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.
![](/images/common/WNF2Day2_-_Tom_1_1024x768.jpg)
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
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NF1 stem cell research study
Julieta is carrying out stem cell research to understand brain development in those with NF1
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Ava-Lily’s NF1 story
Ava-Lily is thriving at school despite various NF1 related difficulties - read her story
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Westminster Virtual Rare Disease Day 2022 Reception
NTUK joined the annual international event aimed at raising awareness & highlighting the needs of people with rare diseases
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Rare Disease Day 2022
Nerve Tumours UK joins events showcasing Rare Disease Day, hosted by the Genetic Alliance, on 28 February 2022
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Runderpants Winchester 2022
The Runderpants fun run makes a successful return to Winchester
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NF1 Research study with fly model
How can studying the brain of a fruit fly help with understanding of NF1?
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Stuart’s Schwannoma Story Part Two
Stuart's update takes us through the operation to remove the Schwannoma, recovery and getting back to marathon training.
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Sian & Connor’s story
Sian & Connor describe the invaluable support from NTUK during her pregnancy with baby Reuben
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Anita, aka Fat Lady Slim, is running the London Marathon for NTUK
Anita is fundraising on behalf of niece Sophie & great-niece Lexie who have NF2 by running the London Marathon
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