Helpline 07939 046 030

Jonny’s Story

08 July 2019

Jonny's Story

Hello my name is Jonny. I am 20 years old and this is my experience with Cancer.

The past year has been a strange one: over the course of 365 days I've gone from a college student in Glasgow to a cancer patient with a 2 year long recovery phase. I'm going to try to tell the story of what happened over the past year by talking about 5 concerts, as each show happened alongside the progression of the cancer, from slight discomfort to 10 hour operations, and everything in-between.

At the beginning of 2018 I had started attending college in Glasgow to study making and repairing stringed instruments (guitars, violins, basses and such). Throughout school I struggled with exams but I found I had a knack for playing bass and making things. A led to B and before I knew it I was at Z making guitars for customers and attending 1 of 3 places in the UK that taught guitar building as a subject. So as you can imagine I was pretty pleased; I was happy, college was living up to expectations, I had a plan and I was healthy. I was fully aware of what to expect with NF but never anticipated what was waiting for me just around the corner. With everything going well, I decided to treat myself to a concert and I went to see KNOWER with an old school friend at a small venue in central Glasgow. Hands down it was the best show I have ever been to. Fast forward several months, I’ve finished the first year of College and I'm working at a small local cafe over the summer where my parents live. One day I noticed a slight weakness in my index finger on my left hand. I thought nothing of it until a few days later when I realised it was becoming numb. Over the course of a week it worsened. I went to see the local GP, who made an appointment for me to have an ultrasound scan of my upper arm.

We now arrive at part 2. The first scan had concluded that I had a tumour on my median nerve, which was the cause of the loss of function and feeling. What followed were more scans, MRI, and a biopsy but despite all this I (foolishly) went back to the college even though by this time I was effectively one handed and in a great deal of pain. After about 5 weeks of College I was headed to London to see funk legends Vulfpeck, a plan that had been organised earlier that summer. Earlier that day I met with a doctor to tell me the results of the biopsy, it was CANCER! - more specifically a “nerve sheath Sarcoma”. I can remember that on that day I was already feeling sick before being told the news, so I barely registered what it actually meant (maybe also because I had just started taking Gabapentin to help keep the nerve pain down and was feeling the side effects). I remember while travelling down south on the train thinking about what was happening, I had Cancer, I had a 8-10 hour operation around the corner, radiotherapy, more operations later on, 2 years before I would get the use back into my hand , even the possibility of amputation, the possibility of never being able to go back to what I love doing and a chance the treatment wouldn't work ultimately resulting in me losing my membership of the “being alive” club. So with all of that in mind after the concert I contacted the college the following weekend to withdraw from the course.

Not long after I was back in Glasgow for yet another scan (PET/CT) the same week as I was seeing David Byrne (former frontman and singer of Talking Heads). By this time I had accepted the reality of the situation, I had a date for the surgery and I had a better understanding of what was going on; surgery in November, radiotherapy in early 2019 and more surgery later in the year. And I was aware that things may not work out well.

Surgery vol. 1. This was it, my first time having surgery. It would be 10 hours long, with a week of inpatient recovery in the HDU (high dependency unit). I remember waiting in the anaesthetic room, lying on a bed feeling a bit nervous. Then suddenly, without warning, I was in recovery feeling groggy, not being able to feel anything much else, and having no perception of time passing. 10 minutes or an hour, it all felt the same to me. During the first 3 days of surgical recovery I was struggling to hold a conversation and walking felt like an insurmountable challenge. By day 4 I had started talking, walking around, drinking coffee and watching Hot Fuzz while waiting for visiting hours in the ward, although most things were still challenging nonetheless.

By day 5 I was well enough to be allowed out for lunch (I had pizza) and after 6 long days in hospital I was released into the wild.

We now arrive at the Beatson Centre in Glasgow, in February, for 6 weeks of Radiotherapy. I had a mould made several weeks before, to keep me still for the therapy. One of my most prominent memories from the experience is seeing myself held firmly in place looking straight up in the reflection of the machine, with the mould almost entirely covering my chest and face. The Celtic Connections festival was coming to an end and my dad had got tickets to see Bokanté, a world music group featuring the bass player from Snarky Puppy, another favourite band that I’ve also had the pleasure of seeing in concert.

The first couple of weeks were fine. I was walking to and from hospital, visiting friends, It all didn't seem too bad. During the third week my back started to burn, I started to feel tired shortly after the therapy but things still continued more or less as normal. It was at around this point when I was put into contact with the Willow Foundation to organise a post-cancer holiday weekend. I started to look for things I might like to do and discovered that Louis Cole (who I saw playing drums for Knower a year prior) was playing a solo show in London. By week 4 the burns had worsened, I was spending an extra hour in hospital getting dressings applied to the burns, the tiredness was getting worse, lying down had become moderately painful and I was unable to walk to the hospital some days.

Despite the now severe discomfort I tried to carry on as usual; walking to and from the hospital when I was able, taking part in support groups, meeting people and organising a post-school meetup with a few old friends.

A few months have now passed since radiotherapy had ended, the burns had healed after a few weeks. I wasn't feeling tired all the time, things are starting to move forward and following yet another MRI it was concluded that I was officially cancer-free! 8 months prior all of this had just been a mild discomfort in my hand. I had no idea it would lead me down the road it did. The time came for my special day. I was seeing Louis Cole at a solo show in London I had bought the tickets while the Willow foundation had very kindly provided transport and accommodation for my brother and me. I had a fantastic weekend! The weather was good, the show was better and I had been given the all clear not long before, life was starting to get back on track.

So there you have it, my 2018-2019 cancer experience. It still isn't over - I still only have the full use of my right hand, even though the left doesn't hurt nearly as much as it did, I still can't get back to playing bass, making guitars or even playing video games like I used to. I have however found a fondness for synthesizers so, while I can't play bass, at least it gives me something musical to do.

I'm not just going to say “having cancer has made me a stronger person” and leave it at that, because it hasn't. This experience has left me worried, scared and uncertain. There's always the nagging thought that I won't be able to pursue the things I've worked towards over the past 4-5 years. As you can probably imagine all of this caused lots of anxiety and uncertainty about how life would progress.

Music has always been a big part of my life, with listening to lots of music, playing the bass/synthesizer and making stringed instruments. Even though I can't make guitars at the moment, I will still listen to and play (on the synthesizer) for now. Who knows, maybe one day I'll get back to doing what I originally intended.

Over the course of my treatment I got a huge amount of support from the Nurses,Doctors, Therapists and Oncologists I also found lots of support on Reddit especially on the subs r/cancer, r/neurofibromatosis and r/anxiety during this unfortunate situation.

"If anyone else ended up in the same boat as me my advice would be; try to keep on doing the things you did before as much as possible"

– Jonny

it is very easy to fall into the pit of depression, especially in a time like this and keeping with these things will help prevent that.

Speaking recently with Jonny and his family Jonny is back in hospital having chemotherapy as there has been a recurrence of cancer. He insisted that we share his positive outlook on live with all of you and we wish this brave man and his family all the best. 

Filter News

Filter by Date
Category
Reset

Disclosing and explaining visible differences - CAR Workshop

Read more about the workshop, featuring additional guidance from Specialist NF Nurse Rebecca Rennison

Read More

Jo Ward’s Avastin Blog

Jo Ward, CEO of NF2 BioSolutions UK, shares a blog about her son Oscar's Avastin journey

Read More

Nigel’s story - Normal is as normal does

Nigel lived a normal life until age 47. The next 20 years took him from NF1 to NF2 to Schwannomatosis to mosaic NF2

Read More

World Mental Health Day 2023

NTUK (as part of the Neurological Alliance) has signed a joint letter aimed at improving access to mental health services

Read More

CAR Research visible difference experiences during recruitment

Research participants required, find out more and take part

Read More

NF Academy 2023 - Ella’s Blog

Ella, who has NF1, attended the week-long 2023 NF Academy in Portugal, meeting young adults with NF from all over Europe

Read More

University of Manchester Research

Read about the latest PHD research, involving Nerve Tumours UK, at the University of Manchester

Read More

New Research Study for Children and Young People with NF1

Find out more about the study and how you can participate here

Read More

Neurofibromatosis Type 2 name change

The new name for Neurofibromatosis Type 2 is NF2-related-Schwannomatosis (NF2)

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