Inevitability

It was so insignificant, I didn’t bother to mention it here when I wrote about my latest MRI results a month ago.

I mentioned that my tumour wasn’t growing, and I mentioned that my neurologist put the rise in the number of epileptic seizures I was having as down to a change in the ‘metabolic environment’ in the tumour.

I mentioned that he sent me packing with a – relatively speaking – clean bill of health; a renewed prescription and an appointment to come back in six months time.

What I didn’t mention, because it really wasn’t that significant, was that some MRI results – a profusion scan showing the pathway of blood through my brain – hadn’t come in on the day.

No matter, the neurologist had said. The tumour’s not growing, so when we do get those results we’d only use them as a baseline for measuring any change in six months time.

He could always call if they showed anything to worry about.

On Monday, my neurologist called.

The missing scans have shown a significant uptake of blood in my brain tumour, a profusion score of 4.8.

I know not what that means, but I know it’s not good.

Words like “significant” and “worrying” and “abnormally high” were uttered. “I think it’s time to offer the opportunity to find out exactly what’s going on in there,” my neurologist said.

I took a moment to breathe in. And then I replied:

“Thank you Doctor. Just for my clarity: are you offering me the choice between a biopsy or hanging on for another six months to see how things go? Or are you advising me to have a biopsy?”

“Oh, I’m clearly saying you should have a biopsy,” he said. Clearly. “When we get a profusion as high as 4.8 in this kind of tumour, we start to get twitchy.”

Forgive the layperson’s interpretation, but here’s how things look from where I’m sitting.

In a couple of week’s time I’m going to see a brain surgeon, a kind man who gave me my original second opinion that my tumour cannot be removed. I’d imagined I’d never see him again.

He will tell me how my biopsy will work, and then a couple of weeks later he or one of his colleagues will carry out the operation. I’ll be in hospital over night, possibly for two.

The aim of the operation is clear: to find out, once and for all, what kind of tumour I have.

You see, with a profusion of 4.8, my low grade brain tumour is no longer behaving like a low grade brain tumour. Low grades inevitably transform into more malignant tumours, the question is when?

I think by now you can guess what one of the early signs of transformation might be.

For those who have been diagnosed with a brain tumour, I’ll share the detail: even if some of it is unpronounceable. Those with more knowledge than I are welcome to correct me.

My tumour, it seems, is now probably one of three different types:

It could be a low grade oligodendroglioma with an abnormally high blood profusion. This would be OK news, because it would mean I’m still a low-grader and nothing much has changed. It’s just a low grader being a bit naughty.

It could be a high grade oligodendroglioma, which is when a low grade oligodendroglioma is transforming or has transformed into a more malignant one. That kinda speaks for itself.

Or it could be a high grade (grade III) astrocytoma.

When I asked my neurologist to remind me which of these was the one I didn’t really want to have, this last was the name he repeated.

I’ll spare you the statistics, but they’re enough to overshadow any worry about the biopsy itself: what’s important is what the biopsy might reveal.

(For those who do wish to know the numbers, Cancer Research UK does a very good breakdown of exactly why I don’t want the ones I don’t want.)

It is what it is.

We knew this was going to happen. Brain cancer is a progressive disease that most often moves only in one direction.

Each is a slow step and – as I remember writing in a briefing to my family and friends when I was first diagnosed – we can only hope that each single step takes as long time.

All indications are I just took another step a lot sooner than my results meeting last month indicated I would.

Am I scared? No not really. I already know where I’m headed, and there’s something awfully (in both senses of the word) clarifying about knowing your life is going to end.

It’s not good knowledge, but I guess it releases some of the pressure. I’m not sure I’ve made peace with it, but we’ve come to an understanding.

Sad? Yes of course.

I look at my young kids playing, or making jokes at the dinner table, and they don’t really have a clue what’s happening. I listen to the deep sadness in my wife’s sighs, see the welling up as she answers questions from her friends about how I’m doing.

I’m sad for my family, for the inevitable blankness, the empty chair. My concern for them far outweighs any feeling of sorrow I have for myself.

Frustration? Yes, though I’m not frustrated that those test results went missing, nor am I frustrated that I’ve been telling my doctors since New Year that something wasn’t right up there. That’s bureaucracy. That’s a free at the point of need health service. That’s life.

But I am frustrated that with a new series of doctors appointments and an operation looming, I’ll be thrown off the bike yet again, just as I was getting back up to fitness. I fear I might have to skip, once or twice, the book club I run at my daughter’s school. A role I find challenging, but rewarding.

My work and personal goals will once again be upset, thrown into insecurity and disarray. I’m already bored of looking at a computer screen wondering just what to do with the rest of my life.

But mostly, right now, I’m intrigued.

If things go badly, I’ll come out of hospital and straight into radiotherapy, perhaps chemotherapy too. I can’t say I relish the thought either of the treatment or the honest assessment that for me they will only ever be more steps, never a solution. I can’t say I’m enamoured by the idea that with radiotherapy, I’ll only get one chance because the brain can only take a certain amount.

If things go well, I could be back on my bike within weeks, armed with yet more information – including the genetic markers I wrote about last time – and therefore a clearer picture of what the future may hold for me.

When I put the phone down yesterday, I went and enjoyed a pasta lunch with my family. I spoke calmly with my wife about what the doctor had said, we made a cup of tea and sat closely together to watch our kids play for a while.

Then I went back to my office, intending to work. Inevitably I ended up searching the web for strange brain tumours with strange names.

Then, as the sun clung defiantly above the horizon, perhaps knowing how much it has been missed lately, I closed my computer and went out.

I went out on my bike for a lap of the reservoir, on past the jam factory at Tiptree and back along the main road, finishing over one of my favourite rises which at its top offers an inspiring vista of the sunset over the water and the Essex countryside beyond.

What else did you expect me to do?

4 Comments

  1. That is frustrating news but you seem to be dealing with it as best you can. My biopsy was quite straight forward, I got an excellent and subtle scar, a novel skull plug which I can feel ever so slightly when I rub it and makes for a good screwfix screws joke. There’s such a big active brain in there surely it’ll strain to grow too much. Here’s hoping it’s an anomoly and your biopsy will at least bring certainty. Do what I did and bring your point and shoot along and get one of the nurses to take some gory operation shots. Keep enjoying every single moment.

  2. Thank you for being so brave in sharing your story, I too had a brain tumor diagnosed in 2008, however I am very fortunate it was not malignant & it could not be entirely removed however even though my life is very different now, I am still alive & after reading your story I realize how very lucky I am, I send you all the strength & hope & light for you & your family.. Warmest wishes Lorraine

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