Joe's question

What’s the worst thing about having cancer?
This was the question Joe struggled to frame for me as we sat in his caravan this Easter. I wonder if this is a fresh thought for him or whether he has been pondering it for a while. Joe’s sense of empathy is amazingly well developed for a little lad, indeed it always has been, so this question is by no means unusual. These things interest him.

It’s a bit of a flanker as questions go. He made me think and I had to think quickly. In the first instance I’m thinking of an answer that will work for a nine year old and what I come up with is plausible. I tell him that the worst thing was having the operation, having a big hole cut in me that was sore for a long time. This answer works well; it’s concrete, physical and easy for them to relate to. We can quickly move onto other topics.

But it’s not that easily answered a question and it has hovered in my head since. This writing has emerged from Joe’s question and I am reflecting now on the “worst things” about cancer.

I guess everyone has their own idea of what the worst thing is about having cancer, what it would be for THEM if they were faced with it. What are your ideas on this?

I think your answer must depend on the type of cancer you get and the circumstances of your life. Most of the people with bowel cancer whom I’ve met on the IA forum are a lot younger than me, which seems harder immediately. One is a single parent with toddlers, and to my mind, nothing I’ve gone through, or will have to face, can compare to that reality. She has had to continue working through her chemotherapy treatment and keep going with her daily routine with her kids against that inescapable background that her children might be left motherless soon. I doubt that there could be much “worse” than that.

But enough about other people! What about ME? What are the worst things about having cancer from my point of view? I’ve been thinking.

The first revision that I did was one I shared with Joe later the same day. I changed my answer from the operation to “Not being able to play properly with you”. I’ve always played with them in a roughty-toughty way. I have rolled around on the floor with them, chased them about the house and thrown them in the air. In particular we’ve invented our own game called “Swing Café” whereby I role-play a temperamental maitre de and they are clients in my “Café”. We have different types of “push” on the menu which they can choose when they are sitting on their swing.

OK!
It doesn’t sound much, but it is to us; we play it for ages whenever we get together. They might have even out-grown it this year anyway, but Joe knew what I meant by playing properly, “Yeah,” he agrees, “Like Swing Café.”
“Yeah, that’s right Joe, like that.”
And the way that even a simple, sedentary game like guessing which hand I’ve got a coin in has been booby-trapped by chemo-sore veins and their having to treat me like a glass figurine instead of bashing me about the way they usually do. I’m not a natural for the glass figurine job.

Later that day Julie and I were mulling over Joe’s question together. Julie put forward the idea that having your future snatched away from you might be the worst thing. I’m strangely casual about this. I just don’t engage with that idea. Maybe things have got to get much worse before that strikes me as a real thing. I also mostly manage not to be afraid of my own death. I dunno if I can keep this up if things get worse, but NOW I’m cool with it, and only very occasionally get a wave of fear about that (and about things getting worse, pain-wise.)

What CAN upset me on this theme is the thought of other people who really love me being without me…if this cancer carts me off, there will be such gaps for my friends and family. Brigid will be bereft, as I would be if she left me. This thought has the power to chill. Right from the start I’ve been most likely to weep at this, for both Brigid and my nephews. These are the people whom I would most like to protect from “missing me”. It’s a hidden “worst thing” - that realisation that we cannot do everything for the ones we love and some things are far outside of our control.

Losing their aunty is something I don’t want my nephews to experience. Toby and Joe are very good at treating me like a glass figurine; they control their natural bounce very well around me so I feel I’m already watching them from another place. I have sat on the promenade watching them on the beach, play trust games with their dad, wishing that I could stand behind them too and let them drop back into my arms, safe in the knowledge that I’ll always be there.

Ack – you see, none of us know that, do we?

So what’s the point of dwelling on it, any of us?

Rather prefer to think that I’ve seen more of Luke, Toby and Joe in the past eight months than I’d usually see them in two years. Seeing more of EVERYONE has been one of the best things about cancer. Taking time to really enjoy simple pleasures and to do that “living in the now” thing has been an unexpected benefit of being ill.

I’m extremely lucky enough to have the money and the support to be really quite comfortable in my “illness”.

I’m living at a slower speed these days, shrugging off the madness of the pace of modern life. I’ve long thought that the race we usually live in is so far from “civilised” as it is possible to be. How can it be the height of modern progress that people are at work for longer and longer hours and more and more stressed and even unhappy if current news stories are to be believed? Is this all our 21st Century progress has brought us to?

I’m enjoying the opportunity to duck out of all that. To be slow and relaxed and spend time with people who love me.

Here’s a tip:
Don’t wait till you have cancer to review how you spend your time and consider your priorities!