Helpline 07939 046 030

Tom GK- Hearing Loss: The Musical

14 October 2019

Tom GK- Hearing Loss: The Musical

On Thursday 24th October Tom GK (NF2 patient) is bringing his fantastic comedy musical "Hearing Loss" to London. The review has already received praise from a number of critics e.g. 'Leaves you singing for joy' ★★★★ (FourthWall). 

Tickets are available on the following link and cost only £5, so make sure to secure your seat while you still can!

Tom also recently spoke to the Islington Gazette giving a greater insight into his musical career on top of dealing with NF2.

 

1) To start, could you tell me a little about how you found your way into music journalism?

When I was growing up I loved music, learned all the Boyzone dance moves and played in bands with embarrassing names like the Home Service and Miss Marple. But, let’s be frank, I was too rubbish. So I ended up standing outside of the Daily Telegraph until they gave in and let me have an internship. One 70 word demolition of a Keane album later, I became a regular review. I ended up interviewing Nick Cave and Jonny Marr and hanging out with Charlie form Busted for a whole night. Great guy, crazy days.  

 

2) But you realised you couldn’t carry on at a Foo Fighters gig in 2011 – is that correct? What did it feel like when you realised this dream career was going to be cut short? – Sorry, this is a really bleak question.

I was really lying to myself about my hearing for a long time. I was at this one gig though, and Dave Grohl kept talking and everyone around me was reacting and I didn’t have a clue what he was saying. I think he was talking about their next album but… you just really need to pick up on those details and it took all of my confidence away. Or it was the straw of a million moments like that made me run away from it. By the time I was diagnosed I’d already talked my way out of continuing in music journalism. I guess I thought I’d just wrecked my hearing by being stupid and going to too many gigs.  

 

3) When did you first get diagnosed with NF2? Could you tell me a bit about what it is, and how it affects you?

If you knew me and didn’t like me NF2 is the disease you’d probably pick off the shelf and send me in the post. It is a genetic disease which means I grow tumours around my body on my nerves. They really like to grow on your ear nerve and I have a couple of apricot/golf ball sized guys there. But I have dozens more and it can leave you blind, immobile and disfigured. Not even people who use wheelie suitcases on the tube deserve to have NF2.    

  

4) I read a piece you wrote in The Guardian where you say that when life becomes uncertain, and you’re struck down by a serious illness, people grasp every opportunity out there. Has your diagnosis had a positive impact, in some way…?

I wouldn’t be performing if it wasn’t for NF2 I don’t think. When certain doors close off, it can make the ones which are open become clearer and I love the face-to-face nature of comedy and the creativity. Journalists rarely get to see people sniggering at the half-formed jokes they’ve crept into an article. I also was quite happily living in my able-bodied world, ignorant of the challenges and huge achievement of people living with disabilities. I did a kids show about disability with my childhood best friend (also, by coincidence, blind) in Australia this year. Of all the things I’ve done, getting a 10 year-old kid to high five you because she’s got Down’s Syndrome and you’ve got NF2 and disabilities are cool – to have a position where you can change people’s perspectives, raise issues and celebrate diversity – well that’s amazing for me.   

Filter News

Filter by Date
Category
Reset

Luke’s Story

Read More

Charlotte’s Story

Read More

Eden P Study

Currently pregnant? Please consider taking part in the Eden P study

Read More

Jen’s NF1 story

Jen praises the great support received since her NF1 diagnosis, allowing her to thrive & achieve a 1st class degree.

Read More

Eden P for healthcare professionals

Healthcare professionals, who provide support to expectant parents with NF1 are invited to take part in the Eden P study

Read More

Nicole’s story

Nicole has NF2, she describes the preparations and the absolute joyful experience of the birth of her son Lewis

Read More

Johnathan’s story

Johnathon's family are spreading awareness of the importance of attending health checks and advocating for vulnerable people

Read More

CAR Research - exploring family planning decisions

Research Advisors required to help explore what influences decisions about having children and what support would be helpful

Read More

Corporate Fundraising 2024

Find out some of the different ways your company can support Nerve Tumours UK

Read More

Masterclasses in NF: Constitutional Mismatch Repair Deficiency Syndrome as Differential Diagnosis to NF1/Legius Syndrome - Prof. Dr. Katharina Wimmer

Constitutional Mismatch Repair Deficiency Syndrome as Differential Diagnosis to NF1/Legius Syndrome

Prof. Dr. Katharina Wimmer, Medical University of Innsbruck

Masterclasses in NF: Rare NF1-Associated Tumors in Adults - Eric Legius & Prof. Ellen Denayer

Masterclasses in NF: Rare NF1-Associated Tumors in Adults

Eric Legius, MD, PhD, University Hospital Leuven

Prof. Ellen Denayer, University Hospital Leuven

Masterclasses in NF: Optimising Hearing Outcomes in NF2-Related Schwannomatosis - Simon Freeman

Masterclasses in NF: Optimising Hearing Outcomes in NF2-Related Schwannomatosis

Simon Freeman, MPhil FRCS, Manchester Royal Infirmary and Salford Royal Hospital

Masterclasses in NF: NF1 Dermatological Manifestations - Pierre Wolkenstein, Laura Fertitta & Sirkku Peltonen

Masterclasses in NF: NF1 Dermatological Manifestations

Pierre Wolkenstein, MD, PhD, Hopital Henri-Mondor, Paris, France

Laura Fertitta, MD, Hôpital Universitaire Henri Mondor

Sirkku Peltonen, MD, PhD, University of Gothenberg, Sweden

Masterclasses in NF: Breast Cancer in NF1 - Gareth Evans

Masterclasses in NF: Breast Cancer in NF1

Gareth Evans, MD, University of Manchester, UK

Masterclasses in NF: Pain in Non-NF2-Related Schwannomatosis - David Pang

Masterclasses in NF: Pain in Non-NF2-Related Schwannomatosis

David Pang, MD, ChB. Guys and St Thomas' Hospital NHS Trust, London

Masterclasses in NF: Distinguishing Non-NF2-Related from NF2-Related Schwannomatosis - Clinical and Genetic Approaches - Said Farschtschi

Masterclasses in NF: Distinguishing Non-NF2-Related from NF2-Related Schwannomatosis - Clinical and Genetic Approaches

Said Farschtschi, MD, University Medical Center, Hamburg-Eppendorf, Germany

Masterclasses in NF: NF1 Pre-Implantation Genetic Diagnosis - Eric Legius & Prof. Ellen Denayer

Masterclasses in NF: NF1 Pre-Implantation Genetic Diagnosis

Eric Legius, MD, PHD, University Hospital of Leuven, Belgium

Prof. Ellen Denayer, University Hospital of Leuven, Belgium

NF2 Working Together: from a tentative diagnosis and beyond

Understanding the impact that a tentative diagnosis has on a parent. Information and access to the existing NTUK and Specialist Nerve Tumours medical and non medical care network.

NF1 Working Together Part 2: from a tentative diagnosis and beyond

Understanding the impact that a tentative diagnosis has on a parent. Information and access to the existing NTUK and Specialist Nerve Tumours medical and non medical care network.

NF1 Working Together Part 1: from a tentative diagnosis and beyond

Understanding  the impact that a tentative diagnosis has on a parent. Information and access to the existing NTUK and Specialist Nerve Tumours medical and non medical care network.

Masterclasses in NF: Surgery in NF2 - Michel Kalamarides & Andrew King

Masterclasses in NF: Surgery in NF2

Michel Kalamarides, MD, PhD, Hôpital Pitié-Salpêtrière, Paris, France

Prof Andrew King, MBBS FRCS FRCS(SN), Salford Royal Hospital, Manchester, United Kingdom. Member of the MAB of Nerve Tumours UK

Masterclasses in NF: Cognition and Behaviour in NF1: Phenotype and Treatment Approaches - Shruti Garg, Andre Rietman

Masterclasses in NF: Cognition and Behaviour in NF1: Phenotype and Treatment Approaches

Dr Shruti Garg, MBBS, MRCPsych, MMedSci, PhD, Royal Manchester Children’s Hospital, United Kingdom. Member of the MAB of Nerve Tumours UK

Andre Rietman, PhD, Erasmus University Medical Center, Rotterdam, Netherlands

Masterclasses in NF: Emotional Challenges in NF1, NF2 and Schwannomatosis - Susie Henley, Thomas Pletschko & Verena Rosenmayr

Masterclasses in NF: Emotional Challenges in NF1, NF2 and Schwannomatosis

Susie Henley, DClinPsy, PhD, Guy’s and St Thomas’ NHS Foundation Trust, London UK

Thomas Pletschko, PhD, Medical University of Vienna, Austria

Verena Rosenmayr, Clinical Psychologist, Medical University of Vienna, Austria

Masterclasses in NF: NF1 Pediatric Management - Rianne Oostenbrink

Masterclasses in NF: NF1 Pediatric Management

Rianne Oostenbrink, MD, PhD, Erasmus University Medical Center, Rotterdam, Netherlands

Masterclasses in NF: Associated Glioma in Children - the Optic Pathway and Beyond - Amedeo Azizi

Masterclasses in NF: Associated Glioma in Children - the Optic Pathway and Beyond

Amedeo Azizi, MD, PhD, Head of the Paediatric Neurofibromatosis Program and Paediatric Neuro-Oncology Program, Medical University of Vienna, Austria

Masterclasses in NF: NF1 Orthopedic Manifestations - Eric Legius and Christophe Glorion

Masterclasses in NF: NF1 Orthopedic Manifestations

Eric Legius, MD, PhD. Head of Clinical Genetics Department of the University Hospital Leuven, Belgium

Christophe Glorion, MD, PhD, Department of Paediatric Orthopedic and Traumatologic Surgery, Hopital Necker-Enfants Malades, Paris, France. 

Masterclasses in NF: NF1 Malignant Peripheral Nerve Sheath Tumours - Rosalie Ferner and Viktor-Felix Mautner

Masterclasses in NF: NF1 Malignant Peripheral Nerve Sheath Tumours

Prof Rosalie Ferner, Consultant Neurologist and Lead Clinician for Neurofibromatosis, Guy's and St. Thomas' NHS Foundation Trust, London. Member of the MAB of Nerve Tumours UK and Trustee of Nerve Tumours UK

Viktor-Felix Mautner, MD, PhD. University Medical Centre in Hamburg-Eppendorf, Germany. Head of NF Outpatient Department

Masterclasses in NF - Neurofibromatosis Type 1: Cutaneous Neurofibromas - Pierre Wolkenstein and Sirkku Peltonen

Masterclasses in NF - Neurofibromatosis Type 1: Cutaneous Neurofibromas

Pierre Wolkenstein, MD, PhD. Hopital Henri-Mondor, Paris, France. Head of the Department of Dermatology

Sirkku Peltonen MD, PhD. University of Gothenberg, Sweden. Professor of Dermatology

INFER (International NF Educational Resources) is a series of online educational lectures for medical professionals by leading neurofibromatosis experts. The Masterclasses take place online approximately once a month, each on a different topic, and include real-time interaction between the expert presenter and the participants. The presentations are conducted in English, with real-time audio interpretation available in 6 additional languages: French, German, Italian, Portuguese, Russian, and Spanish. A recording of each INFER masterclass is then be made available online in each language for those who could not attend an event. INFER is an initiative of Children’s Tumor Foundation Europe, supported by an educational grant from AstraZeneca. https://ctfeurope.org/research/masterclasses-in-nf

BPNA Keynote Lecture - Prof Rosalie Ferner - Neurofibromatosis 1 in the 21st Century

‘Neurofibromatosis 1 in the 21st Century’

Keynote Lecture at the 48th British Paediatric Neurology Association Annual Scientific Meeting on 21st January 2022

Prof Rosalie Ferner, Consultant Neurologist and Lead Clinician for Neurofibromatosis, Guy's and St. Thomas' NHS Foundation Trust, London. Member of the MAB of Nerve Tumours UK and Trustee of Nerve Tumours UK