Sunday, 6 September 2015

Guest post: Barry Anderson

While I'm holed up in hospital I'll take this opportunity to publish another post from a guest contributor. 

Still recovering in hospital after almost three weeks
Vince Anderson and I have been friends since we were pimply 13-year olds in Bendigo. The following piece is from Vince's father Barry. I always knew Barry as a cricket-mad lovable larrikin and the man who mistook me for a girl when I had let my hair grow a bit too long in the unfortunate "undercut years", but I never suspected a talented and humorous sports journalist lurked just below the surface. Barry's claim of being a technophobe is now seriously in doubt as the Bendigo Advertiser newspaper formatting below is all his work. A big thank you to Barry for the huge effort he has put in to telling the story of Hawl and Chwith.

P.s. Huge congratulations also to Vince for passing the written component of the anaesthesia exam which took over his life for the last 12 months. Good luck for the oral component - I'm sure you will smash it as always!

By Barry Anderson

G'day Cameron.

I have sent this by email via Vince as I don't know how to "Blog" or even what "Blogging" is!

Vince forwarded me your Browny and the Brain, and your courage and sense of humour inspired me to send to you a narrative of my main medical issue over the past three years. I have blatantly copied your tennis analogy and I hope you will find it mildly amusing. Based on my own experiences, I agree with you that Oncologists do not have a great sense of humour. 

I would like to wish you well in your continued match against Glioblastoma and despite losing the first set I hope you win in three. 

All the best for the future,
Barry Anderson

Saturday, 15 August 2015

(Ange) Guest Post

Ange and I have been friends for 16 years. She was the first person to volunteer for my GBM 'research team' and has been an amazing support throughout this whole journey. She took a week away from her study and three jobs to fly to London and spend a week looking after me after I had just received the news of my tumour regrowth and pending surgery. Nikki and I can't find the words to thank her enough for her love and support.

By Ange Guest

Disclaimer – When Cam asked me to write a ‘Guest’ post (pun intended) on his blog, he gave me no parameters or guidelines, just to write whatever I wanted.  Whilst I think Cam has the intellectual and witty aspects down pat, the emotional aspect is more my forte.  So Cam, hopefully you are OK with outsourcing some of your ‘emoting’ to me.    

The days leading up to my departure for the UK involved a flurry of text messages back and forth with Cam.  We covered all the important issues including what would I wear to the BBC Proms concert at Royal Albert Hall given my swollen cankles from the flight, or which of the six Ottolenghi restaurants we were going to dine at, but the last one I received stopped me in my tracks. It reminded me why I was actually going to London and that this was not just any old holiday. Cam had received his scan results early (never a good sign) which indicated his tumour had regrown on the other side of his brain and this was the cause of his recent seizures.

Obligatory selfie with photobombing Pharaoh at the British Museum
My first weekend in London was so exciting, catching up with Cam and Ross, reminiscing about how smart/talented/funny/good looking we were in the late 90s.  We clearly didn’t pace ourselves very well however and on my second day there, Cam treated me to a ‘welcome-to-London’ seizure, which scared the hell out of me. My London induction had thankfully also included a tour of Cam’s medicine cabinet, which contained at least 30-40 types of medications and supplements, and a run through of the Epilepsy management, which ended up coming in very handy.  But in true Cameron Brown style, throughout this whole ordeal, he was totally calm, giving me clear instructions and was even cracking jokes within seconds of the seizure subsiding. Somehow we found ourselves rating our respective performances on how we had managed the first seizure together.  We then did the only sensible thing to help soothe the senses after such a scare…. watched Wayne’s World.  Watching Wayne’s World then became our post-seizure ritual and we both agreed that even after 20 years, that movie has not aged at all and has only become funnier, particular mentions go to the Foxy Lady and Gun Rack scenes.

Meeting with Cam’s surgeon and oncologist was quite a sobering experience as it brought to life what all of this research I had been helping Cam with was actually about.  Seeing the scan results on the screen and seeing that the second tumour was nearly as big as the first one was really confronting and made it so much more real.  George, the lovely surgeon talked about how the tumour was in the Supplementary Motor Area (SMA) which controls the right foot and speech (functions that Cam and I agreed were more integral, rather than supplementary but anyway).  He also explained that one risk of surgery was possible mutism, then paused for breath (which lasted an eternity) and finally added that this would be a temporary side effect and speech would return.  Cam pointed out in his usual deadpan manner that it would have been more helpful to perhaps present these two bits of information in the reverse order.    

Spending 9 days in London just hanging out with Cam was the most incredible experience and was so much more amazing than I had imagined.  It was so nice not to be distracted by the ‘doing’ of being a tourist, as this just allowed us to focus on the ‘being’, just the everyday stuff of hanging out, talking, going to yoga, watching movies and cooking. We shared things with each other that we had never thought to share before, despite being friends for 16 years.   I also found out that Cam has a shoe fetish - were other people aware of this??

Ange, Cam, Nikki and Rafa
Although I only got to spend the last few days with Nikki, I was blown away by her endless strength and compassion. I was in such awe of Nikki and Cam’s resilience as a couple and the constant love, care and consideration they have for one another through such an impossible situation.  Their capacity to find the positive element in a situation is phenomenal and was a very humbling experience (Sorry Cam, I know, too much emoting!!).  Since I have returned to Australia, I feel like I have a whole different perspective on things.  This trip and my time with Cam and Nikki helped me to see what is important (and what is not) and to notice the positives.  Oh and I also feel like a complete person now that I have dined at one of Yotam Ottolenghi’s restaurants!

Our pilgrimage to Ottolenghi (and a rare night off for nurse/chef Ange)
We ordered every dish on the menu and then spent a long time debating our favourites

Thursday, 23 July 2015

Game and first set to glioblastoma

It’s as if the universe has a sense of humour. Or perhaps it is an avid reader of this blog and likes to provide content. I first got a sense of this when I discovered that after 15 years of vegetarianism, the best diet for keeping cancer at bay was basically an all meat and animal fat one. It also struck me as ironic that my first hospitalisation as a fit 34 year old sports lover would be for cancer, a disease that is on the rise because of an increasingly unfit and aging population. 

I shouldn’t have been surprised then that on Friday, when thinking about how much I was looking forward to my first post-treatment MRI scan and drafting the first version of this blog post, I had my first full body seizure. I was looking forward to the scan because I have been so healthy and was hoping for confirmation of this fact in the results. I should have known better. It’s hard to know how long the seizure lasted but it must have been about three minutes. For that whole time, from when I first fell backwards, I was paralysed and it felt like someone was electrocuting me. I never lost consciousness (or wet myself, as I was asked by the docs) and had the sensation of tumbling through the air, expecting to hit my head on the bathroom tiles. It was the most frightening experience of my life, including my diagnosis and finding out about my prognosis.

I assumed the seizure meant that the tumour had returned – it must have diarised the date of my scan and decided to rear its ugly head just in time to rain on my parade. I had my post-treatment scan as planned on Monday, the results of which are now in, and indeed the tumour had lulled me in to a false sense of security - it has regrown on the left hand side of my brain (my first operation was on the right).  

It's not as bad as it first sounds. On the up-side the tumour is right near the surface of my brain so George (my surgeon) could practically scoop the little fracker out with an ice-cream scoop this time. I can also ask the surgeon to preserve more of the ice cream this time around to give me vital genetic information about my tumour that may even lead to the development of a personalised vaccine to use against it. It will be like stealing my opponents little black book that he has kept over the years full of notes on how to beat me. It is also in a relatively safe part of my brain so shouldn’t have any impact on my memory or personality (and no Nik, they haven’t worked out a way of “uploading” a personality while they are messing around in there). Perhaps the best news of all (apart from the chance now to join my scar from ear to ear) is that the original tumour site looks to be completely stable with no signs of regrowth or residual tumour. Finally it means I will be classified as a “recurrent” patient which opens up the door to many more clinical trials. 

I’m meeting with my surgeon on Tuesday and am expecting the operation to go ahead on August 5. I’m much calmer this time around because I have been through all of this before. So game and first set to glioblastoma, but I have come out refreshed at the start of the second set and secured an early break - it looks like this one is going the full distance. Final note: never joke with oncologists about the site of your next planned tumour - their sense of humour may not be as dark as yours.

On a brighter (but still tennis themed) note, Nikki and I channelled my 25% British heritage and cheered “our Andy” Murray over the line against the Frenchman Gilles Simon in the Davis Cup quarter-final on Sunday. The bunting was out in force at the historic Queen’s Club to get the Brits in to their first semi-final in 34 years. They now play the Aussies who recovered from a two love deficit against that tennis powerhouse Kazakhstan to progress to their first semi-final since returning from their extended holiday in the wilderness of world team tennis.

Andy in action at The Queen's Club

Cam in action at The Queen's Club

Sunday, 28 June 2015

Give yourself a cancer diagnosis

And I don’t mean by looking up that weird looking mole on WebMD or a fake diagnosis like Melbourne’s Belle Gibson did. 

I’ve finished my seventh and final round of chemotherapy so have been reflecting on the wild ride that me, Nikki, and our families have been on since that wobbly walk home from dinner last October. Of course the diagnosis has changed our lives, and most of it for the worse, but there are definitely some things that I am thankful to the tumour for (I hope he is not reading this - I don’t want him to get a big head).

I know it is clich├ęd but the diagnosis made me realise and appreciate all of the wonderful things I already had in my life and to worry less about those that were not. At the top of this list is my beautiful wife Nikki, without who the past eight months would have been unbearable. Nikki has been there and borne the brunt of the worst of my treatment – she lost her husband for a while but now he is back. My gift to you is no more cleaning up my chemo vomit (and a trip to Paris this weekend). My diagnosis also brought out the very best in my friends. You are already familiar with the heroics of Nik and Stephen and two weeks ago my MBA mate Julian Delamer generously launched a
fundraising campaign in tandem with his first assault on a marathon. Good luck with the marathon buddy - Nikki and I hope to be cheering you on at the finish line in Berlin.

Julian (second from right), me and classmates at the Forbidden City on our MBA trip to Beijing

I have also found yoga and meditation. One of the practices of yoga is called Sankalpa which means to draw on our deepest intentions, and the qualities of the Divine within, to commit to a course of action above all others. My inspirational teacher Julie (herself a cancer survivor) asks her students to recite their Sankalpa to themselves three times as a part of our practice. My Sankalpa has not changed since week 1: “to grow old with Nikki, live life to the fullest and to die of old age”. In the past few weeks I have become a Battlestar Galactica junkie. While it is a sci-fi show with worse action scenes than a low budget direct-to-TV movie, I enjoy its reflections on what it means to be human. In the immortal words of Commander Adama “Because it's not enough to just live. You have to 
have something to live for.” Adama must have been a yoga devotee long before he got a taste for killing the cylon “toasters” (the baddies).

Finally, my diagnosis has led to me revaluate the career that I was chasing. I started my MBA in 2013 with the intention of moving into private equity / venture capital in the clean technology industry. I have since decided against this option because if I’m being honest with myself I don’t think it would get me out of bed in the morning. I love cleantech startups and working in sustainability but the culture of private equity is not for me. I don’t think I would have been that honest with myself in the absence of a cancer diagnosis. Who knows how long I would have gone down that unhappy path for before I made such a realisation. At the end of the day I want to come home and be proud of the work that I’ve done and to enjoy the company of my peers.

So, tumour: I love you and there are many things I am thankful to you for. But you picked on the wrong guy so can you please "frack off" (for the uninitiated, that was another sad Battlestar Galactica reference - what have I become?) and let me get on with dying of old age.

Wednesday, 3 June 2015

Light at the end of the tunnel

I’ve just spent a lovely couple of days with two new ladies in my life, Pip and Poppet.  I have started dog sitting for people in the local area, finding pooches in need of daytime attention via  Apparently spending time with dogs is supposed to be great for cancer patients – how could it not be? It gets me out walking during the day and they are two comical characters who always making me laugh.
Poppet took this photo

Pip is of a younger generation and so better at taking selfies.  She used a selfie stick to take this one.
I’m coming up to my last round of chemotherapy which makes me equal parts happy and fearful.  Happy because at the higher dose the chemo is really making me feel ill – last round I had 12 ‘chats’ to the toilet in one night.  And fearful because it is the end of my formal treatment and if the tumour hasn’t responded (either stabilised or shrunk) they will start me on not one but three different types of chemo for who knows how long.  I won’t know whether it has really responded until I get the results of my next MRI back sometime in July but a little voice inside me says it has (I hope the voice is not that of the tumour).

The recent months have given me cause for hope with new announcements being made about “breakthrough” treatments.  One Duke University study showed that giving patients a modified version of the polio vaccine can delay and even prevent tumours from re-growing.  Another trial showed that instead of opening people's heads up during surgery and putting them back together with titanium plates and screws, which has left me with what feels like a lunar surface for a skull, surgeons can use a catheter to directly access the tumour and directly infuse a radioactive isotope. The isotopes are enclosed in fat particles that stabilize them and keep them inside of the tumour. 
Finally, a cure for blue skin

A third development is that of a new drug called Rindopepimut, which sounds like a German dessert that I don’t want to eat.  The drug company, Celldex, just released really promising results from their phase II study and have decided to make it available to patients, before it gets regulatory approval, through a free compassionate access programme.  Drug companies sometimes do this if they want more patient data and to get doctors aware of the drug and used to prescribing its use.  The drug targets a specific mutation that I have tested positive for – it is a mutation associated with shorter survival times so it is important to have it treated. 

I feel more confident than ever that I am going to beat this thing with my combination of chemotherapy, surgery, radiotherapy, ketogenic diet, re-purposed drugs, vitamins, meditation and healthy lifestyle (if you can call lawn bowls that given how much tea and biscuits they throw down) and these new developments.  “When the going gets tough, the tough get going,” as Billy Ocean would say. 

Some of the developments may involve travel abroad which will only possible because of the super generous donations that have been made to the Gofundme campaign that was set up by Stephen and Nik.  At the risk of repeating myself, thank you so much to everyone who has contributed.  Cue “Wind beneath my wings” (the Bette Midler version, of course).

Saturday, 2 May 2015

Coming out of the fog

I’ve improved so much both physically and mentally since my trip to Australia.  The only blip in this otherwise steady improvement was during my last round of chemo when I vomited every day.  The upside to this was I now feel that I’ve earned my cancer stripes.  Everyone links cancer and chemo with vomiting and hair loss and while I’ve had the latter it wasn’t due to the chemo.  Now I feel like I’ve finally got some street cred in cancer town.  

I’ve been mulling over why I’ve improved so much and I’d settled on the fact that I took my final steroid tablet the day before I boarded the plane for Melbourne.  I figured that the steroids must have been contributing to a mental and physical fog over the past 4 months.  I put this theory to my neurologist earlier this week and he said that usually the opposite is true: people have a hard time and more symptoms when they come off steroids, not when they are on them. 

In retrospect I think it is actually either my new diet that has caused the new me or simply my brain still recovering from the effects of radiotherapy.  I’m now strong enough to really get active again and those who know me well (or at all) will know that I also suffer from incurable white line fever.  This last manifested itself on the real tennis courts of Cambridge and London.  Unfortunately, I’ve not quite recovered enough strength or balance for tennis or real tennis, or any strenuous sport. So I’ve taken up, arguably the most noble and dangerous sport in the world: lawn bowls.  No other sport claims more lives (according to an article about adventure sports on because “the players are deeply involved in the game till their last breath. They stop at nothing short of victory, in their pursuit. Those who escape death end up with bruises, torn knees, broken hips and bone fractures. The game generates extreme stresses resulting in strokes and even heart attack.” Yikes! 

It’s early days – I’ve signed up with Southwark Park Bowls Club where ice creams and tea are sold for 20p.  I’m still sizing up for my cream trousers and polo shirt combination and my set of "woods", and I know I’m 40 years younger than my club mates, but I’m counting on winning my first games soon (and outliving one or two of them as well!). 

Before my illness I had sufficient grey hair to not stand out too much at the club.  It fell out along with my ginger locks when I had radiotherapy.  I now have a lot of regrowth but it is no longer grey and ginger but dark brown! It looks as though I have dyed half my hair.  No longer being a full red-head makes me feel like a little bit ashamed: when I see a fellow ginger in the street I have to look away.
Contamplating life as a non-ginger

With every sport I take up the average age increases by 20 years.  What's next - bridge?

The most important milestone of this journey was the MRI scan I had last weekend – my first since diagnosis. I wasn’t expecting to get the results back until mid-May, but when I visited my neurologist earlier this week he had the scan of somebody up on the computer screen behind him. Looking at it, I thought to myself: “I wouldn’t want to be the poor bugger whose scan that is”.  It was showing a great big tumour on the left hand side of the brain.  I knew it wasn’t mine because only a few days had passed since I had my scan taken and my tumour was on my right hand side.  Turns out I was wrong.  My neurologist (who has what you could call a somewhat awkward bedside manner) promptly told me that my scan results were “interesting”: the scan on the monitor was mine and I now had a huge tumour on the other side of my brain. 

My mind was racing: more pain, more surgery, the failure of my anti-cancer diet and supplement regime, more loss of body function, more rehab, more radiotherapy and more chemotherapy, and worst of all, my promising lawn bowling career mercilessly cut down before it had a chance to blossom.  It was at that point that my doctor chose to tell me about a phenomenon called pseudoprogression. This is in fact is not the title of a second-rate crime novel but a common effect seen in MRIs taken while a patient is still undergoing treatment.  The area that is targeted with radiotherapy and chemotherapy can sometimes show up as an enhancement on the scan.  I had been told this already but I didn’t expect it to look exactly like a new tumour.  So the result of my first scan was neither good nor bad but as my good friend Ange would say it is “better than a poke in the eye with a burnt stick”.  My next scan is booked in for July so this rollercoaster ride is the new normal.

A huge thank you for every one of the 90 donations made to my GoFundMe campaign so far.  Your generosity will help me to afford new medication and be confident to enrol in trials that involve travel abroad. 

I put the call out in my last post for help with keeping on top of the latest developments in brain cancer treatment.  A very special thanks to Ange, Summer, Siri, Carly, Brittany, Taryn and Shibani who have all volunteered their time to support my research efforts.   I feel very lucky that it is now Browny and the Brains. 

Monday, 13 April 2015

I get by with a little help from my friends

I have so many wonderful friends and family and I’d like to thank each and every one of you for your offers of assistance.  When I was in Australia recently it felt like my 21st or our wedding all over again.  I remember saying at my wedding that “the only time a group of people this special to me will ever get together again is at my funeral”....but I wasn’t factoring in a brain cancer diagnosis!  

Catching up with 30 of my closest Australian friends
People react in different ways to finding out you have cancer.  Most people are upbeat and want to get the latest update.  Others want to know how they can help, even if they are on the other side of the world.  I’ve had friends send over books, audiobooks, meditation tracks, meditation mats and cushions, videos, vouchers, recipes, cards, baked goods (hello monthly brownie club addressed to Baron Brown), fruit baskets and more, with parcels travelling all the way from the US and Australia.

There are other things that people around the world can do to help and, surprisingly, most of it is desk based.  One of the hardest things I have had to get my head around is cancer itself – what it is, treatments, latest research and how the whole cancer ecosystem works. After 5 months, I’m now a cancer expert. But there’s so much to know and keep on top of – and I could use some help! If you come across news articles on brain tumour treatments please send the link to me, don’t assume that I have seen it or know of it. Or, if you are interested in giving me a hand to research trials that are being run in Europe and the USA on glioblastoma, please let me know! The more brains the better :)

When people ask how they can help, it’s hard to know what to say. I absolutely love getting the presents and letters – they remind me that I have so much to enjoy in life. But most of the things that are the front of our minds are about making sure that we get access to cutting edge treatments that might extend my life expectancy. For instance, I’m taking an anti-viral drug called valgancyclovir which has been shown in clinical studies to extend the lives of those who take it by several years.  I’m also taking 20+ supplements and off-label drugs (drugs being used for a use other that the original one they were designed/approved for) on a daily basis.  This strategy gets referred to as the cocktail approach to treating cancer and it is based on the strategy that was pioneered for the treatment of HIV/AIDS in the 1970s/80s. The third weapon in my arsenal is a trial run by the Care Oncology Clinic here in London who are testing a new approach to treating cancer using four different off-label drugs.

The wonderful thing about the NHS here in the UK is that is provides world-class health care for every single person who lives and works here – regardless of their income. If there is to be a downside with this system it is that in some sense you are lulled into a false sense of security. It turns out that even with a terminal diagnosis everybody gets a standard type of care and nothing else is available. It’s up to you to find out ways to prolong your life and to fund it privately. We’re still investing in our future – but it’s in a completely different way to what we had dreamed. 

One of the most amazing acts of generosity has come from all the people who have donated money to a GoFundMe site created by my good friends Stephen Roux and Nik Devidas. I have always had a hard time asking for help so it is moving to see so many friends and family – and strangers! – donating money to help me to buy medications and fund other activities and therapies that might save my life.  Thank you to Stephen and Nik for setting up and promoting the campaign – and a huge thank you to everyone who has donated.  I promise to live for many years to come and do something incredible with my life. 

Nik "the Godfather" Devidas
Stephen "The Rock" Roux

Tuesday, 10 March 2015

Anti-cancer diet

My first post since returning to work four days a week. Statutory sick pay doesn't extend very far in London, so the only practical option is to go back to work.  The blog posts have taken a hit, but I'm back! 

I've talked about the chemo and the radio, and about outlook in life and how important that is in the fight against cancer. You’re probably all wondering“but what about diet?”.  Vegan?  No.  Vegetarian?  No.  Organic?  Not strictly.  Well, after 14 years of a variation of vegan/vegetarian/pescetarian diet, I’ve decided to turn my back on the old three veg and embrace a new anti-cancer diet.  

It involves eating more meat and cheese than I ever have before in my life.  People keep asking me if I’m enjoying it after so many years of being vegetarian and pescetarian, and the honest answer is “some parts I do and some parts I don’t”.  The smoked bacon part I enjoy, the pork chops I don’t.  The idea behind the diet is that cancer is supposed to be a metabolic disease and that it feeds on blood sugar, so starving it of sugars/carbohydrates is meant to deprive it of the nutrients it needs to grow.  The most critical thing is the absence of processed sugar and carbs.  

It has been about a month now and while I've lost a little bit of weight it’s not going too badly.  Nikki is getting pretty creative with desserts, including the recent purchase of an ice cream maker which I'm looking forward to sampling the produce of.  It turns out that she also has a knack for haggling with the vendors at Smithfield Meat Market in the wee hours of the morning, coming home with 5kgs of smoked bacon at a cut price.  

Here are a couple of snaps of our recent creations: 

Three-meat pizza with a cauliflower base 

Delicious salmon grilled in paprika, coconut oil and ginger
There are a lot of books out there that emphasise the role of diet in fighting cancer - identifying every type of diet from a diet of only Japanese cuisine to juice cleanses. It is tough deciding what diet is right - they all seem to make sense in one way or another. The most interesting developments in research are the are dozens of trials into the effect of the ketogenic diet on brain cancers. But, like everything else that I've learnt through this journey, diet is only one part of the equation. Your treatment plan, your state of mind, exercise and a wonderful wife are all just as important. 

Tuesday, 10 February 2015

Rafa in my corner

Some very special gifts have arrived over the past few weeks that I’d like to share with you.  The first was from my new best friend Rafael Nadal (via a very old friend and tennis coach, Steve Storer) – a shirt that says “Cameron, I'm in your corner” and signed by Rafa himself.  

I’m not afraid to admit that I cried when I realised what it was.  It is now hanging with great pride over my bed and will inspire me to fight like Rafa every day.  Steve got the idea to get Rafa to sign the shirt after hearing of my request for a Rafa poster for my hospital room.  He then called in a favour from a friend in high places.  Here he is with the prize at Melbourne Park:

Steve was my coach, mentor and boss for going on 10 years and I owe much to him of who I am today.  I cannot thank him enough for this special gift.  When I was training under Steve I kept a journal where I would comment on my various matches.  When I was 16 I hit a rough patch and fell out of love with tennis.  In my journal Steve wrote the word ‘conjure’ along with its definition from the dictionary to inspire me to find something deep inside.  Little did I know that all these years later I’d find myself needing to conjure up something from deep inside to overcome the greatest challenge of my life. 

I like to think that Rafa’s message got truncated from this:

Dear Cam,

With this shirt I hereby gift to you a little slice of my fighting spirit.  Draw on it when you are when you are feeling down and in need of inspiration.  If there are dark days ahead, just know that we are in this together, 100%.

See you at Wimbledon in 2030 (I will be on the seniors’ tour by then, and as bald as you are today).

Best wishes,

I also like this (actual) quote from him:

“The glory is being happy. The glory is not winning here or winning there. The glory is enjoying practicing, enjoy every day, enjoying to work hard, trying to be a better player than before.”

The second gift was from a group of friends who got together and contributed to a personalised recipe book.  It contained 24 recipes including favourites like ‘The Dichotomy Biscuit’ by Sum and Ben, ‘Organic Gypsy Hipster Raw Cacao Balls of Wonder’ by Reuben and Rani Devidas, and ‘Cauliflower Crust Pizza’ by Hammo and Anna.  It also included such novelties as ‘Chickenfish Surprise’ by Nick Potter, ‘Steak a la Ziffer’ (guess who?), ‘witchetty grub’ by Vanessa, ‘Weetbix a la Smally’ by Dave Small and ‘Mouse Tartare’ by Oscar the cat.  The only thing missing were recipes for how to prepare the tumour – although perhaps I could just experiment with adding it to the bbq recipe that the Northern Territory gang contributed or the ‘Gone Troppo breakfast smoothie’ recipe.  Thank you to everyone who contributed and a special thank you to Anna, Hammo and Westy for editing the masterpiece.

The editors - Hammo and Anna
The perfect family (and the other editor - Westy)
Hammo having played too much rugby
Scotty doing it for Australia
A familiar pose
Chrissy and Ada
Oscar the cat, post mouse
I thought I’d showcase some of the other gifts I've received since being diagnosed:

  • Two great Aussie CDs from Westy and Jess,
  • A well-loved bottle of whisky, meditation bowl, and Maasai body wrap from Ross and Jane,
  • A good read from Vanessa, 'The Last of the Nomads', to keep my mind off things,
  • Two classics vinyl albums from Philipp in Germany: 'The Who, Live at Leeds' and 'Rodriguez, Coming from Reality',
  • Delicious brownies on a monthly basis from Nik and Co.,
  • A lovely scarf from Sum, and
  • Two wonderful audio CDs and a music CD from my ex-colleagues at EPA Victoria and a very creative card courtesy of Sonia.

It gives me great comfort that I have so many friends and family in Australia thinking of me and sending me love across the seas.

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.