Tuesday, 4 December 2012

As emails go...

From:Rees, Jeremy 
Sent:30 October 2012 17:29:22
To:Chris Finnegan
Cc:Victoria Croot
Your MRI‏

Dear Chris

The scan confirms a complete resection of your tumour.
Best wishes
Dr Rees 
Dr Jeremy Rees, 
Consultant Neurologist


Tuesday, 2 October 2012

Remember who you are, what you are, and who you represent

I have a plan. For the first time in my life, I have a plan.

My plan is to get better.

I'm going to be better at everything that I do. I'm going to be a better brother and a better son. I'm going to be a better friend. I'm going to be a better partner to Helen.

I feel good. And I'm going to feel better.

It's all in the mind. 

Peace x

Scar Wars: A New Hope

I'm writing this on the evening of 2 October 2012, the day after I announced to my friends that I'd been writing a blog. 

Since writing this blog, and specifically the bits above this, I think that I've started to recover, physically and mentally.

Having had brain surgery to remove a tumour from my right temporal lobe seven weeks ago, I've had feelings that have been described by my GP as clinical depression.

She gave me a script for Citalopram, a generic anti-depressant. I haven't cashed it in yet. I don't think that I ever will.

I've had suicidal thoughts since getting home. (I also have a, short-lived, history of self harm, but this hasn't reared its head yet - although the thoughts are there.) 

But I think I'd prefer to describe myself as being clinically fed up rather than depressed. That's not knocking people that are depressed - I just don't think that I am.

I went to see a psychotherapist at Queen Square two weeks ago. I've got two more sessions booked in with her, the first of which is tomorrow. The first one made me feel very down. But perhaps you've got to go there to come back. 

I'm going to give it a chance. She's a nice enough lady and maybe she'll come across something outside of my own little sphere of worries that I hadn't realised was getting me down.

I hope that, in the same way that I felt better after hearing Dr Rees say that the surgery had gone well and I got to see the scans, having someone 'in authority' tell me at I'm not being weird might alleviate some of the pressure that I feel. 


Two weeks ago I realised I was finally able to do press ups without feeling as though my brain was going to explode inside my skull. So far I've got myself back up to being able to do 61 in a row. Yesterday I did 180 press ups.

Last night Helen and I went on a run, my first run without feeling like my brain wasn't crashing about inside my head. I felt good afterwards, despite the feeling of literally wobbling in places that shouldn't wobble as we jogged up and down the Harringey Ladder.

Tomorrow afternoon I'm going in to the office to discuss coming back on a phased return. I'm quite nervous about it. I'm not looking forward to going back to work, my job reminds me of how useless I'd be in a post-apocalyptic world, but I am looking forward to having structure again. A feeling of accomplishment, at least on some days.

I'm going to treat it like it's a new job. Plus, the amount I've forgotten combined with the amount that appears to have changed there, it essentially will be a new job.

All of these things involve me breaking the cycle. They mean I'll be using my body as well as my head. I'll need to function, so I will function, of that I'm positive.

I'm categorically not saying that leaving the house will cure depression or its symptoms, but I feel a marked response in my head by using my body. I've exercised to exorcise, and to some extent it's worked.

In that vein, I've made it my aim to play my first match for Peckham's own Rogers Rovers FC before the end of October. And I can't wait.

Monday, 1 October 2012

It's not a poem, it doesn't rhyme

The day after I got the good news from the doctor, I found a few lines that I must have jotted down at some point before my operation. In the interest of science, here they are. I realise there's no actual science involved, but I couldn't quite bring myself to write in the interest of 'poetry'. 

Plus there's no such saying.

Please imagine this scrawled across the page of an eight-year-old notepad (that, interestingly enough, travelled half the globe with me). Blue ink, nib of the pen not quite straight enough to perforate the page, but the pressure I put on it has indented the next few pages. As if to save it for future generations of shopping lists to be compared to.

The dread absorbs me. Envelopes
me. Into its frozen warmth I glide
with the ease of a child into
traffic. I enjoy the feeling. I let
myself wallow in it. Allow it to fill
the holes that have gaped
so emphatically for what seems like
forever. I sit alone and ponder just
how lucky I am. I am. And I will be.
I will be lucky and happy. Impending

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.

Wednesday, 12 September 2012

Is this a stitch up?

A week after my operation, and I'd been at home for two days.

I'd made an appointment at my GP's surgery to get my stitches removed by the nurse. This was pretty much the first time that I'd been outside for any longer than a few minutes.

My mum drove Helen and I to the surgery. I checked in at the desk and sat down in the crowded waiting room. We were a little early.

There was a little boy running round, showing off in front of everyone and hiding behind chairs, walls and me. He brought a big smile to my face - which hurt, actually.

There was also a range of older people, coughing and spluttering over each other and generally looking sorry for themselves.

Next to us, there was a Turkish-looking lad in his late twenties in a tracksuit and kitted out with crutches.

We'd accidentally exchanged glances a few times before he gave me a proper raise of the chin. I smiled at him and mumbled a generic 'Alright mate'. He looked at me with a rueful eye and smiled.

'How'd you do that, fighting?' He asked.

'Er, no, I had brain surgery. Getting the stitches removed today.' I said, smiling both at his suggestion and at the realisation that I was getting those fucking stitches out.

'Yeah, but you do it fighting? Is that why you had surgery?'

'No, I had a, erm, a brain tumour, just here.' I said, pointing at my frontal lobe.

'What, from fighting? Just 'cause a lot of - most of - some of - my friends have scars like that from fighting.'

'No, this was just a tumour.' I said trying to keep a straight face.

Our new friend went on to explain that his knees 'weren't his', after injuring them boxing. He was the best boxer in the country, so he was currently out of a job. My mum randomly got really involved with this chap's story, but unfortunately it was cut short, as I was called into the nurse's room.

I hadn't met this nurse before. She was a tiny Vietnamese-looking lady with a nice smile and a comforting accent. Until, that was, she asked why on Earth, if I was a man, my mum and Helen where there and then ordered me to sit down in the corner.

Just as when I'd had stitches in my knee when I was a teenager, it was the getting them out that was the real gum-dryer.

The nurse was telling me what a neat job they had done at the hospital, and how it was one long cross-stitch running from my right earlobe in a question mark shape to the top right of my forehead. Like this. 

Neat job, eh?

A couple of times she warned me that it was going to hurt, and she was not wrong.

Afterwards she explained that she'd been pulling a knot through each one of the holes. I didn't want to retrospectively ask her why she hadn't just trimmed that bit off (FOR FUCK'S SAKE) as the stitches were out, it was done, and by all accounts my head was - relatively speaking - in one piece again.

I waited a day and then I did something that I'd been looking forward to for a week. Have a proper shower!

Some physical side effects of having a good old operation on your bonce

In the process of writing this blog, I've realise that my intentions for it have changed over time. Broadly speaking, they've gone through the following stages:

  • At first it was just going to be something to keep me occupied and get me writing again. 
  • Then I realised that it might be something a little more than that, a way for me to vent my worries, stresses and anger about what was going on.
  • I then thought that it might actually help people in a similar position to me. When you look to the internet for information on epilepsy - let alone brain tumours - so much of it is negative you can be led to believe that there will never be a happy ending.

With that third one in mind, here are some of the negative (physical) things that I've experienced since my operation, what I did to try and limit them and roughly how long they lasted.

Some of them are still ongoing now, around five weeks after my operation, but they are all improving.

Jaw ache

Depending on what part of your brain is being operated on, the surgeons will have to cut through different parts of your skull.

My tumour was located in the right temporal lobe, which meant to get at it the surgeons had to cut through the muscle located between my ear and my eye, which I think is called the 'pterigoid'. Not sure though. To be honest it looks like I've just made that word up, doesn't it?

This initially swelled up profusely, and accompanied with the water-balloonesque swelling from the liquid from my brain and wound, was very tender to the touch.

I am still having some trouble opening my mouth very wide, but this seems to be improving every day. My standards are pretty high with this, as I could previously fit my fist in my mouth. Not entirely sure how I found that out, but I could.

I wish I had been told sooner that it is a good idea to work the muscle, as otherwise it scars over and can have long-term effects. I only got told this the other day, by accident.

So even if it's painful, keep chewing.

Update - It's now 22 October and I still can't fit my fist in my mouth. Fucking NHS, ruined my sex life.

Tingling sensation and numbness in face

For around three weeks I had a tingling sensation, not unlike pins and needles, in my right cheek and the right hand side of my lips. When I had hair on my face (I don't feel confident enough to describe my bum-fluff as stubble), it seemed to be accentuated.

The tip of my tongue also felt numb. To some extent I still feel that, and I have the strange feeling that I can't poke it out very far.

It would be over the top to describe what I was feeling as pain, and at around two and a half weeks after the surgery, the feeling was barely noticeable. However, until then, it really bothered me.

Eating, which I've been doing a lot of, hasn't been very pleasurable. Along with my inability to open my mouth much wider than a few centimetres or to chew, my tongue's numbness has meant that I'm concentrating more on not dribbling all over myself than on what my food tastes like.

This hasn't stopped me from ingesting all manner of biscuits, chocolate and other sweet things, though.

And, although I'm beginning to feel the pounds piling back on (having lost a fair bit of weight since giving up drinking in May 2011) I'm seeking solace in hobnobs smashed up in ice-cream, doused in chocolate sauce that goes hard when it gets cold. Awesome.

(What was it that they put in Ice Magic that means you can't get it any more? I'm putting all future earnings into proving direct causal links between me not eating Walls Blue Ribbon ice-cream with Ice Magic on top and me having brain tumours.)

Update - 22 October - In the last two weeks or so I've noticed that the tingling sensation has changed. Now, instead of feeling it when I touch the area, I feel it in other places. If I touch the right hand side of my mouth I can feel it in my right cheek and eyelid, and vice versa. Very odd. Nerve damage I imagine, I'm waiting to get an appointment. It's not a life or death problem, but it's annoying. I constantly feel like I've got an eyelash just about to go in my eye.

Liquid build up, swelling, and a squelching noise in face

One of the most surreal things about my recovery has been the squelching noise inside my face, running from the top of my forehead where my stitches start, past my temple and down through my cheek to my mandible.

It disappeared with the swelling, but for a good couple of weeks if I was to press any part of it, I could feel liquid moving around under my skin. It felt hot, and bitty. And really fucking hurt.

Whilst I had been in hospital I had been hooked up to some kind of drain that was allowing excess fluid out of my head, and I'm not sure, but perhaps my skull as well. This was a one and a half litre bell jar, and it filled up almost two times. The stuff inside it looked like someone had got a big bottle of Ribena and thrown half a bag of chewed up, gooey sweets in it. Yummy.

When I was let out, my swelling seemed to continue to come up, and with nowhere for it to go, it just stayed in my face. This face-ache was pretty much nonstop. But worse than my facial deformation, was the noise that it made.

When squelching turns to clicking

It started in my temple. I could feel what I think was my heartbeat resonating in this liquid.

It then started to conquer my right eye, making my eyelid twitch with every beat. Hours later, when I was lying in bed, I could feel it clicking in my ear. This was unbearable.

It wasn't even as though it was a regular beat, I couldn't just get used to it. It would also stop at any given moment, and I'd frantically try to guess what I'd done to make that happen - then a split second later, seemingly by moving my head a millimetre, it would start again, this time even louder.

This noise and the feeling through my head became the bane of my life for about ten days - which felt like a year. I would manage about an hour or two's sleep a night, and my mood reflected that.

I'd like to make a public apology now to everyone that came anywhere near me during 'Clickyheadgate'.

Eventually though, my swelling started to go down. Now, five and a bit weeks after the operation, there is still some swelling around the side of my head that they operated on. 

It's strange to look at, as one side of my head is visibly wider than the other, but it's not a bad trade-off for not having a brain tumour.

Update - 22 October - A Clickwork Orange - It came back for a while about a fortnight ago, this time round the back of my head behind my ear. It has, touch wood, gone again. Sorry, should have updated this sooner. Appy-polly-loggies. I had something of a pain in the gulliver so had to sleep. I was not awakened when I gave orders for wakening.

Scar tissue

I was very lucky that the surgeon who operated on me obviously recognised a beautiful thing when he saw it, and took extra care as to how he cut my head open. My scar is barely two millimetres thick, and is all within my hairline.

For the first few weeks, especially when my stitches were still in, it itched like mad. This went away promptly when my stitches were removed and I could wash my hair properly and daily without worrying about getting the wound too wet.

Stay out of direct sunlight, getting burnt on scars (not that this happened with this scar) hurts. Try and stay away from mosquitos as well, they seemed to like the scar tissue, and liked the swelling too - maybe it's a big volcano of blood under there for them to drink.

Headaches (which I imagine people could call migraines - never had one myself, but if that's the feeling you get when you have one - fair play that's an unlucky condition to have)

At times it felt as though my head was going to explode. This was the case for some time after the op. It of course proved more of a problem when I got home.

When I was discharged, five days after my operation, I thought that I would be sent away with a plethora of different drugs to make some kind of pain-numbing, sleep-inducing cocktail that would allow me to sleep a bit and function slightly - if only like a doped-up monkey.

What actually happened was that we waited for half an hour before being told that I was just going to get paracetomol. 

Normal 500mg tablets. The ones you find in handbags and can buy in a garage. Feeling slightly bitter about my lack of spiritual enlightenment brought on by medication, I suggested we just go to the chemists and buy our own. Which we did.

On the first night back, Helen called NHS Direct and in the end an emergency doctor came out as I was in an intense amount of pain. They could only offer to take me into A&E, so I told them that I'd rather languish in bed.

The next few nights were pretty hellish. I was downing pain relievers at some rate, but I was still experiencing pretty drastic headaches. It helped to have someone stroking my head, so I employed Helen to do this for me, and she appeared even more angelic than usual.

If you don't have a Helen to hand, buy some cooling pads. I scoffed at them when they were given to me, but they really did work. You just look a bit of a nob.

I eventually got some cocodamol via my GP. I stopped taking it though because the constipation was more painful than the brain-ache.
(It reminded me of when I had a fish bone stuck sideways in my rectum in Brazil. Still haven't written that post in the other blog. I should do soon, that's a story that simply must be shared with the world.)

In general, though, if you're reading this and you're in physical pain after you've had brain surgery, hold onto this thought in your head - you're not dead.

Plus, if you're reading this, you're not blind either. Well done you!

Tuesday, 11 September 2012

From the OraHorse's mouth - things I was trying to type while in hospital

Power to the people
Here are some unedited (bar some unbearable spelling mistakes) bits-and-bobs that I wrote whilst still in hospital, trying to get this blog on the road. I apologise for nothing.

I'm just sitting here writing at the moment. No one's really told me how the operation went, which is slightly disconcerting. I can feel a massive lump on my head and individual stitches scratching on my fingers. It itches like nothing on earth. Like my head's an STI-ridden testicle sack. 

They've taken the thing that was allowing the blood and liquid to come out of my skull out too. That was weird, having that in there. Like a massive glass bottle of blood-coloured Ribena being sucked out of my head via a tube. Ribrainer.

All in all, I'm happy I've got it (touch wood) removed, I just wish they'd let me in on what's going on at the moment, even if they feel by doing so they may worry me or make me aware that they don't really know what's going on either.

My headaches are coming much more under control now, and I appear to be getting my appetite back a bit.

Helen and Emma have been here nearly every day, as has Jono. I've been getting more and more energy every day so it means my posing for photos is improving.

I had a royal visit from Princess DiEmma.

And I proved once and for all that my pyjama modelling career is far from over...

Magnum (white chocolate)

Charlie and Boxy swung by too, which was brilliant but scary - I thought they were going to jump on me or something. As it was they brought me a book and spoke wise words about resting up. I underestimate those crazy bastards.

I have an inbox full of wonderful messages from my friends and family and even work people that send their best wishes - I feel very lucky indeed.

I'm now just looking forward to getting home. Sitting out in the back garden.

I'm looking forward to feeling normal again, if that's possible.

I want to kick a ball, have a smoke, maybe even drink a beer - although that's the subject of much contention at the moment. With myself. No one else could give a monkey's. I'm just scared of beer. Literally frightened of alcohol.


It's day five after the operation, and there is talk of getting me home to rest. This is exciting, as the company I'm keeping at the hospital is arduous.

The nurses and other staff are all lovely, even the moody lady who steams the food. I've accomplished my mission Helen - I didn't just make her smile, she's my mate - she brings me extra coffee!

It's just (most of) the other people on the ward.

Particularly someone who is called Sharia, who, amusingly, seems to think there's a different set of rules for him and thus
 he can do whatever he wants. 

He spent the entire day yesterday talking to his brothers about what sounded pretty much like several cases of insurance fraud. I couldn't care less that he's ripping things off, I just want the cunt to stop shouting. 

Then last night he insisted on watching the Spice Girls in the Olympics closing ceremony with the sound full-fucking-blast. He then fell asleep immediately, burping and farting until he started snoring.

The snoring was so bad I requested to be moved into a different ward. Luckily the nice big burly nurse found me some earplugs, but they seemed to intensify the feeling of pressure in my head, which made sleeping nigh on impossible. I felt as though my brain was going to pop out my eyes.

There is a man that I feel very sorry for, as he's obviously in a great deal of pain, but he also refuses to help himself. When the nurses try to help him he whines like a dog. He also hiccups bile all the time which is one of the worst noises ever.

This bloke (in the video below) came in at two o'clock last night and just hasn't stopped. I know I should feel sorry for him, but I don't. He says he knows who he is, where he is and that he's not in pain. So why the fuck are you shouting, John?

I'm worried that my sense of sympathy is disappearing, replaced by homicidal thoughts. I'm going to smother him.

I need to get out of here. 

I go home tomorrow. Thank fuck. Otherwise I'm going to kill a man. 

Oramorph is a hell of a drug

To be honest, I've felt really let down by the painkillers that I've been given by the hospital.

I mean, they've done their job, sure, but at no point did I feel like I was experiencing either the 60s, Trainspotting or the bit in The Simpsons when Homer licks the toad.

I did only get a mixture of paracetamol and Oramorph though. The oral morphine did manage to live up to one of its renowned traits, it bunged me up like a cork.

As I write this, at 2pm on Monday 13 August, I am five minutes past passing my first stool since last Wednesday morning. Scary stuff for a man as regular as an Omega watch and with double the product placement.

I've been taking laxatives, eating poo-friendly food and downing fruits and juices like they were foods and liquids.

At last, the time came. (Please note, the video below, despite it's position in the narrative, is not of me visiting the loo.)

I'm not sure what the hospital's health and safety people would have to say about it, but my technique consisted of squatting backwards on the toilet and aiming my bum at the water, resembling a Sunday morning pub-team player struggling to put a corner flag in.

It was like shitting out a BMX handlebar.

Whilst I was enduring this torture - and it really was torturous, considering that any type of straining makes me feel as though my brain is going to burst out of my skull - I had the bizarre thought that it was like trying to poo out your granddad's fingers.

Anyway, mission accomplished, I came outside and it seemed that my writer's block had ended too. 
It never ceases to surprise me how much a good shit can churn the thoughts.

Shitting out your granddad's fingers. I'm a genius.

I woke up again, which was good

I can't quite remember the order of events after the surgery, but I've been told that I was initially put in the High Dependency Unit, where Helen and my Mum first saw me after the operation.

I have a vague recollection that I was in a different room than any I had previously been in at the hospital, and I had the feeling I was in the centre of a much smaller space.

Helen has since told me that when she saw me, not long after the surgery itself, I was barely awake. I had a big old bandage around my head, and my face had already started to swell up quite dramatically.

Luckily, Helen's always had a thing for Sloth from The Goonies.

Although the 48 hours starting from the morning of my surgery remain a bit of a blur, I do have a clear image of seeing Helen for the first time.

I remember trying to speak to her, specifically to tell her I was OK and to check that she was too, but I had no energy to talk. Plus, they'd cut through one of the muscles that move my jaw, so talking would continue to be a pain for a while.

About a week after the operation, I overheard Helen telling one of our friends what I'd been like at this stage. Apparently I'd tried to speak to her but couldn't really get any words out to her - so resorted to monkey-style sign language.

I'm quite proud of myself that I managed to get my point across via sign language, as I've been banging on about learning it for ages. Point to eye, point to heart, point to Helen.

I really did feel better as soon as I'd seen her.

For the next day and a bit, I did what I do best, sleep like a motherfucker.

Operation: Operation

I woke up on my own accord, before the nurse came to get me out of bed.

I'd slept well, considering the din the old man down the way had been making, randomly shouting at nurses and shadows all night. 'Go AWAY, be off with ya!' on an endless loop, interspersed with random swearing and racially-tinged provocations. In hindsight, the bloke was obviously in pain or troubled or both, but I didn't like him very much.

I had previously noticed that a patient who'd had surgery a few days before had been given some purple liquid with which to wash his head with. I didn't mention this to the nurse, as I presumed that if I needed to do anything special she would tell me.

I hadn't seen my dad for a couple of weeks before the operation so I replied to a text that he'd sent me that morning. Helen and I had spoken about not speaking to each other that morning, which seems as though it would be easy enough to achieve but I had to try hard not to contact her.

I am naturally inclined (some would say unnaturally clingy) to tell Helen that I love her when I go round the corner to get some milk, so to not call or text her before the operation felt weird, but I think it was beneficial for us as it could've been a bit dramatic and upsetting for a couple of wimps like us.

After a few moments deliberating, I pulled myself together.

One of the nurses came round to do the usual tests, and I asked if I should have a shower, which I subsequently did.

Turns out that purple stuff was a super-duper antibacterial shampoo that would make my head clean enough to cut open. Apparently Head and Shoulders wasn't going to cut it. 

So, when my surgeon came to speak to me, I got told to go and scrub the millimetre long stubble that made up my hairdo.

I had met my surgeon a few times before. His name was Mr McEvoy and he is a very mollifying man. He looks and sounds slightly like Derek Acorah, that scouser who says he can talk to ghosts, but is infinitely more trustworthy.

He also has quite small hands, which had bothered me in the run up to the operation - but when I shook his paw that morning I decided it was better that he had Beadle-dexterity than Lennox Lewis-style mitts poking around in there.

He asked if I had any questions and I double-checked with him that I wouldn't be awake - having still not had this confirmed - where the incision would be, what the percentage chances were for the surgery to be a complete success and also for what could be considered an utter fuck up. Here's a list of some of the things that could go wrong:

  1. Just the same as with any surgery, I could have a bad reaction to the general anaesthetic and go into cardiac arrest, or have breathing complications or stop breathing all together
  2. Infection in the brain, wound or skull
  3. Blood clot or bleeding on the brain
  4. Brain swelling
  5. Stroke
  6. Coma
  7. Seizures [Seizures? Pah! I shit 'em.]
  8. Short-term problems with speech, memory, muscle weakness, balance, vision, coordination and other functions
  9. As above, but long-term or lifelong
  10. Locked-in syndrome 
We didn't mention that last one. Locked-in syndrome. Fucking hell. Just take the crystal and head for the dome, I'd rather be dead.

Blindness and paralysis being my two worst fears in life, I was elated to hear they were still nestled right at the top of the list. 

He bid me adieu, and I wished him good luck. Not entirely sure this was appropriate but it filled an awkward silence. To be honest I was just relieved he didn't ask me if there was anyone on 'the other side' that I wanted to speak to.

I hadn't really felt nervous, but I don't think I'd allowed myself to take on the seriousness of the situation.

Having sheep-dipped my head and put my gown on (the right way round and everything), a young nurse came and took me down to have my last MRI scan before surgery, so they could map exactly where my tumour was.

When we got down there, the entire ward was empty apart from a receptionist. This felt very odd as I had been there many times before and it was usually a hive of activity.

The nurse went through to the MRI department, but was halted just on the other side of the door that she'd left me by. I could hear her conversation with a doctor, who asked if she had my notes.

She didn't. Neither did he. Nor did the receptionist. 

The doctor bellowed that she should 'know your fucking patients better' and smashed through the doors, throwing me a smile - obviously not realising how loud he'd just been - and stormed off somewhere.

None of this was filling me with confidence.

Eventually though, my notes were found (someone had been using them to rest on when they were doing the Metro Sudoku, or something) and I was wheeled into a small room that had the i-MRI machine in it. It looked as though it was a little fireplace, or at least that's how I remember it - much smaller than I thought everything was going to be.

Lying down, looking like Private Pile, they slipped the needle into my hand. 

Unlike the previous times that I'd been under general anaesthetic, they didn't ask me to count down from twenty, they didn't ask me anything. The entire thing was played out in an eery silence.

It must have worked though, I didn't even feel them pummel me with the bars of soap. 

Then over the course of about ten hours, they scanned me, cut me open, scooped, sliced and chopped, scanned me again, and repeated that process until they got hungry. Or had a fag. Or thought they'd done as much as they could to remove my brain tumour and save my life, one of those.

Preparing for surgery

The night before surgery, I went to my favourite curry house in Turnpike Lane with Helen, my sister Clare, and my mum.

On the walk there and back I managed to speak to my old man, my Grandma and also a smattering of aunts and uncles.

Tearing into a garlic naan, I was feeling quite relaxed.

But some complex feelings of excitement were mixed up with a fair bit of anxiety. I have a feeling that a lot of this was about what I was leaving at home, though. Namely nearly every female in my life within a ten-yard radius of each other. Critical mass.

The next day, with my bag packed like I was going on holiday, the four of us got a cab to Queen Square. We even drove straight past my office, allowing me to give it the customary - and completely unnecessary, I really like my job - two-fingered salute.

I'd been to this hospital many times before for MRIs and meetings with my neuro-oncologist, and this didn't feel much different.

We all walked into the ward that I'd be staying on and the mood changed somewhat. I became very aware of my surroundings, with people scattered around beds in various states of disarray, and that this atmosphere was going to be inescapable for a few days at least. I could see a change, notably from Helen, on our party's faces.

There was a mixture of old people and young people, some had obviously already had their surgery with bits and bobs hanging out of them, some people were so grey and washed out they looked like they'd been in the ward for a considerable amount of time, and some were fresh meat like me. They all had one thing in common, everyone looked fucking miserable.

I was pointed towards the bed that I'd (be trying my hardest to) sleep in, which was in the middle of a bay of six, in two rows of three.

Every ten or twenty seconds the relative quiet of the ward was punctuated by an old chap who was in a room of his own about twenty yards away from our bay. He seemed to be aware of his surroundings, but he obviously wasn't very happy with them. He was screaming and shouting and swearing at anyone that came near him or his room. This didn't bother me at first, but it visibly upset Helen.

My merry gang stayed with me for some time, and various nurses came and took my blood pressure and temperature, as they would every three hours day and night for the next week, and introduced themselves. They were all lovely people.

Steamed lasagne - who would've thunked it?

The lady who was in charge of steaming the food (expertly modelled by myself, above), however, seemed to be a slightly more troubled character. By that I mean she was grumpy as sin. Helen made it my mission to get her to smile before I left. Which wasn't as easy as it sounds.

Helen stayed with me until the very end of visiting hours. It was very odd saying goodbye to her, but I wasn't scared. 

I had a feeling that everything was going to be OK.

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.


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.'

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.