Helpline 07939 046 030

Laura’s Story

11 November 2019

Laura's Story

Laura, Senior Communications Officer for the charity Carers UK, has NF2. She underwent surgery to remove a tumour from her spine at King’s College Hospital in London and decided to share her experiences in a blog. Here are some extracts:

Before the surgery, 28 April

“As it turns out, the timing is pretty awful! Now is the busiest time of year at work, thanks to things like Carers Week, which runs from 10-16 June this year. I hope I’m back at work in time to lend a hand and make sure everything runs smoothly, but my boss has told me to forget about work and focus on recovery. One of my best friends is getting married in the same week in June, and I’m determined to be there and enjoy celebrating the day. I have no idea if that’s realistic or not, as I haven’t had invasive surgery before"

Day 1 on the road to recovery, 29 April

“It’s around 11.30pm as I write this – and I’m alive and well. Surgery was longer than expected, starting at around 1pm and only coming out on to the ward at about 7.30pm. When I first came around in the recovery room, I wasn’t able to move my left leg or foot at all. Talk about terrifying! One of the (rare) risks of this surgery is paralysis and I won’t pretend I did anything other than cry, panic and frantically try to get the leg to move. Well, as much as you can do when you’re still under the influence of anaesthesia, flailing on your back like a tortoise. It was a pretty wimpy attempt.

Now, it’s several hours later (around 1.30am) and although I have feeling in the leg and can move my toes and ankles,  I have to pick up and move the  leg itself like a very heavy, very solid sack of potatoes. A downside of having long, strong legs, that I never thought would become an issue, is that they weigh an absolute ton. I’m hoping that as the bruising heals, I’ll regain control of my  leg. I can’t bring myself to think about it lasting too much longer.

Now 6am, the nurses turn on the lights in the room and start the morning routine. I’m promised morphine, but then the nurse in question has to  change  a bed whilst manoeuvring the occupant in and out of it. After a very slow trip to the bathroom in a wheelchair – transferring in and out of it feels like my back is being ripped open – we finally get me back to  bed, where I spend ten minutes panting and crying from the pain and effort. Oral shot of morphine administered, now all I can do is wait for breakfast – not to mention my first coffee in two days – and hope that I’ll be able to keep it down.”

Day 3 on the road of recovery

“Last night, I made the terrible mistake of curling into the foetal position on my side in the early hours of the morning. It was incredibly comfortable, but when I woke up all of my back and abdominal muscles had locked into that position and I had to call for a nurse to help “unfold” me! Definitely do not recommend doing this.

Around 11am, one of the doctors came to see me. Something he said made me realise that it’s possible my left leg won’t completely go back to normal. Cue the waterworks and a bit of a panic. How will I get around my flat? Get the tube? Go to work? Socialise? What will I do at the wedding – be the leaning tower of liability, always hanging off someone’s arm, or start looking for a bedazzled Zimmer frame or wheelchair? Once the doctor left, the poor male nurses didn’t know what to do with me, sitting there ugly-crying. A few tissues and awkward pats on the shoulder later, they left me to it.

Fast forward a few sniffly, self-pitying hours to 2pm, when a physiotherapist with an incredibly warm smile and ready-for-business energy breezes into my room. I expected the worst when her checks made it so clear that there was a huge difference between the strength of my two legs – one passing all the tests with flying colours, the other floppy and mostly useless.

You can imagine my surprise then, when she declared that she wanted me up on a Zimmer frame. Immediately. To my absolute amazement, in no time at all I was able to reach the end of the corridor. Only when I caught the physiotherapist’s concerned eye did I realise that I was loudly sobbing – but I assured her it was more out of happiness than agony (although I did accept a morphine shot immediately afterwards).”

3 weeks in

“It’s now been three weeks since the operation, and almost two weeks since I came home! The strangest part of recovery has been going from living a typical busy Londoner life, functioning fine on 7 hours’ sleep a night, to needing 10 or so hours plus a daytime nap.

My local hospital still haven’t processed the referral for neuro physio, so frustratingly I’ve not had any outpatient treatment yet. As much as it’s fun doing mini squats at home, my doctors and GP said it’s important to see a neuro physio as soon as possible, so I might now have to look into going private in the short term which isn’t ideal and will be expensive! My mobility is one of the main obstacles to returning to work, so it’s important that it’s being dealt with properly.”

9 weeks since the operation.

“It feels like the month of May just didn’t happen, then before I knew it, my friends’ wedding, returning to work, and my birthday (within a week, in that order!) had passed in a blur and June was over too. I took a walking stick to the wedding instead of a crutch, and even managed some embarrassing dancing!

I ended up being off work for 7 weeks in total – missing Carers Week by a matter of days – as my GP wasn’t happy for me to travel to work on the tube until she was sure I was strong enough. Looking back, I was either arrogant or just plain stupid to think I’d be back at work within a month!

Now I just hope to enjoy the summer, having lots of barbecues and spending time with friends. A long- awaited holiday may be on the cards in September or October – but I don’t want to go away until I’m much stronger, as I’m not good at lying on a beach and much prefer city breaks with lots of walking and exploring!”

Filter News

Filter by Date
Category
Reset

Meet Jessica Our Specialist Nurse

Read More

Rare Disease Day 2024

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

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

Charlotte & Evie’s story

Read More

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

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

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