Meet Grace Latter, our High Profile Influencer 

“I’d only become aware of it because of its attached cysts that had inflated and been ‘bumping’ against bits of my grey matter, which is what caused the physical symptoms — these being loss of motor skills (my right hand suddenly became an awkward accessory rather than a functioning limb), twitches, loss of balance/perspective (I walked into a lot of walls and fell into roads off kerbs!)… and eventually a worryingly half-slumped face.  

“I went in for an emergency craniotomy, finally, after having to push my way into all the right rooms and machines and experts’ offices for so long — it didn’t surprise me when I found out that people with brain tumours will often visit a GP three times before receiving a diagnosis, or even a referral for the right test. Even in my case, my first (of over a hundred now, I expect) brain MRI was a complete twist of fate-slash-fluke — a neurologist decided spontaneously to book me one after he’d checked me over and decided my problems were definitely down to my contraceptive pill. More weeks of waiting followed, but I didn’t mind, because by that point it had already been months since my university GP surgery had turned me away, blaming it on stress and/or too many nights out…

“Once I’d been scanned, however, it was all systems go. I was in Hurstwood Park Neurological Centre in Haywards Heath (now an entirely repurposed building, although I still like to visit and sit in the beautiful gardens when an anniversary rolls round!) within 10 days, then back home with a swollen face, fully functioning right hand and 20-something staples in my head not long after. I returned for my histology report sometime later — I can’t say exactly when, it was all a blur! I’m sure you understand…  

“This day was also when I learned that one side of the head controls the opposite side of the body — hence, my symptoms had all been happening on my right! It’s amazing what you learn along the way. In fact, every time I see my hero consultant for my annual MRI and check-in meeting, he drops a minor truth bomb into the chat very casually — for example, I didn’t know for years that I had two screws in my head, or what cerebral spinal fluid was (until it was leaking out of my skull and into a saggy skin balloon on my forehead!). Mr Bucur also told me not too long ago that he thinks there must be less than a hundred people in the world with a case like mine. I felt strangely special, hearing that. But also quite lonely.  

“Yes, I have often felt lonesome in my illness. I still do all these years later. I am fortunate to be surrounded by wonderfully supportive humans, all with great listening ears, warm hugging arms and big kind hearts — but none of them have been through it. And thank goodness, of course! But also, how can they really understand? I’d say my parents are closer than anyone to seeing and feeling exactly what I have, being at my side (literally, propping me up) through it all over and over again; sitting with me in hospital during treatments, coming along to all the appointments, and aiding me in my many periods of recovery. I say ‘many periods’ because this first episode wasn’t the last; I had more surgery in 2015 followed by intense radiotherapy at The Royal Marsden, and then a facial reconstruction procedure in 2018. To this day I see three or four different specialists regularly to make sure everything is still stable. *touches wood*  

“I could confide in my fellow Ambassadors and consult with the online support group, I even became friendly with charity reps along the way including Piers, Abi, Claire, Jen, Emma, Carol — and so many more I couldn’t possibly reel off the entire list! 

“I will say though, I find it truly inspiring and extra special that many of the team members at this particular charity have a lived experience of a brain tumour — and not always necessarily their own. Many have been through the experience with a relative or friend and felt the need to take action and make change for more people afflicted. I know I speak for most if not all the community when I say, we all appreciate that so much.  

“One of the biggest struggles for me on this tremendous and tumultuous journey has been loss. I’ve had to say goodbye to a few friends I met along the way. Graham Wood, who first waved at me from his bed in the ITU at Hurstwood Park and whose funeral I spoke at nine years later. Emma Warden, who found me in the Facebook support group after I posted about my (which turned out to be OUR) local M&S foodhall collecting money for the charity, and who insisted on having the ‘Friends’ theme song played at her funeral. Jordan Toms, a fellow Young Ambassador and passionate speaker whose memorial I attended virtually from my phone, crying into my cup at a cafe in Brighton.