ࡱ> ~}q` ebjbjqPqP .~::]XXXXXXXl4"4"4"4"4h",lCj"X#X#X#X#X#4'h(p C C C C C C C$Dh^G~1CX)X#X#))1CXXX#X#FC=*=*=*) XX#XX# C=*) C=*=*?XXAX#" #4") @ C\C0C@G)4G,AAGXB4(0)"=**)F)(((1C1C3* (((C))))lll$ llllllXXXXXX  Understanding Terminal Illness Terminal diagnosis The diagnosis of a terminal illness strikes terror into all those at the receiving end, whether this is you or someone close to you. Your mind will jump forward to images of leaving loved ones, to loss of dignity and to you lying in bed, dependent on everyone around you. All the magazine articles, friends' depressing tales and soap opera storylines merge into one frightening vision. Time stands still, priorities change and life and death take on new meanings. These reactions are normal. The goal is to try and find a way through the overwhelming emotions and practical hassles of coping with a serious illness: to reach a level of acceptance that allows you or whoever is suffering to make the most of whatever time is left. It's about living with an illness, rather than dying from an illness - and continuing with the pleasures and responsibilities that give our lives colour and meaning. Access to appropriate information and support, ideally in the local community, is critical in helping patients make wise choices from the mass of possibilities presented at diagnosis. Seizing control Our culture in recent years has focused so much on youth and beauty that it's become harder to bring discussions about death and dying into the open. Many journalists and celebrities have shared the stories of their terminal illnesses, but it's still hard for most of us to discuss diseases such as  HYPERLINK "http://www.bbc.co.uk/health/conditions/cancer/" cancer. Much of the challenge of living with a terminal illness is about living with uncertainty and still feeling in control of your future. If you seize control, you and your family can make this a very precious time. Having goals and staying creative are both important parts of life, and these become more important if your future is limited. Reassuring loved ones Patients often find that their friends and family keep their distance after a diagnosis of cancer. A level of fear comes into the relationship and this further isolates the patient, who needs friendship and support more than ever before. Life may be different after a serious diagnosis, but the person is the same. People have described feeling 'untouchable' or 'infected' once cancer is diagnosed - however, you can't 'catch' cancer. So patients must constantly reassure those around them that they're the same person as they always were and that company and contact is vital. Initial reactions Most people live their lives as if somehow immune to life-threatening events. They tend to believe they're in absolute control of their time here. A diagnosis of cancer or other life-threatening disease shatters these assumptions. The immediate reaction to such bad news tends to be a mixture of disbelief, confusion, shock and numbness. Most people find it hard to remember what's been said and it's often necessary to go back over the information at a later stage when the shock of the news has passed a little. Adjustment styles Once the initial confusion and panic settles it seems that people interpret the threat posed by the bad news in several ways. Greer and Watson (1987) identified these five common adjustment styles: Fighting spirit: 'This is a challenge. I'll win.' Avoidance or denial: 'It's not that serious.' Fatalism: 'It's out of my hands. I've had a good life - what's left is a bonus.' Helplessness and hopelessness: 'There's nothing I can do. What's the point of going on?' Anxious preoccupation: 'I'm so worried about everything all the time.' These summarise the patterns of thoughts, feelings and behaviours that an individual may display. It can take weeks or months for a pattern to develop. Many individuals can adopt all five styles at different times during the initial adjustment period - swinging from positive to hopeless, through fatalism to periods of dark depression or complete denial. Offering support It can be difficult and frustrating for those trying to support someone during this time. Conversations and behaviours can feel repetitive and circular and enormous patience is required to be alongside someone during this traumatic period. Relationships within the family and with friends can come under huge strain. Consistent support without judgement or criticism is vital. It's important to remember that the vast majority of people do cope well with bad news and develop good emotional adjustments. Very few people need specialist intervention from psychologists or counsellors. Many publications and the media often promote the 'fighting spirit' as the best possible response to the news of cancer. These claims are mostly unfounded and hugely damaging to those individuals who cannot react in this way. No one facing the bad news that they've a life-threatening disease should be made to feel guilty about their emotional response. Different reactions are a result of many life experiences prior to the cancer threat, and as such are neither predictable, nor right or wrong. Facing despair Hope is based in reality - it's not optimism, wishing or dreaming. Facing up to dark and difficult truths enables hope to emerge and new doors to open. For example, when cancer is first diagnosed the hope is for a cure. If the cancer spreads or the treatment doesn't work then the hope changes - one hopes that the cancer can be held at bay for as long as possible with few symptoms. Hopes for family holidays, reunions and anniversaries can be worked on and achieved. This can be a special time. If the cancer spreads further and it becomes clear that it'll cause death then hope shifts again. The hope is for a peaceful, pain-free death, for good endings with friends and family, for reconciliations - and for preparation with spouses and children who'll be left behind. Memory boxes and books, letters and photographs can be used to pass on pearls of wisdom and hopes for the future of those left behind. Beliefs beyond death can be examined and spiritual issues never normally discussed can lead to deep and meaningful moments with huge intimacy and understanding. Setting achievable goals When despair creeps in it's often because expectations are unrealistic. Goals can be set that are impossible to achieve and the person repeatedly fails and becomes frustrated and hopeless. Re-setting goals and accepting limitations means that plans go ahead and pleasure and fulfilment allow hope to return - and despair vanishes. For instance, many people dream of a holiday somewhere warm and sunny. However, holiday insurance can be difficult to obtain, travelling by air can be fraught with obstacles and it seems that one barrier after another is put in the way. Altering the goal slightly to travel within Europe by train or a visit to the beautiful Devon coast, for example, can suddenly make this dream a reality, and hope is back. Day to day, it's important to attempt activities that are achievable - it may no longer be possible to dig over the entire garden, but it may be hugely rewarding to plant out summer bedding plants and transform the garden with colour. INCLUDEPICTURE "http://www.bbc.co.uk/f/t.gif" \* MERGEFORMATINET  Dreams and wishes are important but can disappoint and frustrate. Hope is real and gives huge comfort and peace - leaving no room for despair. Fighting spirit The person sees the illness as a challenge and has a positive attitude towards the outcome. People tend to seek information from various sources - cancer charities, local information centres, the internet - and make full use of the medical and alternative options available to them. Avoidance or denial The threat from the diagnosis is trivialised or denied completely and the future seems bright. This appears to be a surprisingly useful way of coping unless it interferes with accepting treatment. It can be seen as a form of distraction which allows the person to get on with life positively. However, family and friends may find this hard to accept. Fatalism An attitude of passive acceptance is shown. Little effort is made to gather information or 'fight', however the person will trust the doctors and take up any treatments offered. This passive style may be frustrating for family and friends. However fatalism is a 'safe haven' and keeps darker and more difficult emotions at bay. Helplessness and hopelessness This can be a very distressing adjustment style for all involved. All seems black, survival impossible, and the threat overwhelming. The person 'gives up' and all efforts to cajole them from this negative stance fail. The helpless and hopeless feelings often transfer to those around them, leading to an air of depression. Professional help may be needed. Anxious preoccupation Constant reassurance is required. Huge amounts of time are spent worrying about the cancer. Any physical symptom is immediately assumed to be a further manifestation of the disease. Excessive information-seeking - particularly on the internet - feeds the anxiety, which at times can be overwhelming and lead to panic. Constant companionship is often required and family and friends find it hard to leave the person alone even for short periods. Waiting for test results and appointments can be intolerable and should be avoided whenever possible. Counselling and teaching of relaxation exercises can be useful. Using previous coping strategies Whatever the emotional adjustment to stress, the way someone behaves can greatly affect their wellbeing. It can be important to think back and use ways of coping that have helped in the past. Some people talk to friends or family, while others withdraw, preferring to be alone, listening to music, reading books or taking long walks in the countryside. Alcohol and food can be useful, in moderation. Hobbies and social outlets can be vital to use as practical distractions from difficult thoughts and feelings. Developing new coping strategies It's sometimes not possible to use the ways of coping that have helped in the past. For instance, if someone has used sport or gardening as a way of dealing with anger or emotion in the past, he or she may no longer be well enough to use this tried and trusted strategy. Treatments get in the way of social events and many people 'go off' various foods and alcohol during chemotherapy and while taking other drugs. Concentration can be poor, making reading or watching films difficult. Time needs to be spent on developing new ways to cope. The use of complementary therapies can be helpful. For instance, people who've never had a massage may find this an extremely useful way to relieve tension and relax. An integrated approach There's a huge interest in complementary therapies and millions of people already turn to them, often because they're dissatisfied with conventional healthcare options. At present there are few complementary therapies available in mainstream NHS medicine. However, this issue is now being promoted by Government, and following the House of Lords Select Committee Report in 2000, there's increasing support for complementary therapies to be used alongside conventional medicine in the NHS. This is a system of medicine called integrated medicine which encourages conventional doctors to have a more open mind and perhaps positively encourage patients to look at complementary treatments alongside standard treatments. Therapies and serious illness Many NHS cancer units and charitable hospices have taken on board these ideas and now have teams of complementary practitioners offering a range of treatments. Therapies such as aromatherapy, massage, reflexology, acupuncture and homeopathy are widely used by cancer patients. They're safe, promote general wellbeing and are in great demand. Patients are often looking for non-toxic alternatives to conventional medicine - treatments that might not cure them, but will help them to relax and cope with the stress of living with serious illness. Deep relaxation will help many of the symptoms of advanced cancer, such as pain, nausea and breathlessness. One problem is how to identify a properly trained practitioner. Speak with the complementary therapy coordinator at your local hospice, a complementary therapy umbrella organisation or a specific organisation dedicated to a particular therapy which appeals to you. The use of support groups to hear how others have coped can be valuable. Developing new ways to cope can be a daunting challenge, but necessary to ensure emotional survival. How loved ones can help Remind yourself of this: you're the same person you were before your diagnosis. Whatever qualities your friends and family have always valued you for are still there. It's natural to want to protect those you love from what you're experiencing - but the risk is that you'll get lonelier and those around you will feel excluded and robbed of the opportunity to show love and support. Secrets are a great burden, so share the load with those you care about. Tell them how you feel and how they can help. Talking about problems relieves anxiety. Don't try to go it alone. It often helps to look at the past. Reminiscing is therapeutic and often helps when broaching sad and sensitive issues. Photos are reminders of good times long forgotten. Making sense of the past can help you accept an uncertain future. Your friends and family may be feeling just as shocked, angry, sad and frightened as you are. This may make it hard to talk to them, but a family which communicates well is much more resilient and able to cope than a non-communicative and secretive family. What doctors can tell you Even though doctors are now getting more training in patient communication, they're sometimes the worse people to talk to about mortality. Often, they can be ill at ease with patients they can't cure, and find it difficult to break bad news. They feel as if they've failed them in some way and embarrassment or guilt makes them seem aloof or distant. A doctor may give vague answers if you ask questions such as 'How long will I live?' He's not being obstructive; he's probably telling the truth. It can be difficult to predict exactly how much time you have left. Statistics can only give a broad idea. If, for instance, 70 per cent of those suffering your illness survive for five years, you've no way of knowing if you'll be one of those who live for that period or one of the 30 per cent with a shorter future. Doctors should avoid exact numbers and instead use more general terms such as weeks, months or years. This should be helpful enough to allow families to plan for the future. When more exact predictions are given, patients can feel cheated if their time turns out to be shorter, and left 'in limbo' if they live beyond their 'due' date. It's best not to press your doctor for a precise figure. How to help You can help your GP and yourself in the following ways: Let your doctor know how much or little you want to know about your illness. Tell him when you've heard enough. Take a friend or relative with you to the clinic: it's a time of crisis and you may forget much of what's said to you if you're shocked by the news. If it helps, write things down or, with the doctor's consent, tape the discussion. Because doctors often forget that other professionals can help at this difficult time, ask what other local support is available, such as palliative care services. Fatigue The fatigue of a serious illness can be overwhelming. It often starts first thing in the morning, even after a good night's sleep. It has many causes: the illness itself, anaemia, medications and treatments such as chemotherapy - and stress and worry. It's a weariness that comes with no exertion at all. Some patients can even find it difficult to walk across a room. Few sufferers mention fatigue to doctors because they don't think anything can help. In fact, there are few straightforward medical treatments, but there are a number of practical tips which can make it more bearable: Imagine you have a bucketful of energy for the day. Decide what you want to do with it. Don't waste it on anything you don't have to do. Decide to take several short naps during the day. Don't wait until you're so exhausted that you fall asleep and then miss what you were planning to do. Curiously, exercise can help fatigue. A short walk around the garden might improve your energy levels, appetite and sense of achievement. Discuss your fatigue with your doctor or nurse. There may be a simple answer. Weight loss Losing weight when you have cancer makes everyone anxious. To those around you it'll be a sign that your condition is deteriorating, and for you it may signify you're losing your strength. The fact is that some cancers cause marked weight loss even if you're managing to eat well. The cancer stops the food being used by the body normally. This is called cachexia and is difficult to reverse. Eating enough calories isn't the whole answer. But it's still important to try to eat a nutritious diet, as well as 'a little of what you fancy' - it'll help with energy levels and general strength. Eating is one of life's pleasures. Your social life may revolve around food and many patients with cancer would like to eat, but appetite loss, taste changes and nausea often get in the way. There's no place, incidentally, for extreme diets or huge doses of vitamins - these become a distraction and an obsession and often lead to malnutrition rather than improved wellbeing. Nausea Nausea is an unpleasant symptom which can be caused by the cancer itself or the treatment. There are many ways to help. Medication can be valuable, but it's important to take tablets regularly to actually prevent nausea, rather than wait until you feel sick, when the tablets won't work as well. Some find 'sea bands' help: these are elasticated wristbands that stimulate acupuncture points that help with nausea. They have no side effects. Ginger is a well-known natural remedy that helps nausea. Try a cube of crystallised ginger or a ginger nut biscuit on waking. In Sweden, swallowing crushed ice is used a lot for cancer patients with nausea. Appetite loss Sometimes it's hard to eat at all. A complete lack of appetite is common in very advanced disease. Your carers will find it hard to watch you eating so little, as feeding is so bound up with caring and love. But right at the end of life, it's completely natural not to eat, and nurses and doctors should be helping carers to come to terms with this, so that the pressure to eat is taken away. However, earlier in the illness, many patients want to eat but simply have no appetite, and so can easily become demoralised and lose hope. These tips can help: Relax. Anxiety and stress are potent causes of appetite loss. Plan meals ahead. If you've no appetite, you won't want to make much effort at mealtimes, so make sure the fridge is full. Eat lots of snacks throughout the day if full meals are impossible. Eat small amounts of natural foods rather than processed supplements. Appetite is often at its peak in the morning, so aim for a high-calorie breakfast. Take some exercise or some alcohol before a meal to stimulate the appetite. Eat small portions packed with calories. Treat constipation, if you're suffering from it. Ask your doctor about medications that can help with appetite. Breathlessness and panic This is a difficult symptom to live with. Relatives report it's harder to care for a breathless patient than for a patient in pain. Breathing is so fundamental to life, that any threat to it can be frightening. Anxiety and breathing problems are closely linked. If you feel breathless, you begin to panic, which makes you more breathless, which makes you more panicky, and so on - a vicious circle which is difficult to break. Many fear that suffocation or choking might occur, but this is rare. The key is to learn how to control and relax your breathing. Simple tricks to help a panic attack by slowing your breathing down and breathing with your stomach muscles can be easily taught. Ask your doctor for help. Here are some practical tips to help everyday breathlessness: Set priorities for what's important and plan ahead. Literally, save your breath. Allow extra time for physical activities and incorporate rest breaks into them. Keep a fan with you. Put on a towelling robe after a bath, rather than get too puffed out by drying yourself too vigorously. Prepare meals that don't need too much chewing. Choose loose clothes and sit down to wash and dress. Ask your doctor, your district nurse or your hospice nurse whether anyone can help with your breathlessness. Many nurses now have special training in this field. A safe place Hospice care is a system of care that helps those with an incurable illness to focus on making the most of whatever time is left. Support is also offered to those close to the patient, and many hospices also offer care during the bereavement period. Hospices are no longer just for the last days of life. They now offer a range of support, often alongside active treatment for an illness. The focus of modern hospice care is on helping people to live well until they die - to help with suffering, be it emotional or physical. The principles of respect, choice, flexibility and dignity are those that underpin the hospice movement. High staffing ratios and a huge number of volunteers allow families the time and space to address what's troubling them. This is rarely possible in a busy hospital ward. You can be admitted to a hospice for help with a particular problem such as pain or nausea, or you can go for a week to give your family a break. Hospices also offer expert care at the end of life. Dying in a hospice can bring families peace and allow a closeness which isn't always possible at home, where there are many other distractions. Attending as an outpatient Most hospices have teams of doctors, specialist nurses, family support departments, chaplains, physiotherapists, dieticians and complementary therapists whom you may be able to access without being admitted. You can attend as a day patient or an outpatient. Some hospice services aren't based in a building at all and focus on providing hospice nursing care in the patient's home. If you don't know what hospice and palliative care services are available locally and your GP or district nurse can't help, call the Hospice Information Service on 0870 903 3903. Further Information Action Against Male Cancer - Offers support, advice and information to men who are experiencing cancer related problems, or wish to protect themselves against cancer.  HYPERLINK "http://www.icr.ac.uk/everyman"www.icr.ac.uk/everyman British Association for Counselling and Psychotherapy - Offers a database of counsellors across the country.  HYPERLINK "http://www.bacp.co.uk/"www.bacp.co.uk Breast Cancer Care - Offers support, advice and information to people who are experiencing breast cancer.  HYPERLINK "http://www.breastcancercare.org.uk/"www.breastcancercare.org.uk Cruse Bereavement Care - Offers support, advice, information and counselling to people who have experienced a death.  HYPERLINK "http://www.crusebereavemnentcare.org.uk/"www.crusebereavementcare.org.uk NHS Direct - Offers advice and information to people on a range of physical and mental health problems.  HYPERLINK "http://www.nhsdirect.nhs.uk/"www.nhsdirect.nhs.uk PSS Crisis Counselling Service - Offers short term, rapid response counselling for people affected by a sudden trauma or event.  HYPERLINK "http://www.pss.org.uk/"www.pss.org.uk The Samaritans - Offers support, advice and information to people who are experiencing suicidal feelings or despair.  HYPERLINK "http://www.samaritans.org/"www.samaritans.org Terrance Higgins Trust - Offers support, advice and information to people who are dealing with HIV and Aids and related problems.  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