I've just been told I have blood cancer

Finding out you have blood cancer is a life-changing event. So if at any time you're find you're struggling emotionally, it's completely understandable. But there are coping strategies you can try – it's about finding what works for you. Here are some places to find information and support, for yourself and for your family and friends too:

• Connect with people affected by blood cancer and get ideas and advice on our online community forum.
• Go to our online information and personal stories about coping emotionally with blood cancer.
• Contact our free Support Service – you don't need to have a particular reason, just tell us what's been happening and how you're feeling.
• Order free copies of our booklet Your blood cancer diagnosis: What happens now? which we created with people living with blood cancer.

Your medical team is there not just to support your physical health but also your emotional wellbeing. Don’t be afraid to start a conversation with them if you're struggling to manage difficult feelings. They won't be surprised and will do their best to help.

They may be able to refer you for counselling, which many people with blood cancer say they find helpful.

If you’ve just been diagnosed with blood cancer, you’ll have tests at key points to find out more about the cancer and how to treat it. You may be waiting for test results right now to confirm your diagnosis.

These times are always difficult, as waiting for test results usually means worrying about them.

Many people find the most helpful thing is to talk to someone. You can speak to your keyworker (usually a specialist nurse) or contact our Support Service free on 0808 2080 888 or [email protected]. They’ll be happy to listen and give you emotional and practical support.

You can also join our online community forum to talk to people who’ve been there and will understand how you feel.

It can be stressful having to explain your diagnosis to family, friends and colleagues. Some people feel guilty about upsetting the people closest to them, and it can be difficult to talk about something you don’t want to believe is happening to you.

It can help to get advice from someone who isn't directly involved, but understands your situation. You can find out how other people with blood cancer have handled these conversations on our online community forum. Or you can call our Support Service to talk through what you might say. They can recommend age-appropriate resources to help you tell children.

Here are some things people have told us were helpful for them:

• Be as honest as you can with children: As far as possible explain what's going to happen before it happens. Children can be very adaptable but many struggle with change, especially when it affects their parents or adults close to them. Be flexible and don't worry if things don't go to plan – it'll be a conversation you come back to many times.
• Keep a family journal: If it's hard for you or anyone else in your family to talk about your diagnosis, then it might be easier to share questions, thoughts and fears by writing them down in a book you can share.
• Set up a group chat: People will want to know how you are, especially if you're going through treatment. Setting up a WhatsApp group or Facebook page takes the effort out of updating people individually. You can hand responsibility over to a family member or friend if you like.
• Recommend reliable information: People may have lots of questions. A good way to answer these is to suggest reliable sources of information. You can send them a link to our online information about blood cancer or give them a copy of our free booklet Your blood cancer diagnosis – What happens now?

It’s OK if you don’t want to tell people about your diagnosis – it’s your choice. Your healthcare team can’t pass on any details of your diagnosis or treatment without your permission.

If you have children or are a carer for other family members, you’ll also be concerned about how your diagnosis will affect them.

Start by asking your healthcare team what your treatment plan is, and how it will affect your day-to-day life. There may be choices that will make life easier for you. For example, it might be possible to have some of your treatment locally if you’re under the care of a hospital that’s a long way from home.

Friends and family will want to help you – don’t be afraid to accept their offers. It's often a good idea to give people specific ways to help, such as asking someone to look into sick pay and other benefits you may be entitled to. Others may be able to help with childcare or caring for a relative. This could be on a regular basis or as a stand-by if, for example, you have an unexpected hospital stay because of an infection.

Giving people particular roles like this helps people feel useful, but makes sure they're doing the things you actually want help with.

We have more information for family and friends. They may also find it helpful to listen to our Blood Cancer Heart to Heart podcast where people share what it's like to have a loved one diagnosed with blood cancer.

If you don't have family or friends around you, talking to other people with blood cancer may help. Our online community forum is a safe place to share how you're feeling and get emotional support and guidance from people who understand. You might also want to find out more about emotional and practical support during the current coronavirus pandemic.

We still don’t know what causes most cases of blood cancer. We know that it starts with changes in our DNA that happen naturally in the course of a lifetime. These changes, called mutations, aren't inherited from our parents or passed on to our children.

DNA is like a set of instructions within every cell in your body, which tells your cells how to work properly. If there are mutations in your DNA, it means the instructions aren’t quite right and your cells can start growing out of control. This causes cancer.

With blood cancer, the cells growing out of control are usually in your blood, your bone marrow (where blood cells are made) or your glands (also called lymph nodes).

You can’t catch blood cancer or give it to someone else. To find out more about risk factors for different types of blood cancer, select a blood cancer type. Risk factors are things that may make it more likely for someone to get a particular disease. Generally, lifestyle choices don't play as big a role in blood cancer as they do with some other types of cancer.

If you're struggling to come to terms with your diagnosis, there is help at hand. You can speak to your medical team who are best placed to answer questions about your personal circumstances. You can contact our Support Service for general information and emotional support. You can also talk to other eople with blood cancer on our online community forum, or just read the helpful posts on there.

Some research studies have shown that people who have a family member with blood cancer may have a slightly higher chance of getting it than people who don’t have any family members with blood cancer. But the risk is small. It’s very unusual to find more than one person with blood cancer in the same family.

In a few rare cases, family members may need to have a blood test to check if there’s anything that makes it more likely for them to develop blood cancer. Most families won’t be offered tests because they don’t need them. If you’re worried about this, speak to your GP or medical team.