I’ll make myself disappear

It’s the smallest things that remind me.

Yesterday the dentist told me it was about time I had an ugly black tooth replaced with a lovely white cap. Would I like to make an appointment, perhaps towards the end of the year?

My first thought was habitual: will I still be alive at the time of the appointment? Yes, I probably will.

The second was more narcissistic: is it really worth spending over £200 on a bit of cosmetic dentistry if I, and those who have to look at me, only have a couple more years or so to enjoy it?

Maybe I’ve just been feeling morbid lately.

It started with the sad news last Thursday of the death of David Langton-Gilks, a sweet 16-year-old tumour patient who had become a champion of the Head Start campaign to make teachers and parents more aware of the symptoms of brain tumours.

As he said in a Brain Tumour Trust film on his campaign: “Now, I’m kind of stuffed”. Similar words to those I’ve used about my tumour, though much less politely put.

Then it continued on Sunday with the news that British film director Tony Scott had jumped off a bridge in Los Angeles, reportedly to save his family the grief of dealing with his decline from an inoperable brain tumour.

And yesterday the death from pneumonia of the right to die campaigner Tony Nicholson, who had locked-in syndrome and sought court assurance that those who helped him to die would not be prosecuted. (Assurance which the British justice system refused to grant.)

The last two reminded me how quickly my own thoughts about the manner and style of my death arose after my original diagnosis. Within hours I was making decisions about what it would be like.

I’m with Terry Pratchett, the fantasy novelist with early-onset Alzheimer’s disease. I’m not scared of death, but I am scared of “dying badly”.

I don’t believe in god or any kind of afterlife. I’m a rationalist who concurs with the patently obvious natural version: I’ll simply switch off. No memories, no hurt, no watching over those I leave behind. Nothing.

How could I be scared of that?

But the process of dying from brain cancer? Now that, I’m not too happy about.

On a shelf, next to my blue brain tumour folder, there’s a blank seven page form awaiting my contribution. And my signature at the bottom. It’s called an Advance Decision, what used to be called a Living Will.

In it I will outline what treatment I will allow as I come to the end of my life. I’ll outline whether doctors can resuscitate me if I stop breathing, or try to revive me from a coma if there is little chance of permanent success.

Once signed, and as long as I don’t contradict it later on, an Advance Decision becomes a legal document that must be adhered to by doctors, nurses and loved ones.

My gut response on the medical stuff is that when my death becomes inevitable in the relatively near future, there’s not much point in prolonging things.

My brain tumour, when it grows malignant, is likely to ebb away my memory, my ability to form words physically or mentally, along with my motor functions. In short, it’ll take away the me-ness of me.

And when there’s little of me left, what would there be to resuscitate?

But those blank forms only cover medical interventions. They don’t touch on what you might call more personal responses to dying.

I’m talking about my children.

As soon as I received my diagnosis and began to understand what would happen to me – including all of the above, with some incontinence, personality change and failure to recognise my loved ones thrown in – my immediate response was that, when my decline began in earnest, I would simply make myself disappear.

Any parent would run into a burning building for their kids. When their health and well being are at stake, you no longer matter.

I decided I would save my children from seeing my decline; from having to care for me, from having to watch and wait while everything that made me Daddy trickled away. I guess this is what Tony Scott might have been getting at, if the reports about his motivation for suicide are true.

Nearly four months on from my diagnosis and things don’t feel quite so urgent. I’ve mellowed a little, and I’m not booking a ticket to Switzerland anytime soon.

My children don’t know about my illness, but I know they love me and will continue to, unconditionally.

Now I know more about brain tumours, it seems unlikely my decline will be harsh, ugly and degrading. It will be gradual, change will be slow.

If it happens while they are still young, I suspect it will be almost imperceptible to them. Just as they haven’t noticed the dramatic difference in each other as they have grown older and taller, the same it will be with me as I become less and less what I was.

(They might notice when I stop going out in lycra shorts for long periods of the day, I guess).

But through it all, I will still be Daddy. That will never change.

There will be pain and confusion of course, but any way out will bring the same. And even when I’m feeling physically awful or mentally downbeat, they always lift me with their dancing and singing, their funny off-the-wall comments or demands for stories. Even when I’m really sick, they’ll jump into bed next to me, cuddle up and be far to wriggly to be comfortable.

Could I deny myself such things during my final weeks and months?

I don’t yet know enough about my condition to understand what my decline will look like. Doctors say such talk is premature. My decline will depend not only on the particular type of tumour I have, but also how my brain reacts as it grows.

Nor have I yet made a decision about whether to undergo cancer treatment when the tumour does eventually turn. (That’s a whole other blog, right there).

What is clear is that there probably will come a time, towards the end, that I won’t want my children to endure. But it might not be quite as early as I had originally thought.


P.S. With all these morbid thoughts of suffering brought on by a simple trip to the dentist, I thought I’d cheer myself up last night with a ride out to a Colchester Rovers’ time trial up a very steep local hill.

There, in around just a couple of minutes each, 22 competitors put themselves through enough toil, pain and anguish to last anyone a lifetime. You could see it on each and every one of their faces.

Me? I sat on the sidelines, watched and counted myself lucky not to be taking part.

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