1. Coping with life-threatening illness
The time of diagnosis. Telling others. Time: a healer. Explanations from healthcare staff. Keeping in touch withyour GP. Time from friends, family and communities. Goals and interests. Renewing contacts. Ways of coping. Having a purpose. Treatment ending. Continued fear. Support organisations.Elaine Sugden
This chapter discusses the most difficult time when thereis a new diagnosis of life-threatening illness. Cancer is theone that springs to most minds; and because I was a cancerdoctor, many of my illustrations are from cancer patients.There are other, more unusual, life-threatening illnesses,some so grave and rapid that there is no opportunity for thesort of reflection given here. The cause of the illness doesn’tmatter, as the principles of dealing with it are the same. It isalso important to remember that the term ‘life-threateningillness’ does not mean that an untimely death is inevitable.Today, many people are cured, and treatment has given yearsof good quality survival, but sadly not to all.
The time of the diagnosis
The diagnosis of a life-threatening disease suddenlychanges everything. Perhaps there had been fear that recentsymptoms might result in a serious diagnosis. For some, itcomes ‘out of the blue’. There might not have been anysymptoms, or the idea of something serious being wrong hadnot been thought of. Being screened for diseases such asbreast, prostate or bowel cancer is a worrying time for some,whilst for others it is just routine. Most of those screened willnot have the disease, but it is a devastating result for the tinyminority who do.
Whatever has gone before, a confirmation of the diagnosisbrings the possibility of death sooner than expected; and thisbecomes centre stage in our thoughts. We leave the placewhere the news has been given in a daze, with questionsunasked or unanswered. Much of what has been said wasprobably not heard. Nothing seems real, everything belongs toa dream world, which we long to wake from. The diagnosis ofserious disease will not always lead to an early death, but atthis stage the future is uncertain and has to be faced.Why is death and dying such a problem even though itwill happen to all of us? We shall certainly all die, but fewfeel ready. Even the very elderly can find a life-threateningdiagnosis hard to bear. Rightly and properly, there is a stronghuman instinct to avoid death, to hang on to life, to put offdeath’s inevitability and finality.Fear is the major emotion. Fear about self, fear for family,fear of pain, of the possibility of disability, and fear of whatmight lie beyond death. The uncertainty of whether treatmentmay or may not cure can be intolerable. Phases of denial,anger, guilt, and depression, in any order and for variablelengths of time, can be experienced. Overwhelming feelingsof disappointment and loss might occur, as well as a sense ofthe unfairness of it all, prompting the cry ‘why me?’ There canbe sleeplessness, and ‘dark’ dreams.
For some, the worst worry is about others. A friend, Jill, soonafter her 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 terrifiedof leaving my husband. We have often talked aboutdeath in the abstract, and decided we would like to gotogether, as neither of us feels we would cope being theone left behind. I do really fear for how he would copewithout me.’
Telling others
Not everyone has a trusted relative or friend with them whenthey hear the diagnosis, and some still prefer to keep it tothemselves. Even husbands and wives do not always confidein each other, thinking that there will be time in the future to’spill the beans'. I would say, it is almost impossible to keepsuch important information from someone who cares aboutus without them realising that something is wrong. Howeverhard it may seem, it is good to share the diagnosis, and talkabout its consequences. The truth can be easier to bear thanthe possibilities our imagination conjures up.
Jill again:‘My husband has surprised me with his willingness toface up to my diagnosis. He has never been one whocopes well with illness, either his own or anyone else’s.He has been hugely supportive so far, transportingme to various hospitals and hanging around for hourswaiting for me. I do feel proud of him – we have evendiscussed our Wills, which were drawn up many yearsago, and may need amending slightly. He wants to readall the literature I have been given.’
Telling others about the diagnosis is, for some, one of themost difficult things to do. This is especially so in tellingchildren who need to know that the disease is no-one’s fault,that it is not catching, that their questions will be answeredhonestly and, most of all, that they are loved and cared about.1Knowing that many who want to help are interested in ourdiagnosis, is important. But in itself, this can also bringchallenges, as this young American in his mid-twentiesexpresses:
‘I said I was going to get cards printed up saying whatkind of cancer I had, and what treatment I needed. I know people cared, but I got sick and tired of repeatingthe same story every time someone asked…’
‘Coming to terms’ with the diagnosis and the possibility of ashortened life span is made easier with kindness, care andsupport from others. The way in which we, and others, makeuse of the time we are given, is important.
Time: A healer
It is true that time is a great healer. In this sense, we arenot talking about physical healing of the disease, but aboutcoming to terms with the diagnosis, and the expectation of’untimely' death. No one comes to terms with bad news withina few hours; it may take days, weeks or even months. But inthe end most of us do.
A cancer survivor recalled:
‘There’s a fear that goes through you when you aretold you have cancer. It’s so hard in the beginning tothink about anything but your diagnosis. It’s the firstthing you think about every morning. Talking aboutyour cancer helps you deal with all the new emotionsyou are feeling. Remember, it’s normal to get upset. Iwant people diagnosed with cancer to know it does getbetter.’
Time with doctors, nurses and other healthcare staffDoctors, nurses and other healthcare staff need to dedicateadequate time to explaining the diagnosis and treatment.They must discover the patient’s priorities, show care andoffer continued support, which can help to calm fears aboutthe illness and its treatment. Knowing the truth, and havingconfidence that the medical staff will be honest, is far morehelpful than the false kindness of being shielded from apainful diagnosis.
In a situation where treatment will not be effective, timefor full explanations and for the reassurance of continuedphysical and psychological care is especially important.Specialist nurses, trained to understand the particular diseaseand its psychological, as well as physical, effect on the patient,are invaluable.
It is a good idea not to leave out your own General Practitioner(GP). He or she is still your doctor. It was not unusual for mypatients to stop seeing their own doctor because they were’now under the hospital'. I encouraged them to visit theirGP from time to time, to keep in touch and inform him/herabout how things were going. These visits also ensured thatmedication for any symptoms or side effects was in place. Yourdoctor can encourage you, listen to your priorities for treatmentand care, and help you to understand complex letters from thehospital which are full of medical jargon.
From a 32-year-old with a brain tumour who felt that thedoctor had kept the full truth from him: ‘People want truthfulinformation and to be told what is expected to happen. Theinternet has been the best place for me to get information.’From ‘Living with Dying’, healthtalk.org
The internet is a useful source of information.However, it ishelpful to ask your doctor or specialist nurse about whichsites they would recommend in your particular case.
Time with family, friends and communities
Receiving love and support from family members and friends isof the greatest value and importance. Most of us need company,and it can be devastating to be shunned by those who feel theydon’t know what to say. (No-one really knows what to say.) Justbeing present and availablefor whatever is needed isimportant, even if it is simplysilent companionship. Other forms of love and support mightinclude invitations to outings, parties and other gatherings, orgoing shopping together, or to the pub, races, or a sports match.It’s good to be ‘taken out of yourself’. Practical help is of great value. If you are the patient, let others help – they really dowant to. Tell them what would help you – it might be somethingthey haven’t thought of. If you are a relative or friend, be sureto ask how you can best help.
Faced with a difficult diagnosis, we want to feel that westill ‘fit in’ with the family, and with our friends and interestgroups. Whatever our situation, whenever possible, we want tocontinue to contribute our skills, pursue our interests, and havea laugh. There are other things to talk about as well as illness.
Sometimes though, it does help to talk about the illness andthe effect it is having. Those you choose to speak to mightsurprise you. As Betsy Burnham points out, ‘People shareselectively with whichever individual or group they chooseand might never ’open up‘ with their closest friends.’
Time for goals and interests
When the length of life is limited, and a great deal of time istaken up with hospital visits, it is helpful to think about whatyou like to do with the time that is available. Having a purposeday-by-day is good therapy. Of course, energy might be limitedand free time measured only in short spells, but it is worthplanning for, and trying to do something each day that youwould 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 interestingthings, both in and outside the hospice, that I wouldn’thave been involved in if I hadn’t had cancer.’
Time for renewing contact with family and friends
Often, there are people we have not seen for months or yearsthat we desire to see and talk to. There will be some we wantto thank for their love and friendship; maybe for something they did for us as a child, or as a young or older adult. Quiteoften, there will have been family estrangements that need tobe addressed. Forgiveness is a powerful force and the healingof broken relationships will provide comfort to all involved.
Dorothea was an elderly member of my wider family. I learnedthis: She had not seen or communicated with her daughter forthirty years. In her mid-eighties she became ill and, knowingthat death was not far off, she travelled alone across the IrishSea to visit her daughter in England, to say goodbye.
Ways of coping
I worked as a cancer doctor for almost thirty years. It wasclear that people coped with a difficult diagnosis in differentways, depending on their personality and background.
‘Coping’ means to face and deal with responsibilities,problems or difficulties in a calm or adequate manner.
The active approach: ‘I’m going to fight this, it’s notgoing to get me.’ Some people regain control in thisway, determined to try to prove the doctors wrong. Theyintend to give it their best shot. However, sometimes aperson might spend so much time looking for cures thatthey miss out on spending good and meaningful timewith family and friends.The passive approach: ‘I’ll do everything you tell me,doctor.’ The feeling expressed here is that to followmedical advice ‘to the letter’ will bring the best result.The ‘head in the sand’ approach: ‘I know I’ve got cancerand that one day I am going to die from it, but I don’twant to read books, leaflets or even talk about it; Iwant to enjoy life as long as I can.’ Those who took thisapproach often did not want to discuss the diagnosiseven with the doctor, and it could seem that they hadn’tunderstood that their life was likely to be cut short.For some there are other approaches, such as lookingto a religious faith or alternative medicine to help themcope. Mary held a strong belief in a God who cares.When her cancer returned, her doctor thought shedidn’t understand, or was denying the situation. Marywas sure that she was in the hands of something morepowerful than medicine.
Coping means regaining control of self and of a continuedpurpose in life; and this is an important step. In my experience,no one way of coping is best or even better from the pointof view of altering the course of the illness. Doctors, nurses,carers, family and friends must work with the sufferer and findout how best to help.
Having purpose
For all of us, the length of our lives is limited. There are thingswe want to do, places we want to go, and people we wantto see. As life goes on, we change those ‘wants’ dependingon money, time and priorities. After a difficult diagnosis,time is shorter, and priorities can change; money mightwell be tighter but there are still opportunities. Rather thanthinking about loss of hope, think instead about purpose andopportunity. Think through your dreams and hopes and makesome choices – some may remain dreams, others will be lessimportant than before; some will seem especially important;and some, perhaps with the help of others, you will be able toachieve.
A patient of mine was in her early forties when a serious lifethreateningillness was diagnosed. With treatment, she livedjust less than a year. In those months during her treatmentshe taught her husband and son to cook and look afterthemselves.After her diagnosis, Val was housebound. Her visitorsinvariably found that she gave them more encouragementthan they gave her. She continued to have an importantpurpose in life.From a patient with motor neurone disease: ‘I’ve got twochoices. I can either spend my time worrying about the end orthe spend the time I have in living.’
Some people have pointed out that after a life-threateningdiagnosis, they have appreciated nature, family, friends andall manner of things in a way they hadn’t previously. This isthe paradox of life enhancement when time might be limited.
A close friend told me:
‘I signed a pre-operation form for a life-threateningoperation accepting I might not wake up afterwards. Sincewaking up from it, every day has become a plus: what aprivilege to be around to do this, that and the other.’
But while some experience life enhancement, others are’paralysed‘ by uncertainty. Before the diagnosis, uncertaintyas to what might be wrong may have caused enormousanxiety. Having an explanation for all the symptoms can be arelief, but this can then be replaced by the uncertainty aboutlife itself: ’Will the treatment work?‘ – ’How long have I got?‘Some feel they could cope better if only they knew one wayor the other. Such an accurate prediction is rarely possible.Uncertainty persists. This is part of ’coming to terms' with thereality of the diagnosis.
As time goes by
Many people talk about ‘a roller coaster existence’. Thingsseem to be going well, then there are setbacks: a worryingscan or other test, troublesome side effects from treatment,or an unrelated other illness. These are all things to sharewith the medical team. It will help them, as well as you, toknow your particular worries, and hear your questions.
The most difficult time for some people is when a course oftreatment comes to an end. During the course of treatment,they look forward to its finish, and the freedom from anyresulting side effects. However, when the hard slog of repeattreatments and side effects is over, they feel lonely andisolated. They miss the close involvement of the medical team.Talking to someone who has been through this before canbe very useful. Specialist nurses, patient support groups andagencies can also help. We have listed some of these onpage 147. Talking about such anxieties will often help. Friendsneed to be aware of these normal, but often unexpected,emotions.
Continued fear
Sometimes I had patients who continued to sufferpsychologically from uncertainty about the future, even iftreatment had gone well. Talking with the specialist nurse, theinformation centre, their doctor or counsellor, helped some ofthem. Others needed prescribed medication to lift their mood.
I treated a patient who was in her thirties when shedeveloped a rapidly-growing rare tumour wrapped aroundher neck that was immediately life-threatening and neededemergency chemotherapy. Although she responded to thetreatment dramatically and fully, overwhelming anxiety thatthe tumour might come back made her unable to look afterher four-year-old child or her husband. Fortunately, but onlyafter many months, she agreed to have antidepressants, and,as a result, was able after a few weeks to start living again.The tumour did not come back.
Key points from this chapter
- A new life-threatening diagnosis is a common situationwith 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 remainpositive, and 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. Rememberthat even after the end of treatment, support is neededand can be very helpful.