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This section is written for people who know that their time is limited by cancer and want some ideas or strategies to reflect on and turn to for their own use.
It is quite common, and very human, to avoid talk of death and dying. If that is how you feel, leave this section until you feel ready.
There will be times when your morale slumps, you feel terrible - and emotionally - and you wonder what it is all about. At other times, you may feel optimistic about your situation. Talking about these feelings may be hard, for you and for your listeners. It will be especially hard for the people who love and know you best. They will need time to adjust.
People with advanced cancer mention two different positions that friends can cling to: regarding them as already dead, or refusing to contemplate the possibility.
‘People saying, "You'll get well" makes me really cross. I know I won't be well. I want to say to them, "I am going to die and don't you dare deny me this business of dying".'
You may come to terms with your situation faster than those who love you. While your family and friends adjust, it might help to share your feelings with the doctors, nurses or others who are looking after you. You may find comfort in discussing death and dying with a minister or spiritual figure. They are generally experienced and accepting of being with people at this stage of their lives.
‘It was like appearing in court expecting a death sentence and discovering the judge didn't want to commit himself.'
You might find your doctor is not precise about how long you have to live. They can only estimate, based on the life expectancies of people with a similar cancer at a similar stage to yours. But if it is important for you to have an estimate, say so.
It is likely to be tough if you are told that time is short. Even if it is only a matter of weeks, though, there can be a real change in how you feel. Your mind and feelings may become focused and you may find yourself making decisions about things that are important to you. Getting over that point when you first realise that death could come soon is likely to be one of your biggest challenges.
‘The doctors said, "You haven't got much time. Do what you have to do, do what you want to do". Suddenly they were talking weeks not months. That was a very difficult time. At night I wouldn't know if I was going to wake up. I didn't know when somebody left if that was the last time I'd see them. I made very certain everybody knew how important they were to me. I wanted people to feel free and released from any unfinished business between us.'
You can feel uneasy or unsettled if you live past the expected time, not quite knowing what you should do now.
‘Last year I was living thinking I was dying, making the most of it, not planning anything for the future. In a funny sort of way it was quite easy. You can plan to die. This year is different. When I kept on living it was a problem. What on earth is this for?'
‘I'd made a will and left money for my cat to be looked after. I'd given away all my Led Zeppelin records. Now the cat's dead and I'd really like to play one or two of those pieces.'
Many of us have no fixed ideas about death until we are faced with the reality of it-our own or that of someone close to us. Even people who believe in an afterlife can find that they have not thought much about dying itself.
‘When I was told, "You're going to die," it made me ask myself what dying means. I decided nobody really knows, nobody sends you a postcard from Heaven to tell you what it's like.'
Where do you go for help in sorting out your feelings about this new stage of your life? Facing death means losing people, places and things you hold dear. It is natural to grieve for their loss. And it is natural to want to share your hopes and fears with an understanding listener.
When talking things over, you may find there is more to dying than grief and loss. There can be a positive side to preparing for your death, getting yourself ready in both your inner and outer lives. People living with advanced cancer say how important it is to say farewell to people-work colleagues as well as family and friends-and to make arrangements for the future care of their pets.
You may wonder about the big questions now: What are life and death all about? Where am I going? How much of me will stay behind with the people I love: the ones who have loved me? If you have children, particularly if they are young, this last question is something you will struggle with.
‘I remember Fred saying he hoped he lived long enough so the twins would remember him.'
People who work with the dying say that pain in mind and body can be lessened when these fears and hopes are talked about: to hospital staff, family or friends. However hard it can be to find the words, these concerns are central to the human experience. Conversations about them can be a precious memory for those involved. If you wish, hospital or hospice staff will be able to arrange for someone of your faith to visit you.
Trust yourself to do it your way when the time comes, but make sure that you have the help you need. This means talking to your doctor or nurse about what will happen and what your wishes are.
Perhaps you want your doctors to know your wishes about resuscitation.
If you have precious last messages for people, you can make a point of passing them on now. That way, there is a chance for dialogue: -time for people to listen and respond.
If you have children and feel that you haven't passed on all you know, you can consider making a ‘moral will'-a letter or tape telling them what you think it is important for them to know. If your children are very young, they will understand your words when they are older.
Remember, there is no ‘right' way or place to die. You and your family will go through it in your and their own way when the time comes.
‘Mrs Keith, twenty-five kilos,
propped up, cheaply wigged,
knitting a jumper for her daughter
and planning a trip to England
at four in the afternoon of the night she died,
talking of her family too, glowing tales of their achievements.'
When people know their death is not far off, one of the things they often say is, ‘I don't mind dying but I don't want to suffer.' Some people feel this so strongly that they want things sped up: they don't want to wait around feeling helpless and in pain. If they can talk this over with a doctor or a spiritual adviser, they will often change their minds and come to see every day as precious. So if this is how you feel, tell your doctor or nurse. They will talk to you about what is likely to happen and what can be done to ease your final days.
Sometimes people approaching death fear going to sleep, in case they don't wake up again. This is usually unwarranted and is something to discuss with your doctor or nurse.
Pastoral care workers are part of palliative care teams. They are trained to discuss spiritual issues, whatever your religion, or if you are atheist or agnostic and wish to discuss life's meaning.
As you approach death, you may become unconscious. Some people lapse into and out of consciousness and are able to talk at times to people around them. Some people stay alert almost until the end.
If you are unconscious, the people around you will see and take notice of things that you may not be aware of. Your breathing will sound different and your appearance will change. It may seem to the people watching that it is an effort for you to breathe, but we do not know whether dying people experience it as an effort.
Death is as much a process as an event, so your body will ‘shut down' bit by bit. It seems that hearing is the last sense to go (although we cannot be sure about this). With this in mind, the people caring for you will tell you what they're doing: for example, turning you on your side to make you more comfortable, and moistening your lips.
‘When patients ask about the dying process, I describe it as the physical and emotional experience of gradually becoming weaker and letting go of their attachment to living.'
No one really knows how a dying person experiences the moment of death. We each imagine it differently. Some people see it as a moment of release from suffering and care; others imagine falling into a blissful sleep. People with religious faith look forward to the time after death, when they will reach Heaven or Paradise. Some people believe that their ‘life force' will leave their body and become a part of a greater life force. Perhaps death is the last and greatest experience of them all.
‘You lay there
Not so much sleeping as leaving
Many of those who loved you
Stood or sat around you ...
That fearful tearful moment was not far away
Yet
The room was alive with love
Pain had succumbed to peace
Ending surrendered to beginning.'
‘When the inevitable comes, I'd rather be home with the kids.'
‘I felt very privileged and pleased to be able to fulfil her last wish of looking after her at home and letting her die peacefully in our bed.'
Lots of people prefer the idea of dying at home. With the help of a palliative care team and family or friends, this may be possible. Even if you live alone, you can plan to stay as long as possible in your own home.
Still, there may be reasons why you can't. You may have medical needs that only a hospital can meet or live in an area too remote for home visits. Housing can be unsuitable, perhaps with stairs or small bathrooms. Or you may prefer the sense of security that a hospital or hospice can provide.
When you die in your own home, those close to you can say their farewells in their own time. This is often the case in hospitals, too, where you may rest in a private area where people can stay as long as they wish.
‘The oncologist told us that there was no more treatment for Bill. He said we should go home, write a will and then do whatever we wanted-enjoy ourselves. We already had a will, but we rewrote it to say who should be guardians for our children if something should happen to me as well.'
A will states what is to happen to a person's belongings when he or she dies. For those left behind, a will simplifies matters, especially if a person leaves assets such as property or money. A will also helps to ensure that ‘special things' are given to the right people after death. If you made a will before your cancer diagnosis, you may wish to review it to make sure it reflects your current wishes.
For a person with young children, the will states who is to become guardian of the children and how the children will be provided for. You may also want to say in your will who is to look after your pet or pets and how their care will be paid for.
Alternatively, you may like to try a do-it-yourself will, especially if the division of assets is straightforward. Will kits are available from legal stationers and at some newsagents. If you live in a city there may be a community legal service that can assist. Other alternatives include a personal solicitor or a trustee firm. If your assets are substantial, or the division of them will be complex (for example if your main relationship is not fully recognised by the law), it is advised that you seek the assistance of a solicitor or trustee firm. Ask about the cost involved before pursuing these alternatives.
‘I'm planning my funeral to have the music I want. It is the music that has been a special part of my life. I also intend to leave a tape to be played at the service-they haven't heard the last of me. My two closest friends are going to have something to say about my life-warts and all. I hope my funeral will be a celebration of life.'
You can plan your own funeral if you wish. This means it will be conducted as you want it to be conducted. Also, your family will not have to try to ‘guess' what you would have wanted.
You can lodge a plan with the funeral company of your choice well before it is needed.
If you feel you need to make preparations but you can't do the work, or prefer not to, consult a social worker or pastoral care worker who will help you work out what you can do.
It is probably not easy for most of us to hear or think about the reality of what is involved in funerals. However, there can be a satisfaction in leaving your mark on the occasion, and also involving your family beforehand.
‘I didn't know Penny very well. She was dying when I joined the support group and I didn't realise. I missed the meeting when she came to say goodbye. I was awed when I heard that her kids decorated her coffin in their garage while she was still alive.'
Whatever your belief is about what happens after death, you can make the most of the time you have now. A palliative care doctor suggests: ‘Maintain purpose for living and express feelings. Don't aim to stay alive, but to live'.
‘Keep planning and setting goals, however small or big. Keep your mind active. I'm always planning for the next thing: someone to love, something to do, something to look forward to.'
There are positive things you can do, for yourself and for those close to you. If you have strategies to get you through the more difficult situations, you'll have a sense of being in control of your life. For example, if you live alone, you could call on home help and palliative care services sooner rather than later.
The aim is to feel free to do whatever you can. That might be something big like travelling. Or perhaps it is just enjoying small things in your daily life, even if this is no longer an active one. Being able to live in the moment is a gift, but it can also be learnt. Whether the moment is especially good, utterly ordinary, or even painful, you can live it to the full.
