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The web Directory of Information Materials for People Affected by Cancer is regularly updated and currently has details of over 1,900 booklets, leaflets, books and audiovisual materials for people affected by cancer. Most have been published in the last five years but we have included some older ones that are still useful.
Children's Cancer and Leukaemia Group
This illustrated booklet tells the story of siblings Tom and Jess, whose little brother Ben has cancer. It describes how they cope with the illness and the changes it brings. It is aimed at children under nine.
Macmillan Cancer Support
This list of books, booklets, leaflets, and factsheets for children and young people covers cancer in general, specific cancers, treatments, cancer in others, end of life, and bereavement. It also includes works of fiction that feature cancer. Many of the resources have been reviewed by people affected by cancer and we have linked to the reviews where available.
Lymphoma Action
Comprehensive booklet for young people with lymphoma.
Children's Cancer and Leukaemia Group
Sources of support for families who have lost a child from cancer. Includes details of organisations, bereavement centres, books for parents, and books for children.
Anthony Nolan
Activity booklet for children aged between 5 and 11 who are about to have a stem cell transplant. It will help them understand why they need a transplant, what will happen to them and how to look after themselves as they recover.
Anthony Nolan
Activity booklet for children aged between 5 and 11 who are about to have a stem cell transplant. It will help them understand why they need a transplant, what will happen to them and how to look after themselves as they recover.
Anthony Nolan
Activity booklet for children aged between 5 and 11 who are about to have a stem cell transplant. It will help them understand why they need a transplant, what will happen to them and how to look after themselves as they recover.
Anthony Nolan
This booklet is for anyone with a child who needs a stem cell transplant (sometimes also called a bone marrow transplant). It will help you understand why they need one, what will happen to them and how to look after them as they recover. It will also help you answer any questions your child might have about what they’re going through. It is a supplement to our children’s activity books: Going to hospital for my stem cell transplant; Having my stem cell transplant; and Coming home after my stem cell transplant.
Children's Cancer and Leukaemia Group|Neuroblastoma UK
This booklet is for parents and carers of a child who has been diagnosed with neuroblastoma. We hope it answers some of your questions and helps you to cope with some of the feelings you may have. There is information about neuroblastoma, the treatments that are used and their possible side effects. It also discusses how a cancer diagnosis can affect you, your child and the rest of the family.
Children's Cancer and Leukaemia Group
Hair loss is a common side effect of treatment for childhood cancer, but its impact can be significant. This animation tells the story of Anna, Jack and Laura who all lose their hair while having treatment for cancer and helps young children to understand what might happen.
Children's Cancer and Leukaemia Group
Being told your grandchild has cancer comes as a terrible shock. Most grandparents worry not only about their grandchild, but also about how their own son/daughter will cope. Many are also concerned about the effects a cancer diagnosis will have on other children within the family, how they can support their family and how, as grandparents, they themselves will cope. Sometimes, it is not as easy for grandparents to access information first hand and this can lead to feelings of isolation. This guide answers some of the many questions grandparents might have during diagnosis and treatment.
Children's Cancer and Leukaemia Group
This booklet for children and teenagers aged 10-16 aims to help answer questions and concerns that arise when treatment for cancer finishes. It covers feelings and emotions, coping with worry, coping with family and friends, school and college, healthy living, and practical issues such as what happens at follow-up, medicines, and what to look out for.
Children's Cancer and Leukaemia Group
This guide describes stem cells and explains what a stem cell transplantation is, why it might be necessary, and the different types of transplants. It also describes the process of finding a donor, the pre-transplant operation, the transplant team, what to bring to hospital, preparing to receive a bone marrow transplant, what happens during the transplant and afterwards, the side-effects, getting ready to go home and getting back to normal. Includes details of useful organisations and a glossary.
Children's Cancer and Leukaemia Group
Illustrated, colour booklet for children who may be donating bone marrow or stem cells to a sibling. It describes stem cells and stem cell transplants, why a transplant is needed, the types of transplants, the selection process, tissue typing, harvesting the bone marrow (including the risks and side-effects), and what happens if the transplant is unsuccessful. It also covers issues such as consent, what to take into hospital, and changes to sibling relationships. Includes details of useful organisations and a glossary of terms.
Children's Cancer and Leukaemia Group
Being told that your brother or sister has cancer can be overwhelming and you may be full of questions. It is a difficult time for everyone in your family as life is turned upside down almost overnight. You will likely feel many different emotions as you try and come to terms with what your sibling’s diagnosis means for you and your family. You may feel worried or upset at this sudden change that you didn’t want or ask for, and you may desperately want everything to go back to normal as it was before their diagnosis. Life can seem very unfair. These feelings are completely normal and you are not alone. This guide covers how your brother or sister’s diagnosis might affect you, your feelings and emotions, and how it is important to take care of yourself during this difficult time. It explains more about cancer, and what you can expect over the coming weeks and months.
Together for Short Lives
Practical information to support parents and carers at this difficult time. It aims to answer some of the questions that you might have, and sets out what you should expect from children’s palliative care services with useful links to further sources of information and support. Includes reflections from families on their experience of losing a child.
Macmillan Cancer Support
This booklet is about how cancer and its treatment can affect your fertility. It is for teenagers and young people who need information about this before, during or after cancer treatment, whether you are in a relationship or not and whatever your sexual orientation. It explains how cancer and cancer treatment may affect your fertility and has information about preserving your fertility, having fertility tests, fertility treatments and other options for having a child. It also tells you how to get more support.
The Brain Tumour Charity
This leaflet gives an overview of ependymoma in children and answers questions you may have about this type of tumour.
Leukaemia Care
Being told that your child has acute lymphoblastic leukaemia (ALL) can be a shock and very upsetting, particularly when you may never have heard of the disease. This booklet describes childhood ALL, what causes it, who it affects, how it affects your child’s body, what symptoms to expect and likely treatments. It also covers everyday life and childhood ALL and talking about childhood ALL. Includes a glossary of terms and details of useful contacts and further support.
Headsmart
Brain tumours are relatively rare, but early diagnosis can save lives, which is why keeping track of any potential symptoms can help to make the most out of a doctor’s appointment and may lead to a quicker referral or better reassurance. You can use the diary at your appointment to describe the symptoms and explain your concerns.
Children's Cancer and Leukaemia Group
Getting back to school is vital for children with cancer. School helps them to feel ‘normal’ and reduces the isolation and loneliness which many children with cancer face. Teachers have a really important role to play in encouraging the child’s integration back into a school routine. But cancer is a scary word for many and it is completely normal for teachers and others working at the school to feel upset – not just for the awful situation facing the pupil and their family, but also for the impact on the rest of the class and school community. This guide aims to lessen some of the worries you may have by giving simple practical information and advice on a variety of issues faced by the child and their family, and some ideas on how to help them within a school setting.
Burning Chair
What happens when we die? Is this really all there is? What exists beyond this life? Alex Duncan is just an ordinary 14 year old boy. His main worries are homework, girls, the school bully......and his sister, Jenna who has ovarian cancer, stage B. As his parents retreat into themselves, Alex is desperate to find a way to help, a way to make things better for his sister. After all, it’s the not knowing that’s the worst thing. Whilst he tries to untangle the ultimate question, life still goes on: his best friend seems oblivious to his feelings about her, the school bully has taken a special interest in him, and everything he does just makes him feel more and more awkward and out of place. Georgia Springate’s debut novel, Beyond, is a funny and touchingly compelling coming-of-age story about love, loss and discovery. Read it and take an emotional journey through one boy’s quest to understand that most tricky of questions: what lies beyond? (Publishers)
Frances Lincoln Children’s Books
A teenage girl heads towards the hospital waiting room where the doctors are going to tell her how much time she's got to live. As she walks, she thinks about her journey up to this point… the terrible decor in the hospital, wearing a headscarf, the horrible treatments, but also being with her friends, family, and her new boyfriend Victor. This is a story about cancer with a happy ending. It's about life, love, and especially, hope. (Publisher)
Bone Cancer Research Trust
Abbie Has Osteosarcoma is written for parents, carers and healthcare professionals to read with children to help them understand about their osteosarcoma and its treatment.
Children's Cancer and Leukaemia Group
Hair loss is a common side effect of having chemotherapy and of radiotherapy to the head. This book tells the story of Anna, Jack and Laura who all lose their hair while having treatment for cancer and helps young children to understand what might happen.
Children's Cancer and Leukaemia Group
A colourful booklet for young children who are preparing to donate bone marrow. It explains what bone marrow is and describes what happens to Jess in hospital before, during and after the operation and when she goes home.
Lymphoma Action
This factsheet about lymphoma in children (0 to 14 years old) is primarily intended for parents and carers and covers: What is lymphoma?; Types of lymphoma in children; Symptoms; Tests; Outlook; Treatment; Side effects and late effects of treatment; Relapsed and refractory lymphoma; After treatment; Further information and support.
Children's Cancer and Leukaemia Group
The huge amount of information online can be overwhelming, and sometimes conflicting, causing even more worry and stress. It is important that parents make sure that health information is filtered and gathered from reliable, easy to understand sources. As a parent or carer of a newly-diagnosed child, you may not feel confident when searching through cancer information. This leaflet offers advice and tips on where to start and what to look for.
Lymphoma Action
This factsheet covers common practical concerns of parents and carers looking after children and young people with lymphoma: When your child is diagnosed; Telling your child; Where your child will be treated; Changes to expect at home; If your child becomes unwell at home; Your child’s diet during treatment; Going back to school; Looking after yourself; Further information and support.
Children's Cancer and Leukaemia Group
This factsheet is written to help explain what is involved when you undergo a peripheral blood stem cell (PBSC) harvest. It explains what haematopoietic stem cells are, why they are collected, and what happens before, during and after the harvest.
CLIC Sargent|Lymphoma Action
Tom is ten years old when he is diagnosed with lymphoma. This illustrated, colour storybook for parents to read with their children describes what happens when he has to go to the hospital for tests and treatment. The story follows Tom from when he first feels ill, through diagnosis and treatment, to recovery and return to normal life.
Lymphoma Action
A factsheet for young people up to the age of 24. It covers the different types of lymphoma in young people, their symptoms, the tests needed, treatment options and their possible side effects, and what happens when treatment is finished.
Lymphoma Action
Practical advice on issues that often concern teenagers and young adults (up to 24 years old) with lymphoma. It covers: After diagnosis; Where you will be treated; Your medical team; Looking after yourself; School, university and work; Relationships; After treatment.
Teenage Cancer Trust
Comprehensive information for young people with cancer.
Children's Cancer and Leukaemia Group
Children with cancer may experience problems with eating and drinking at some stage. This can be due to the cancer or its treatment. This booklet has ideas on helping children with a poor appetite and other eating problems.
Roy Castle Lung Cancer Foundation
If you or someone you care for has just been diagnosed with lung cancer, then it’s almost certain that you’ll have a lot of questions. We have produced this booklet in partnership with lung cancer experts and people affected by lung cancer to help you make positive informed choices about your care and treatment.
CLIC Sargent|Lymphoma Action
Tom is ten years old when he is diagnosed with lymphoma. This illustrated, colour storybook for parents to read with their children describes what happens when he has to go to the hospital for tests and treatment. The story follows Tom from when he first feels ill, through diagnosis and treatment, to recovery and return to normal life.
The Brain Tumour Charity
This factsheet gives an overview of surgery for brain tumours in children and helps to answer some questions you may have about brain surgery.
The Brain Tumour Charity
This factsheet describes when and why children might be given steroids, how they are taken and the possible side-effects, and answers some commonly asked questions that you may have about steroids in children.
The Brain Tumour Charity
This factsheet has information about chemotherapy to treat brain tumours in children. It covers how chemotherapy works, why and how it is given, and preventing infection of your child’s central line and has answers to some common questions.
The Brain Tumour Charity
This factsheet has information on radiotherapy in children, the treatment procedure and some of its possible side-effects.
The Brain Tumour Charity
Information about CT and MRI scans for the parents/carers of a child with a brain tumour, including scan procedure, and how to prepare your child for a scan. It also has answers to some common questions you may have about CT or MRI scans.
CLIC Sargent
This booklet, written with the help of young people living with cancer, aims to answers questions that young people with cancer may have. It covers topics such as making sense of it all, hospital life, family and friends, education, work and finances, and sources of support.
Macmillan Cancer Support
This booklet is for people who are worried that cancer might run in the family. It explains how genes work, the role of genes in the development of some cancers, how risk is inherited, and the role of genetic counselling and testing. It also includes information on preventing cancer and the role of genes in specific cancers (bowel, breast, ovarian). Includes details of useful organisations and other resources.
The Brain Tumour Charity
This fact sheet gives an overview of some of the learning difficulties your child may experience as the result of a brain tumour and also of the support and possible plans of action (strategies) available to help them in their learning.
Leukaemia Care
Being told that your child has acute myeloid leukaemia (AML) can be a shock and very upsetting, particularly when you may never have heard of the disease. This booklet describes childhood AML, what causes it, who it affects, how it affects your child’s body, what symptoms to expect and likely treatments. It also covers everyday life and childhood AML and talking about childhood AML. Includes a glossary of terms and details of useful contacts and further support.
The Brain Tumour Charity
Practical suggestions for parents/carers to helping their child to eat if they have had treatment for a brain tumour.
The Brain Tumour Charity
This factsheet outlines the roles of some of the health care professionals who may be part of a child’s multidisciplinary team.
CLIC Sargent
A booklet for parents of children diagnosed with cancer.
The Brain Tumour Charity
Leaflet with information about the common symptoms of brain tumours in children and young people and what to do if a child is experiencing any of the symptoms. It also has information about the Headsmart campaign and details of further support.