Sunday, 18 January 2015

The diagnosis

First, an addendum to my last posting about amusing comments I have received over the past few months. During the last two weeks I have experienced what I call “mini-seizures,” which I mentioned to a Melbourne-based Executive MBA student and new father who shall remain nameless. His response was as follows:

“Mini seizures - what're you complaining about!! I’m only interested in the full blown, fall over middle of the tube kind, so that they have to pull the emergency brakes and evacuate the stations-kind ;)”

Much love to the unnamed MBA student, his gorgeous wife, and new-born daughter Madeleine.

But back to the diagnosis story.

We had waited a week after surgery for the diagnosis – in that time, I had learned to walk again (although uneasily) and had regained some use of my left-hand side. I had more and more visitors - my MBA friends brought food, masses of DVDs and gossip. When my team from WSP visited, I thought they might have been coming to rough me up a bit or to see me about a missed deliverable. After all, I had walked out of work on a Friday – two weeks out from the final report of a six-month long project – and had not been back since. My fears heightened when Ellen came striding in holding a WSP-branded carry bag which I imagined to contain a long report that required proof reading. Little did I know that they had organised a collection from my wider-WSP colleagues in order to buy me an iPad mini to relieve the boredom and aid my recovery. I was completely blown away! I’ve used it every day since for everything from brain training to tracking my treatment schedule to maintaining contact with friends and family - I don’t know what I would have done without it.


I don't have any photos from diagnosis day, so here is one from the morning of the surgery, complete with a full head of ginger locks and stickers to guide the surgeons to where my brain is/was.


"Between the stickers, George"

Finally, diagnosis day came. I’d been building up to this day for a week now and I thought I was ready to face anything. My surgeon, George Samandouras, asked me if I’d prefer to hear the news from my bed or to talk in private. I thought, ‘my roommates and I are on a journey together: they have seen me pee, I’ve heard Jim puke after every meal, and Simon complain about his “irregular stools”, so let’s finish this journey together’. But George then insisted that we move to somewhere private which I look back on and (a) I am thankful for, and (b) should have made me realise that I wasn’t about to hear the “it was all a big fuss over nothing” diagnosis that I’d been hoping for. 

We moved next door where we had some privacy and a grim-faced George proceeded to tell me that the friend I’d been hiding in my head had been tested and found to be level IV brain cancer, otherwise known as glioblastoma multiforme (GBM). The good news: GBMs rarely metastasise to other parts of the body. The bad news: GBM patients only survive an average of 15 months after diagnosis. That’s very much an average and I have multiple factors working in my favour: youth, good health, and good looks (clinically proven in a double-blind trial to significantly extend survival). The longest surviving known GBM-patient is celebrating his 28th year post-diagnosis, after he was originally told that he had only three months to live.

What goes through your mind when you’re told you only have such a short amount of time left? Is that enough time to get four years of neglected tax affairs in order? So much for all of those ideas I had for my novelty-themed 40th birthday party: ‘ginger tennis stars of the 1980s’, ‘favourite baddy from No Country for Old Men’ (“you’ve got to call it”). Was Rafa's demolition of Mikhail Kukushkin at Wimbledon 2014 to be the last time I would see my idol play? 

When people first learn that I have such a short outlook they often ask leading questions designed to see if I’m ticking things off a bucket list. Actually, I don’t have a bucket list of things to do before I die because I’m not planning on dying any sooner than the next person. I think that having a bucket list reinforces the fact that you only have so much time left. What happens when you get to the bottom of the list? Do you prepare to die, or move to bucket list B – (the stuff you kinda want to do but not that badly)?

I’m planning on being a ‘super survivor’ and am using things including diet, exercise, supplements, meditation and yoga to give myself the best chance possible to achieve this. Who knows, if I survive long enough perhaps researchers will develop a cure for GBM. The other reason for not having a bucket list is that I want my everyday life to be filled with joy and meaning in a way that jumping off bridges with a rope tied to my leg cannot even get close to. I would trade an infinite number of bucket list items just to spend a lazy Sunday morning brunch at Lantana with Nikki, dreaming about what the future might hold.

Monday, 5 January 2015

The recovery part 1, or, ‘dog bait’

Happy New Year!

Okay so I’ve glossed over parts of the story and now it’s time to fill in the gaps, starting with my recovery time in hospital.  I have very little recollection of the days following my surgery which I guess is not surprising given they spent four hours messing with my hat holder. 

I was confined to my bed for the first four days while the effects of the surgery wore off and the strength returned to my left hand side.  I had one week to wait for the pathology results of the monster they removed from my head.   During this time I was surrounded and cared for by Nikki, my parents and Nikki’s parents, not to mention the amazing nurses in the Molly Lane Fox Unit of the National Hospital for Neurology and Neurosurgery. I had enough bandages around my head to make me look like an extra out of The Mummy Returns and there was a drain coming out of my skull to relieve the pressure from the build-up of fluid.  When the drain was removed and I reached out for a reassuring hand to squeeze, I found myself holding hands with my father-in-law rather than Nikki.  She had fled the room before the sentence "we are going to remove the brain drain" was finished, as she is about as good as dealing with blood and guts as I am at dancing (as anyone who has witnessed the Browny "skinny" dance can attest).  There were four other patients sharing my room who were at least twice my age – their list of ailments made me think twice about wanting to live in to old age (one had a bladder made out of his bowel, or the other way around).   

In the days following the surgery a special delivery arrived – a giant treat-filled hamper from my friends back in Australia.  My father-in-law Siri didn’t need to be invited twice to sample a triple choc muffin. 

The spirit-lifting hamper, less the triple choc muffin

It arrived at just the right time to inject some culinary variety into the vegetarian hospital “menu” (comprised of three dishes – I tried all three and I don’t recall having sighted a vegetable) – and to boost my blood sugar levels / spirits.

On day five Nikki was able to take me to the park in a wheelchair - this meant I was able to get some fresh air and escape the cycle of the grey and yellow pastes that pass as hospital food.  I was completely oblivious to the fact that I was just a pawn in a bigger game which I’m going to call ‘dog baiting’.  Russell Square is overrun with the well-bred pooches of London’s inner city and it was next to these unsuspecting hounds that Nikki would wheel me while urging me to take off my beanie to “show a bit of wound” to the owners.  The plan worked wonders both in terms of trapping dogs/owners in to some sympathy pats and in making me smile.  One handsome poodle, Benson, and his owner deserve a special mention for their story of chasing deer through Richmond Park which reminded me of one of my all-time favourite YouTube videos “Jesus Christ in Richmond Park”.

Back in hospital I started to break the news of my illness and surgery to friends and work colleagues.  Here are some of the responses that made me chuckle (a bottle of wine for anyone who guesses the identity of each of the following):
 
“Now that the little bastard is out, here's a list of things you can do with the tumour:

1/ frame it

2/ burn it

3/ eat it (gross)

4/ squash it

5/ waterboard it”

 
Me: “I haven't made progress on the two pager I promised you...over the past two weeks I have been diagnosed with brain cancer.”
Colleague: “Cam, WTF?!?!?! Man, come on!  I can't leave you alone for a minute!”

 
“I never put you down as an attention seeker but I was obviously wrong ;-)”

 
“When they took out a bit in the surgery did they manage to remove that pesky vegetarian gene that's been plaguing you since college??”

 
Wheelchair adventures and gift hampers aside, I was recovering from the surgery, but anxiously awaiting the results of tests on the tumour. The uncertainty and waiting was hard - I just wantd to know what I was dealing with so that I could move on.