Where I Came From

I am from Ontario, and much of my background is rooted in the rural and small-town parts of the province. I grew up in a world where people fixed things, built things, worked with their hands and generally expected you to figure out how to solve a problem rather than stand around admiring it. That stayed with me. I have always been interested in how things work, whether the thing in question is a piece of equipment, a computer, a political system, a historical event or my own increasingly temperamental body.

I did not appreciate how enormous that assumption was until it disappeared.

Life Has a Before and an After, but Not a Clean One

People like to divide their lives into chapters because chapters are tidy. Real life generally refuses to cooperate. There was no single morning when I woke up and crossed neatly from one version of my life into another. Things changed gradually. Health problems accumulated. My ability to work changed. Money became tighter. Plans became smaller. Things that had once been automatic started requiring thought, and eventually some of the basic assumptions I had carried through adulthood no longer applied.

Work had been a large part of how I understood myself. Losing the ability to live that way was not simply an employment problem. When you have spent years being useful in a very practical sense, being unable to do what you once did changes more than your bank balance. It changes how you see yourself.

That affects the things I write about here because it affects the life I actually live. If I write about technology, I care whether something is worth paying for. If I write about a product, I am not assuming everyone has several hundred dollars sitting around for the premium version. If I write about food, home, entertainment or daily life, it is from the perspective of somebody who has to look at the price.

There are plenty of lifestyle sites devoted to aspirational living. I have no objection to them, but I would be hilariously unqualified to run one.

This is about the life I have.

Then Cancer Got a Name

Cancer did not suddenly arrive and replace everything that came before it. In my case, it had probably been hanging around for years before I knew exactly what I was dealing with.

My skin problems go back roughly fifteen years. There were red, scaly patches, changes that refused to behave like ordinary skin conditions and eventually visible scarring and hyperpigmentation. Somewhere along the way, those symptoms acquired a name I had never heard before: mycosis fungoides, a rare form of cutaneous T-cell lymphoma.

Treatment eventually became part of ordinary life. There was methotrexate for years, followed by other attempts to control the disease as it became increasingly difficult to manage. Some treatments were tolerable until they were not. Others made me spectacularly ill. There have been specialists, blood tests, oncology appointments, scans, medications whose names look as though somebody dropped a Scrabble board, and a growing familiarity with parts of the healthcare system I would have preferred to remain completely ignorant about.

Now I am moving into treatment with mogamulizumab, an IV therapy used specifically for mycosis fungoides and Sézary syndrome. I do not know yet exactly how my body will react to it. Previous treatments cured me of making confident predictions about that sort of thing.

Cancer is therefore going to appear on this site quite a lot. It would be ridiculous to pretend otherwise. It influences how much energy I have, what I can eat, where I can go, how I sleep, how I move, what I can afford and what the next few months of my life may look like.

But it is still not all of me.

I Am Still a Father, Even When Life Gets Complicated

Family exists in the parts of illness that do not show up in medical charts. One of the hardest things about becoming less physically capable has been discovering how often illness interferes with the people I actually want to spend my time with. Sometimes it is fatigue. Sometimes my sleep schedule has gone completely off the rails. Sometimes leaving the house requires more energy than I have available. Sometimes there are appointments, symptoms or simply the knowledge that doing something today may mean losing tomorrow to recovery.

That is a much more difficult loss for me than missing work or cancelling some errand. Being a father does not stop because I am sick, and being sick does not conveniently arrange itself around the parts of life that matter. There are times when I have not been able to spend as much time with my family as I want, and that is something I struggle with far more than I am likely to struggle with whether the laundry gets done on schedule.

I suspect I will write about that here too.

Somewhere Along the Way, I Started Writing

Writing became increasingly important to me as other parts of my life became smaller. I have always been curious. History, politics, technology, human behaviour, the strange decisions institutions make and the even stranger things people do have always held my attention. I can happily disappear down a research hole because one question produced another question, which produced three more, and suddenly I am reading something written in 1912 because apparently that is what we are doing today.

Writing gives that curiosity somewhere to go. I have worked on fiction and nonfiction. I have written about politics and history. I have experimented with different websites, ideas and publications, some of which lasted and some of which deserved to be taken behind the shed much earlier than they were. I have learned that I enjoy writing far more than I enjoy feeding the social-media machine, and I have also learned that building something on the internet involves an astonishing amount of time arguing with settings that were clearly designed by someone who has never met another human being.

For a while, I built my personal writing around cancer because cancer had become such an enormous part of my life. That became The Cancer Years. It was useful, and it was real, but eventually I saw the problem.

I had created a place where I could write about what was happening to me, only to define the entire place by the thing happening to me.

I do not want to do that anymore.

Why Time We Get

Some posts may be serious. Some will not be. Sometimes I will have something meaningful to say about living with cancer, and sometimes I may want to spend fifteen hundred words explaining why a particular app irritates me.

Both belong here. That is much closer to an actual life.

The name also means something to me because time has become harder to treat as an abstraction. Serious illness has a way of changing your relationship with the future. I do not know precisely what mine looks like. Nobody does, of course, but some of us get reminded of that fact more aggressively than others.

I am not interested in turning that into a motivational slogan about seizing every moment. Most moments are not particularly seizeable. Some are spent waiting for appointments, doing laundry, watching television, trying to sleep or discovering that the thing you ordered online looked considerably better in the photograph.

That is life too.

What matters to me now is the time we actually get, in whatever condition it arrives.

This Is Not an Inspirational Story

I should probably make that clear. I have no intention of pretending that cancer was a gift, disability secretly improved my life or financial hardship taught me some priceless lesson about simplicity. There are experiences I would happily return for a full refund.

I am also not interested in performing bravery. Some days I deal with everything reasonably well. Some days I am angry. Some days I am frightened. Some days I am bored out of my mind. There are days when I feel reasonably normal until I stand up and discover my body has other plans, and there are days when six stairs are enough to leave me breathing as though I have just completed something substantially more impressive than putting laundry in a washing machine.

There is humour in all of this because there is humour in being human. That does not mean everything needs a joke attached to it, and I am not going to force one where it does not belong. Sometimes, though, the situation genuinely is absurd, and refusing to acknowledge that would be dishonest in a different way.

I do not know that I have any great wisdom to offer.

What I can offer is an accurate account of what this particular life looks like from inside it.