There are lots of organisations, support groups and helpful books to help you cope with symptoms and side effects caused by cancer and its treatment.
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 prevention and treatment.
We are committed to producing high quality information for people affected by cancer. As well as looking at the information on this website you can call our nurse freephone helpline on 0808 800 4040. They are available from Monday to Friday, 9am to 5pm. Or you can send them a question online.
Cancer Chat is our online forum where you can share experiences.
General support and information organisations
Macmillan Cancer Support is a charity that gives practical, medical and financial support to people with cancer in the UK. Its helpline gives guidance on cancer and advice on benefits. It also publishes booklets about cancer and treatments. Information is available in other languages.
Freephone: 0808 808 00 00 (7 days a week, 8am to 8pm)
Contact email form
The Loss Foundation helps support those who have lost loved ones to cancer. They have support groups in London and have other supportive events. They provide bereavement information on their website to support those who live too far to attend the support groups.
Phone: 0300 200 4112
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.
Provides free advice about money, legal issues, housing health and social welfare issues.
Cruse provides bereavement counselling. It offers help, support and information to anyone facing bereavement or who have been bereaved. It has a network of local branches throughout the UK.
Helpline: 0808 808 1677
Grief encounter is one of the leading providers of support services for bereaved children and their families throughout the UK. Their website has resources and information for bereaved children and teenagers.
Helpline: 020 8371 8455 (Monday to Friday, 9am to 5pm)
This site is designed to guide you through the practical side of bereavement. It has advice on arranging a funeral and dealing with the legal and financial issues. They offer a service to stop your loved ones unwanted mail after their death.
Telephone: 0800 0246 121 (Monday to Friday 9am - 6pm and Saturday 9am - 4pm)
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.
Organisations for carers
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 for a family member or friend who is ill, disabled or has mental health or addiction problems. 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.
Phone: 0300 772 9600
Organisations that provide equipment
You can borrow toileting aids or a wheelchair short term from The British Red Cross. This might be for free, or they may ask for a donation in your area.
There are many commercial companies that sell equipment online, via catalogues or in shops. Here are some tips when shopping around:
- Ask an occupational therapist what they think might be best to meet your needs – your Nurse Specialist, district nurse or GP can refer you to an occupational therapist if you don’t have one
- Compare prices between different companies
- Check if you can return the item if it’s not exactly what you are looking for (this is usually if it is unused and in its original packaging)
- Look for a number to call if you are unsure about how to safely fit or use the equipment
The Disabled Living Foundation has an advice and information service on their website. This can help you when you’re looking for a specific piece of daily living equipment. They offer impartial advice and suggestions of equipment from reputable companies. You can also call them for advice.
Specific symptoms organisations
The Bladder and Bowel Community 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 when you are out. It's free to order on the website.
17 High Street
General enquiries: 01926 357220
This is a UK support group for people with a colostomy. It provides information and support, as well as booklets to anyone who has or is about to have a colostomy.
95 London Street
Tel: 0118 939 1537
Free helpline: 0800 328 4257(24 hrs a day, 7 days a week)
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.
Helpline: 0300 123 0789 (Monday: 2pm to 4pm and Friday: 10am-12pm & 2pm-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
Telephone: 020 3004 6193
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 4480
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. Their head office is in Denmark.
Tel.: 0045 7020 0305 (International phone number from the UK)
A charitable membership body of health care professionals with an interest in the care and support of people with lymphoedema. Their resources include a directory of lymphoedema specialist practitioners.
Tel: 01452 790 178
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.
Helpline: 0808 800 6000 (Monday to Friday, 9am to 5pm and Saturday, 10am to 2pm)
Telephone: 0345 092 0800 (general enquiries)
Organisations that give information
Age UK provides information, advice and support for people in later life.
1– 6 Tavistock Square
Advice line: 0800 678 1174
Scotland helpline: 0800 12 44 222
Provides information around the rights and choices associated with having 'a good death' as well as free templates for compiling an advance decision. Also conducts research into rights and choices at end of life.
Phone: 0800 999 2434, open Monday to Friday, 10am - 4pm
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 radar keys that give access to toilets throughout the UK for people who might need to use a toilet in a hurry.
14 East Bay Lane
Queen Elizabeth Olympic Park
Phone: 0330 995 0404
Hospice UK answers enquiries about any aspect of hospice care. The website includes a directory of hospice services in the UK and Ireland.
34 - 44 Britannia Street
Telephone: 0207 520 8200
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.
Helpline: 0808 800 3333 (Mon - Fri, 9am - 5pm)
Books about advanced cancer
R B Patt and S 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
Bloomsbury Publishing, 2010
This practical guide talks about the choices available 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.
Books for carers
Age Concern books, 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.
About dying with cancer
The Natural Death Centre
Strange Attractor Press, 2012
These books have comprehensive information about arranging funerals and working with funeral directors to get the best care. They cover preparing for dying and 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.
Knopf Doubleday Publishing Group, 2010
Sensitively explores all aspects and issues of death. Especially the feelings and emotions people might experience when they or a loved one is dying.
His Holiness the Dalai Lama and J 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.
Harper Perennial, 2007
This book discusses fear of loss, bereavement, old age and death, and has guidance on how to work with fear. Written by a psychologist.
About coping after someone has died
Check what to do after a death, how to register the death, notify government departments and manage financial issues.
Which? Books, 2009
Covers the law and describes issues you need to be aware of. Has a list of useful addresses.
C Murray-Parkes, P Laungani and W Young
Discusses beliefs about death and mourning and how people use ritual to cope with death.
C Sawyer and M 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.
Darton, Longman and Todd Ltd, 2010
Covers the death of a partner and the effects this has. Looks from the point of view of various groups of people.
T Romain and E Verdick
Free Spirit Publishing Inc, 2003
Describes the emotions people have after the death of a close friend or relative and advises how to cope.
Harriet Sarnoff Schiff
Souvenir Press, 1979
A sensitively written book that discusses all the issues that affect parents who have lost a child. Contains many personal accounts.
Earl A. Grollman
Beacon Press, 1993
Discusses how to talk about and cope with grief after the death of a close friend or relative.
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