There are many organisations, support groups and books that can help you cope when you are dying with cancer. They can also help the people close to you.
Cancer Research UK information and support
Cancer Research UK is the largest cancer research organisation in the world outside the USA. We fund research on all aspects of cancer from its causes to treatment and prevention.
We are committed to producing high quality information for people affected by cancer, health professionals and the general public. We also have a range of health awareness leaflets.
Nurse freephone helpline: 0808 800 4040, Monday to Friday, 9am to 5pm
Admin phone number: 020 7242 0200
Cancer Chat is our online forum where you can share experiences.
Organisations and websites for people with advanced cancer
This section of the NHS Choices website contains information about what you can expect during end of life care and the things you may want to think about. These include how and where you want to be cared for, as well as financial issues.
Maggie’s is a national charity with centres across the UK. They offer care and support to people affected by cancer. Each centre is beside an NHS cancer hospital and is run by specialist staff.
You can join a support group, take part in weekly sessions like relaxation and stress management, or learn about nutrition and health. You can also visit just to have a cup of tea and a friendly chat.
10 Dumbarton Road
Phone: 0300 123 1801
The Natural Death Centre gives support and information to help people die naturally at home. It advises on arranging inexpensive and environmentally friendly funerals. It also offers counselling.
This national charity works to inform and empower people to exercise their rights and choices around end of life care. It helps you plan ahead to ensure your wishes will be respected.
181 Oxford Street
London W1D 2JT
This site offers support to children between 12 and 16 who have a parent with cancer. There is information about cancer and a forum to share experiences.
Kids Konnected is an American site aimed at children aged between 5 and 18. Children affected by cancer help each other on the site, which has a chat room.
The Good Funeral Guide website is run by a not-for-profit social enterprise company. The website provides information about funerals and has a recommended list of funeral directors. The company visit funeral directors and assess their services every 3 years.
16 Easton Square
Isle of Portland
Telephone:07557 684 515
20-22 Wenlock Road
An online comprehensive guide to planning a funeral. It covers what to do after a death, how to organise a funeral, and how to deal with the legalities and financial issues. It also lists a number of organisations to help you.
Nursing home advice and information
Organisations and websites for carers
Gives information and support to carers on many issues. It has local groups all over the UK and the head office puts you in touch with your local group.
Telephone: 0300 123 1053. Open Monday to Friday, 9am to 8pm. Saturday to Sunday, 11am to 4pm
Email: Online enquiry form
Part of the NHS Choices website. It provides a gateway to comprehensive sources of information for carers. The site has been developed in conjunction with the Princess Royal Trust for Carers, Carers UK, Crossroads, and Young Carers Net. It contains information about benefits, links to national and local support organisations, and a directory of services. You can ask for a call back in one of more than 170 languages.
Phone: 0300 772 9600
Crossroads Care and The Princess Royal Trust for Carers merged in April 2012 to form the Carers Trust. It works to improve support, services and recognition for anyone living with the challenges of caring, unpaid, for a family member or friend who is ill, frail, disabled or has mental health or addiction problems. And they provide access to desperately needed breaks, information and advice, education, training and employment opportunities. They have offices in Scotland and Wales that can be contacted through the website or the London office.
The National Association of Funeral Directors can advise on arranging funerals. It gives information on the services provided by funeral directors and advises on what to do after someone has died. It also has a list of funeral directors across the UK.
To celebrate the life of a loved one, you can create a personalised page in their memory. You can invite friends and family to donate in their memory to help beat cancer.
Bereavement and grief organisations
Grief Encounter provides support services for bereaved children and their families throughout the UK. Their website has resources and information for bereaved children and teenagers.
Grief Encounter Project
17 East End Road
This organisation can put people in touch with their nearest local bereavement support service. It also has a directory of UK bereavement services.
National Association of Bereavement Services
20 Norton Folgate
Phone: 0207 247 0617
Helpline Number: 0207 247 1080
General support and information organisations
For general health advice and information.
NHS 111 gives information if you need fast medical help but it's not a 999 emergency.
Confidential telephone health advice and information service for people in Scotland.
NHS Helpline: 0800 22 44 88 (8am to 10pm – for details of pharmacies, GP practices and dentists in Scotland. Can also give information about illnesses, treatments and NHS services)
NHS 24 Helpline: 08454 24 24 24 (for when you are feeling ill and your doctor's surgery is closed)
Macmillan Cancer Support provides practical, medical and financial support and push for better cancer care. They provide booklets on cancer and treatments and run a helpline providing cancer information and benefits advice.
89 Albert Embankment
Phone: 0808 808 0000 (Monday to Friday, 9am to 8pm – information available in other languages)
Textphone: 0808 808 0121
An independent network that provides free advice about money, legal issues, housing health and social welfare issues. Often provides advice in English and other languages.
Phone 020 7833 2181 or go to the website to find your nearest Citizens Advice office.
Disability Rights UK provides an information and advice service and campaigns for disabled people's rights.
They also provide a Just Can't Wait card and keys that give access to toilets throughout the UK for people who might need to use a toilet in a hurry.
49-51 East Road
Phone: 020 7250 8181
DIAL is a network of more than 100 disability information and advice groups. The groups are run by people with experience of disability who give free, independent advice to anyone affected by disability (including cancer). It is now part of SCOPE, the UK charity for people with cerebral palsy and disability.
Organisations that provide equipment
Offers mobility aids at low cost to help both elderly people and disabled adults and children. Has an extensive range of daily living aids and disability equipment.
Brook Mill Industrial Estate
Phone: 0845 5194734, Monday to Friday, 9am to 5pm – lo-call rates apply from a landline
Mobile number: 01772 675040
Red Cross services vary in different parts of the country, but they provide medical equipment, transport and hospital escort services, home emergency personal care, home respite care. There are branches throughout the UK.
Hearing and Mobility has shops around the UK and a website selling equipment, including mobility scooters and stair lifts. It also has equipment to help with bathing, cooking, eating, and drinking.
Specific symptoms organisations
The Bladder and Bowel Foundation formed in 2008 from the former organisations Incontact and the Continence Foundation. It supports people living with bladder and bowel disorders and has a telephone helpline. The service is confidential. They can also give you information about stoma products.
They have a 'Just can't wait' card which allows holders access to toilets in shops and pubs etc. They ask for a £5 donation to receive this card.
Nurse helpline for medical advice: 0845 345 0165
General enquiries: 01536 533255
A UK support group for ostomates. The Colostomy Association provides information and support for anyone with a colostomy.
95 London Street
Reading RG1 4QA
Helpline: 0800 328 4257 (24hr helpline)
Tel: 0118 939 1537 (9am-5pm, Monday to Friday)
A support group for anyone who suffers from chronic pain. They deliver self management training to help those with chronic pain.
Suite D, Moncrieffe Business Centre
Freephone: 0800 783 6059 (Monday to Friday, 8am to 4.30pm)
Offers information and support to people with pain and those who care for them. They run a helpline staffed by volunteers, and have an online forum called HealthUnlocked for members to share experiences. You can listen to podcasts which feature interviews with experts and people who are managing their pain. You can also subscribe to their magazine, Pain Matters.
62-66 Newcraighall Road
Telephone: 0131 669 5951
Helpline: 0300 123 0789 (Monday to Friday, 10am to 4pm)
This organisation provides information and support for people who need artificial feeding. They also have regional support groups for PINNT members.
PO Box 3126
A national charity offering information and support to anyone affected by lymphoedema. It has local support groups, a helpline and a website. It also produces a range of information including factsheets about lymphoedema and its treatment, 2 DVDs about self management techniques for lymphoedema, and a quarterly newsletter.
St. Luke's Crypt
Telephone: 020 7351 0990 (Administration)
A registered charity that aims to improve the lives of those with lymphoedema. They actively contribute to the improvement of the management of lymphoedema worldwide and especially in developing countries. They have a number of booklets that can be downloaded free of charge.
6/88 South Ealing Road
The BLS is mainly for health professionals caring for people with lymphoedema. They aim to encourage research and produce guidelines.
The Garth House
Telephone: 01452 790178
MLD UK promotes public awareness of Manual Lymphatic Drainage (MLD) from the point of view of both the patient and practitioners for people with lymphoedema. They publish a register of practitioners of MLD.
PO Box 14491
Fife, KY6 3YE
Tellephone: 0844 800 1988
Breast Cancer Care provides breast cancer information and support across the UK. All services are free and include a helpline, website, publications and practical and emotional support. It runs sessions about lymphoedema around the country. Each session includes information about the prevention and management of lymphoedema. Looking at signs and symptoms, practical self-help approaches that may reduce the risk of lymphoedema, and how to manage lymphoedema if it occurs.
Helpline: 0808 800 6000 (Monday to Friday, 9am to 5pm and Saturday, 10am to 2pm)
Telephone: 0345 092 0800 (general enquiries)
Organisations that can help with issues of sex and sexuality
Offers private and confidential counselling, and psychosexual therapy to help with relationship problems.
Telephone: 0300 100 1234
Information on sexual problems. They provide lists of local specialist practitioners, as well as factsheets on problems such as erectile dysfunction (impotence).
Suite 301, Emblem House
London Bridge Hospital
27 Tooley Street
Telephone 020 7486 7262 (Mon, Wed and Fri, 9am to 5pm)
This organisation provides a telephone helpline staffed by nurses. They can give you information and advice about all aspects of prostate cancer, including erection problems.
The Counting House
53 Tooley Street
Telephone: 0800 074 8383 (Mon to Fri, 10am to 4pm and Wed, 7pm to 9pm)
Books for people with advanced cancer and their carers
The complete guide to relieving cancer pain and suffering
Richard B Patt and Susan S Lang
Oxford University Press, 2006
Written to help people with cancer and their close friends and family make decisions about living with cancer and managing symptoms. Some sections are specific to the US. But it is still helpful for people in the UK.
Dying well: a holistic guide for the dying and their carers
Gaia books, London, 1997
This guide shows how openness, advance planning and the use of complementary therapies can benefit dying people. It covers therapies, exercises and perspectives on death, emotions, attitudes and intimate needs. An extensive resources section tells readers where to find more help and support.
The good funeral guide: Everything you need to know
Bloomsbury Publishing, 2010
This practical guide talks about the choices you have when arranging a funeral. It covers all aspects of planning a service and creating a ceremony that both commemorates and celebrates a life, and provides comfort, inspiration and good memories.
Booklets available from Macmillan Cancer Support
Practical help in advanced cancer (available in audio tape and Braille)
When someone with cancer is dying
Emotional support in advanced cancer
Coping with advanced cancer
Guidance from the British Medical Association, the Resuscitation Council (UK) and the Royal College of Nursing
Decisions Relating To Cardiopulmonary Resuscitation
Caring for someone who is dying (Carer's handbook)
Age Concern Books, revised 3rd edition 2003
Combines practical information about money and legal matters with coping with the illness and issues of grief and bereavement. Talks about the role of hospitals, hospices and community cancer care teams. Has some carer’s stories.
I don’t know what to say: how to help and support someone who is dying
Key Porter Books, 20005
Helps family, carers and friends support and care for a dying person. Discusses how to talk and listen and outlines the dying process.
Caring for dying people of different faiths (3rd edition)
Radcliffe Publishing Ltd, 2004
A helpful, practical book that discusses the issues that arise when looking after people from different faiths and cultures. Looks at Jewish, Islamic, Hindu and Buddhist faiths.
Caring for someone at a distance
Age Concern books, 2nd revised edition 2003
Has information and practical advice for people caring for someone who lives some distance away. Has information on keeping in touch, financial support, and caring for physical and emotional needs.
Booklets available from Macmillan Cancer Support
Help with the cost of cancer: a guide to benefits and financial help for people affected by cancer
Caring for someone with advanced cancer
End of life: the facts
Macmillan Cancer Support and Marie Curie Cancer Care, 2011
Helps patients and carers to know what to expect when someone nears the end of life. Covers being looked after at home, the last few weeks and days, nearing death, and care after death. Covers practical and emotional issues. Available from Marie Curie Cancer Care.
The Natural Death Handbook (5th edition)
Natural Death Centre Staff, 2012
This book has comprehensive information about arranging funerals and working with funeral directors to get the best care. It covers preparing for dying, caring for a dying person, drawing up a will, living wills and memory boxes.The 5th edition contains more detailed information and includes essays on dying by various well-known authors. Available from the Natural Death Centre.
Meetings at the edge: dialogues with the grieving and dying, the healing and the healed
Knopf Doubleday Publishing Group, 2010
Sensitively explores all aspects and issues of death, especially the feelings and emotions people could have and how to deal with them.
Mind of clear light: advice on dying and living well
His Holiness the Dalai Lama and Jeffery Hopkins
Atria Books, 2004
Discusses how to approach death as a natural part of life. It is written in a warm, humorous and sensitive style.
Beyond fear (20th anniversary edition)
Harper Perennial, 2011
This book discusses fear of loss, bereavement, old age and death, and has guidance on how to work with fear. Written by a psychologist.
Booklet from Macmillan Cancer Support
- End of life care: a guide
What to do after a death in England and Wales
Department of Work and Pensions, March 2016. Available from the Department of Work and Pensions website.
What to do when someone dies
Which? Essential guides, 2009
Covers the law and describes issues you need to be aware of. Has a list of useful addresses.
Death and bereavement across cultures: Second edition
Colin Murray-Parkes, Pittu Laungani and William Young
Taylor and Francis Book TD, 2015
Discusses beliefs about death and mourning and how people use ritual to cope with death.
Succession, Wills and probate (3rd edition)
Caroline Sawyer and Miriam Spero
Covers the law and issues you need to be aware of when dealing with wills and probate. Also discusses what happens if there is no will.
Royal Society of Psychiatrists
This sensitively written booklet discusses adult bereavement in a light-hearted way. Available from The Royal Society of Psychiatrists.
The empty bed: bereavement and the loss of love
Darton, Longman and Todd, 2005
ISBN 10: 0232526397
Covers the death of a partner and the effects this has. Looks from the point of view of various groups of people.
What on earth do you do when someone dies?
Describes the emotions people have after the death of a close friend or relative and advises how to cope.
The bereaved parent
Harriet Sarnoff Schiff
A sensitively written book that discusses all the issues that affect parents who have lost a child. Contains many personal accounts.
Straight talk about death for teenagers: how to cope with losing someone you love
Beacon Press, 2014
Discusses how teenagers can talk about and cope with grief after the death of a close friend or relative.
Books about cancer in general
Everyone's Guide to Cancer Therapy (5th edition)
Andrew H Ko, Malin Dollinger and Ernest H Rosenbaum
Publishers: Andrews McMeel Publishing, 2008
This book covers how cancer is diagnosed, treated, and managed day to day.
100 Questions and Answers About Cancer Symptoms and Cancer Treatment Side Effects (2nd edition)
Joanne Frankel Kelvin and Leslie B Tyson
Publishers: Jones and Bartlett Publishing, 2010
An American book which gives both doctor’s and patient’s views on coping with the symptoms of cancer and the side effects of treatment. It has information about treatment for pain, nausea, tiredness, and other symptoms.
100 Questions and Answers About Caring for Family or Friends With Cancer (2nd edition)
Susannah Rose and Richard Hara
Publishers: Jones and Bartlett Publishing, 2009
An American book which gives information about caring for someone with cancer, including how to support them when they have symptoms or side effects.
How to Eat Well When You Have cancer
Sheldon Press, 2012
Written by a cancer dietician, this is a practical nutritional handbook for people with cancer. Filled with helpful tips and recipes.
The Mindful Way Through Depression
Mark Williams, John Teasdale, Zindel Segal, and Jon Kabat-Zinn
Publisher: The Guilford Press, 2007
An American book, but 2 of the authors are British researchers who are helping to promote mindfulness based cognitive therapy courses for people experiencing stress and depression in the UK. A CD of guided meditations is included with the book.
Lymphoedema: Advice on Self-management and Treatment
Peter Mortimer and Jacqueline Todd
Beaconsfield Publishers Ltd (2007)
Sexual Health – The Practical Guide to Sexual Health and Enjoyment
Dr Ian Banks
J H Haynes & Co Ltd, 2009
ISBN 1 844 258 084
Written by a doctor, this book includes information on health problems that may affect your sex life. Written with humour and compassion.
Relationships, Sex and Fertility for Young People Affected by Cancer
Macmillan Cancer Support
This booklet offers information to young people about all aspects of sex and relationships and discusses the effects of cancer treatment on fertility. It also has coping strategies and options for fertility treatment in people whose fertility is affected.
Available free to people affected by cancer from Macmillan Cancer Support by calling 0808 500 800.
Sexuality and Intimacy for Cancer Patients and Their Partners
Sexual Advice Association
This booklet aims to help cancer patients and their partners understand sexual difficulties that may happen after cancer and ways of overcoming them. Available on the Sexual Advice Association website.
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