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Support and information glossary

Support

An ovarian cancer diagnosis can impact many different aspects of a person's life - from family planning, to living well, to managing practical matters around work and finance. 

It's important that you feel informed and supported on the issues that matter to you, throughout your cancer journey. We've put together a list of organisations that offer general support to cancer patients and their families, as well as groups that provide expert guidance on specific topics, in case you're looking for tailored advice. 

Please note that due to COVID-19, some of these groups may have adapted the support services they offer, and the way they're running them for patients.

Coronavirus (Covid-19) guidance and support

Visit our Covid-19 Information Hub for the latest guidance and advice during the pandemic. You'll find national and regional information for people with ovarian cancer and advice for people with a high genetic risk of cancer.

Sign up to our patient newsletter if you’d like us to keep you up to date with the latest patient advice, information from clinicians, and tips on wellbeing during this difficult time.

Macmillan gives up-to-date guidance on the Coronavirus for people with cancer on their website.  

You can also create your very own Coronavirus guide with information that's tailored to your current situation and needs. Click here and answer five quick questions to get your personalised guide.  

Education Programmes for Patients (EEP) Cymru provides a fantastic range virtual health and well-being courses for people living with a health conditions for free across Wales. EEP Cymru offer a six-week course 'Thriving & Surviving: Dealing with life after cancer'

Click here for a full list of courses and to sign up for a virtual wellbeing course.

Ovarian cancer support in other languages

Ovacome has set up six phone lines to provide support (via an interpreter) for anyone concerned they have symptoms of ovarian cancer, in these languages: 

  • Arabic: 0121 647 6630
  • Bengali: 0121 647 6631
  • Gujarati: 0121 647 6632
  • Polish: 0121 647 6633
  • Punjabi: 0121 647 6634
  • Urdu: 0121 647 6635

Click here to learn more about the information Ovacome offers in these languages.

Ovacome has created a number of helpful leaflets and short informative films in Polish, Punjabi, Urdu, Bengali, Gujarati and Arabic, to raise awareness of the signs and symptoms of ovarian cancer among people from diverse communities. 

You can find more information and download the resources on Ovacome's website.

To request printed ovarian cancer awareness leaflets in any of the community languages, please fill in the form on the Ovacome website, contact i.stone@ovacome.org.uk, or call 0800 008 7054.

General support & information on ovarian cancer 

Ovacome is the national UK ovarian cancer support charity that provides support and information to everyone affected by ovarian cancer. 

The Ovacome Support Line is available Monday-Friday, 10am-5pm. Call 0800 008 7054 for information and emotional support on all aspects of ovarian cancer. 

My Ovacome forum is an online community for anyone affected by ovarian cancer. It is a safe and supportive space for women with ovarian cancer, and their friends and families to share their experiences, and offer each other encouragement, knowledge, understanding and friendship. 

Ovacome also hold regular support events for women diagnosed with ovarian cancer and their families. These include regional support events, The Ovacome Choir and Health and Wellbeing Days. Click here to find out more. 

You can email Ovacome at support@ovacome.org.uk, text on 07427390504, and Skype at ovacome.support. 

Macmillan offers a wide range of support including information, support centres, online communities and an advice line. Their website features a search facility where you can type in phrases such as 'talking to children', 'work and cancer', 'if you are self-employed' and 'benefits and advice' to get more information on these topics. 

You can call Macmillan's Support Line for free on 0808 808 00 00 (7 days a week, 8am-8pm). 

Maggie’s centres provide free practical, emotional and social support to people with cancer and their family and friends including practical advice about benefits and eating well, emotional support and places to meet other people. 

Maggie's Online Centre offers the same free practical, emotional and social support.

You can call Maggie's on 0300 123 1801 or visit one of their 21 centres which you can find here

Paul's Cancer Support Centre is a London charity that offers a range of community-based care and support services to help people affected by cancer. Visit their website to find out more, or contact their Wellbeing and Support Officers on 020 7924 3924 (between 10am-1pm and 2pm-5pm, Monday to Friday) or at support@paulscancersupport.org.uk

Talking about your diagnosis 

Macmillan has excellent guides on talking to children about cancer. Search 'talking to children' at www.macmillan.org.uk

Fruit Fly Collective provides The Cancer Cloud Kits, a group of toolkits created for children, or young people, who are affected by a parent being diagnosed with cancer. 

Younger women 

Shine Cancer Support is supporting young adults in their 20s, 30s and 40s living with any type of cancer diagnosis. Shine creates tailored events and get togethers allowing people to meet with others in a relaxed way.  

The Willow Foundations is a national charity that provides psychological and emotional support for seriously ill 16 to 40 year olds through the provision of special day experiences. Every special day aims to provide them and their loved ones with a break from the realities of their diagnosis and treatment. Spending quality time with family and friends can help restore a sense of normality, boost confidence and create precious memories for the future. 

A Younger Woman's Guide to Ovarian Cancer is a booklet for women diagnosed with ovarian cancer at a younger age. Created by Ovarian Cancer Action, Ovacome, Target Ovarian Cancer and The Eve Appeal, the guide deals with the physical, psychological and emotional effects of diagnosis and treatment. It features expert advice and stories from women who have experienced ovarian cancer at a younger age. Dealing with your diagnosis and telling others; body image and sexuality; and where to go for practical and financial support are all addressed in the guide. 

Early menopause 

The Daisy Network is a support group for women who have experienced a premature menopause. They aim to provide a support network of people you can talk to, allow members to share information about their personal experience of premature menopause, provide information on treatments and research within the fields of HRT and assisted conception and raise awareness of the condition among GPs, the broader medical community and policy makers. 

The Menopause Exchange gives independent advice about the menopause, midlife and post-menopausal health. They send out a free quarterly newsletter with useful impartial help and support. 

Menopause Matters

https://www.menopausematters.co.uk/

is an independent website that provides up-to-date information on the menopause, menopausal symptoms, and treatment options.

My Menopause Doctor is run by GP and menopause specialist, Dr Louise Newson. It offers lots of information about the menopause, HRT, and the alternatives, to help empower women to understand and manage their menopause. 

To find your nearest BMS-recognised menopause specialist, simply enter your postcode in the BMS search function, select your chosen filters, and click 'search'. 

Menopause Support is a not for profit community interest company and the home of the national #MakeMenopauseMatter campaign, both founded by Diane Danzebrink. Menopause Support provides private support via telephone and video consultations, bespoke menopause training and support solutions for businesses and organisations and menopause training days for therapists and well-being professionals.

There are lots of free resources available on the website, plus details of the closed Facebook group, The Menopause Support Network.

Fertility and family planning 

The Human Fertilisation and Embryology Authority regulates and licenses fertility clinics. You can find out more about IVF techniques, how long treatment may take, how to find a clinic and the costs on their website

The Hysterectomy Association aims to provide clear, concise information about hysterectomy and related issues for women undergoing, or planning to undergo, surgery. This is to ensure that women make informed choices about their surgery. Visit their website to find out more. 

The British Infertility Counselling Association (BICA) is the professional association for infertility counsellors and counselling in the UK and can help find a counsellor near you.

Surrogacy UK is a charity that provides information and support to help those going through surrogacy. They also have a community of surrogates, intended parents and families, with social events most weekends. 

CoramBAAF is an independent membership organisation for professionals, foster cares and adopters, and anyone else working with or looking after children in or from care, or adults who have been affected by adoption. 

Parenting With Cancer is a project with a comprehensive programme of support for parents living with cancer, or who have previously had cancer. You'll find workshops, coaching, resources and a wealth of '3am worries' to read through.

Genetic cancer risk 

Visit our Hereditary Hub for a list of the expert organisations and support groups that can help you understand, manage, and make informed decisions around your genetic risk. 

Jewish cancer care 

Chai Cancer Care provides comprehensive, professional and expert services to any member of the Jewish community affected by cancer - patients, their families and friends. They have ten sites across the UK. For any inquiries please call 0208 202 2211.  

Living well with cancer

Curve.life is a great online resource home to lots of information on a range of topics that helps cancer patients feel better and live longer, whatever the prognosis. The information is easy to understand, based on the latest research, and focused on the things that patients and their families can do alongside their medical team to help them live well.

Look Good Feel Better in an international cancer support charity that helps boost the physical and emotional wellbeing of people undergoing cancer treatment. They offer support around managing the visible side effects of cancer, running free confidence boosting Workshops for anyone undergoing treatment for any cancer type. Workshops and Masterclasses are available in hospitals, cancer support centres and community groups across the UK.

Look Good Feel Better has also created lots of printed materials and online tutorials for those unable to attend a session or would like extra advice. 

Penny Brohn UK is a Bristol charity offering complementary cancer care. They offer Living Well services in locations throughout the country

Untire is a self-help app that supports cancer patients and survivors with cancer-related fatigue (CRF) – a condition experienced by many patients undergoing cancer treatment or in recovery. The app features lots of useful videos, tutorials and daily tips to help patients understand and regain their energy levels. 

From 1st June 2020, you will need an access code to use the Untire app. You can download the app for free from the App Store or Google Play, and start using it once you have registered using an access code. Please contact info@ovarian.org.uk to request a code. 

Work and finance 

Macmillan has lots of information about managing your work with a cancer diagnosis. Visit their website for a range of up-to-date information. You can also visit a local centre or call their free support line on 0808 808 000 (7 days a week, 8am-8pm). 

Maggie's offers confidential advice about benefits you may be entitled to. You can contact a Maggie's Benefits Advisor at your local Maggie's Centre or online

Citizen's Advice provides free independent and confidential advice online and in over 3,500 locations in the UK. 

The UK Government website has a section dedicated to disability-related financial support. The information covers a wide range of support, including benefits such as Employment and Support Allowance (ESA) the Blue Badge for parking. 

Local cancer care and support 

Cancer Care Map is an online directory, developed by Dimbleby Cancer Care, that helps people find cancer care and support services in their local area. 

Macmillan has local information and support centres all over the UK. The centres have a team of experts and trained volunteers who can help answer your questions. You can also find free information booklets, leaflets and other sources of information. Use Macmillan's local area search to find your nearest centre and  support group. 

Maggie's offers free practical, emotional and social support to people with cancer and their families and friends. Visit one of their local centres, which you can find here

Parenting with Cancer

Parenting with Cancer is a website with resources, support, guidance, tips, advice for parents living with cancer.