Brain Tumour Awareness Month: Meet Clara Darcy, co-writer and star of We Should Definitely Have More Dancing

A few years ago actress Clara Darcy was diagnosed with a life threatening brain tumour. Our 2022 world premiere We Should Definitely Have More Dancing, co-written by Clara and Ian Kershaw, is the unexpectedly joyful story of her cutting edge, life saving treatment and survival.

March is Brain Tumour Awareness Month, and with preparations well under way for We Should Definitely Have More Dancing, we sat down with Clara to chat about how her life has changed.

 

HOW DO YOU FEEL YOUR LIFE HAS CHANGED SINCE YOUR DIAGNOSIS AND TREATMENT?

 

I try to be a lot more philosophical about things, and not let the things I can’t change bother me. I don’t ‘sweat the small stuff’ now! I also think it’s made me more empathetic generally – I try to analyse every situation that someone’s in and say to myself ‘you have no idea what’s going on behind the scenes in that person’s life right now - much like most people didn’t know what was going on in my life at the time - so try to be kinder and more understanding’. It’s also made me more positive and grateful for everything I have - I feel like I’m the luckiest person on earth, to have survived what I did and to have had the help and support that I did. It has changed my perspective for the better on a lot of things really.

Physically I’ve gone through a lot of changes too. I often get very fatigued easily and most nights I need to sleep for an average of 10 hours now otherwise I’m very cranky and not very productive the following day! My sense of taste and smell fluctuate – sometimes they’re normal, sometimes I taste and smell nothing. I’m also rapidly losing my hearing in my left ear, in fact it’s virtually gone now. This is because the area within my head (where there was suspected remnants of tumour) that needed treating with incredibly high radiation levels was right next to my left cochlea, so unfortunately my left ear took a bit of a beating and received a huge blast of radiation.

The weirdest (and possibly most annoying!) thing I now regularly experience post-treatment is a hyper-reactive facial nerve. Basically the main nerve to the left side of my face runs right through an area within the brain that has been damaged by the tumour, so if anything touches that side of my face I feel a huge, short, sharp almost stabbing pain. I particularly notice if my hair brushes against it  - so I always make sure my hair is up now! And raindrops that fall on that side of my face can also be particularly painful!

There have also been symptoms that have come and gone in the two years since I finished treatment too – I experienced a real loss of balance for a couple of months last summer and literally kept on bumping into things and walking into walls! That was strange but also a bit fun! You’ve got to laugh at these things!

 

ARE THERE ANY DAY TO DAY THINGS THAT ARE DIFFERENT FOR YOU NOW?

 

Not really, I’m incredibly lucky in that sense. The only thing that’s changed that does impact me day to day is losing my hearing in my left ear – it just means I have to sit strategically in a certain place for people to be on my ‘good side’ now so I can hear them, or I have to walk on a certain side of someone. In crowded, busy, noisy places it can be so difficult to hear things being said to you. It’s made me realise how directional our hearing is.

 

WHAT MADE YOU WANT TO WRITE WE SHOULD DEFINITELY HAVE MORE DANCING?

 

Very early on, when I was still in hospital, lots of friends said to me ‘you should write about this’ but I think at that time I was just focused on trying to get well again. But I did mentally start to make some notes about observations and stuff because I thought they were interesting. And then when I’d finished treatment, Ian [Kershaw, co-writer] approached me and asked me if I’d be interested in writing something together about my experience. Part of me wanted to document it all so I wouldn’t forget all the little detail. But I also wanted to share my experience because being diagnosed with a brain tumour is such a rare occurrence and is not something that most people will ever experience, and to survive one is even more rare – I am one of the lucky ones, and I think I possibly wanted to impart my new found wisdom that life is short and we must all try to live to the very best of our potential.

But I’m not sure I would’ve either finished writing it or got through the possible trauma of reliving the experience whilst putting pen to paper if it weren’t for Ian. He has been my rock and my guiding light and has become the most wonderful friend. And I’ve found that writing about it has actually been an incredibly cathartic process.

 

THE SHOW IS DESCRIBED AS ‘FULL OF HEART, LOVE AND DANCING’. WHY DO YOU THINK IT IS SO IMPORTANT TO SHOW THE POSITIVES OF YOUR EXPERIENCE?

 

First and foremost because it was such a positive experience for me, in many respects: I had such a positive experience with the NHS – I was given exceptional care every step of the way; I had wonderfully supportive family and friends all around me who really rallied together in championing me to survive and get through it all; I was very fortunate to receive ground-breaking and game-changing treatment, both in my surgery and radiotherapy; and ultimately when you have such a close brush with death, you can’t help but come back from that and feel so grateful to still be alive - and you truly feel alive again – it’s almost like you’ve been given a second chance to right all the wrongs from your previous life. I feel a little bit like James Stewart in It’s a Wonderful Life! And therefore I want to share that joy and that lesson learned.

 

We Should Definitely Have More Dancing opens at the Coliseum on Friday 17 June before embarking on a national tour.  

Learn more about Brain Tumour Awareness Month with The Brain Tumour Chairty

Visit The Brain Tumour Charity website

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