Wednesday 5 September 2012

Did I want the good news or the bad news?

Despite the title of the last post, I wrote this before the operation too, it just makes a little more sense to have it here. The addendum at the end was written two weeks after the op, it may shed a little light on things. 

Jumping a few months ahead now, into May, I'd settled into my new job - and with hardly any mention of erections (or lack thereof) at all. I'd met with Dr Kelso a fair few times and I eventually had my first MRI scan.

(Or, at least, my first as an adult. I'd actually had one before when I had an unexplained growth on my hip. Never did work out what that was...)

Anyway, I had the MRI at four in the afternoon of Saturday 7 May. It was this picture of my brain that confirmed the bad news. I had a brain tumour.

Bum.

Subsequently, I had various other MRIs to try and pinpoint exactly where the tumour was, and if possible, to determine what sort of tumour it was. What was certain, however, is it was this little bastard sitting in my right temporal lobe that was causing the focal epilepsy. What wasn't quite as clear was whether it was a 'low-grade glioma' or a 'DNET'.

These two terms didn't mean anything to me at the time and, despite numerous explanations, don't mean a great deal to me now, three days before they're going to try and take it out.

Essentially, a low-grade glioma holds the possibility of turning into a high-grade glioma, which could cause more significant problems. A DNET, on the other hand, is a tumour that could have been in my head for a long time indeed, perhaps even since I was a foetus. I can't remember having it then, though.

During this consultation time I started a drug trial, which helped to make this new development interesting on a different level. Plus, philanthropic to the end, I had the feeling that it might actually help someone at the end of it. 

It also meant that I would have slightly more regular contact with Dr Kelso and, once I was part of the trial, a nurse called Ceri who offered a great deal of support.

Again I feel very grateful that, along with Helen, I also had these people offering me care at a time that my simple curiosity in my condition wouldn't quite have masked my utter dismay.

I was in a double-blind trial (meaning no one knew what I was taking, not even the people leading the study) whereby I took these great big fuck-off pills that were either a generic drug that most people are given when first diagnosed, or this new type of drug that is being developed by a Portuguese company.

Honestly, these pills were the size of the battleships in that game where you have to guess where the other person's naval complement is and torpedo them by calling out a grid reference. Can't remember what it's called.

By this time I'd had a few tonic clonic seizures, and a few more minor seizures where I didn't lose consciousness, and I felt as though I was gaining some sort of control on the situation.

I had also stopped drinking for a few months, no small feat for someone who has regularly been told that alcohol is 'the only thing that you get excited about', that I 'hide all emotions within a pint glass' and that I am, 'frankly boring without it.'




Addendum
I'm addendumming this little section because now, with '99.5% certainty', I can say that the tumour that I have (or perhaps had, I find out in a few days) is a DNET. That means that if the surgery - which the surgeon's registrar has told me went well - has left a bit of the tumour still in my head, it shouldn't get any bigger or regrow. Which is the good news mentioned at the top.

Addendum to the addendum
I had another MRI on 12 October to find out what's going on. I'm still waiting to hear from the hospital. In other news, my right cheek has gone numb and when I touch my top lip I can feel it in my right eyelid. Not ideal, but on the bright side it's better than being stabbed repeatedly in the face.

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