When you are diagnosed with the most rare and aggressive brain tumour, you get a lot of different questions, especially when the average lifespan is less than a year. I get a lot of people asking me how I accept the expected limited lifespan I have. It’s always an awkward question and people are often embarrassed to ask it. But it is a very logical question to ask. I have been asked how I keep going? How do I think now, since being diagnosed? “How do you deal with knowing you are going to die? Aren’t you scared?”

These are questions that I have struggled to answer. And there isn’t really one answer that I can give. If I am in a cheeky mood I usually reply with, “I don’t think very much, since they cut out half my brain.” All of the questions seem to imply that the important thing about life is the “amount” you get, and the fact that mine may be shorter means it is in some way worse. Basically, it’s a mentality of the more you get, the better the life you have led. I disagree completely but it is often difficult to explain why.

I am finding somewhat of an explanation in something that I am writing about in my book. It is about how I measure life now. In the general public’s opinion, we measure life by number of years. It is very common to hear in general speaking or in the media, “their life was tragically cut short…” I can’t think of anything worse than when I am gone people saying that cancer cut my life tragically short. I mean, I have been short all my life and now they want to describe my life as tragically cut short! Even in death I won’t be free of the short jokes!

So the way I look at life now is very different to the vast majority. My doctor helped me solidify how to explain it. He has been the exact opposite of most doctors. We have spent many appointments laughing together, something that is way more healing than any drug that I can be given. He came up with the idea of the graph. Yes, this is going to get a little math geeky, but well, I like maths.

For the vast majority of people we describe life like the diagram below.

We hear people talking about “living to a ripe old age” or “having a good innings”. Many of the ads that we see are about how to live longer. A lot of scientific and health research is around how we can live longer, with the media picking up on the next anti-ageing fad. Even the Queen acknowledges people who live to 100 years.

The way I measure life is different. I measure it by two factors. (I actually add several other things, but to keep it simple, I have grouped everything into two main categories). The first is time. Time is such a huge part of our lifestyles, of our society, that it is impossible to not acknowledge it as an important factor, even though I personally would argue against its importance. The second category is how much life I have put into that moment – the amount I have “lived” or how “alive” I am. This includes how much I have helped other people, the impact I have had on the world, the experiences I have had, how happy I have been etc. (but nothing to do with how much money I have made or how much stuff I have!).

So we end up with a set of axes that looks like the graph below.

As time goes by, we increase the amount that we are living and slowly it levels off and begins to decline to the point when we die. Each person’s graph will look different. Some will have a longer, slow decline, some will have a fast, short decline. Some people will go up and down throughout their life, living at different levels, and therefore having a more complex looking graph.

When you look at that diagram, the ultimate measurement of life then becomes the area under the line in the graph. This takes into account not only how long you have lived for, but how much you have lived. It is not only about how high the line goes or only about how long the line lasts. It is a mixture of these two. So even though my life may be shorter in time than most others, I can still have the same amount of “life” as the majority of other people by simply living more with each moment. By making sure I don’t waste each moment, and by giving everything I have to everything I do, I can make my graph look like the graph below.

As you can see, the areas under each of the lines are relatively similar. (No, I didn’t sit down and ensure that graphically pans out in the above diagram, but you get the picture). I don’t have a huge amount of control about how long I live; no one does. But I, like you, do have control about how much I live. How much I put into every single moment of my life. How alive I am in each moment. Having faced the reality of my situation I can honestly say that I understand what it means to truly live. That doesn’t mean I am always good at doing it, but I am getting better at it. By truly giving myself to every moment I have, in my eyes I can still live a full life, even if my brain tumour does “tragically cut my life short”.

That is why I am not scared about dying. That is why I don’t mourn the fact that I will most likely have a shortened life. That is why I put everything I have into everything that I do. I would prefer to die young while really living, than to live to old age without ever knowing what it means to live. This is why I challenge my Paragon Superheroes so much. I want them to truly live, to live a life they believe is impossible. Imagine what you could do with your life if you lived every moment fully.

So no, I don’t feel that cancer has shortened my life. To me it has enhanced the amount I get out of each day. Maybe my cancer might also help you or a friend of yours to live your life with more passion, to live with more freedom and to go after what you truly want out of life.

Thanks for taking the time to read this, now go out and live! I hope you have an amazing day… and maybe live a little bit extra for me?