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 of 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.
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 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 – local rates apply from a landline
Mobile number: 01772 675040
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
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)
This organisation provides information and support for people who need artificial feeding. They also have regional support groups for PINNT members.
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)
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.
The BLS is mainly for health professionals caring for people with lymphoedema. They aim to encourage research and produce guidelines.
Telephone: 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. 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).
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 from libraries, bookshops or online booksellers
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.
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.
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.
Sheldon Press, 2012
Written by a cancer dietician, this is a practical nutritional handbook for people with cancer. Filled with helpful tips and recipes.
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.
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.
Peter Mortimer and Jacqueline Todd
Beaconsfield Publishers Ltd (2007)
Books about sex and cancer
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.
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.
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.
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.
Booklets and factsheets from other organisations
Booklets and CDs available from Macmillan Cancer Support. Examples include:
- Managing breathlessness
- Relax and breathe CD
- Controlling cancer pain
- Controlling the symptoms of cancer
- Coping with hair loss
- Coping with fatigue
- Healthy eating and cancer
- How are you feeling? The emotional effects of cancer
- Understanding cancer research trials (clinical trials)
- Understanding lymphoedema
- Managing Cancer Pain – information for patients
- Help the Aged – Pain in Older People: Reflections and Experiences from an older person's perspective
- Intrathecal drug delivery systems for treating pain and spasticity – information for patients
- Managing pain effectively using over the counter (OTC) medicines
- Pain management programmes for adults – information for patients
- Pain and problem drug use – information for patients
- Spinal Cord Stimulation for pain – information for patients
- Use of medicines outside of their UK marketing authorisation in pain management and palliative medicine – information for patients
- Opioid medicines for persistent pain – information for patients
- Understanding and Managing Pain
- Turning it Around – Cancer and Nutrition (DVD)
- My name is NOT cancer – a leaflet which aims to help people understand a little of what it is like to have cancer and to attempt to not be defined by it
- Teenage lymphoedema
- Early childhood lymphoedema
- Head, face and neck lymphoedema
- Genital lymphoedema
- Management of oedema in advancing disease
- Multi layer lymphoedema bandaging (MLLB)
- Emotional and social aspects of lymphoedema
- The use of KinesioTape in lymphoedema management
- Management of cellulitis in lymphoedema
- Skin care
- Healthy eating
- Recreational exercise with lymphoedema
- Holidays and travel
- Reducing the risk of lower limb lymphoedema
- Swollen feet and legs
- The use of compression garments in lymphoedema management
- Manual drainage for people with lymphoedema
- What is cellulitis
- General information about lymphoedema
- Reducing the risk of upper limb lymphoedema
- Breast and truncal oedema
- Coping with lymphoedema following a mastectomy or lumpectomy
- Lymphoedema associated with chronic venous insufficiences
- Diuretics and lymphoedema
- Self management techniques for arm lymphoedema
- Self management techniques for leg lymphoedema
- Living with lymphoedema after breast cancer (BCC5)
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