…It takes a hell of a lot of self control to not rip your face off while your nerves are trying to work out how they’re going to repair themselves. I know I’ve mentioned it in the past – it’s certainly not my first adventure with damaged nerves, but my goodness, the itchiness is like nothing else.
Itching it won’t help – there’s nothing to itch, and I wouldn’t feel it anyway, I’m all numb. So all I can do is try to relax through it, close my eye, lie down, concentrate on my breath and wait for the immediacy to pass.
It never stops, but it does vary in intensity. It goes all the way from the top of my head to the bottom of the right had side of my face.
From memory, nerves take a couple of years to recover. I know there are some spots of my face that I’ll never get feeling back in – for example, the nerves that were severed after my first surgery in 2018 (like my old friend the trigeminal nerve). To anyone who thought I was brave getting my nose pierced at the end of 2019, let’s just dispel that myth by smugly announcing that I couldn’t feel it. If my MRIs ever become less frequent, I’ll be getting it redone.
For now it’s just a watch-and-wait to see what feeling will come back this time around. The nerve pain can be anything from exploding fireworks across my face, to sharp stabbing tingly electric pain. It must know I’m writing about it because it currently feels like I’ve got very itchy spiders crawling over my forehead. It’s pretty wild.
I’ve had a busy summer exercising my freedom amidst what is still (though I think most of England has forgotten) a pandemic. I’ve been flitting about visiting friends outside of London. It’s been lovely, though pretty exhausting overall, and at times the pain has been almost unbearable, perhaps due to the lack of sleep caused by foreign beds. After a few days back home (and the return to my carefully constructed pillow fort that enables me to sleep upright), the pain gets manageable again. I suspect the toll of talking and smiling is significant – using the muscles on the right side of my face too much hurts. And I’m a really smiley person.
But the highlight of my summer was when I ran off to the circus. My friend Rosa and I hopped on a train and made our way North, to a little coastal town called Cleethorpes, which I was later told is the home of British fish and chips. If I’d known earlier, I may have ordered that for dinner while I was there, though i must say the sausages and mash I had were delish.
The occasion: our friend India was flying trapeze in the circus.
We stayed in her caravan onsite for the night. Watching her fly was more incredible than i could have imagined. Seeing her do what she loved, flying through the air with her friends… It’s harder for me to scream and whoop and cheer these days with a mouth that doesn’t seal off from my face properly, but my goodness, I did my very best.
You see, India is also in the cancery world. When she was diagnosed a few years ago, she wondered if she would ever be able to fly again. I’ve said it before and I’ll say it again: cancer certainly has a knack of identifying whatever is closest to your identity, and trying to take it away. A huge incision all the way down her stomach, and the removal of a huge tumour left her unable to even hang from a bar. But time, healing, top surgical procedures, hard work, and a hell of a lot of determination later, she built up and built up and built up and finally got herself back there.
In late 2019, just as I was heading off to Australia, she was off to France to join the circus and fly with them for a magical few months. I could only watch via short clips through my phone from the other side of the world. At the same time Rosa (the third of our little cancery gang) was performing her own fantastic theatre show Madame Ovary around the country. And I was in Australia playing gigs with my parent’s band. The three of us performers doing what we loved most.
Then, as the story goes, the world shifted somewhat, and we all stayed indoors, and all performance was cancelled.
India couldn’t fly.
All of Rosa’s shows were cancelled.
I was trapped in Australia.
We were all grounded on our own ways.
Voice notes with these two kept me connected to life in the UK. Then when I returned, voice noting them would keep me company on walks home from the hospital as we talked our way through how we would handle my rediagnosis. I had a routine of immediately pulling out my phone after an appointment and sending a voice note to India, Rosa, and my other friend, Sarah.
Sarah, the one who ultimately pulled me back to London from Australia with the news: ‘I’ve got three tumours in my brain. I don’t think I have long.’ I’d been planning on coming back, restrictions on travel for those returning home to the UK had loosened a bit by late 2020, but I was waiting for something to tip the scales.
‘I’m not telling you to come home,’ she’d said, ‘but come home’.
That did it. I booked a flight within days for the end of the month. That was almost exactly a year ago.
When I was rediagnosed within days of returning, she was the first to tell me that she’d probably saved my life. I think it’s likely she was correct in that assertion. I couldn’t save hers, however, she died back in February. I still haven’t stopped wanting to send her a message every day. I still don’t know how to get through the days without hearing her voice. But we got some incredible extra time together in the window between me coming back and her going back to Yorkshire to die. I believe she was buried wearing the ‘sassy’ necklace I gave her.
But I digress.
We may have been grounded, but we weren’t idle. India would send me photos of her doing handstands and hanging from an aerial hoop in her back yard. Then, eventually, she and her friends put a rig up in her grandparents’ garden.
Rosa and I kept working diligently on our scripts, novels, poems, plays, short stories, music, discussing our visions and putting in the time and effort.
Then, one day I got the message from India, the excitement bubbling up in her voice – I’m going to fly again. I’m going back to the circus.
Rosa also got to do one last performance (for now, anyway) of her show, which included a brilliant livestream. My parents watched it from Australia, the time difference making it 11pm there. We watched it together from our separate ends of the earth. Mum said Madame Ovary was better than Hamilton.
Being with Rosa and seeing India fly that night stood for so much. That we can still chase dreams despite pandemics/diagnoses. That there is hope. That we will all fly again.
India will never stop needing treatment for her cancer. It’s incurable. But she is currently on a brilliant regime that gives her 5 good weeks out of every 6. Long may it last. So during her months in the circus, she would have to miss a few shows every 5 weeks to zip back to London, get some chemo pumped into her, rest, then get back to it.
It just goes to show what you can achieve if you really, really want to.
Though this is not inspiration porn, that ‘omg so inspiring, iF sHe CaN dO iT, wHaT’s YoUr ExCuSe’ rubbish. She has incredible friends and family and support, the chemo regime of freedom, a great medical team, etc. She didn’t do this on sheer willpower. But I do think the stubborn drive to do something you love goes a long way.
After the show, we sat in her caravan along with the rest of her troupe (who are also her housemates/good friends), and India served us all some dinner she’d rustled up after the show, and we all drank wine and chatted.
My heart was full.
These are the moments in life that make it all worth it. I wish none of us had to go through any of this. Rosa is hopefully home free – the longer she keeps ticking off years without a rediagnosis, the better it looks. But India and I are still in it, and the future does hang over us. For her, when will the current treatment stop working? For me, will this next round of scans show it’s too late? (I’ve got my MRI and PET Scan over the next few weeks to follow up again on that ominous scan from a couple of months ago).
But in moments when you’re surrounded by friends in the cutest caravan in a tiny coastal town drinking wine, things are ok. In that moment, I think I’d say, things a pretty damn good.
I feel Sarah in those moments too. She promised she’d haunt me and every time something good happens to me or anyone in our little group, I like to think she’s had a hand in it.
I’ve got a few exciting projects in the works, but in case anyone is interested, I’ve started writing a monthly column for a digital wellness platform. They let me write about whatever I want and it is bloody fun. My first column was about toxic positivity, which is something I know a lot about.
I’ll leave you all with some photos of our weekend of dreams. Don’t forget to go and do something you love, even if it’s tiny. These moments are what life is about.