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
_370x280_800_600_s_c1.jpg)
The Scottish Parliament Rare Disease Day Online Reception 15/03/2023
NTUK attended the Scottish Parliament Rare Disease Day online reception
Read More
Support Derry’s and Dan’s Marathon Run for NTUK
Dan and Derry will be taking on the London Marathon in support of Nerve Tumours UK
Read More
Ragbir’s London Marathon
Ragbir is the Paediatric Lead for NF1 in Leeds and is running the London Marathon
Read More
Rare Disease Day 2023
NTUK joined in with Rare Disease Day 2023, helping raise awareness of how better coordination of care can improve lives.
Read More
Ashley’s NF1 story
Ashley loves red pandas, he's a 32 year old IT Specialist and has NF1. He is running a half marathon to raise NF awareness
Read More
Guy’s & St.Thomas’s Monthly Care Awards
NF paediatric nursing team, Mandy and Katrina win the Guy’s and St Thomas’ Hospital November CARE Award 2022
Read More
Cost of Living Crisis - Initiative
NTUK have co-signed an open letter to the Chancellor of the Exchequer on the cost of living
Read More
Living with NF1: psychological impact & experiences
Research: Understanding the reality of the NF1 journey from diagnosis to daily life, and the emotional impact it has
Read More