Regrets are not always helpful. Finding ways to separate myself from them gives me some feeling of independence, a way of reflecting not just reacting.
Finding moments, or stopping what feels like a rush of sensation, becomes important: being in my garden, just sitting, not going out or answering the phone. But finding these moments for myself can be hard.
I had a seizure recently and spent time in A&E. I am managing a phased return to work. Friends keep advising me to rest while I have chemo and I do. My rituals help: morning prayer and yoga for example. But I need to be more generous with myself when I can.
To do nothing is the hardest thing. But sometimes it works. Choosing just one thing to focus on and occasionally allowing myself to stop. Writing pieces like this and imagining new possibilities of future connections with readers. I may not have time in the way I once did, but there may still be opportunities to grow and be alive in the times and spaces I am creating in new between times. Finding time to stop may be the best way of starting to find a new sense of time, a new life with cancer.
To listen to Martin’s podcast please go to: https://anchor.fm/dashboard