Thursday, 25 December 2014

Merry Christmas!

Merry Christmas everyone!

Nikki and I are in Edinburgh basking in the sunshine.  I feel very lucky to be here and to be feeling so healthy after finishing my radiotherapy last Sunday.  To celebrate the end of my 30th radio session Nikki and I hit up Lantana for brunch to enjoy some of the best coffee and Melbourne-style food in London.

This time away has given me time to reflect on some of the other things that I feel lucky for:
  • The angry badger in my head was found so quickly and successfully removed
  • I've been able to recover 90% of my strength and mental faculties following the operation
  • I have the most amazing wife who has been my strength and inspiration throughout this period
  • Family and friends around the world who have showered me with love and support in every way imaginable 
  • I have a kick-ass scar and a Shoreditch-worthy hairstyle
This turns heads on the tube (the scar, not the pout)

Coffee in Shoreditch anyone?

  • I have the most amazing team of specialists supporting me and have been blown away by the standard of care I've recieved from the NHS
  • In these times of climate change there are still places you can retreat to celebrate Christmas in 2-degree greyness
  • Both Nikki's and my employer have been nothing short of amazing (shout out to the wonderful people at WSP and EDITD - more about them in a future post)
  • In these times of austerity you can pick up a christmas tree, tinsel and angel tree topper and get change from £3
    We went all out on the Xmas decorations
  • There is a place called Scotland where being ginger is socially acceptable :)
Bring on 2015!

Saturday, 20 December 2014

A Jedi's strength flows from the Force

Time for a break from the tennis analogies. Although I must confess that I didn't watch the original Star Wars movies until my mid-twenties when Nikki practically strapped me down and force fed me all three back to back because I kept blanking on her references.

In this story, Nikki is R2D2 (not Leia, ew), the tumour is perhaps the Death Star, and I guess I'm Luke Skywalker. Right now the Force is probably Temozolomide, the chemotherapy drug of choice for treating grade 4 brain tumours.   There are over 50 chemo drugs and many different ways to administer them - I'm lucky in that Temozolomide is a tablet that I take on a daily basis rather than having to be hooked up to an IV bag in hospital.

Take this, you must

I've taken three chemo tablets per day for the past six weeks, which will now reduce to one week per month for the next six months. There are few other tablet friends that I always take it along with the chemo, including three anti-nausea tablets, steroids, proton pump inhibitors and antibiotics. When I first kicked off chemo, I tried desperately (and I thought bravely) not to take the anti-nausea meds. As a result, I was almost reunited with the curry I'd just had for dinner and spent the next two days only being able to stomach Vegemite on toast.  Lesson learnt.    

Chemo is not without its Dark Side.  The tablets are "cytotoxic" which means I can't even touch them with my bare hands.  More frightening is the list of possible side effects: fatigue, nausea and vomiting, hair loss, increased risk of infection, anaemia, bruising and bleeding, mucositis, loss of appetite, memory and concentration loss, sleep problems, reduced libido and fertility, diarrhoea and constipation and depression.  This is what most people think of when they think of chemotherapy.   I almost (almost) feel guilty about how few of the side effects I have experienced, although it is hard at this stage to know what is a result of the radiotherapy vs. chemotherapy.

So what is chemo supposed to do?  It's designed to hunt down the fast replicating cancer cells and kill them. Some think that this is folly and that the cancer is a result of your immune system dropping the ball by failing to detect and destroy the cancer cells in the first place.  This has led to a whole host of alternative strategies that I will touch on in future posts including dietary changes, supplements and immunotherapies that are designed to support your immune system so it performs less like Jar Jar Binks and more like Han Solo.  

Tuesday, 16 December 2014

Baby orangutan

The radiotherapy has had some side effects but none that can't be managed. For the first two weeks I felt completely normal. I then noticed that I was cloudy again in the mind and I was becoming uncoordinated and weak on my left hand side. This was similar to how I felt in the weeks following the surgery and it was due to the radiotherapy causing some swelling in my brain. My oncologist restarted me on a low dosage of steroids which has since taken the edge off the side effects.

The only other side effect that I'm aware of is the loss of most of the hair on top of my head. I was doing an okay job on my own of losing my hair in recent years, I didn't need any support on that front! The hair loss is just where the radio beams enter and exit my head. When the hair loss first started I could pull out clumps of hair at a time and the shower drain would be full of ginger locks. It has slowed down now. This morning when I got up Nikki said my new hair style made me look like a baby orangutan. Thankfully it is winter and so I've been hiding it most days under a new flat cap that I got when Rosco Clark and I went shopping.   

A fistful of ginger on the first day of hair loss

Baby orangutan style?

The solution

Monday, 15 December 2014

Radiotherapy - one week to go!

It's two months to the day since my surgery.  I'll put up some detail about the recovery soon.  Today marked the end of the fifth week of my radiotherapy treatment, just one week to go now.  It has almost felt too easy actually.  I have had treatment every Monday to Friday in the basement at UCH.  I spend at most 30 minutes in the radiotherapy wing of the hospital, most of which is waiting time.  The radiographers take a few minutes to get me in the right position and lock my head down in my mask (see photos).  The mask makes sure that the radiation is only being delivered to the tumour site and not to the healthy surrounding brain tissue.  I’m keeping the mask when this is all over – teamed up with my scar it is perfect for Halloween! 
Making sure I'm in the perfect position
Mask on, locked down
An alarm then sounds and the radiographers flee the room at which point a scanner confirms that my head is in the right location.  If not then micro-adjustments are made to the scanner bed.  The radiotherapy machine then kicks in to gear and arcs over me, delivering a pain-free dose of radiation for about two minutes.  It is then all over for another of the 30 sessions that I will receive. 

Sunday, 14 December 2014

The surgery...

So we arrive by ambulance at UCH with me laughing hysterically while slowly losing the use of my left hand side.  On arrival I go straight in for scans and then the waiting game begins.  I was being looked after by the stroke team who had the unenviable task of letting me know that the good news was that I hadn’t had a stroke but that the scans had found a “mass” in my brain that was 3cm x 4cm x 2.5cm.  Bugger.  A couple of phone calls later and my parents were booked on flights.  I was transferred to a ward and started on a dose of steroids (not the muscle building kind, these ones just make your face swell and eat everything in sight, hence the new nickname 'Moonface#).  That was on Saturday 11th October and I soon found out that I would be operated on asap which turned out to be four days later. 

On the night before my surgery I was transferred to the National Neurological Hospital where I first met my anaesthetist and surgeon.  I was told to get a good night’s sleep but that was impossible as one of the other patients kept crying out “Oh bloody hell, help! Help me!”...until they wheeled him unwillingly into a room on his own :)  Up at 6am to have a wash with antiseptic soap in order to fight off infection during the operation.  I was taken in to the theatre by mid-morning having signed the waivers that the procedure could do anything from leave me brain dead to kill me outright.  After they had given me a ‘skull flap’ and accessed my brain they woke me up again and started asking me to do things in order to assess the effect of the surgery on my brain.  I spoke a lot about whisky and Real Tennis and at one point I tried to order a double macchiato because I was feeling so sleepy.  I remember thinking that I should really shut up as while I was boring them with stories about Real Tennis they were supposed to be concentrating on removing an angry badger from my brain.  Four hours later and it was all over.  George Samandouras and his team were able to successfully remove 90% of the tumour, the remaining 10% could not be removed safely as the tumour was growing out of, and not on, my brain so there was no clear line between it and the stuff that ideally I wanted to keep.  I decided I was going to retrain to 10% left behind on learning a foreign language or all of the obscure two letter Scrabble words.

Sunday, 7 December 2014

From the beginning...

Welcome to my blog about my journey with, and fight against, level four brain cancer (glioblastoma).  In this first post I will bring readers up to speed with what happened at the very beginning. 

It all began on a Friday night in October when my wife Nikki and I went out with our good mates for Ethiopian at the Queen of Sheeba in Archway (highly recommended).  When we were on our way to the restaurant I noticed that my laptop bag was bumping in to my leg.  I put it down to tiredness as I'd pushed it a little hard at the gym that morning.  At dinner I felt quite off and struggled to keep up with the conversation (some would say that's nothing new).  We caught the tube home and when we approached the house Nikki noticed that I was not walking straight.  I thought I just needed a good night's sleep.  Before going to sleep we Googled my symptoms.  I always joke that if you put any symptoms into Google the result is always cancer.  Not this time :)  It suggested I was iron and B12 deficient, so before going down for the night I took an iron/B12 tablet - take that cancer!

At 2.30am I got up to go to the bathroom and was very unsteady.  Nikki asked me to raise both of my arms over my head and I could only do so normally with my right arm.  At that point we decided to call a taxi and go to the Accident & Emergency unit of our local hospital.  At the check-in desk on arrival I couldn't give my details to the nurse without getting upset - I now realise this was a result of the swelling in my brain making me very emotional.  The doctors thought I might have had a stroke and organised to transfer me to the specialist stroke unit at University College Hospital (UCH).  While we were waiting for an ambulance to transport me, the effects of the swelling became more obvious.  I joked to Nikki that we should take an Instagram photo and give it the hashtag "#dying" - at which point I started laughing hysterically and couldn't stop for several minutes.  The theme continued when I was smiling and laughing while being wheeled in to the ambulance at 7am.  The ambos thought I'd lost my mind when I reacted like taking my blood sugar levels was as funny as Tony Abbott saying he is committed to addressing climate change.  In the next entry I will continue with what happened on arrival at UCH.