Newly Diagnosed Cancer Information Pack
This section of our website has information that you may find helpful to you throughout your cancer journey.
Your healthcare team may give you other information specific to your type of cancer you have as well as local support services.
You may not want to access all this information at one time but you can return to it at any time in your journey as you may find it helpful. Your family or carer may also find the information useful so you may like to share this page with them.
Information for you
Helping you to understand the wide range of information available for people affected by cancer
Being told that you have cancer can be very overwhelming. It is important that you have access to the right information. You may feel a range of emotions. These emotions can make it difficult to take in all of the information you are being provided with.
This information is designed to help you to understand the wide range of information available to you and where and how to find information.
What information is available for people affected by cancer
The following lists some of a wide range of information which may be relevant to you.
About your type of cancer
- Information about the type of cancer you have
- Websites that you may find useful
- Organisations that can offer you information.
- Talking about cancer
- Talking with children about cancer
- Living with cancer
- Dealing with any changes to your body or appearance
- Counselling and emotional support
- Organisations that offer you information and support
- Relationships and sexuality issues
- Help to give up smoking
- Complementary therapies
- Spiritual and/or religious support
- Getting back to ‘normal’
For Family and Friends
- Practical information and ways to get help
- Emotional support
- Finance e.g. insurance, benefits, grants and advice
- Travel, transport and maps
- Driving – factors that might prevent you from driving
- Help at home
- How to get a wheelchair
- Making changes to your home to meet your needs
- Managing changes to your appearance e.g. wigs and clothing
- Accessing your medical records
- Who to contact for advice if you think you are being discriminated against because of your cancer
- Making a will.
- Causes of cancer
- How cancer services are organised
- The roles of staff you may come into contact with
- Questions you may want to ask
- What the medical words mean
- Tests, treatments and care
- Agreeing to have tests and treatments (consent)
- Help with symptoms and side effects of treatment
- What to expect after treatment ends
- Clinical trials.
Where can you find information?
There are a range of sources where you can find information:
- Talk to your key worker. This may be a nurse, social worker, or GP
- Ask one of your healthcare team if there is a Macmillan Information and Support Service in your area
- Contact a cancer charity in your local area
- Search the internet
What about finding information online?
A search for a condition such as cancer can bring up thousands of results. A lot of these results are not based on evidence and are not reliable. Here are some tips to help you find reliable and accurate health information online.
Health information should be:
- Approved by a clinical expert
- Reviewed and updated regularly
- Non-commercial (not trying to sell you anything).
Health information should not:
- Claim to replace the advice given by a doctor
- Ask you to pay for a full emailed diagnosis.
When searching for advice on specific conditions search well-known organisations such as Cancer Research UK. Look for sites which end in:
- .org (not for profit organisations)
- .gov (government run websites)
- .nhs.uk (NHS websites)
- .hscni.net (Northern Ireland health service websites)
Cross-check the information. If the same details are repeated across many different websites there is a greater chance that the information is reliable and up to date.
How to find local services which offer information and support
There are a wide variety of services available in Northern Ireland which can provide you with information and support.
The ‘Cancer Survivorship Living with and beyond Cancer ’ website has been designed to help you find services that will help to meet your needs now and in the future:
This website provides a searchable directory of services in the areas of:
- Clinical Support Services
- Education and Information
- Physical Activity
- Other Support Services
There are 5 ways to search for services on this website:
- Services close to you (using your postcode)
- Services in your Health and Social Care Trust Area
- Services by name of provider
- Services that cover all places in Northern Ireland
- All services.
Please be advised not all organisations are linked with cancer but they provide services which may benefit people affected by cancer.
Websites you may find helpful
If you don’t have access to the internet
If you don’t have access to the internet you can try the following to help you find information:
- Ask a relative or friend to help you access the internet
- Contact your local Macmillan Support and Information service
- Talk to a member of your healthcare team who is looking after you, or contact your GP
- Contact a cancer charity within your local area
- Visit your local library.
Cancer Caring Coping
Cancer Caring Coping is an information and support website by caregivers, for caregivers.
Visit us online to see and hear the stories and experiences of real cancer caregivers who want to give support, advice and tips for coping in the caring role.
Importantly if you are a cancer caregiver, you will find guidance on how to look after yourself as well as your loved one.
Find the information at cancercaringcoping.com.
Macmillan Cancer Support - The Cancer Guide
Macmillan Cancer Support Cancer Guide booklet is for anyone who has been diagnosed with cancer. There is also information for carers, family members and friends.
The booklet explains what cancer is and what to expect when you have been diagnosed. It has information to help with emotional, practical and financial issues. It also explains where you can get more information and support.
You can access the booklet on the Macmillan Cancer Support website.
Macmillan Benefits Service Northern Ireland
Do you need help with the cost of cancer?
When you are affected by cancer, money worries can be confusing and overwhelming.
Research by Macmillan shows that many people affected by cancer experience a loss of income and/or increased living costs. The Macmillan Benefits Service in Northern Ireland is part of a wide range of services to help you find your best way through. It provides free, impartial, confidential advice and support to help you make sense of your finances.
Macmillan Benefits Service advisers are located within every Health and Social Care Trust in Northern Ireland and provide an integrated service to ensure that everyone affected by cancer can access the financial help they need. A telephone helpline is available and advisers can also arrange office appointments or ward visits so that you get the support you need in a way that suits you.
How advisers can help:
If you or someone close to you has recently been diagnosed with cancer, is going through treatment or is receiving end of life care, advisers can:
- Access your entitlement to means-tested and non means-tested benefits
- Help you to apply for a Macmillan Grant or other one-off grant payments
- Advise you about health costs such as travelling expenses
- Help you to apply for a Blue Badge
- Advise you about a social security decision and help you to challenge these
- Signpost you to other information and support services, for example, work support, transport, counselling services or help at home
Advisers can check if there are any benefits you might be entitled to based on your individual circumstances. You may still be entitled to benefits even if you have other incomes e.g. pensions.
Getting in contact
The Macmillan Benefits Service Helpline is open Monday-Friday 9am to 12.30pm and 1pm to 4pm.
You can self-refer by calling 0300 1233 233 (option 1) or email email@example.com. You can also ask your Macmillan key worker or specialist nurse to make a referral to the service on your behalf.