Chronic pain management and terminal illness

Terminal illness

Quick links on this page:

• How might this affect me?
• The future
• Spiritual and Religious support
• Putting your affairs in order – making a Will
• Contacts

Let me not pray to be sheltered from
Dangers but to be fearless in facing them.
Let me not beg for the stilling of my pain
But for the heart to conquer it.
Let me not look for allies in life's
Battlefield but to my own strength.
Let me not crave in anxious fear to
Be saved but hope for the patience to
Win my freedom.
Grant me that I may not be a
Coward, feeling your mercy in my
Success alone; but let me find the grasp
Of your hand in my failure.

Rabindranath Tagore
Fruit Gathering

How might this affect me?

We all know that one day we will die. Many of us will die from a chronic or terminal illness. Most people find it very difficult to talk about death and the process of dying when it is happening either to themselves or to someone who is close to them. People who are dying sometimes describe themselves as being surrounded by a 'conspiracy of silence' where both they and their loved ones know what is happening but neither feels able to talk about it with the other.

Always remember that you are not alone and that you can get help.

Hearing the news that the doctor thinks your illness cannot be cured is always difficult. You may feel that you want to discuss the options more fully or to have a second opinion. It is important that you do not feel under pressure from doctors, family or friends to accept or refuse further treatment. The final decision must be your own.

You might find it impossible to believe what you are hearing especially if you have had no idea your illness was this serious. You may think that you'll wake up to find out it was a nightmare. This initial shock and disbelief after some time will be replaced by very powerful emotions which will effect how you think and act around those closest to you. Many books and theories have been written attempting to understand the processes we go through as human beings as we attempt to understand what is happening to us. It may be helpful to consider the model set out below developed by Elisabeth Kubler-Ross. She attempts to set out five stages that patients go through as they battle with the news of impending death.

Five stages of Dying in Terminally Ill Patients (Kubler-Ross)

• Denial and Isolation: State of shock, denial that it is your death. 'No it can't be me' is often asked, usually temporary, but you may shop around for other opinions. Deep feeling of isolation.
• Anger: Feelings of anger, rage, envy and resentment. 'Why me?' is asked. Anger is displaced in all directions, the hospital team, especially nurses, often take the brunt.
• Bargaining: Negotiate openly with hospital staff and secretly with your God to postpone death for a promise of good behaviour.
• Depression: When you can no longer deny the illness. You can have no more surgery/medication. You grow weaker and become depressed.
• Acceptance: You find a sort of peace, a peace which is largely a function of weakness and a diminishing interest in the world. Spiritual peace and contentment.

The Future

No one can predict how long you will live. Even if the doctor has told you that you have six months you need to remember that this is only an estimate and that you may live longer or unfortunately you may live less than this.

Your need for company and activity will vary from day to day depending on your energy levels. As your energy fades you may only want those closest to you around you whie on the other hand you may be frightened to be alone and want someone with you all of the time.

There is no right way to die and no rules for how to cope. This is a time in your life when you will decide what is right for you. It is up to each individual to decide what is right for them and to come to terms with approaching death in their own way. Many people do eventually find a sense of peace and appear to be ready to 'let go' when the appropriate time arrives. Tears of course are very natural and you do not have to put on a brave face. If you disguise your feelings you and the people close to you that you love do not get an opportunity to say what they want to express at this special time.

Although death is the ultimate loss other losses will have already happened before this throughout your terminal illness. You will have to stop work, to stop driving, to end many pleasurable activities ultimately ending up in bed and not being able to walk around as you used to. This is a time when you can be very down and depressed. This is a time when we are grieving for the things we have lost. Once again it is important that we talk about these feelings with someone close or indeed to consider speaking with a trained counselor as a way of unpacking some of the feelings and thoughts we are facing.

Spiritual and Religious support

People may find that they become more aware of religious beliefs or spiritual feelings throughout this time. It can be a real time of new discovery but also of questioning age old thoughts and beliefs which have been with us throughout our lives. Thoughts like whether there is a life after death may be all to the fore. Will we meet with our loved ones in a life hereafter? Is there a heaven and a hell? It is throughout this time that comfort may be found in prayer and meditation or in finding a spiritual practice that gives consolation, strength and support as we struggle for peace and serenity. For others it is a great support to know that others have said they are praying for us.

There are many religious and spiritual advisors who are willing to spend time with you should you wish to talk about what you believe. They are used to, as chaplains, talking about death and dying and in 'holding you' in your distress and uncertainty.

Putting your affairs in order – making a Will

It is not morbid to be concerned about what will happen to your possessions after your death. It is a thoughtful way of making things easier for your loved ones after your death. It may help to clear your mind knowing that your affairs are in order thus leasening the burden for people after your death. Making a will is not expensive or as difficult as you might think but it is a legal document which must be properly prepared. It is usually better to use a solicitor who will be able to help you with the precise wording which will accurately convey your wishes upon you death.

CancerBACUP can send you a booklet called 'The CancerBACUP guide to making a will and leaving a lifeline' which is designed to guide you through the various stages of making a will before you go to see a solicitor (020 7696 9003).

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