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 www.worldsultimate.net) 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.