A weight off my mind

On Friday 7 September, I visited my neuro-oncologist for the first time since my operation. He welcomed me into his office with the biggest - if not first - smile he's ever given me, and I took a seat.

I didn't feel nervous as such, as I had been told by the surgeon's registrar the day that I left hospital that the surgery had gone well and that they thought they'd got at least 99% of the tumour out, and on first analysis, it appeared as though it was a DNET.

I recanted this explanation to Dr Rees and he confirmed that was the case. 

'Apart from...' 

My heart skipped a beat.

For no need. It wasn't as bad as I feared.

The classification of my tumour wasn't quite as cut and dry as the registrar had let on, as whilst they still believe that it is a DNET, some of the surrounding and attached cells were characteristic of a low-grade glioma.

Dr Rees went on to assure me that even if this was the case, the grade of the tumour would still only be a two on the scale of one to four.

For the first time in months, I got to see the actual scans that they had taken before, during and after the operation. It was incredibly exciting, not to mention frightening.

I'd never given much thought to how big the tumour actually was. All I had to go on was that it had once been described as 'a bit like a large chipolata'. 

It was at least the size of my eyeball, and that space is now just sitting empty inside my brain. When I think about that, I can almost feel that space within my cranium. (I'm not sure that's actually possible.)

He told me that he is confident that all is well, and that a scan in eight to ten weeks should give us even more information. 

On top of that, he said that there would be no need to schedule regular scans, as he was almost certain that it would not be coming back.

Looking at the the final scan they took during the surgery, a cross-section of my head, I could see the shape of the tumour - or rather where the tumour had been - quite clearly. It resembled a speech bubble as drawn in cartoons. 

It was the little tail that would point to whomever was 'speaking' that was the small amount still there, but Dr Rees doesn't believe it should cause any significant problems.

He liked my scar too, which was healing up nicely. As you can see here, look, with your eyes.

He moved on. My epilepsy. Had I had any fits?

Well, no. None at all. I hadn't put myself in the position to, but equally it had been a stressful time, and stress appears to be one of my main triggers for complex seizures.

This was excellent news, he said. And, if I was willing, he suggested that after around six months I should start to lower my dosage of anti-convulsants.

I might not have epilepsy anymore.

It's only now, nearly a week after that meeting, that I realise how much better it made me feel. 

I had been deliberately, or perhaps subconsciously, not thinking about the outcome of the surgery - even before I'd had it.

To think about having the surgery and it not getting rid of the tumour, or the epilepsy, or if something was to go wrong, was obviously something that my brain wouldn't allow me to do.

Now, to hear it was a success from the man that had suggested that I should definitely have the surgery in the first place, was a relief.

It took me time to work it out. But I feel buoyant.

I'm getting better. Officially.

He asked me to remind him what I did for a living and I did. He asked me if I knew who the Secret Footballer was. I told him I didn't have a clue.

I wish this was true. I'd take a brain tumour, fact.

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.