Since the first sign of my brain cancer at the end of October 2023, life has been uncertain and changing constantly. The months pass in waves of treatment: chemotherapy, radiotherapy and numerous medications. Until the new year, I thought I would write about markets and products as I had in the past. That has not been possible yet. Life has radically shifted with my brain cancer, and I don’t know if it will ever be the same again.
Five months after my cancer treatment started, my days are different to anything I might have expected before it all began. I have accepted, for the moment, a new pace of life. Never in my life have I slept so much - which my doctors encourage. I wake around 8am, have coffee, breakfast and read the newspapers, and try to stay up until 11.30am. I then fall into a deep sleep until about 1.30pm, by which time I am famished. I eat lunch and try not to sleep again until going to bed around 9.30pm. The day goes slowly; I read and write when I can, although those things are more difficult lately. I go for walks a couple of times a day and might see friends or family. It can feel like I’m just waiting for the day to finish. But somehow, time passes.
Some days I find it all incredibly frustrating. Other days I don’t have the energy to be irritated. But after a lifetime of working, there is a persistent feeling that I’m now not achieving much. I’m having to redefine what “success” looks like, and accept that I don’t have the stamina to do everything I want to do. Each day I’m having to cope with a new normal, facing new limitations. It means approaching life in a completely different way to what I have previously. My focus has become getting through the day.
At the same time, I’ve been trying to grapple with what people do in retirement. It’s a question I’ve been asking friends lately. People stop working, or they work less, and the gap left by work needs to be filled somehow. Some take up gardening, some look after their grandchildren, others might play golf a couple of times a week. I can’t in my wildest dreams imagine that golf would keep me busy.
I just don’t know how to fill my time, particularly now with my vision problems making reading difficult. I’m grateful for a lot about my circumstances, cancer aside, but I’m not going to pretend I find it fulfilling in the way that work was. I’m now realising that six months is about to pass, and I have to find ways of occupying my time.
This illness is unpredictable. Doctors might think one thing but then something different happens. Those unexpected blows can be hard to deal with.
My wife, Deborah, has been wonderful. She not only takes me to every appointment, but also arranges catch-ups with friends, buys new equipment such as glasses and hearing aids (it so happens I needed hearing aids anyway and this was not cancer-related).
My family has been an amazing support. They watch the months tick by with love and care. Friends and neighbours have also been fantastic - dropping round with food and providing support and encouragement.
So that’s where I stand at the moment. After decades of writing and a dozen years with Firstlinks, I still want to contribute. But exactly how and when I do that is unclear. I may need to accept limitations and adapt to changes more radical than I ever would have imagined. My ability to stay motivated over the coming months is important. I literally do not know how long I will live, and the doctors change their treatments, doses and medicine regularly. As weird as this whole situation is, I’m going to have to keep coping with it for a while yet.
Deborah’s perspective
The last place anyone would want to have cancer is in the brain. It is our most complex organ and so much of its function is still being discovered. The particular area that Graham’s glioblastoma is inhabiting is the very inaccessible thalamus. As his wife, I'm constantly finding out new information about its function.
Put simply, it is the brain’s central hub and all senses (with the exception of smell) are relayed through it. A malfunction here will affect hearing, vision, touch, perceptions of temperature and proprioception as well as sleep, alertness and memory.
Graham’s treatment started with a biopsy to discover what type of cancer it was in order to use the best therapy against it. Then came the chemotherapy and radiation, a period of rest from that, and now more chemotherapy for the next six months. It’s a really hard slog. He is deeply exhausted and problems with his vision and the fluidity of his thoughts make it hard for him to read and write. So why has he pushed himself to pen this piece for Firstlinks? Largely because Graham is a writer. Editor of Firstlinks is the role he created to fit his talents of research and analysis, particularly about the nuances of superannuation, and his passion for writing with clarity and precision about the subjects he is fascinated by. To not write leaves a gaping hole in his world.
Less than a year ago, in response to a suggestion that we have not four but five weeks’ holiday in Europe, he stridently declared, “I work, you know!” Graham doesn't have a plan for retirement - quite the opposite. His intention, at least prior to this diagnosis, was to write until he’s 100, probably still playing football with mates from the Alive n’ Kicking football team. Even if he did have some notion of what retirement would look like, it would have been blown sky high by now. Attending to his health is work Graham has never had to do before. Having cancer is a full-time job, and one that leaves little energy for other ambitions in one’s life. It requires the strength of more than one person, and we’re here with him through it.