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
_800_600_s_c1.jpg)
World NF Awareness Month 2025: In Review
A look back at some of the highlights of World NF Awareness Month, May 2025.
Read More_1_800_600_s_c1.jpg)
Emily Owen: World NF2 Day
Our charity Ambassador offers her thoughts and guidance on NF2 day
Read More
Shine A Light on NF May 2025
The Shine A Light on NF 2025 awareness campaign had 176 buildings around the UK & the Republic of Ireland lit up blue!
Read More_800_600_s_c1.jpg)
Mohamed’s NF Story
Mohamed opens up about his NF journey and why he's now thriving after being diagnosed.
Read More
Do charity ads get on your nerves?
The 4th NTUK and RBH digital media awareness campaign features a cheeky attention grabbing advert
Read More
Laura’s NF1 Awareness Story
Laura shares her NF1 story and tells us how she is raising awareness for World NF Awareness Month
Read More_1_800_600_s_c1.jpg)
Living with Neurofibromatosis Type 1: A Journey of Resilience, Transformation, and Impact
Our new charity ambassador, Amit Ghose, shares his inspirational story.
Read More_1_800_600_s_c1.jpg)
NF2 Quality of Life Questionnaire
The Massachusetts General Hospital NF research team would like your help to test a new quality of life questionnaire
Read More