Being told that your cancer cannot be cured and that you will die from the disease is probably the hardest thing you and your family will have to deal with. This is brutal, unfair and sucks big time.
Learning to live with the knowledge that your cancer is incurable is not easy (and that comes straight from the Dept of the Bleeding Obvious) and it will be different for everyone.
Remember: There is no right or wrong way to deal with the fact that your cancer cannot be cured and you have the right to deal with it your way.
It is really important to find people who you can trust and who will be honest with you. This may be family or friends but sometimes it may be easier to find someone outside the family.
Making the most of life with a terminal illness often depends a lot on having the symptoms under control. Palliative care is really important to relieve symptoms and treat any physical problems. If these are under control then you can get on with doing what you want to do.
There will be many emotions, some that you might expect and others you don’t. At times they can be so strong that they feel like they will overwhelm you.
- There may be lots of anger about what is going to happen and this feeling might not go away. That is OK and normal.
- You may feel very angry – with yourself, perhaps because you feel you should have done more to prevent or fight your cancer; or with the doctors or nurses, for telling you bad news. You may be angry with fate and feel that it’s very unfair that this should happen to you.
- Finding ways to manage this will help you to focus on the things that are important to you.
You may feel heaps of sadness about all the things you won’t get to do and the things that your family will miss out on sharing with you.
- What does this mean? It usually refers to the fact that you may continue to believe that your cancer can be cured and that everything will be OK.
- Denial can be a way to protect yourself from thinking about and dealing with stuff that is just too hard. This is OK, however as your disease progresses, it may get harder to ignore the reality.
- It can also get in the way of doing and saying the things that you want to do while you are still able.
- This can be about feeling like you have no control over what is going to happen. However you can find ways to control some aspects of what is going on, like treatment choices, where you are treated and how you want to spend your time.
- Not being able to do certain things because of pain and other symptoms could also make you very frustrated. It is important to make sure that your symptoms are well managed.
- Dying is scary stuff and being really scared is OK. There will be lots of fear; will it hurt, what will happen, where will I die, how long will it take.
- Having the right information can help you deal with this and stop you freaking out about things –or at least work out what it is that you are most afraid of.
- Guilt may not be new to you, especially if you have been in treatment for a while. You may feel guilty about how your family is coping or will cope and that you are causing them a huge amount of pain.
- You might also feel guilty because so much time and attention is focussed on you and your needs, particularly if you have other brothers and sisters. (But if it can’t be all about you when you are dying, when can it be??)
Getting the right information is so important. It can help you make decisions that are right for you and also help you to understand what is going to happen.
Remember: Ask as many questions as you want and as often as you want.
Questions you have could include:
- Why did this happen?
- How do you know that there are no more treatments to try?
- Can I get a second opinion?
- How long do I have?
- What will it feel like? Will it hurt?
- How will I know that death is close?
- Will I be aware of what is happening?
- Finding people who will be honest in their answers might be hard. You could try your doctor, nurses, social workers or a family member.
- Asking may be really hard, but not asking might be harder.
There may be lots of other questions – there is no such thing as a stupid question.
Things to think about
After finding out that your cancer cannot be cured and after you have dealt with the initial shock and all the other intense emotions, you may start to think about a whole lot of things that you want to do, say, sort out and get in order.
You may want to pack in as much as you can, while you can or you may want to just enjoy the time you have with the people you love.The important thing is to find ways to communicate what it is that you want.
Some of things you might want to think about could include:
- Is there something that you have always wanted to do or see?
- Are there things that you want to tell people who are close to you?
- Is there someone you would like to see?
- Are there decisions that you want to make while you are still able to?
- Are there certain things that you want to have done after you have died
- Do you want to plan your funeral?
- Have you made a will (only legally binding if you are over 18)
- Have you talked about what your treatment options are as you enter the end stages of life
If you’re able to talk openly about how you feel to your family and close friends, they will probably be relieved and able to respond.
We have information on talking about your cancer, which may help you to find the right words for difficult situations.
You can choose the people that you want to talk to, that you feel will be able to support you.
You only need to share as much as you want to share – and at a time when you feel ready.
This is a really tough space to be in, and it will challenge you in so many ways.