2. Coping with life-threatening illness

Elaine Sugden

  • Book Chapter

This chapter discusses most difficult time when there is a new diagnosis of life-threatening illness. Cancer is the one that springs to most minds, and because I was a cancer doctor, many of my illustrations, but by no means all, are from cancer patients. There are other more unusual, life- threatening illnesses, some of which are so grave and rapid that there is no opportunity for the sort of reflection given here. The cause doesn’t matter as the principles are the same. It is also important to remember that the term ‘life- threatening’ does not mean that untimely death is inevitable. Today, many are cured and treatment has given years of good quality survival to many others, but sadly not all.

The time of the diagnosis

The diagnosis of a disease which is life-threatening suddenly changes everything. Perhaps there had been fear that some recent symptoms might result in a serious diagnosis. For others, it comes ‘out of the blue’. There might not have been any symptoms, or the possibility of something serious had not been thought of. Having screening for diseases such as breast, prostate or bowel cancer is a worrying time for some, whilst for others it is just something routine. Most of those screened will not have the disease, but for the tiny minority who do, it is a devastating result.

Whatever has gone before the confirmation of the diagnosis, the possibility of death sooner than expected is now centre stage in our thoughts. We leave the place where the news has been given in a daze, with questions unasked or unanswered. Much of what has been said was probably not heard. Nothing seems real, everything belongs to a dream world, which we long to wake from and find untrue.

The diagnosis of serious disease will not always lead to an early death, but at this stage the future is uncertain and has to be faced.

Why is death and dying such a problem even though it will happen to all of us? We shall certainly all die but few feel ready. Even the very elderly can find a life-threatening diagnosis hard to bear. Rightly and properly, there is a very strong human instinct to avoid death, to hang on to life, to put off death’s inevitability and finality.

Fear is the major emotion in this situation. Fear about self, family, pain, the possibility of disability and of what might be beyond death. The uncertainty when treatment might or might not cure can be intolerable. Phases of denial, anger, guilt, and depression, in any order and for variable lengths of time can be experienced. Overwhelming feelings of disappointment and loss might occur as well as the unfairness of it all, prompting the cry ‘why me?’ There can be sleeplessness and ‘dark’ dreams.

Jill, a friend, soon after a cancer diagnosis, told me: ‘As a person of faith I don’t fear dying as such – although I am not very keen on pain – but I am terrified of leaving my husband. We have often talked about death in the abstract, and decided we would like to go together, as neither of us feels we would cope being the one left behind. I do really fear for how he would cope without me.’

For some, the worst worry is about others rather than themselves.

Telling others

Not everyone has a trusted relative or friend with them when they are informed of the diagnosis, and some still prefer to keep it to themselves. Even husbands and wives do not always confide in each other, thinking that there will be time in the future to ‘spill the beans’. I would say, it is almost impossible to keep such important information from someone who cares about us without them realising that something is wrong. However hard it may seem, it is good to share information and talk about the diagnosis and its consequences. The truth can be easier to bear than the possibilities the imagination conjures up.

Jill again: ‘My husband has surprised me with his willingness to face up to my diagnosis. He has never been one who copes well with illness, either his own or anyone else’s. He has been hugely supportive so far, transporting me around to various hospitals and hanging around for hours waiting for me. I do feel proud of him – we have even discussed our wills, which were drawn up many years ago and may need amending slightly. He wants to read all the literature I have been given.’

Telling others about the diagnosis is, for some, one of the most difficult things they will have to do. This is especially true in telling children who need to know that the disease is no one’s fault, that it is not catching, that their questions will be answered honestly and, most of all, that they are loved and cared about. (This is explored further in chapter 8.)

Being ready to find that many, who want to help, areinterested in our diagnosis is important.

I said I was going to get cards printed up saying what kind of cancer I had and what treatment I needed. I know people cared, but I got sick and tired of repeating the same story every time someone asked…' Van, age 26American Cancer Society – ‘Telling others about your cancer’

Coming to terms with the diagnosis

‘Coming to terms’ with the diagnosis and the possibility of a shortened life span is made easier with kindness, care and support from others. The way in which we, and others, make use of the time we are given, is important.

Time: A healer

It is true that time is a great healer. In this sense, we are not talking about physical healing of the disease but coming to terms with the diagnosis and expectation of ‘untimely’ death. No one comes to terms with bad news within a few hours; it may take days, weeks or even months. But in the end most of us do.

Quote from a cancer survivor: ‘There’s a fear that goes through you when you are told you have cancer. It’s so hard in the beginning to think about anything but your diagnosis. It’s the first thing you think about every morning. Talking about your cancer helps you deal with all of the new emotions you are feeling. Remember, it’s normal to get upset. I want people diagnosed with cancer to know it does get better.’ American Cancer Society: ‘The emotional impact of a cancer diagnosis’.2

Time: For doctors, nurses and other health care staff to give explanations and support

Doctors, nurses and other health care staff need to dedicate adequate time towards carefully explaining the diagnosis, discovering the patient’s priorities, showing care and offering continued s rt, which can help to calm fears about the illness and its treatment. Knowing the truth, and having confidence that the medical staff will be honest, is far more helpful than the false kindness of being shielded from a painful diagnosis.

In the situation where treatment will not be effective, time for full explanations and for the reassurance of continued physical and psychological care is especially important. Specialist nurses, who are trained to understand the particular disease and its psychological, as well as physical, effect on the patient are invaluable.

I think it is a good idea not to leave out your own GP. He or she is still your doctor. It was not unusual for my patients to admit to not seeing their own doctor because they were ‘now under the hospital’. I encouraged them to visit their GP from time to time to keep in touch, and inform him/her about how things were going, as well as ensuring that medication for any symptoms or side effects were in place. Your doctor can encourage you, listen to your priorities for treatment and care, and help you to p ly understand complex letters from the hospital which are full of medical jargon.

From a 32-year-old with a brain tumour who felt that the doctor had kept the full truth from him: ‘People want truthful information and to be told what is expected to happen. The internet has been the best place for me to get information.’ ‘Living with Dying’, healthtalk.org 3

The internet is a useful source of information and we have suggested some sites in the Appendix Where to find more help. It is usually helpful to ask your doctor or specialist nurse about which sites they would recommend in light of your particular case. There is certainly no value in getting hold of wrong and possibly unnecessarily worrying information.

Time: From family, friends and communities

Receiving love and support from family members and friends is of the greatest value and importance. Most of us need company, and it can be devastating to be shunned by those who feel they don’t know what to say. (No-one really knows what to say.) Just being present and available for whatever is needed is important, even if it is simply silent companionship. Other forms of love and support might include receiving invitations to outings, parties and other gatherings, or going to the pub, races, shopping, or a sports match together. It’s good to be ‘taken out of yourself’. Often, practical help is also of great value. If you are the patient, do let others help – they really do want to. Tell them what would help you – it might be something they haven’t thought of. If you are the relative or friend, be sure to ask how you can best help.

Faced with a difficult diagnosis, we want to feel that we still ‘fit in’ with the family, our friends and interest groups. Whatever our situation, whenever possible, we want to continue to contribute our skills and pursue our interests and have a laugh. There are other things to talk about as well as illness.

Sometimes though, it does help to talk about the illness and the effect it is having. Whom you choose to speak to might surprise you.

‘People share selectively with whichever individual or group they choose and might never ’open up‘ with their closest friends.’ When Your Friend is Dying, Elizabeth Dean Burnham 4 .

Time: for goals and interests

When the length of life is limited, and a great deal of time is taken up with hospital visits, it is helpful to think about what you like to do with the time that is available. Having a purpose day by day is good therapy. Of courrse, energy might be limited and free time measured only in minutes, but it is worth planning for and trying to do something each day that you wouldm expect to enjoy. This is, in fact, a good policy for all of us.

A cancer patient attending a day hospice said: ‘I have been involved in lots of different and interesting things, both in and outside the hospice, I wouldn’t have been involved in if I hadn’t had cancer.’ ‘Living with Dying’, healthtalk.org

Time: For renewing contact with family and friends

Often, there are people we have not seen for months or years that we desire to see and talk to. There will be some we want to thank for their love and friendship, maybe for something they did for us as a child, or as a young or older adult. Quite often, there have been family estrangements that need to be addressed. Forgiveness is a powerful force and the healing of broken relationships will provide comfort to all involved.

Dorothea had not seen or communicated with her daughter for 30 years. When in her mid-80s, she was ill and knew that death was not far off, she travelled alone across the Irish Sea to visit her daughter in England and say goodbye.

Ways of coping

‘Coping’ means: to face and deal with responsibilities, problems, or difficulties in a calm or adequate manner.

I worked as a cancer doctor for almost 30 years. It was clear that people coped with a difficult diagnosis in different ways, depending on their personality and background.

The active approach: ‘I’m going to fight this, it’s not going to get me.’ Some people regain control in this way, determined to try to prove the doctors wrong. They intend to give it their best shot. However, sometimes a person might spend so much time looking for cures that they miss out on spending good and meaningful time with family and friends.

The passive approach: ‘I’ll do everything you tell me, doctor.’ The feeling expressed here is that to follow medical advice ‘to the letter’ will bring the best result.

And the one I called ‘head in the sand’: ‘I know I’ve got cancer and that one day I am going to die from it but I don’t want to read books, leaflets or even talk about it; I want to enjoy life as long as I can.’

Those who took this approach often did not want to discuss the diagnosis even with the doctor and it could seem that they hadn’t understood that their life was likely to be cut short.

Others look to a religious faith or alternative medicine to help them to cope.

Mary held a strong belief in a God who cares. When her cancer returned, her doctor thought she didn’t understand or was denying the situation. Mary was sure that she was in the hands of something more powerful than medicine. The Art of Conversation through Serious Illness, Richard P. McQuellon and Michael A Cowan 5

‘Coping’ means regaining control of self and a continued purpose in life and this is an important step.

In my experience, no one way of coping is best or even better from the point of view of altering the course of the illness. Doctors, nurses, carers, family and friends must work with the sufferer and find out how best to help

Having a purpose

For all of us the length of our lives is limited. There are things we want to do, places we want to go, and people we want to see during our life span. As life goes on, we change those ‘wants’ depending on money, time and priorities. After a difficult diagnosis, time is shorter and priorities can change; money might well be tighter but there are still opportunities. Rather than think about loss of hope, think instead about purpose and opportunity. Think through your dreams and hopes and make some choices – some may remain dreams, others will be less important than before, some will seem especially important and some, perhaps with the help of others, you will be able to achieve.

A patient was in her early 40s when a serious life- threatening illness was diagnosed. With treatment she lived just less than a year. In those months during her treatment she taught her husband and son to cook and look after themselves.

After her diagnosis Val was housebound. Her visitors invariably found that she gave them more encouragement and help than they gave her. She continued to have an important purpose in life.

A patient with motor neurone disease: ‘I’ve got two choices. I can either spend my time worrying about the end or spend the time I have in living.’ ‘Living with Dying’, healthtalk.org

Some people have pointed out that after a life-threatening diagnosis they have appreciated nature, family, friends and all manner of things in a way they hadn’t previously. This is the paradox of life enhancement when time might be limited.

A close friend told me: ‘I signed a pre-operation form for a life-threatening operation accepting I might not wake up afterwards. Since waking up from it, every day has become a plus: what a privilege to be around to do this, that and the other.’

On the other hand, while some experience life enhance- ment others are ‘paralysed’ by uncertainty. Before a difficult diagnosis, uncertainty as to what might be wrong causes enormous anxiety. The relief at having an explanation for all the symptoms can then be replaced by the uncertainty for life itself ‘Will the treatment work?’ – ‘How long have I got?’ Some feel they could cope better if only they knew one way or the other. Such an accurate prediction is rarely possible. Uncertainty persists. This is part of ‘coming to terms’ with the reality of the diagnosis.

As time goes by

Many people talk about ‘a roller coaster existence’. Things seem to be going well, then there are setbacks: a worrying scan or other test, troublesome side effects from treatment or an unrelated other illness. These are all things to share with the medical team. It will help them, as well as you, to know your particular worries and hear your questions.

The most difficult time for some people is when a course of treatment comes to an end. During the course of treatment, they look forward to its completion and the freedom from any resulting side effects. However, when the hard slog of repeat treatments and side effects is over, they feel lonely and isolated. They miss the close involvement of the medical team.

Talking to someone who has been through this before can be very useful. Specialist nurses, patient support groups and agencies can also help. We have listed some of these at the end of this book. Talking about these anxieties will often help. Friends need to remember these normal but often unexpected emotions.

Continued fear

Sometimes I had patients who continued to suffer psychologically from the uncertainly, about the future even if treatment had gone well. Talking with the specialist nurse, the information centre, their doctor or counsellor helped some of them. Some needed prescribed medication to lift their mood.

A patient was in her 30s when she developed a rapidly growing rare tumour wrapped around her neck that was immediately life threatening and needed emergency chemotherapy. Although she responded to the treatment dramatically and fully, overwhelming anxiety that the tumour might come back made her unable to look after her 4-year-old child or her husband. Fortunately, but only after many months, she agreed to have antidepressants and as a result, after a few weeks, was able to start living again. The tumour did not come back.

Key Points

  • A new life-threatening diagnosis is a common situation with common reactions
  • Ways of coping vary and are equally valid
  • There is great value in talking with the medical team, your GP and trusted family and friends
  • If you are the person with the diagnosis try to remain positive, look for a daily purpose
  • If you are family and friends, know that ‘just being there’ is helpful. No-one knows exactly what to say. Remember that even after the end of treatment support is needed and can be very helpful

At the end of the book we have listed books and pamphlets you might find useful. There are also listed websites of information and support organisations that are regularly updated online.

Notes

1 American Cancer Society: ‘Telling others about your cancer’ www. cancer.org/treatment/understandingyourdiagnosis/talkingaboutcancer/ talking-with-friends-and-relatives-about-your-cancer (accessed May 2016).

2 American Cancer Society: The emotional impact of a cancer diagnosis www.cancer.org/treatment/treatmentsandsideeffects/emotionalsideeffects/ copingwithcancerineverydaylife/a-message-of-hope-emotional-impact- of-cancer (accessed May 2016).

3 ‘Living with Dying’ (healthtalk.org) recorded interviews with people with life-threatening illnesses, introduced by Dawn French: www. healthtalk.org/peoples-experiences/dying-bereavement/living-dying/ topics (accessed May 2016).

4 Burnham, Elizabeth Dean, When your Friend is Dying (Kingsway Publications, 1983) Chapter 3.

5 McQuellon, Richard P, and Cowan, Michael A, The Art of Conversation

through Serious Illness (Oxford University Press, 2010) p19.