Leukaemia

Other sources of support

Family, friends and colleagues
Many people said that they’d been lucky to have good support from family, friends and colleagues. Some gave emotional support by sending cards and messages, listening, or just being there and encouraging them. Many people found it easier to talk about their worries to friends rather than family; some confided in one particular friend.

People said they had rarely been alone during hospital stays - friends and colleagues visited frequently and some people’s parents visited daily or even stayed overnight in the hospital. Someone had often accompanied them to hospital appointments to help with transport and parking and to take notes of consultations. Some family members or friends had come to visit or stay with the sick person, sometimes travelling long distances, to look after them and help with housework, gardening or childcare. Those who lived far away found it hard to judge when and how often to visit. Some said the illness had brought their family closer together. Some people also helped by researching information about the illness.

Supporting a close relative or friend through serious illness isn't easy and some people could see that their illness was particularly distressing their parents. Some family members couldn’t help because they were ill themselves. Some people don’t know how to react or what to say, and may find it difficult to face their sick relative or friend or to talk about the illness. As a result some friends who people had expected to be supportive hadn't been in contact whereas other more distant friends had surprised them by offering strong support. Some people accepted that friends dipped in and out of the relationship, others couldn’t understand such behaviour and ended those friendships. Some of Chanelle’s friends told her that being her friend during those difficult times had made them 'grow' as a person.

While people with leukaemia were grateful that family and friends were always available, they also valued having space when they felt like being alone. Some people preferred family and friends to treat them normally and not to keep asking how they were. The most important thing to Ann during her hospital stay had been reading weekly instalments of her friend’s diary telling tales of normal life.

Other people’s experiences and support groups
Family and friends can only support someone with cancer up to a certain point and many people with leukaemia said that they had found it immensely helpful to find out how other people had coped with the illness. Some were inspired by reading patients’ stories in books or on the internet; others from seeing cheerful children with leukaemia in hospital. Talking to others with the same illness reassured many - they understood their feelings and showed them they were not alone. Some struck up friendships with other patients while in hospital; others were introduced through a health professional, a local support group or a national support organisation.

Few people had found a local support group for those with leukaemia. Some said they would join if one existed; others had thought about starting one but lacked the energy because of their illness or didn’t know how to do it. Len had contacted other patients through an online forum but hadn’t learnt what he wanted to know.

Talking to other patients is not for everyone. Some said they were not the kind of person to join a support group, preferring to cope in their own way. Although they said that they would be happy to help other people individually. Others had felt no need to contact support organisations because they had enough support. One woman was put in touch with other patients but decided not to pursue it because they couldn’t find a mutually convenient time to meet and she didn’t want to dwell on her illness anyway.

National Support Organisations
National support organisations such as Macmillan and Leukaemia Care offer a variety of services and many people had asked them for information about the illness or advice on obtaining state benefits or grants (see ‘Finances’). Some people had been unable to obtain the information they wanted. Others had not found out about support organisations until after they had recovered and no longer needed them. Some people wanted to give something back for the support they had received and had become volunteers with Leukaemia Care to help others with leukaemia. Jeff had been helped by a local volunteer driving service which took him and his wife to and from hospital.

Health Professionals
Some people said they had found their health professionals very supportive - staff were friendly and cheerful and the nurses showed great understanding because they had seen it all before. Knowing she could phone the ward at any time comforted Elsa. Others had found specialist nurses particularly easy to talk to about their concerns. Aley preferred to talk about his feelings with a professional rather than to friends. A radiographer comforted Gilly during an x-ray, shortly after she learned her diagnosis. Counselling helped a few people to come to terms with their illness.

Religious faith
Being ill made some people think about spiritual matters. Brian discussed different religions with friends and a support nurse and started studying Buddhism. A strong religious faith had helped some to cope with the illness and to accept whatever the outcome would be. Prayer enabled Claire to find peace and not to fear death. Some had been uplifted by knowing that other people had prayed for them.

Last reviewed: August 2015.

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