Decorative image

Resources and organisations

Organisations, support groups, books, videos and other resources to help you cope with Hodgkin lymphoma.
 

Cancer Research UK

Cancer Research UK is the largest cancer research organisation in the world outside the USA. We are the European leader in the development of new anti-cancer drugs. We fund research on all aspects of the disease from its causes, to treatment and prevention, education and psychological support for patients.

We are also committed to producing high quality information for people affected by cancer, health professionals and the general public. We do this through the About Cancer pages on our website, our news and resources, and our range of health awareness leaflets.

Cancer Chat is our free online discussion forum for people affected by cancer. It is a safe space to talk to other people in similar situations, and find information and support.

If you have a question about cancer, you can contact our team of specialist cancer information nurses. Call free on 0808 800 4040, 9am to 5pm, Monday to Friday. To talk in your preferred language, ask for our interpreting service. Or you can send us a question online.

Specific lymphoma organisations and sites

The Lymphoma Association gives emotional support and medical information on all aspects of Hodgkin and non-Hodgkin lymphoma. Their services are free to people with lymphoma and their family and friends.

They run local support groups for people with lymphoma around the country. They also have a buddy scheme for putting patients in touch with each other by phone. And they produce leaflets and a newsletter.

The Lymphoma Association online forum is is available 24 hours a day. It has designated chat times between 12 and 2pm, and 8 and 10pm, when you are likely to find the most people online.

Tel: 0808 808 5555 (9am to 6pm Monday to Thursday, 9am to 5pm Friday)
Email: information@lymphomas.org.uk

Bloodwise sponsors research into leukaemia, lymphoma and myeloma. It also provides patient information booklets and leaflets that you can download or order from their website. 

Bloodwise used to be called Leukaemia and Lymphoma Research.

Tel: 0808 2080 888 (Monday to Friday, 10am to 4pm)

The lymphoma section of Health Talk Online is based on themes that came out of research funded by Cancer Research UK. Around 40 people were interviewed to find out what it was like to have lymphoma.

The National Cancer Institute (NCI) is an American organisation that supports cancer research. They have information about all types of cancer, including Hodgkin lymphoma.

The Lymphoma Information Network is an American site, written by someone who has been through successful but intensive treatment for Hodgkin lymphoma. There is information about Hodgkin and non-Hodgkin lymphoma that is detailed and quite technical in places. Very thorough, with links and booklists.

General support organisations

Macmillan Cancer Support is a charity that gives practical, medical and financial support to people with cancer. Its helpline gives guidance on cancer and advice on benefits. It also publishes booklets about cancer and treatments.

Phone: 0808 808 0000 (Monday to Friday, 9am to 8pm; information is available in other languages)

Textphone: 0808 808 0121

Phone: 0300 330 0803

CLIC Sargent is a charity which provides clinical, practical, financial and emotional support for children and young people with cancer, and their families.

Phone: 020 7612 0370

A national charity providing specialist units, support, education and information for teenagers with cancer and their families. The TCT also funds research into young people's cancers. It holds annual conferences for teenagers with cancer and the health professionals who look after them.

Books about Hodgkin lymphoma

Dr Mark Gugliotti
iUniverse, 2009
ISBN-13: 978-1440134524

An American physiotherapist describes his personal experience of Hodgkin lymphoma.

Books about cancer and treatment

Judith Mackay, Nancee Hirano and Myles E. Lampenfeld
New Harbinger Press, 1998 (2nd revised edition)
ISBN 1572240709

Written by American oncology nurses, this book has practical tips for coping with treatment side effects.

N Keene and W Hobbie 
O'Reilly, 2012 (3rd revised edition)
ISBN 978-1-941089-10-1

This is a US book, so some of the information may not apply (future medical insurance for example). But it is the only book of its kind and has helpful information on coping with emotional and practical aspects of life after cancer.

Booklets and factsheets

These booklets can be ordered, or downloaded from the Lymphoma Association website. 

Young person's guide to lymphoma
Hodgkin lymphoma
Lymphomas – a general booklet for Hodgkin lymphoma and non Hodgkin lymphoma patients
Hodgkin lymphoma in children
Questions to ask your doctor or medical team
Steroids – a guide for people with lymphoma
Splenectomy and the risk of infection

These booklets can be ordered from Macmillan Cancer Support's website. Some are also available on CD.

A parent's guide to children's cancers
Diet and cancer 
Lost for words – how to talk to someone with cancer
Relationships, sex and fertility for young people affected by cancer 
Talking about your cancer 
Talking to children when an adult has cancer
Sexuality and cancer 
Understanding cancer research trials (clinical trials)
Understanding chemotherapy 
Understanding Hodgkin lymphoma
Understanding radiotherapy
Understanding high dose treatment with stem cell support

These booklets can be ordered, or downloaded from the Bloodwise website.

Undergoing high dose therapy and autologous stem cell transplant
Bone marrow and stem cell transplantation (BMT) – for children and adults
Hodgkin lymphoma
Donating stem cells – what's involved?

Videos of people's stories

Find out about the experience of living with and beyond cancer by seeing and hearing people share their personal stories on film. Healthtalk’s researchers created a library of interviews with people who have survived for 5 years or more after a cancer diagnosis.

Find out what people said about issues such as lifestyle choices, physical effects and the impact on work and family.

Go to the HealthTalk website

Find local cancer support and information services

NHS Choices has a service that tells you about local information and support.

Go to NHS choices website 

Information and help

Dangoor sponsorship

About Cancer generously supported by Dangoor Education since 2010.