Everything and Nothing

I thought the media momentum might continue after my London Marathon triumph, but it completely disappeared.  I suppose that’s the nature of the news cycle – on to the next ‘inspirational’ story to slot in between reports from war zones and escalating political disagreement of one kind or another.  I feared I’d miss the attention as the overwhelming flood of plaudits receded but I felt a bit relieved.  Maybe this is the sweet spot of notoriety – making an impact not just on those I know but also complete strangers, whilst not enough of one to be noticed in the street.  I can feel good about reaching a wide audience but still not worry about being on show whenever I go out or worry about journalists examining the contents of my bins.

Having considered myself to be Schrödinger’s cancer patient (alive and well yet very much dying) maybe I’m also his celebrity – fairly well known but pretty much anonymous.  That’s fine by me.  Making any kind of media appearances was inconceivable pre-diagnosis and look at me now – with an overflowing page of media links!  In the days and weeks post-marathon, I settled back into the life of a slowly recovering cancer patient, only capable of a fraction of what a normal person might get through in a day.

Chemo side effects still receding, I tend to measure my recovery in naps.  From 3 or more on the worst days to none at all, this is a good indication of energy levels and slowly but surely I started getting through more and more of each day.  I started taking on more trombone gigs and rehearsals without the need to write off the day after.  Perhaps things were improving – the scans and blood tests that gradually happened would tell me more.

After a period of quiet on the political front, I also received a different kind of gig booking – one shrouded in secrecy.  I couldn’t tell anyone in advance for security reasons but I was asked to rekindle the magic of my Labour conference speech from last October and this time, Wes Streeting (my local MP) was opening for me.  I set about condensing the hard hitting bits of my health story into a two minute speech.  This being me, I just about got it down to two and a half.

When the day arrived, I presented myself at a film studio in Purfleet not sure what to expect.  After a little while talking to the Labour aides and other non-politicians due to speak, it was rehearsal time and, once I discovered my words were on autocue and I didn’t have to look down at the backup notes, it seemed to go ok.  I saw that there were some quite familiar faces present in the form of a few front bench Labour politicians, who delivered their words most slickly and professionally.  Once back stage, I was a little confused at being denied entry to the green room I’d been initially sent to.  When I was eventually granted access, I could see why because the entire shadow cabinet were milling around.  I was a bit star struck and didn’t really know where to turn, but thankfully Wes welcomed me and gave me the first indication that my speech might have had a bit of an impact because he observed that Rachel Reeves, the Shadow Chancellor, had (apparently very unusually) had shed a tear.

This isn’t the first time my words have moved people to tears, but sometimes I forget how much emotional weight my story carries.  Maybe it’s surprise at my lack of anger about my time spent on waiting lists.  Maybe it’s that, although this blog is mostly self-centred, my capacity to hope had drifted from the personal to the societal and that, in the face of profound personal tragedy, I’m thinking of others.  Just like when I’m called inspirational or brave, I don’t really consider the shifting priority of my hope for the future to be anything special at all.  Isn’t it natural to focus your attention to the community you’ll leave behind when made aware your contribution to it will soon come to an end?  If you see an almost unique chance to help others, simply by telling a story, wouldn’t everyone take it?  People often express gratitude because I’ve chosen to dedicate my time to awareness raising and public service announcements, but this really is what I want – no – have to do.

Whatever the reasoning, the reaction in the room when showtime came was quite something.  There was a huge standing ovation that carried me back to my seat in the audience and left me shaking my head in disbelief as the applause continued for what seemed the longest time.  I felt for the next speaker (the parliamentary candidate for Dover) who had to stand at the lectern waiting for the sound of clapping to subside.  He acknowledged this with a simple ‘wow’.  When the main man, Keir Starmer, took to the stage, I was acknowledged again with some kind words and more applause.  When he took questions at the end, reporters used my story to frame their questions.  Chris Mason of the BBC spoke to me afterwards and perhaps provided the biggest accolade of the day.  He considered it quite unusual that the press pack had stopped live-tweeting and put their phones down to give me their undivided attention.  I’ll definitely take that!  And what really sweetened the aftermath were more kind words from a load of political heavyweights including a big hug from Angela Rainer and an invite to Downing Street should she find herself in office.  I hope Angela remembers this conversation because I’d quite like to take up the offer!

By the time I got home, twitter had exploded.  I joined fairly recently in order to find out what people were saying about me and that afternoon, they were saying a lot due to a blogger called Farrukh posting the video of my speech.  It’s now received about a million views and attracted so many positive comments and well wishes that I’m surprised my head still fits through doors.  From a handful of ‘followers’ I seem to attracted two and a half thousand overnight.  That’s overwhelming but also adds a bit of pressure to keep tweeting, given people have now recommended following me.  It’s a good outlet for political opinions, which I’ve never really discussed much with close friends.  It’s also a platform that lends it to impassioned arguments and I’ve slipped into a couple of unfortunate exchanges with people who hold opposing views.  I’m sure seasoned tweeters would roll their eyes and tell me not to bother, but hey I’m new to all this.

I’m also new to being a singer-songwriter but that hasn’t stopped me having a go at it.  Over the past 18 months or so, I’ve written about ten songs, mostly sensitive piano ballads about living and dying, plus a few silly songs because (if it’s not clear already) dark humour is one of my primary coping mechanisms.  Finding a producer for my cancer concept album in the form of Steve Pretty (who’s podcast I’ve been on) and pencilling in a date helped me turn a load of half finished experiments into legitimate outpourings of musical and lyrical expression.  Despite my puny piano skills, I found a way to fill in some functional harmony whilst letting words (literally) do the talking.

I felt just about ready to record by the time I got to the living room recording studio five days after coming down from the Labour speech.  People had remarked upon my lack of nerves getting up and speaking to the nation’s media and assembled dignitaries.  But this recording setup really got my heart beating and palms sweating.  For a start, this wasn’t any old living room and the piano was a thing of beauty – a Steinway grand that made even my simple C Major block chords sing out in the most beautiful way.  The power of this majestic instrument flowed through my fingers but in an almost intimidating way.  It felt like I didn’t deserve to lay my hands on these perfectly crafted keys.  Then I took in the video setup, courtesy of Cath, who’s been documenting my journey over the past year or so.  She’d even brought a friend along and between them they had four cameras, two of which were on train tracks, in addition to plenty of bright lights.  Add to that Kim the photographer, who had taken some great photos of me at the London Marathon and a professional recording setup had escalated into a full on multimedia extravaganza focussed right on me.

I didn’t consciously feel too on edge but the pressure to perform for all these people who’d gone to so much trouble for me was quite overwhelming.  I’d imagined being able to record some of the harder songs in chunks and have them stitched together through the magic of the cross-fade.  But when you’re adding 4 streams of video to the mix, that makes for an incredibly messy and time consuming edit, so the onus was on me to produce complete and usable takes.  It took a couple of hours for me to settle into this.  Initially, it seemed we wouldn’t get through all ten songs, but as the day wore on, I got to work and I’m must say I’m looking forward to the end result.

The album will be launched as part of my two year survival/Biscuit Day celebration concert on Saturday 26th October.  I’d love to say where at this point but I’ve been let down by the original venue – Jamboree in Kings Cross.  They have gone back on their word and ditched my booking in favour of a better offer, so I will be boycotting them from now on.  That isn’t the way you treat anyone you’re doing business with, let alone a terminal cancer patient who’s used this day as an optimistic focus for getting through the worst of times.  If anyone can think of a nice room somewhere in London with a decent piano, I’d love to know.

Anyway…breathe….In between all the music festivals, multimedia recordings, political speeches and sitting for a portrait (the last of these is unbelievable, yet true!) I’ve gotten back into running.  This has required some will power as it takes weeks for the effort to feel easy again, but I’ve just about managed to enjoy running again and have been seen fairly regularly traipsing through the squelchy grasslands of my local forest.  I’ve also been walking around it too.  This is because I’ve set myself on another challenge and it’s a biggie.  For a long time, I’ve wanted to walk the length of the mainland UK from John O’Groats to Land’s End.  Faced with a probable three months before the next scan, until as recently as this week, now seemed like the time and it almost was, with this epic two month/twenty mile a day adventure due to start this coming Saturday.  But about those scans…

It’s good news.  Very good news.  Both CT and PET scans have shown no evidence of the tumours in my lungs and lymph nodes, leaving just the lump on my liver which has halved in size to about 2.5cm.  Even according to my oncologist, this represents a spectacular response to chemo.  The shrinking of my one remaining cancer has opened the door to a procedure called radio frequency ablation, which involves sticking needles into me, heating them up and burning off the tumour.  There was a chance this could have happened earlier this week, but this is on the NHS and I’m still waiting for a scan to see if this minor surgery is viable.  So I guess I’ll just have to put my trip on hold and wait.  I’d quite like to get going – Scottish midge season is fast approaching and I’ve been strongly advised to avoid it.  But this procedure could give me the equivalent of three months of chemo or even make me cancer free for a bit.  Even if that doesn’t last long (it won’t – stage 4 bowel cancer will always come back) and having ‘no evidence of disease’ doesn’t really mean anything useful in my case, I’d still really like to say I don’t have cancer and ring the bell I’d accepted as being out of reach.

So whilst I pragmatically adjust to sticking around for a few weeks, I guess I’ll continue ticking along with the running and music.  If I’d turned anything down for June, there’s a chance I’ll be able to make it now.  Please remind me!  Also tell me If I automatically state that I have cancer in three places because it’s now one and even the most positive news takes a while to sink in and adjust to.  And I suppose I should settle into this window of wellness as it opens ever wider.  It’s much better than a prolonged period of illness, that’s for sure.