Tuesday 7th April 2020

Before you read this: Thinking about death and dying can be really tough – lots of people prefer not to, and that’s fine. So if you’re not sure it’ll help you to read about these issues, it might be a good idea that you don’t read the information on this page at the moment. You can come back to it any time you like.

Dealing with your emotions

At the moment you are told your treatment isn’t likely to work, you might become silent or feel like you’re not able to listen or focus anymore. You might start crying and feel like you’ll never stop. You might feel completely numb. Or you might feel calm and detached – that happens too.

Especially in the first few days, people often experience a whole range of different emotions. Some may come and go quickly. Others can last longer. These are some of the feelings that you might have:

Denial

Continuing to believe that your cancer can be cured and that everything will be OK isn’t unusual. It can provide a lot of comfort, and means you don’t have to think about what the news really means. But as time goes on, it may be harder to convince yourself that everything is fine. And denial can also stop you from doing and saying the things you most want to.

One other point worth making, though: sometimes people might think you’re in denial when actually you just want to focus on other things. You may want to spend time researching a holiday you know you might not be able to take, for instance, and that’s fine.

Anger

Most people feel angry at some point. You might get angry at your doctors or nurses, or at your friends and family, or at yourself. You might feel like the whole world is against you. It’s totally understandable. This is an incredibly unfair situation, and you might not be able to get over your anger completely. But finding a way to manage it will help you focus on other things. Here are some suggestions for dealing with anger.

Sadness

You probably don’t need us to tell you that you might feel really sad. That’s completely understandable. You might find you feel too low to share your feelings with others, so don’t let anyone pressure you into talking if you don’t want to. You don’t need to show anyone but sometimes it can help to write difficult thoughts down.

Detachment

It can be difficult and strange to look around and see people catching buses and going shopping and doing other everyday stuff. You might sometimes feel like those things are pointless now, and that you can’t really be bothered to do anything anymore. This is a common feeling – and often changes with time. Talking about how you’re feeling often helps.

Frustration

You might feel completely powerless, like your situation is totally out of your control and impossible to change. Not being able to do certain things if you’re feeling bad can also be really annoying. But you can still get involved in decisions about how and where you are treated, as well as choosing how you want to spend your time – which can help you feel less annoyed. Some people find it makes a big difference to stay in control of the things they can influence.

Fear

It’s only natural to have questions about death. When will it happen? Will it hurt? How long will it take? What will it be like? Will I know what’s happening? You can ask your doctors, nurses, youth support coordinator, youth worker, social worker, psychologist, counsellor, religious leader or hospital chaplain questions. They might not always be able to give you a specific answer, but it can still be helpful to have some information and to talk through the issues that are weighing on your mind.

Loneliness

You might feel that no one you speak to really understands what you’re going through. And while it’s true that your situation is unique, a lot of people find it helps to talk to others who have been told their treatment isn’t working. If you think that could help you, here’s a list of charities that might help you make contact.

Guilt

You might be worried that you are causing your family and friends a lot of pain, and you might be scared about how they will cope after you’re gone. Talking about these sorts of things is difficult for everyone, but if you feel able to, it can help to share your feelings. You’ll probably find the last thing people close to you want is for you to feel bad about them.

It’s only natural to have a whole lot of questions right now – and there’s no such thing as a stupid question. So ask everything that’s on your mind.

Sharing your feelings

We’d always encourage you to be honest about what you’re going through, but we also know that talking about dying is about as difficult as it gets. You might find sharing your thoughts and emotions is just too tough, and it’s important to do whatever feels right for you.

A lot of us struggle to talk about death, and in some cultures it’s considered disrespectful or dangerous to the person who is ill to mention dying. If this is the case for you, try to let your care team know, or ask a friend or family member to let them know for you.

This is a very personal, emotional time, so don’t feel forced into doing anything you don’t want to. But if you do want to talk, talk to people you know won’t make things harder for you. You might find you just end up crying on each other’s shoulders, but even that can make both of you feel a whole lot better. It’s a totally natural response.

And if you want to talk but don’t feel ready to speak to your family or friends, your doctors, nurses, clinical psychologist, counsellor, social worker, religious leader or hospital chaplain might be able to help. There are also professional organisations that can offer support at this time – ask your care team for details.

An important note on treatment

Your medical team will have looked at every treatment option available to you. However, you may look through the internet for other treatment options, and your parents may do the same. This is understandable. These options are often in a different country, will be expensive and may not help you at all. If you do find something, please discuss this with your medical team for advice.

Palliative care

Palliative care is the name given to treatment that helps you feel better, relieves your symptoms and improves your quality of life.

People often think it only refers to treatment given after you’ve found out that your cancer can’t be cured. But palliative care doctors and nurses might be involved in your treatment right from the start, because they are simply experts in relieving pain and other symptoms.

Palliative treatment can involve a range of drugs, like painkillers and anti-sickness medicines, as well as cancer treatments like chemotherapy and radiotherapy.

Your doctors will talk to you about which palliative care options might work best for you – and will aim to choose treatments with as few side effects as possible. Palliative care can make a big difference in helping you keep your symptoms under control, so that you can keep doing the things you want to do.

Making decisions

As time passes, you might find your feelings become less intense and more bearable. It might sound strange to read, but some people do say they’re gradually able to adjust to finding out that treatment isn’t likely to work. If that’s the case for you, you might find yourself thinking about things you want to do, say or get sorted.

You might want to do things you’ve always wanted to do. Or you might want to spend time with the people you love, doing what you already love. Whatever you choose is up to you.

You might want to talk to your doctors and nurses about advance care planning, or they may offer this to you. They’ll be able to help you decide how you would like to be cared for if you become too ill to make choices. You might not want to think about things like that, or you might like to talk through where the best place would be for you to stay, how you want to be treated and so on. Your family and friends can be involved in these conversations too.

You might also want to talk to your friends and family about anything you’d like to happen at your funeral, about what you’d like to happen to your things – or just what you would want them to do on your birthday. You might want to let them know some of your best memories. Or you might not want to think about any of this. But whatever you choose to focus on, don’t ever be afraid to ask questions. This is an incredibly tough situation, and getting the right information is really important as you think through what you want to do now and start making any decision for the future.

There is no right or wrong way to handle this news, and it’s important you are able to act how you want to. However you are feeling and thinking is natural and understandable.

Where to find more information about incurable cancer

You can talk to your Teenage Cancer Trust Nurse or Youth Support Coordinator if you’re on one of our units or are being supported by us. They have the time to talk with you and your family about what’s on your mind. They will be able to help you with any tough decisions you might have to make, and to help you preserve your memories for your friends and family.

If you’re not being treated on one of our units, you can speak to your clinical nurse specialist or someone on your clinical team.

Our Young Person’s Guide to Cancer can help you start a conversation about something you’re worried about.

Macmillan have lots of information about practical and emotional support at the end of life, as well as support for caring for someone with cancer and a support service.

Marie Curie also have lots of resources about living with terminal illnesses and a support line run by nurses and trained staff.

And if you want more information on the type of cancer you’ve been diagnosed with, Cancer Research UK have info on many different cancers.