Work and daily life

Treatment for acute leukaemia requires spending long periods in hospital, so people who had been working had to take extended sick leave from their jobs and work had to be handed over to colleagues. With time spent recovering at home after in-patient treatment, absences from work typically lasted several months, sometimes over a year. Many people went back to work after their illness, but after such a long break that could be challenging, especially because people had less energy and tired easily. Most had returned on light duties at first or part-time and gradually increased their hours. Joanna turned down work projects for her self-employed architect husband while he had been in hospital because he might not have been able to finish them.

A few people managed to do some work during treatment or while recovering at home and before formally returning to work. For instance, a business consultant started working at home and attended two international conferences in countries for which he needed no inoculations. His office was near his home but when he first returned to work he took a cab until he was strong enough to walk.

Some people said that returning to work made them feel normal again; Deb said it was like ending a jail sentence. Achieving remission from chronic myeloid leukaemia (CML) enabled one woman to return to full-time education and pursue a professional career.

Others found coping with work tiring and difficult so they changed their job or gave up work altogether. For instance, Julie felt that her employers had been understanding at first but not for long; they had expected too much from her and the commuting was exhausting. Her husband persuaded her to take a less stressful job closer to home.

Others decided to leave their jobs for other reasons. Ian quit police work after deciding that it wasn’t fair on his family to risk his life again through work, and after a period as a househusband he retrained as an occupational therapist. He turned his leaving party into a fundraiser for the haematology ward where he had been treated. Although his employers wanted him to stay, Michael, a charity director (quoted above) decided to retire at age 60, a year after returning to work, because his future health was uncertain. One woman had started a new business; Neil was restoring an old house with friends.

Some people never returned to work after treatment, either because they knew they couldn’t cope with it or they wanted to do other things with their life. Dianne knew that her joint pains and lack of energy meant she wouldn’t be able to do a full week’s work. Elizabeth decided that if she survived her acute leukaemia she would focus on being a full-time grandmother. Elsa realised there was more to life than her business so she sold it and took up voluntary work.

Although treatment for chronic lymphocytic leukaemia (CLL) rarely requires long hospital stays, some people found that their symptoms reduced their ability to perform well at work, and therefore retired early. Jane was taking too many sick days and her employer wouldn’t let her go part-time. Marilyn went part-time before stopping altogether. One man had to give up work when he was spending a lot of time in hospital and wasn’t expected to survive. Others gave up their jobs because of other illnesses; Beverley said that doing so had relieved her leukaemia symptoms too.

Many people who had to give up work because of their leukaemia said it had made them feel sad, depressed or angry. Some had closely associated their identity and self-esteem with their job; others had enjoyed their work and had been good at it and missed doing it.

Some people who gave up work also had to stop doing certain hobbies or other daily activities for the same reasons. Others had already retired before their illness but found it difficult to continue to do everything they used to do. In addition to retiring from waitressing Thelma can no longer do all her housework and has to rest more. She has also stopped holidaying abroad because of the risks of flying when her platelet count is low. Difficulties in getting suitable travel insurance were a problem for her and for Len who can no longer spend the whole winter abroad (see ‘Finances’). Jane stopped going to the gym because her tiredness prevents her from doing much exercise and she can no longer afford the membership fee now that she has retired. Some had limited their social life or hobbies to avoid the risk of catching infections from others.

By contrast, other people were looking for or had taken up new activities or hobbies after their illness, such as writing, learning the guitar, or community work. Many were doing voluntary work for leukaemia charities or the Citizen’s Advice Bureau. Some were looking after grandchildren. Deb, a Hindu, had started attending church because he is grateful for other people’s prayers during his illness. Rani studied Buddhism and trained as a healer.

People who had few or no symptoms from their CLL said the condition had so far not affected their daily activities. Luke’s hairy cell leukaemia had been treated so quickly that the illness only briefly affected his life.

* AML - Acute myeloid leukaemia
  CML – Chronic myeloid leukaemia
  CLL – Chronic lymphocytic leukaemia

Last reviewed: December 2018.

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