Tom GK in Lockdown
22 May 2020
Hi, I'm Tom. I am a freelance journalist, comedian and proud custodian of literally dozens of non-cancerous tumours. I'm 33 and live in Brixton and, well, there's really very little more to say.
So now the cat is out of the bag. Now everyone knows what I've known ever since I was diagnosed with NF2 eight years ago: our doctors and nurses are AMAZING. It might have looked weird at the time but maybe I should have been spending my Thursday evenings clapping outside since my very first MRI scan. All by myself. Sorry about that, guys.
The lockdown has been a funny old thing, really. In some ways it has been frustrating (of course), as life has been paused and plans have been binned. I think for someone who can struggle not to have my life dictated by illness, and particularly treasures the times that going out is easy, this has been frustrating. Yet it's also been a brilliant opportunity to - cliche alert - really learn to love the small things in life. Whether it's actually speaking to that friend who you haven't spoken with since 2013, enjoying the slow arrival of spring or mastering the art of sourdough bread. These are things that transcend worries about jobs and money and careers and having the worst disease ever.
Having NF2 can be a lonely business and it can be hard to do what we really should be doing: living everyday for the moment.
I think it's something that the "Cancer People" (I'm determined to turn this into a rivalry) do better than us with their bucket lists and things, to be honest. But now there are 60-odd million people in Britain who have all learned how precious and fragile life is, all at the same time. Maybe now we can all learn to live for the present a little more. Going back to my "Cancer vs NF2" rivalry idea, I've even come up with a slogan: "Cancer might be annoying but NF2 really gets on your nerves". I think the whole idea really has promise.
Filter News
Lilly’s Story: Growing Up With NF1
In 2019, Lilly and her family featured in our ‘Shine a Light on Neurofibromatosis’ short film. Find out how she's getting on.
Read More
Improving the delivery of Genetic Results Survey
Survey: How did you receive your genetic results? Could we do it better?
Read More
Sonny’s NF1 story
Sonny, 3 years old, faces daily challenges but shows incredible strength, determination, and resilience. Read his story.
Read More
Great North Run 2026
Read more about this iconic half-marathon, and find out how to apply for 2027.
Read More
Manchester University NF1 MEK Inhibitors Research
Research: NF1 MEK Inhibitors and Learning
Read More
Toad Hall Nursery Fundraising Day
Toad Hall Nursery's annual fundraising day supported Nerve Tumours UK as 3 year old Lily has NF1.
Read More
Glasgow 2026 Everybody is born a Champion
This campaign features GB Para-Sprinter Thomas Young MBE, NTUK Patron, competing in the 2026 Commonwealth Games in Glasgow
Read More