There are lots of organisations, support groups and helpful books to help you cope with lymphoedema caused by cancer or its treatment. Lymphoedema means swelling of part of the body caused by a build up of lymph fluid.
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.
Lymphoedema and symptoms organisations
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.
Telephone: 020 7351 0990 (Administration)
The BLS is mainly for health professionals caring for people with lymphoedema. They aim to encourage research and produce guidelines.
Telephone: 01452 790 178
A registered charity that aims to improve understanding, awareness and knowledge of lymphoedema. They actively contribute to the improvement of the management of lymphoedema worldwide, especially in developing countries. They have a number of booklets that you can download free of charge.
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.
Telephone: 0131 669 5951
Helpline: 0300 123 0789 (Monday to Friday, 10am to 4pm)
Cancer type organisations
Breast Cancer Care provides breast cancer information and support across the UK. All services are free and include a helpline and a website. It offers practical and emotional support to people affected by breast cancer and their partners. It also gives information about mastectomy wear (including bras and swimming costumes).
Tel: 0808 800 6000
Tel: 0808 171 2455
This organisation offers support to people affected by melanoma. It has a free phone line available 24 hours a day that is run by volunteers who have personal experience of melanoma. It also has a network of people affected by melanoma who it can put you in touch with. It organises support meetings every few months at various places in the UK.
This organisation provides information about cervical cancer and runs a helpline staffed by volunteers who have had experience of cervical cancer or abnormal cervical cells. It also has a confidential medical enquiry service. The website has an online forum where you can exchange experiences and information with others who have cervical cancer.
On the Jo's Trust website you can watch a video about having cervical screening.
- how you receive your invitation for screening
- why it is important to go for your screening appointment
- what happens at the appointment
- what the results mean
Phone: 020 7250 8311
Helpline: 0808 802 8000
General support and information organisations
For general health advice and information.
NHS 111 gives information if you need fast medical help but its 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 improves the lives of people affected by cancer. They provide 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.
Phone: 0808 808 0000 (Monday to Friday, 9am to 8pm – information available in other languages)
Textphone: 0808 808 0121
Organisations that provide garments and 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.
Phone: 0845 5194734, Monday to Friday, 9am to 5pm – local rates apply from a landline
Mobile number: 01772 675 040
Kinesio UK provides various training courses in kinesio taping as well as kinesio tape products.
Tel: 0191 2877008
LympheDIVAs is an American company that provides high quality, medical arm sleeves, gauntlets and gloves for lymphoedema. The garments are fashionable with a variety of different patterns.
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).
Telephone 020 7486 7262 (Monday, Wednesday and Friday, 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.
Telephone: 0800 074 8383 (Monday to Friday 10am to 4pm and Wednesday 7pm to 9pm)
Books about cancer
Lymphoedema: Advice on Self-management and Treatment
Peter Mortimer and Jacqueline Todd
Beaconsfield Publishers Ltd (2007)
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.
Complete Guide to Nutrition for Cancer Patients: Eating Well, Staying Well During and After Cancer (2nd edition)
Abby Bloch, Barbara Grant, Kathryn Hamilton and Cynthia Thomson
Publisher: American Cancer Society, 2009
An American book, but most of the information is relevant to the UK. It covers issues such as preventing weight loss and coping with dehydration, fatigue, and infection. It also discusses eating problems and digestion issues, such as swallowing problems, feeling sick and dealing with mouth sores. Focuses on survivorship and how to eat well after treatment.
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.
Intimacy After Cancer – A Woman’s Guide
Dr Sally Kydd and Dana Rowett
Big Think Media, 2006
ISBN 0 9788108 0 5
This American book has information about sexuality after a diagnosis of cancer and its treatment. It includes information about how you may feel and offers some helpful solutions in maintaining or regaining intimate relationships. As an American book it is only available from online book suppliers.
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