The Other Days: Living with a brain tumour diagnosis by Gillian Lee
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When faced with a brain tumour diagnosis it can often be helpful for you to read of other people's experiences and journeys, which can then help you realise that you are not alone and also better equip you to cope with a brain tumour diagnosis.
Below we have listed some books that people we supported have found helpful.
If you know of any other books that you would like for us to list then please email us to let us know and we would be happy to consider it.
After reading Film and Drama at London University, Gillian Lee trained as a film editor with the BBC, then worked as a drama teacher. She lives in Cheshire with her husband, Christian. They have four children. In December 2015, Gillian was diagnosed with a stage four, glioblastoma multiforme tumour; incurable, aggressive and deadly with a very short life prognosis. She looked for and she found silver linings. Like the stringing together of separate, precious beads to make a necklace, each part of this book radiates the joy of life. The Other Days is a truly uplifting story of living with cancer.
Silas is ten years old when the headaches start. When the diagnosis arrives, his parents are told they have until Christmas… maybe. And so begins Sarah Pullen's battle to save her son, against doubting doctors and insurmountable odds. This story about love and loss traces her family's journey from that first day at the hospital, battling a tumour they named 'Bob', through Silas's death and beyond.
This profoundly moving and honest account shows that it is possible to find the strength for a journey that no mother should ever go on; that it is possible to find a new way to live, even when death is knocking on the door. It is about confronting grief – raw, ugly, incomprehensible grief. It is a book about wrapping a small boy in love, but still letting him get grubby knees. It is about learning to savour every moment of the here and now, yet also learning to let go.
At its heart, A Mighty Boy is a story of the love between a mother and a son. It is a book about seizing the moment and somehow managing to survive the death of a child. But most of all it is a book about a small, mighty, smiling boy.
This readable and moving non-technical guide is about living with a low grade tumour, a diagnosis given to thousands of people every year.
Gideon, a father of two, shares his own experiences and those of many others as they came to understand their diagnosis and learned how to live low grade.
"An informative, easy-to-read, engaging and understandable book about living with a low grade brain tumour. Peppered with range of real-life experiences from different people as well as Gideon's own story. Highly recommended for those living with a low grade brain tumour, but also other brain tumour patients, carers, family and friends to help understand what a loved one is going through and the journey ahead." Sarah Lindsell, Chief Executive, The Brain Tumour Charity
Emily was studying for her final year at university, when she thought she should consult a doctor about a hearing problem, which had plagued her for some time. It resulted in her being diagnosed with a brain tumour, which changed her life and her way of thinking forever.
A year on Emily embarks on a mammoth cycle ride across Mexico from coast to coast to prove that she is fit and healthy and able to rise to any challenge.
At the age of 10, Martino Sclavi and his family moved from Rome to New York. Knowing little English, he spent his time in school learning to sew and type, skills that have now become essential. After studying political science, he moved to Berlin and played bass for a Krautrock band while at the Humboldt and Freie Universität. He completed his MA at Cambridge University, then moved to London where he mixed drinks in a bar in Brixton. After work, with his 35mm camera on his shoulder, he would wander the streets and tell the stories of his neighbourhood.
Sclavi became a producer for a variety of documentaries and films. He has previously written articles and screenplays, but The Finch in My Brain is the first project he has typed into his computer without being able to read it back.
Martino lives in London and Italy where he invents bedtime stories to carry his young son to his dreams.
'Whenever I see Martino I am reminded of how little I know about life and death compared to him. How we don't know what is within us or what may lie on the other side. I hope it's as magical and beautiful as this book.' Russell Brand
Nurse Ted: A Children's Guide to Brain Tumours aims to help parents who have a brain tumour explain their diagnosis and treatment to their children. It tells the story of a little girl called Lilly, who learns her father has cancer. Lilly feels scared after discovering her father's diagnosis but in a child-friendly story Nurse Ted explains everything from scans to radiotherapy and even losing his hair.
In neurosurgery, more than in any other branch of medicine, the doctor's oath to 'do no harm' holds a bitter irony. Operations on the brain carry grave risks. Every day, Henry Marsh must make agonising decisions, often in the face of great urgency and uncertainty.
This is an unforgettable insight into the countless human dramas that take place in a busy modern hospital. Above all, it is a lesson in the need for hope when faced with life's most difficult decisions.
"This is a deeply compassionate account of a professional life spent on the edge, a job which has huge highs and appalling lows... Henry Marsh is a world-class neurosurgeon but he is also a great storyteller... This is an extraordinary book by an extraordinary man" Dr Michael Mosley, FOCUS
Toby Teapot's Daddy has a poorly lid is a short story for children that uses accessible characters to help explain to a child about a parent being diagnosed with a Brain Tumour. It follows Toby the teapot's Daddy through the journey of the first signs and symptoms, diagnosis and treatment. A donation from the sale of each book goes towards supporting those affected by brain tumours.
This book tells the true story of Adam Blain, who was diagnosed with a high grade brain tumour by his oncologist wife in A&E after experiencing headaches and consistent nausea.
Adam shares his journey of treatments and the challenges a brain tumour patient faces, approaching this with a chirpy and irreverent black humour. It has been described as "the funniest book so far this year about brain cancer".
"Adam Blain manages to be funny, poignant and inspiring describing with heart breaking honesty his journey so far, beginning with a diagnosis no one ever wants to face." RG
You can follow Adam and his progress on Twitter: @AdamBBlain
Henry Marsh has spent four decades operating on the human brain. In this searing and provocative memoir following his retirement from the NHS, he reflects on the experiences that have shaped his career and life, gaining a deeper understanding of what matters to us all in the end.
This book tells the story of a child with a brain tumour. It is told from the perspective of her father.
This story is based on true events, it is a story that must be told because the stark fact is that, unfortunately, the drama that unfolds can be told by many families.
In 2008 the art critic Tom Lubbock was diagnosed with a brain tumour. The tumour was located in the area controlling speech and language, and would eventually rob him of the ability to speak. He died early in 2011. Marion Coutts was his wife. In short bursts of beautiful, textured prose, Coutts describes the eighteen months leading up to her partner's death.
This book is an account of a family unit, man, woman, young child, under assault, and how the three of them fought to keep it intact. Written with extraordinary narrative force and power, The Iceberg is almost shocking in its rawness. It charts the deterioration of Tom's speech even as it records the developing language of his child. Fury, selfishness, grief, indignity and impotence are all examined and brought to light. Yet out of this comes a rare story about belonging, an 'adventure of being and dying'.
This book is a celebration of each other, friends, family, art, work, love and language.
In 2008, Tom Lubbock was diagnosed with a brain tumour, and told he had only one or two years to live. In this remarkable record of those years, lived out in three-month intervals between scans, he examines the question of how to live with death in sight.
As the tumour progressed, Tom engaged intensely and imaginatively with work, art, friends, and his wife and their young son, while trying to remain focused on the fact of his impending death.
His tumour was located in the area of the brain associated with language, and he describes losing control over the spoken and written word and the resources he drew on to keep communicating; a struggle which brought him ever closer to the mysteries of the origin of speech. As the Independent's chief art critic, he was renowned for the clarity and unconventionality of his writing, and the same fierce intelligence permeates this extraordinary memoir.
This is a book written by a man wholly engaged with life even as it ends.
In 2008 I was diagnosed with a rare brain tumour when I was 25.. I keep a diary that I have now turned into this book. It is not always easy for a person from the outside to see what is really happening to someone affected by a traumatic experience as such as this.
The book shows my true emotions and hardships of a brain tumour, surgery, recovery and then the scars inside and out.
There is love, friendship and courage - you will cry, laugh, find things you didn't know before. This book can help families and friends or other outsiders to see what a brain tumour survivor really wants you to know.
Faced with a desperately hard battle against cancer, Ivan decided he would like to share his experiences with readers of the BBC News website.
He hoped it could help demystify a disease that touches so many lives, and would allow people across the world to discuss the disease and share their experiences. From then, Ivan wrote a regular, deeply moving diary outlining his battle against the tumour. He endured two major brain operations, chemotherapy and various experimental treatments in his extraordinary fight for survival. He also married his German born girlfriend and they celebrated the birth of their second child.
Throughout the two years, the diary received thousands of e-mails from people around the world. Many of them are published in this book. It is impossible to read them without being deeply moved - messages of support to Ivan, people's experiences, stories of hope.
One of the most remarkable aspects of the regular diary has been this amazing coming together of so many people around the world.
Drawing on her family's own experiences and those of other parents facing the death of a child from illness or a life-limiting condition, Sacha Langton-Gilks explains the challenges, planning, and conversations that can be expected during this traumatic period. Practical advice such as how to work with the healthcare professionals, drawing up an Advance Care Plan, and how to move care into the home sit alongside tender observations of how such things worked in her own family's story.
The book also includes a template person-centred planning document, developed by experts in the field. Empowering and reassuring, this book will help families plan and ensure the best possible end-of-life care for a child or young person
The book was inspired by my experience of explaining my husband's brain tumour illness to my elder son, and is intended to help begin conversations surrounding serious illness and death with young children. I hope it will help many families who find themselves needing to start these types of conversations, or wishing to continue conversations they have already introduced to their children.
At its core, my book is about the loving relationship between a little boy and his dad. It is a story about love, fun, beauty, loss, sadness, memories and celebration. I've tried to incorporate truth, with a dash of magic and imagination, into the essence of the book in a way that leaves a child feeling reassured that love and memories live on, despite the physical loss of a loved one. I hope the gentle words and voice I've used are something children and parents alike can connect with.
Of course, I am a mother who simply has written words from her heart, for her children. My words are a mother's words, not those of a child psychologist, grief counsellor, or anything else. My book is intended as a starting point for beginning conversations surrounding loss with young children, and I've created it as a simple gesture of love for my own. I chose to focus on beauty, life and celebration because it's what I feel will work for me and my own children as we reflect on the memory of their dad once that time comes in our life. My ultimate goal and wish is to reassure my children as I support them in their grief, and I hope my words will help other families out there, too.
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