This page covers:
- Finding out you have terminal bowel cancer
- Feelings you may have
- Talking about dying
- What happens in the final days
- Physical changes
- Emotional and spiritual changes
- Planning for end of life
Finding out you have terminal bowel cancer
When cancer is advanced it means that it can’t be cured and is likely to cause death within a limited period of time. The amount of time is difficult to predict, but it could be weeks to several months. Doctors might also say that the illness is ‘terminal’. This distressing news can affect you and the people close to you in different ways.
If you don’t feel like talking straight away, just tell the people around you. As hard as it can be, try not to push your emotions aside completely. If you can manage it, it is better to express how you feel and allow your emotions to come to the surface – even if that is uncomfortable and hard to cope with.
Feelings you may have
Over the first few days, you may go through a range of very strong emotions. The emotions may change very quickly and sometimes you may feel numb or as though everything is happening to someone else. Some people say they feel very calm and detached when they are first told they don’t have long to live.
At times, you will probably feel shock, anger, and sadness. These emotions can feel overwhelming at times. This news will mean that you can’t plan your future in the way you had hoped. Dying may mean leaving behind a partner, children, and other important people in your life. You may wonder how they will cope and won’t want to see them upset.
These thoughts may be too painful to cope with at times. You might feel as if you are going mad. You may be unable to stop crying and worrying. All this is perfectly normal and understandable.
You may find it difficult to look around and see life going on as normal for most people. It can feel very strange to watch people going about their daily lives as usual – shopping, driving and working. Coping with this roller coaster of feelings can be very exhausting. You may feel as if you are stuck under a huge black cloud and that there is no point in doing anything.
Most people will have some or all of these emotions. This usually changes gradually. Many people say that the intensity and distress lessens in time. This doesn’t mean that you stop worrying or feeling upset. But the feelings get more bearable. You will most likely be able to think about your situation a little more calmly and plan what you want to do.
Talking about dying
Sharing your fears and sadness with people you love and trust may be a great relief for you.
Many people say that talking about their feelings helps them to cope. It also helps your friends and family to understand more about your situation. In turn, this will help them to help and support you. Other people find sharing their thoughts and emotions too difficult, and would rather keep things to themselves. It is important to do whatever feels best for you.
Don’t let other people pressure you into talking if you don’t feel ready. This is a very personal, emotional time. You can choose how you handle things. If you would like to talk, make sure you choose people you can talk to easily, who will understand how you feel and be able to support you. You may have different types of conversations with different people, depending on your relationship with them. With some people, you may have an in-depth, serious discussion while with others you might have a more open discussion while watching TV. You can decide based on what makes you comfortable.
If, after some time, you still feel overwhelmed and you can’t cope, try speaking to someone outside your immediate family and friends.
If you are by yourself:
If you don’t have people nearby to help with practical things, you can ask for help. One of your health care team may be able to arrange volunteers to help out at home, or come to visit you in hospital. Ask your specialist cancer nurse or doctor about this.
If you need help with personal care, such as washing or dressing, social services may be able to help. They can arrange a care package for you.
You may be wary of letting people you don’t know into your life, but most people find that they do need support at some stage from other people or organisations. The people that you are put in touch with will be understanding and aware of your feelings and need for personal space. They will want to support you in the best possible way they can.
You might find help and support at your religious organisation or through other organisations you are involved with.
Difficult questions and important decisions:
It can be helpful to find out what support is available. Some people want to make plans about what they would like to do before they die. You may like to ask your doctor about:
• How to control cancer symptoms;
• What is likely to happen; and
• Who to talk to about your concerns.
Having some idea about what to expect can help you feel less anxious. You may also want to think about where you want to be at the end of your life.
What happens in the final days
Knowing that you, or a loved one, is close to dying can be very difficult for everyone involved. People often ask questions about how someone will die, especially relatives and friends. They often worry that they will not be able to cope, or know what to do when the person they are caring for dies.
It is very difficult to give exact details of how someone will die. Each person is different and will die in their own unique way, but here is some general information about what may happen and what a carer can do to support you through the process of dying.
The body begins its natural process of slowing down all its functions. How long this takes varies from person to person – it may take hours or days. The dying person will feel weak and sleep a lot. When death is very near the dying person may have:
• Sleepiness and difficulty waking (semi-conscious);
• Difficulty swallowing or not wanting to eat or drink at all;
• Loss of control of bladder and bowel;
• Restless movements;
• Changes in breathing;
• Noisy breathing;
• Cold feet, hands, legs and arms;
• Confusion and disorientation;
• Complete loss of consciousness.
For carers, it can be emotionally very difficult to watch someone go through these physical changes. But they are part of a natural dying process and don’t mean that the person is uncomfortable or in distress.
The doctors and nurses looking after you during this time will be checking regularly for these changes. They will do all they can to make you as comfortable as possible during your death. If you are being looked after at home while you are dying, your carer should have support from a specialist palliative community nurse, district nurses, and the GP. They can answer their questions and help to make home nursing easier.
Sleepiness and difficulty waking (semi-conscious)
People who are dying often sleep a lot and may not respond when someone tries to wake them. But this doesn’t mean they can’t hear someone talking to them. Hearing may be one of the last senses to be lost. So it is important that people continue to talk and comfort you.
They can sit close to you and hold your hand. They should not say anything to you that they would not want you to hear. It’s also a good idea for them to tell you when they enter or leave your room.
Difficulty swallowing or not wanting to eat or drink at all
There will come a time when you will not want to eat or drink anything. It is important that no one tries to force you to eat or drink. This would make you uncomfortable. If you are still awake people can give you small pieces of ice to suck or sips of fluid to keep your mouth moist. They can put vaseline or lip balm on your lips to help stop them getting dry and sore.
If you really can’t take anything into your mouth, your carer can moisten your lips and mouth every 1 to 2 hours with lemon and glycerine swabs or water. Your GP or community nurse can get you the swabs.
Loss of bladder and bowel control
The dying person may lose control of their bladder and bowel. This happens because the muscles in these areas relax and don’t work as they did. The nursing staff will do all they can to protect the bed and keep you as clean and comfortable as possible.
If you are being cared for at home, the district nurses and specialist nurses can arrange for your carer to have draw sheets or pads to protect the bed. They may also be able to arrange a laundry service for you, if necessary. As people become very close to death and are not eating or drinking, the amount of urine and stools they produce gets less and less.
Some people have a tube inserted to drain the bladder which makes them more comfortable. If this is needed, the GP will organize it.
Restless movements (as though in pain)
Many people who are dying, and the people around them, worry that they will be in pain. Not everyone dying of cancer has pain. But if they do, it can usually be well controlled and people can be kept very comfortable. The doctors and nurses looking after the dying person will do all they can.
Sometimes restlessness is a sign of being in pain. If you can’t communicate very well and your carer thinks you are in pain, the most important thing they should do is to tell your doctor and nurses. They will want you to be pain free, so your carer should talk to them. This will help them plan the best way of controlling the pain and keep you comfortable.
Changes in breathing
When someone is dying their breathing often changes. It may become noisy and irregular. There may be times when they stop breathing for a few seconds. This is called Cheyne Stoke (pronounced chain stoke) breathing. They may breathe with their mouth open and use their chest muscles to help them catch a breath.
It can help if your carer raises the head of the bed with pillows or cushions. Just sitting with you, speaking gently, and holding your hand can be very reassuring for you. If someone is having difficulty breathing, a doctor or nurse may suggest giving a small dose of morphine, even if they are not otherwise in pain. Morphine can help to make breathing easier.
You may make gurgling or rattling sounds as you take each breath. This is coming from your chest or the back of your throat. It is because there is a buildup of mucus and saliva and you don’t have a strong enough cough reflex to cough it up. If your carer raises your head and turns it to the side, gravity may help to drain the secretions. Sometimes the fluid can be sucked out through a thin tube put down into your windpipe, but this is not usually needed. Medication can help to relieve this also, so your carer can let the nurses know. Hearing these gurgling sounds can be upsetting for your carers, but they do not usually seem to cause distress to the dying person.
Cold feet, hands, arms and legs
The dying person’s face, hands, arms, feet and legs often become cold to touch. Their skin may also become pale and look blotchy or mottled. This happens because there is less blood circulation to these parts of the body. Your carer should keep you warm with blankets, but they shouldn’t use an electric blanket as this may become too uncomfortable. Thick socks can help to keep your feet warm. The room shouldn’t be overheated as this can make it stuffy. It should just be kept at a comfortable temperature.
Confusion and disorientation
Your carer may hear you say things that make no sense. You may not know what day it is or may not appear to know who your carer is. You may even say things that are totally out of character. For example, you may shout at your carer or physically push them away. This can be very hurtful and upsetting. But your carer will know that you don’t mean it and are not aware that you are doing these things. This happens partly because of the chemical changes going on inside your body.
Complete loss of consciousness
At the end of life, the chemical balance of the body becomes completely upset. The dying person then slips into unconsciousness. This is usually right towards the end, maybe only a few hours or days before death. Breathing becomes irregular and may become noisy. Your carer won’t be able to wake you at all. Your breathing will stay irregular for some time and will at some point stop.
Emotional and spiritual changes
Everyone will feel different emotions when they are dying. A lot will depend on:
• The type of person you are;
• Your age;
• How much support you have;
• Your religious and spiritual beliefs; and
• The experiences you have had in life.
Someone dying in their 20s is likely to feel very different to someone who is 80. If the person dying is leaving behind young children, they will have different worries from someone whose children are grown up and able to take care of themselves.
Before the final stages of death you may want to complete any unfinished business. This may mean:
• Sorting out any problems with personal relationships, or deciding not to;
• Visiting certain places;
• Buying gifts for people;
• Sorting out personal belongings and giving special things away to family and friends;
• Getting your will and financial business in order; and
• Seeing a religious leader.
As death gets closer you may begin to let go and seem more at peace with things. Others may become very anxious, fearful or angry. Some people may appear to withdraw even from the people they love and care about. But this doesn’t mean that they don’t care anymore. These events are all very normal and a natural part of dying.
Even if the physical body is ready to shut down, some people may resist death. You may still have issues you want to resolve or relationships you want to put right. It is important that your loved ones let you know they are there for you and will help you with any of these issues.
You and your relatives and friends are likely to feel some very strong emotions during the time you are dying. Often all people can do is to give you a lot of support and comfort during this difficult time. Friends and relatives should:
• Allow you to share any memories or feelings you have; and
• Reassure you that it is all right to let go and die whenever you are ready.
Some people who are dying will hold on until people close to them say it is alright to go whenever they are ready. So letting you go can be one of the most important and loving things they can do for you.
If those close to you need some support when you are dying it may help them to speak to:
• The doctor or nurses on the ward;
• A religious leader;
• A counsellor;
• Close friends and relatives ; or
• The palliative care team if at home
Your carers should try not to worry that they are going to do the wrong thing. Just being with you and letting you know they love and care for you is the most important thing.
Planning for end of life
It can be upsetting to think about the future when you have advanced cancer. However, many people find it gives them peace of mind to have medical plans in place and legal and practical matters in order, even though they still hope to live for a long time. See our Planning for End of Life section for advice on how to think ahead and put your affairs in order.
Coping with advanced bowel cancer
Download a copy of the Marie Keating Foundation’s booklet, Coping with Advanced Bowel Cancer.