Doors opening

A year on from diagnosis, one of the top brain surgeons in the land may have been on a magical mystery tour of my parietal lobes, but right now I’m none the wiser about what’s going on up there.

The key word here is ‘histology’.

A year ago I wouldn’t have been able to tell you what the word means. Today, it means more to me than any word I’ve ever written.

“At some point in the future it is likely that we will have to intervene here to obtain histology,” my consultant wrote to me not long after my original diagnosis.

Neither he, nor I, thought it would that point in the future would be quite so soon.

On this Tuesday coming I will attend a meeting where I will hopefully discover the histology of my brain tumour: what it actually is.

The biopsy aimed to sample the worst part of my tumour, the bit which seemed to be – if I understand my consultant properly – showing signs of creating its own blood capillaries.

From this sample, doctors should be able to tell me if my tumour remains what they originally thought it was: a low grade (grade two) glioma, essentially a slow growing but ultimately incurable brain tumour.

Or whether it is (or was all along) a grade three tumour, of which there are various different types, none of them better news than it being a grade two.

There’s a kick to this business that I don’t like one little bit: if the sample they got turns out to be grade two, it doesn’t mean my tumour isn’t actually a grade three. It just means the bit they got wasn’t. A biopsy like this can’t prove a negative.

There’s also another kick, though no one has actually uttered the words to me. There’s a slim chance that what I have sitting inside my head is already grade four tumour: a glioblastoma. There is no grade five, so you can do the maths on how welcome that news would be.

Nevertheless, there are plenty of reasons for optimism.

On Friday, just as I was about to be discharged from hospital, the Macmillan sponsored cancer nurse who works with my consultant came and sat with my wife and I. She reminded us what it is all too easy to forget: whatever the results are next week, there are well trodden treatment pathways in place.

A bad result doesn’t mean I’m at the end of the corridor. It means I’ve taken a new branch of it.

Maybe radiotherapy, maybe chemotherapy, maybe enrolment on a trial, maybe all of these, or maybe just more wait-and-see and another biopsy in a few year’s time.

Though I prepared my will and my advance decision before I went under the knife, she reminded us there’s no need to start chipping the lettering into my tombstone just yet.

All of which is to say, Tuesday will bring answers to some questions, the most important being the tumour’s histology. But it won’t provide all the answers, nor a blue-print or map for the rest of my life.

It’ll open more doors than it closes. For an information sponge like me, that’s a good thing.

In fact, the biopsy already seems to have brought positive change.

Contrary to the expected and much-warned side-effect of increasing the number and intensity of my seizures, the operation appears to have done exactly the opposite.

Before I went in, I was having between 15 and 20 seizures a day. Post-operation, I’m having five or less. And they’re generally less intense too.

It could be the operation, or it could be the very slight drug increase I began this weekend. Whichever. I’m not complaining.

Because it means my aim to stay in the saddle as long as possible has received an unexpected boost.

Apart from a pretty sore head in the mornings, I’m feeling pretty good. My legs are starting to nag me about having not being sent round and round in circles for a while. I can feel every biscuit or chocolate I eat lodge itself comfortably on my waist.

I’ll try as hard as I can to hold out until the weekend, to allow just a little longer for the scar to heal, but after that I’m back on the road.

Oh yes, the scar.

imagesBefore the biopsy, all the talk was of key-hole surgery. The drilling of a small borehole. A little hole in my head. I’m pretty sure “smaller than a 5p piece” was mentioned.

On Monday night I peeled off the bandage, finally fed up of it pulling on the little hair I do still have up there. I then proceeded excitedly to a mirror to see just how big a hole they’d created to get the needle through.

What I saw was no less than a full-on, pirate-style, gash in the top of my head. It starts just above the forehead and proceeds backwards a full three inches. There are 10 stitches in there at least.

Let’s not even bother pretending my hair will eventually grow over it. I’ve had not more than a few defiant but deluded wisps there since I was about 24-years-old.

And here’s the worst bit (squeamish folk, you may wish to stop right here). You can see the dent.

Right there, in the middle, underneath the three inch flaps of skin they had to peel back to get the job done. You can actually see – you can actually feel – that much-promised 5p sized hole.

Right in the top of my skull.

3 Comments

  1. Am Ali’s Mum and I picked your blog up from her posts. I read them with great interest and admiration.

    Thank you for sharing – I’m sure it is helpful for you to write it down and it makes us all think a little more – Hang in there mate…

  2. Ewwwww squeamish here … You amaze me … So candid … So open … and so engaging with your writing.

    Sounds like some positives in there too with fewer,less frequent seizures.

    Keep on keeping on Gideon. 🙂

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