The brain drain

Today marks one year since they cracked my head open and sucked out a bit of brain. Most people know about it, some managed to live through it, but for Sherri and anyone else who wants to know the full story, here it is...

I'd had a spate of symptoms at points over the course of 18 months from autumn 2004 to this time last year. These included dizziness, headaches, numbness in my arms, failure in my legs. As each came and went I blamed it on diabetes, carbon monoxide poisoning or caffeine.

The worst point came when I had several near-blackouts and one actual instance of fainting in Summer ‘05, most dramatically marked when I collapsed at the feet of a colleague in the middle of the newsroom.

Feeling progressively more and more like a hypochondriac, I meandered through various clinics and A&Es as the NHS worked at its naturally relaxed pace for the outpatient diagnostic phase. At first, my heart was the principal suspect - never a good thought for someone in their early 30s who had spent the previous two years getting fit.

But following a clean bill of health from a cardiologist, doctors started to tell me they were pretty sure I suffered from vasovagal syncope - a posh way of saying you stand up too fast - and told me to eat more salt and drink more water.

Then a neurologist at St Mary's in Paddington sent me for an MRI in early April. Expecting nothing out of the ordinary, the family immersed itself in celebrations of Josh's 21st birthday. But eight days after the scan I got frantic phone calls telling me I had to go into hospital for brain surgery immediately. It wasn't cancer, the young Asian registrar told me, but it was necessary.

My first thought was that Mum and Dad were far too busy to bother them with the news. I'd tell them later, if it proved necessary.

To this day I have no earthly idea what I was thinking, but thankfully a colleague talked me out of that pretty quickly. (This was the same point at which I was also telling people that I'd probably be off work for a week or so, so you can see that I didn't quite grasp what lay ahead.)

Having got over the initial shock, and with Thomas and Mum almost instantly on hand to bolster me, there began a long wait 'til I actually got to the table.

The surgery was to take place at the National Hospital for Neurology and Neurosurgery in Queen Square, which is supposed to be the best place for brain surgery in Europe, some say the world.

Under the mistaken impression that I wasn't allowed to leave the ward, by day five (Easter Sunday) I was going a little stir crazy. Thankfully those in charge were willing to allow me a little leeway, happy to let me roam nearby streets of beautiful Bloomsbury, provided I was in the company of someone responsible.

It's just as well they let me out of the cage because altogether I had to wait nine long days before getting to the theatre, and almost a week before even getting to speak to my brain surgeons.

In charge was Ms Joan Grieve, a kindly but no nonsense woman with something of a mischievous streak, the sort of girl who would be odds on favourite to captain the hockey team at school. Her number two was Dr Oasi Jeelani, a supremely confident young Londoner who, when asked whether he liked his job, said he'd pay to do it.

Obviously one wants to go through life without having one's CPU exposed to the elements but if you absolutely have to have brain surgery, then it's people like these you want to have doing it. Both undoubtedly brilliant.

Having written that paean to the surgeons, it would be remiss of me to go any further without mentioning the neurologists. All the glory and glamour may go to the people who get their hands bloody, but it was Dr Simon Farmer and his team who actually found the damn thing. Their part in this process is so often underplayed but should not be underestimated.

And the nursing staff - not all necessarily the most genial of folk, but my, do they earn their money. One glance at the dedication, skill and patience their jobs require should be enough to silence the majority of malcontents in any other sector.

The problem, my surgeons explained, was a colloid cyst (a pea-sized sac of gluey stuff) which was washing about and regularly blocking the drain in one of the chambers in my brain. Much like having a teabag stuck in your kitchen sink, this was causing hydrocephalous (water on the brain) and a build-up of pressure which in turned caused all those side-effects.

Other symptoms in undiagnosed or untreated patients include a one in eight chance of sudden death. So the decision to have surgery was, if you will, a bit of a no-brainer.

Joan and Oasi would have to take a piece out of the front right of my skull and burrow down about 9 centimetres until they reached the offending article, pretty much right at the centre of my brain. Then they'd snip the cyst open, suck out the glue, and remove the rest of the cyst wall, before getting out and patching me up, complete with titanium brackets to hold the skull in place.

Dr Jeelani added that there were two surgeons because one had to hold the other's hands steady. Perhaps understandably, it took a couple of beats for the penny to drop and people to laugh.

They've no idea what causes these things, or indeed how long mine might have been there (possibly since birth). And despite the fact that the condition is pretty rare, the same team had actually successfully removed a colloid cyst the week before my op. Insert London bus joke here.

For most of the time I managed to stay strong - I knew I had to. It's a funny thing about adversity, but very often it seems easiest for the person at the centre to be the one helping to keep everyone else's spirits up, so that they would find it easier to do the same in return. At least that's the way it felt to me.

But other than a bit of a wobble after my first chat with the surgeons (when Sam provided the double whammy of a clear, incisive head for detail and much needed emotional support, as she did throughout the whole hospital experience), the only point at which I was really scared was the evening before the operation when, just for a few moments, I realised I might wake up from the procedure and all that I'd experienced, loved, cherished or hated would be gone, and I'd have to start again stripped of context. That I'd no longer be me.This, I learned post-op, was also the major fear for most of those to whom I'm close.

But I certainly don’t feel any different and everyone says I didn’t lose any of my Ben-ness. Read into that what you will.

I've never felt so loved as I did at that time, both before and after the op. Family, friends and colleagues rallied round, messages of goodwill came on an almost daily basis from all around the world, people I'd not seen in far too long suddenly re-emerged to become essential crutches. I felt a little guilty about the number of visitors and cards I received, which easily outweighed anyone else in the beds around me. The improbably high turnover of attractive young women in my presence certainly didn't go without mention by wardmates.

I even had the good grace to accept offers of prayer in the spirit in which they were intended (but it was not until later that I discovered that these stretched beyond people who knew me to a whole church prayer group in rural Georgia). I may not agree with beliefs about where the positivity of prayer ends up, but I can't deny it helps to have so many people wishing one well.

Fortunately it became clear very soon after I was brought round from the anaesthetic that there were no long term side effects (which, on top of the personality change, could have included short term memory loss, some loss of mobility in my left hand side, seizures, death – minor stuff like that). I even managed to insult my youngest brother through the oxygen mask.

It also quickly emerged that I don't get on with morphine. What goes down must come up, as they don't say. Clearly I'm not destined to join the ranks of the great Romantics.

I have many happy memories of this period immediately following surgery: the camaraderie on the recovery ward with guys like Ernest (a 40-something black guy who looked half his age but turned out to be a grandfather), Ollie (a sweet-natured Bengali lad from the East End, sadly no stranger to the National), and Patrick (an ageing Irishman who'd done everything in his life and had stories to tell that would be the envy of any blogger); a precious spring picnic in beautiful Queen Square; a chance meeting with a BBC staffer making a documentary about the hospital; talking movies and football with Sean; and learning from another hospital veteran that the easiest way to get a decent meal was by ordering Halal.

Twelve days after the surgery I was released from the National. After a few days at home in London to ensure proximity to the hospital in case of emergency, we all decamped to my parents' house in Wales where I was to spend much of the summer.

So began the second struggle, to get back to fitness. At first even the shortest of walks was exhausting - three weeks post-op and half a mile on flat ground would wear me out. Equally, computer work was out of the question - in the early months staring at a monitor for much more than 15 minutes would leave me with a headache for the rest of the day, as did much more than half an hour's reading - which meant that all the books I'd been given to help me through my long layoff had to be content to wait.

Funnily enough the same didn't count for television, a godsend as this period of convalescence coincided with the football World Cup. More than one person felt it their duty to remark upon the serendipity of this timing.

But eventually the strength returned to my legs, the head became reaccustomed to pixels and, with the help of a glorious summer and regular targets to hit (the first trip out, birthday celebrations, the first drink, family holiday in glorious northern Spain, Tory's wedding) things began to feel close to normal again.

The scans I'd had a few days after the op (and again a few months later) showed everything returning to normal, and I started a gentle reintroduction to work in August, three and a half months after my date with Joan and Oasi.

The return to the BBC after brain surgery taught me another important lesson I should have learned years ago: that we're all responsible for our own stress levels, or rather that we can control the way in which we react to high pressure situations. One can choose not to get stressed out. Disagree if you please, but the absence of weekend-long headaches since adopting that attitude suggest to me that there's at least a grain of truth to it.

The zest for self-expression took a little longer to return. I just didn't feel the need to write anything - hence the huge chasms of time between posts here. But eventually, a couple of months ago, the urge came back and I felt free - almost compelled - to get words down again.

Obviously Colloidgate (as it's never been called) was a wholly unexpected challenge, and each member of the family dealt with it in their own way (denial, anger, stoicism, running away), but I couldn’t have got through it without them and the love and support of friends and colleagues. Mum was just the best. Words fail me. Hopefully they're not necessary.

To the people at Queen Square and everyone who sent cards, gifts, texts and e-mails, dropped by just once or spent long hours at my bedside I can't begin to adequately express my thanks. Just know that I love you all and will never forget the role you played in my recuperation.

I’m now pretty much back up to speed. And reading some of the chatrooms on the internet it could have turned out a hell of a lot worse.

It does for many people, like the man I read about who'd undergone just the same procedure at a very similar age, but it had taken him several days just to learn how to talk again.

Or the brave souls with whom I shared a ward before my surgery: John, battling a debilitating neurological disorder and his lack of education in an effort to make sense of his situation; Simon, in for experimental treatment to manage the chronic headaches that had blighted his life for six years since his surgery; Eastender Terry, who'd had a tumour removed from the meningal sac that protects the brain for the third time in his life, and was taking his not inconsiderable anger out on the world, turning the air blue in the middle of the night, and going out on the piss from his hospital bed mere days after his op; another, much older John, puzzled and disoriented after a stroke, prone to absconding and talking nonsense, and butt of most of Terry's sadistic humour; and Tony, seriously brain damaged by radiation treatment as a child and reliant for the past 20 years or so on virtual 24-hour care by his two honest, hard-working, devoted parents.

Next to them, what did I really go through? Although it's not unknown for these cysts to grow back, it is incredibly rare so hopefully the worst is in the past. But both surgical and medical teams will keep an eye on me at regular intervals for some time to come. The National does so many amazing things for so many people, I want to give something back to them at some point.

I think life’s pretty much back to normal – or as near normal as it ever was – but the whole episode still looms pretty large, and I think we’re all still trying to make sense of it. I know I am.

And just the other week, Thomas broke down in tears on me in the middle of the night as he told me what a frightening time it had been. Admittedly he was tired and emotional in every sense of the phrase, but it was the first time he’d really opened up to me.

As for the scar (roughly crescent-shaped and a good few inches long), it's not currently on permanent display, but as time progresses and my hairline recedes it should offer plenty of opportunity to spin a tall tale or two for nieces and nephews.

I still get the occasional twinge, tire a little easier than before, but other than that the episode has pretty much passed into folklore, used as a joke or stock excuse and greeted with groans, rolling eyes and general derision by those all too familiar with the story.

Just occasionally, though, the enormity of what I went through - what we all went through - strikes me cold, and I think, "Fuck it, it is a big deal" then immediately feel guilty for caring about this thing that should be in the past.

But am I so wrong? After all, a couple of months ago I met a woman who had just held her 10 year survival party. And despite the fact that her op had left her with impaired mobility down her left side, she said my surgery had been much more serious and I shouldn't ignore that.

And as long as I have to keep going back for check-ups and scans, it will never disappear completely, so why pretend otherwise?

It's okay for it to be part of who I am, just so long as I don't let it become all that I am. Remember that, and hopefully I can get on with the future. At this point I'm just glad to be alive.


Sherri said...

Thank you for sharing the story with me. I'd noticed your absense and wondered where you went. Distance, interwebinet, relative strangers, all that. Still, in that interwebinet way, I care what goes on.

And I'm glad you are back. So, What are the titles in that stack of gift books?

Jorj said...

I switch between jaw-droppingly impressed, terrified, unbearably sad, terrified and desirous of listening to Richard Thompson.

Gladness at your return a given, I would like to add that I am glad that you have returned.

Charles said...

Ben, haven't seen you for ages, but I just thought I'd drop in on your blog and got this - I knew all this stuff was going on, but distance from the Beeb meant I didn't really hear more than whispers. Anyhow, good on you.

Ben said...

Sherri - Thank you for your concern - even now, after the event, it's very much appreciated. So many blogs fall silent and one wonders what happened to the people behind them, so I'd always intended to tell the full story. That said, I could have gone on twice as long. :)

As for the books they include Neal Stephenson's Cryptonomicon, The Old Man and the Sea, Danny Wallace's Yes Man, Spike Lee's Autobiography, A Short History of Tractors in Ukrainian and Never Let Me Go. Oh, and Alley Cats: A collection of kitty tales. I have yet to finish reading them all.

Jorj - That makes two of us. :)

And apart from the Richard Thompson bit (should I know him?)I think I experienced most of those feelings myself in the past year. And frankly, terrified is overrated.

I'm glad to see you back as well - and without the veil of a pseudonym to boot. Stumblebox is a most enjoyable addition to the blogosphere.

Charles - Nice to hear from you, and thanks for the good wishes. I like to think our shared friends and colleagues have better things to share with you than the minutiae of my medical drama. How's life for you and the missus?

Heather said...

Golly. Jorj recommended your article to a few people because he was so impressed, and I'm really glad I took the time to read it.

Reflecting on situations that have put you through the mill (to say the least) with the right mix of emotion, humour and introspection is a very difficult thing to do. I look forward to reading more of your writing, on whatever subject.

Ben said...

Wow. Thanks very much Heather. It's very kind of you to say that.

To be honest, looking at it objectively I feel it could have been cleaner and tighter. Too much exposition at the top for my liking - but then if you're going to tell a story, you've got to tell the story.

Oh, and I'm still meaning to mail you about libraries. :)