Living well with a life-limiting illness
- Coming to terms with the shock of diagnosis
- How to share your diagnosis with others
- How to create and preserve happy memories for loved ones
- Finding emotional and wellbeing support
- Compassionate Communities
Coming to terms with the shock of diagnosis
A life-limiting illness (also referred to as a terminal illness) is a disease or condition that can’t be cured and is likely to cause death within a limited period of time. It can be difficult for doctors to predict how long someone will live for as it can depend on their diagnosis and any treatments they may be receiving. People with a life-limiting illness may live for days, weeks, months or sometimes years.
Everyone will have their own way of coping with the news that they have a life-limiting illness and there is no right or wrong way to feel or react. You might feel numb at first and unable to take in the news, and as time passes you may experience a range of emotions that can feel overwhelming. You may also feel isolated and alone, even if you have family and friends around you.
Whatever you feel, you do not have to go through it alone.
The NHS website has information about your feelings, how best to cope when getting your diagnosis, who to talk to about your questions and worries for the future, and ideas on how best to live well with a life-limiting (terminal) illness:
Marie Curie provides information about what a life-limiting (terminal) illness is, along with a booklet about support for you and those close to you which you can order or download from their website:
- mariecurie.org.uk – What does terminal illness mean?
- mariecurie.org.uk – Living with a terminal illness
Marie Curie Nurse, Fiona Morton has published a blog post about what she has learned through working in a hospice about how people can learn to cope with their diagnosis:
Cancer UK has information for those with a terminal cancer diagnosis which may help with thinking through how you might feel, talking about your diagnosis and staying hopeful:
Compassion in Dying is a national charity that supports people at the end of life to have what they consider to be a good death, by providing information and support on their rights and choices.
You can view, download or order a copy of their booklet which provides information to help you make treatment and care decisions that are right for you. It will help you think through what you want to know, and offers ideas for questions to ask so you get the information you need. It also shares experiences and advice from other people who have lived with terminal (life-limiting) illness:
How to share your diagnosis with others
Telling the people you love that you have a limited time to live can be one of the hardest things you’ll ever have to do, particularly when you are trying to cope with the news yourself.
The Sue Ryder website provides advice on who to tell, when might be a good time to do it, what to say, how to say it, and also how people may react:
The Telegraph website posted an article written in association with Marie Curie on 18 Dec 2018, where a doctor and patient tell their stories about sharing a terminal diagnosis:
How to create and preserve happy memories for loved ones
Marie Curie provides ideas on how to leave behind memories for your loved ones on their website:
Cancer UK have ideas on leaving memories for the people you love and dealing with any unfinished business on their website:
Finding emotional and wellbeing support
Family and friends can offer great emotional and wellbeing support but there are times when it is it easier to relate to someone you don’t know, such as another person in a similar position as you, your local hospice or a support organisation’s helpline.
Marie Curie’s support line provides both practical and clinical information along with emotional support if you’re living with or caring for someone who has a life-limiting (terminal) illness. Marie Curie also has an online community which provides a space for you to share thoughts, feelings and experiences with others in a similar position:
- mariecurie.org.uk – Marie Curie Support Line Tel: 0800 090 2309
- community.mariecurie.org.uk – Marie Curie Online Community
St Elizabeth Hospice provides emotional wellbeing and spiritual care to help
patients and families with the emotional aspects of facing life with an illness. The 565 Service provides emotional support for children, young people and families living with a family member with progressive illness:
Macmillan’s support line offers confidential support to people living with cancer and their loved ones. If you are worried about money, work or treatment, or you just want to speak about whatever matters to you, they will listen, offer guidance and help you find the right information and support in your area, including support groups. Macmillan also have an online community where people living with or who are affected by cancer can chat about the issues affecting them:
- macmillan.org.uk – Macmillan Support Line Tel: 0808 808 0000
- macmillan.org.uk – Macmillan Online Community
- macmillan.org.uk – Local Cancer Support Groups
The Norfolk and Suffolk NHS Foundation Trust (NSFT) provides a 24/7 helpline called First Response. It offers immediate advice, support and signposting for people with mental health difficulties and is available to members of the public of any age, regardless of whether they are an existing NSFT service user:
- nsft.nhs.uk – First Response 24/7 Helpline Tel: 0808 196 3494
The Faith and Spirituality Network (Suffolk) is a small unincorporated charity set up to bridge the gap between those who describe themselves as religious and may belong to a faith community, and those who see themselves as having a spiritual dimension to their lives, whether or not they adhere to a particular religious tradition:
The Peninsula Practice (Alderton, Aldeburgh, Orford and the surrounding areas) is developing a Compassionate Community, under the expert guidance of senior partner Dr Lindsey Crockett, to strengthen the level of support available to local people at the end of their life, and their families. The project aims to support people to live their lives fully before they die, providing companions for people and families affected by life-limiting illness, and starting conversations about end of life.
A number of volunteers are being trained as Compassionate Companions to offer a listening ear, practical support and non-medical advice to anyone with a life-limiting illness in east Suffolk. If the project proves a success, it is hoped that more Compassionate Communities will be developed in the area.
For more information visit the Compassionate Communities website: