Walking On The Edge

Marco Previero

Description

"Millie was seven years old when she was first diagnosed with brain cancer. To rebuild her physical and mental strength, both significantly depleted following seven months of intensive treatment, Millie and I made a habit of going on regular walks in the countryside. As part of those, we also started talking about her cancer and the limitations that this disease and its cure was going to impose on her life.This is the book I wish I'd had when my daughter was first diagnosed."Marco Previero covers several aspects of brain cancer and its related treatment in layman's terms, making it easy to understand for fellow parents facing similar circumstances including; the many practical challenges that parents, and survivors of childhood brain tumours face in the long-term depending on the position of the tumour, its related treatment and cure, how the body copes with therapy, and the level of support available in the recovery phase. He provides an objective exploration and reflection of Millie's treatment, the limitations it has imposed, and what they found helpful in addressing and managing these during treatment and recovery.

Sujets

• Philosophie et théologie
• Oncology
• Memoir

Informations

• Publié par: Troubador Publishing Ltd
• Date de parution: 28 juin 2022
• Nombre de lectures: 0
• EAN13: 9781803139401
• Langue: English

Extrait

Marco Previero discovered writing late in life, after his daughter Millie was diagnosed with brain cancer in 2013. Since then, he has published a book, national articles and appeared both on TV and radio programmes to advocate for better quality of life for childhood brain tumour survivors. When he is not writing, Marco spends his time both as a Trustee of Success Life After Cure Ltd, the charity this book is in support of, and running his business. He lives in London with his wife and his three children and spends much of his free time dreaming of a cure for the many life-altering late side effects childhood brain tumours often bring.

Dr Helen Spoudeas qualified in 1981 from Barts Hospital, London, later obtained Paediatric Specialisation in 1985, and finally attained her postgraduate doctorate (MD) in 1995. She is a fellow of the Royal College of Physicians (FRCP) and of Child Health (FRCPCH). In 1999, she became a consultant paediatric endocrinologist at University College Hospital and Great Ormond Street Hospitals, a post she semi-retired from in 2020. Since then, she has led the launch of Success Life After Cure Limited, a national charity whose aim is to enable better futures for survivors of childhood brain tumours.






Success Life After Cure Ltd charity exists to raise awareness of, and support life-changing growth, developmental, neuroendocrine and mental health effects, of a brain tumour in childhood during and beyond cure.

www.successcharity.org.uk
Registered Charity Number: 1188298






Copyright © 2022 Marco Previero

Cover design by Amanda Scope

The moral right of the author has been asserted.

Apart from any fair dealing for the purposes of research or private study, or criticism or review, as permitted under the Copyright, Designs and Patents Act 1988, this publication may only be reproduced, stored or transmitted, in any form or by any means, with the prior permission in writing of the publishers, or in the case of reprographic reproduction in accordance with the terms of licences issued by the Copyright Licensing Agency. Enquiries concerning reproduction outside those terms should be sent to the publishers.

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ISBN 9781803139401

British Library Cataloguing in Publication Data.
A catalogue record for this book is available from the British Library.

Matador is an imprint of Troubador Publishing Ltd



To Vanessa, Ellie, Millie, and Luca


Contents
Foreword

A Brief Note to the Reader

Introduction

Part One: Spring
Themes: Coping with traumatic events. Dealing with uncertainty. Paediatric brain cancers: what are they exactly? Why do they happen? The nature of choice when children are involved. Talking to children about cancer.

Part Two: Summer
Themes: Dealing with a shattered future. Children’s outlook during and after treatment. Being newbies. How children cope with therapy. How to cope with this total disease. Feeling helpless. Telling children the truth. Understanding chemotherapy. Evaluating long-term side effects.

Part Three: Autumn
Themes: How siblings cope with a cancer diagnosis. Talking to siblings about cancer. Contemplating the loss of a child. Chemotherapy: the good, the bad and the ugly. Chemo’s side effects. The kindness of strangers. Ways to think about the future. The truth about “progression-free survival”.

Part Four: Winter
Themes: Post-traumatic stress for children and parents. The
vocabulary of cancer. Reframing how we think about this disease. Coping with the long-term side effects of cancer. What are they and how can they be managed? Dealing with grief.


Foreword
By Dr Helen Spoudeas MBBS DRCOG FRCP FRCPCH MD, Paediatric & Adolescent Endocrinologist & Chair of Success Life After Cure Ltd

Cure Alone Is Not Enough

Surviving a childhood brain tumour
Surviving brain cancer or any brain tumour in childhood is just the first hard-won step on a life-long journey which, on average, can span over sixty years. It is hardest for those children surviving multiple, toxic, high-dose and transplant therapies, head or whole-spine irradiation, metastatic or second cancers and, importantly, unpredicted brain injury arising from tumour location as well as treatment. Much of the quality of survival research collected over the last twenty years shows that, if we do nothing, there is an inexorable decline in cognitive, emotional and mental health well-being over the growing years. It tends to be worst for those that are infants and generally under seven years of age at diagnosis and who, therefore, have the greatest developmental journey ahead. They face the longest opportunity to “fall” before they meet criteria for helpful intervention. Conversely, they also possess the greatest ability to adapt and benefit from rehabilitation to reach their own potential, whilst they are still maturing. They often have the smallest voice to request our help.
Investment in cancer research and intensified treatments now means some eighty per cent of children with a brain tumour live at least five years after diagnosis. But while ever-younger children and even new-born infants, tolerate (much better than adults) increasingly burdensome and repeated experimental therapies, it’s easy to forget the “cure’s” heavy price on the developing child. This is especially true for paradoxically “benign” tumours with malign positions close to the brain’s deep, primitive, midbrain control centre, vital for life itself.
Some two-thirds of survivors experience more than one (many up to five or six) significant, long-term, sensory, neurological or life-threatening disabilities such as vision, hearing, speech and language impairment, learning and behavioural difficulties. They often feel socially alienated and unable to thrive. Without ongoing support, these children can struggle to achieve their growth potential, reach adolescence and sexual maturity, complete their schooling and develop meaningful peer relationships. Later on, this can impact on their ability to live full, independent adult lives. Others will need to access educational, neurocognitive, or clinical psychology services but also psychiatric support for behavioural issues, low mood and other mental health disorders.
For most, vital rehabilitative lifelines remain unobtainable; developmental gaps and opportunities for support are missed, as symptoms evolve over many maturing years. Mental health and schooling issues are often unmasked too late, during the peak period of adolescent brain maturation at secondary or further education; youngsters can experience victimisation, fatigue, examination failures and vocational discrimination, or maladjustment to secondary, chronic health problems (heart, kidney, gut/enteral, hormonal), which can themselves be life-threatening. An unlucky few will never truly be rid of their brain tumour and receive continuous repeated cycles of experimental treatments. Others will be tripped unexpectedly in young adulthood by a second primary tumour elsewhere or a second acute brain injury from a mechanical (e.g. shunt) malfunction, brain infection or haemorrhage/bleed. And yet, all too often this new and growing community of survivors can find it difficult to access just as vital, neurodevelopmental, vocational and mental health NHS services during and beyond the neuro-oncology treatment itself. This can be especially true for a vital minority who are most brain injured, least able to speak for themselves and without a parental advocate.
The consequences of growing with and surviving a childhood brain tumour are often not prioritised within our “cancer-directed” healthcare setting. Existing neuro-oncology and so-called “cancer late effects” services do not always provide fully for this group’s individualised, complex, and “invisible” needs. By definition this group starts with an unrecognised and uncharacterised acquired brain injury that varies by tumour position (deep midbrain or peripheral), is not alleviated by cure and is aggravated by disease relapse and treatment failures. We don’t yet know which early, intensive and ongoing rehabilitation works best for them. Surely, they deserve just as much investment in proactive rehabilitative research from the beginning and throughout their growing years, as a mandated parallel part of their “cure” pathway?

The importance of early parallel brain injury assessments and neurorehabilitation
Getting a neurodevelopmental assessment from the beginning and at each (of a potential four) key maturational stages, can make such a difference to helping children achieve their potential and to preventing them deviating too far from it. But unlike tumour treatment pathways, parallel brain injury assessment and support services are patchy and limited, administered too late, temporarily funded (by charities or research grants) and unavailable to every child from diagnosis to maturity. All too often, these same individuals who have struggled so hard to survive early childhood, and to maintain their developmental trajectory, must in mid-childhood, adolescence or young adulthood, be allowed to fail, to fall to a level where their needs become acute and where they are most likely to suffer long-term harm, before they meet criteria for educational, vocational, mental health or neuro-disability support.
In addition, already stretched community health, education and social care may deem their multiple health and life-threatening hormone needs too comp