THE BLOG
30/03/2015 17:59 BST | Updated 30/05/2015 06:59 BST

Notes on Loss

"Tom's mind is busy. He has a brain tumour but he still has a mind. Where is his mind? Where it was this morning. The brain tumour is in it but the brain tumour is not it. Yesterday and the day before, the day before that, and all the days for however long since, the tumour was already there but we did not know. A thing first hidden in the site of consciousness later becomes knowledge.

We are novices. We have very little information and so repeat what we have. One phrase goes back and forth between us. The tumour is in the area of speech and language. The tumour is in the area of speech and language. There is tumour and there is area. They sound separate, like two entities, one collaged on the other. I do not consider the idea that the tumour might one day take the mind. That thought comes later. Mind trumps tumour. Art trumps everything."

This is me trying very hard to work something out. It's a passage from my book, The Iceberg, taken from the very earliest moments of my husband Tom¹s diagnosis with a Grade 4 glioblastoma multiforme. I had never heard those words before that day. I learned quickly that this is a particularly aggressive type of cancer. In some literature, the name comes coupled with the phrase, 'The feared'. At this point we were in shock, but even here Tom was thinking hard. He worked with his brain. That's the kind of thing they say about writers. Thinking and writing was his life's work and this was Day One: the start of some kind of understanding of what it might mean for us, for our young son, our family of three.

In fact the tumour did not take the mind. It took many things eventually: language, mobility, Tom's ability to read and write and some two years later, early in 2011, it did kill him. But his personality was not taken, his intellect left intact and that seemed simply a matter of chance, minutely calibrated: a little bit more to the left, to the side, a little bit deeper and things would have gone very differently with us, better or worse, we won't know. You can't call it luck. I don't believe in luck, good or bad, but brain tumours are particular. They behave in particular ways with reference to their hosts and we have scarcely begun to unravel how they work. The thing they mainly do is grow: they are classified into more or less slower and faster growers. Some linger around. Others go to work, stripping everything out at the root.

March is Brain Tumour Awareness month. We all have brains. We think with them but it is more complicated to think about them. Awareness is difficult. It is hard even to hold in your head the idea that consciousness has a physical site. Try it. As you are reading this, think about your head and what's in it. You may have settled yourself in order to read. You comprehend that I am talking about the brain under attack. Maybe you have a coffee in your hand. Maybe in the back of your brain you are thinking about something else you have to do. The back of your brain. See how we understand it - as geography, mass, space. When they go well, the brain represents us accurately enough: automatic, fluent, brilliant, making decisions, plans, pronouncements, putting things together, dumping, prioritizing, coming up with stuff. That's what we do. We are so good at it. We do it in our sleep. Brain cancer puts a block on all that. As Tom said, in his book Until Further Notice, I am Alive, "Something in my head is hurrying to kill me."

This month the charity Brain Tumour Research put out a manifesto calling on the government to invest more and boost innovative research into brain tumours. The call is to increase the national investment to the same level as breast cancer or leukaemia but also to target existing research money more accurately. All research advances are to be applauded but we do worse with brain cancer than with other cancers and deaths are on the increase. At the moment only 1% of the national spend on cancer research is allocated to the disease, yet tumours in the brain kill more children and adults under the age of 40 than any other cancer. Brain tumours primarily kill the young, and when they do, the damage goes out and out like ripples from a stone thrown into a pool: partners, children, parents, family, friends, neighbours, colleagues, supporters. Our collective thinking is not joined up. We haven't got this right. We can do better. What's in your head? Think about it.