Keeping track of my humanity

When I was a kid, possibly a teenager, I found out that a friend of our family had cancer. This man appeared old and frail at the time but was middle-aged, probably younger than I am now.

I remember watching him and feeling like I was looking at a ghost - someone who would not be in this world much longer, someone with one foot in the next world. This made him seem distant and out of reach, as I looked on with a mixture of youthful pity and curiosity.

Now, over 30 years later, I still sometimes see this man, apparently happily retired, his cancer seemingly a past chapter in his life. As well as pondering that, ironically, he may outlive me, I often wonder if people see me in the same way as I saw him as a youngster.

Maybe to some, I am that ghost - that person they are surprised to bump into still buying pickled onions and toothpaste in Aldi or slugging it around our local streets on a slow run. Indeed, as I wandered around Burntwood's brand new Lidl store earlier today for the weekly shop, I felt a bit like a ghost myself, my chemo brain keeping me at a mental arm's length from the bustle around me. The longer I live with incurable cancer, the more surreal my existence can seem.

Not long after I was diagnosed, I listened to a podcast where the guest being interviewed spoke about how the second year of cancer is the toughest. The initial waves of shock, good feelings and support from others have calmed, and now the person with cancer has to get on with 'normal' life, while still harbouring an unseen, killer disease that has changed them forever.

Now well into my third year of cancer, there are still times where I get that 'new cancer' feeling, like last Sunday when I told one of the dads at Reuben's football about my illness for the first time. As usual, it came as we talked about our jobs and I, after a sharp intake of breath, responded, in a manner of words, that I do cancer for a living. I always feel sorry for people as I plunge them, like a plummeting log-flume ride, into a depth of conversation that they weren't anticipating. Sometimes they are lost for words and we flounder quickly onto another subject. Last Sunday, the response was inquisitive, generous and empathetic before we eventually switched back to talking about the scrappy goalless draw unfolding in front of us.

The idea that you can have a fulfilled life with Stage 4 cancer is something that, as more and more people are diagnosed, seems to be slowly taking hold. One person who has championed this is Sir Chris Hoy, who was diagnosed with Stage 4 cancer six months after me. His Tour De 4 event last autumn saw Stage 4 cyclists join others in a massive charity event that raised over £3 million. Hoy's aim was “to shine a spotlight on what a Stage 4 cancer diagnosis can look like and demonstrate that it is possible to live well and lead a happy life alongside this devastating diagnosis."

I was moved by an interview where Hoy described his motivation for such events alongside the everyday toll his cancer (and his wife Sarra's multiple sclerosis) can take on their young family. For instance, it took Hoy, who still looks fitter than a butcher's dog, "days" to get over the emotional impact of the Tour De 4 and the conversations he had there.

This encapsulates the paradox that those with incurable cancer inhabit. We are not (as my young self wrongly thought) ghosts on the way to another world; we are flesh and blood human beings who worry about their kids' exam results, what to cook for tea and whether the car will pass its MOT. But we - and our families - are also living on a daily knife-edge of life and death which, even when we're not on treatment, can be physically and emotionally all-encompassing at times. Maybe this actually enhances, rather than decreases, our humanity.

I noticed the weight of this as my three-monthly scan results approached recently. I was withdrawn and, at times, narky around the house and didn't really want to see anyone or go to any social events. Like the brilliant, climactic scene in The Wrong Trousers (pictured above), where Gromit is being chased by Feathers McGraw on a toy train while frantically laying out the track in front of him as he goes, my future felt short and contracted. The cliff edge approached, again.

Then, when the scan results revealed the good news that my cancer is stable and that the recent growth seems to have come to a halt, a sense of calm and future slowly returned. There is more track in front of us and the pressure is eased, for the next three months at least, as I continue on chemotherapy and targeted drug treatment.

I recently came across the poem 'Last Night' at the end of Robin Ince's entertaining book Bibliomaniac. It finds the author pondering the night sky and how a star, that had died light years earlier, now "created a beacon" overhead. Turning inward, Ince reflects:

"Much that destroys me

Also creates me"

I love that couplet. Deathly things, like cancer, that cause so much pain and destruction can, if we are fortunate to have the time and energy, create life that replenishes and remoulds us into whole new shapes and depths of being human. Life comes from death - not just in the world to come, but here and now.