Being in hospital

Long periods of time are spent in hospital by people being treated for acute leukaemia or myelodysplastic syndrome (MDS) that is at high risk of developing into leukaemia. People with other types of leukaemia or MDS are mainly treated as outpatients but may be in hospital at times. Some people felt daunted about going into hospital and took a while to feel comfortable with their surroundings and the routine. Some particularly disliked being woken at night to have their vital signs measured. Others had been surprised at how quickly they got used to hospital life and became 'institutionalised'.

Because leukaemia treatment attacks the immune system, patients are often isolated in personal rooms or wards with filtered air and strict hygiene rules. The quality and ambience of individual rooms varied between hospitals. Some people found their room pleasant, peaceful and well equipped with television, phone, hi-fi and ensuite bathroom. Neil said his was better than some hotel rooms. Jim said the showers were 'awesome'. Others found their room depressing and had problems with temperature regulation or hygiene. Some people personalised their room with possessions from home. Gilly arranged hers with kitchen, study and reading areas. Brian was disappointed to have no internet connection so he got a modem that would connect his computer via his mobile phone. Some hospitals restricted what people could bring in from home.

A man in his fifties who was admitted to hospital with autoimmune haemolytic anaemia, a complication of chronic lymphocytic leukaemia (CLL), first went into a general cancer ward as the haematology unit was full. The ward was depressingly full of very ill old men, some of whom died while he was there. He was later moved into a single room in haematology and always had his own room in hospital thereafter.

Living in isolation for long periods could be difficult for people who were not used to being alone. Some had felt lonely, frustrated, hemmed in or bored. Others didn’t mind their own company and welcomed being left alone when they felt ill. John said it was the first time in his life that he'd been alone but he didn’t mind.

Adhering to strict hygiene rules is essential to protect leukaemia patients from catching infections from other patients, staff or visitors. Isolation rooms must be kept spotlessly clean, doors should be kept closed, and staff should wear gloves and aprons and clean their hands thoroughly between dealing with different patients. Some people said they were always alert to what the staff were doing because of fears of catching infections.

Patients and families also had to take responsibility for cleanliness both in the hospital and when they were allowed home. Julie wanted her bedding from home, which meant that her mother had to launder it daily. Julie was warned to clean her teeth every time she ate something. The fridge in Joanna’s husband's room wasn't working and was therefore not safe for keeping food chilled. She asked for a replacement and ended up buying it herself. She also bought foam insulation rolls to put on the heating pipes to keep the temperature down in his room - the windows had to remain closed to keep out dust and fungal spores from nearby building work.

At times, people were only allowed to leave the isolation unit to go to another part of the hospital for a medical procedure or test. One man who left his room once a week to go for a chest x-ray had to wear a face mask. Neil got into trouble with the nurses for leaving his room with his drip stand during a blood transfusion to take a visitor to the hospital café. Before starting treatment Jim was sent to another part of the hospital to bank some sperm to preserve his fertility. Going to this old, dirty building and mixing with the public worried him in case he caught an infection. He later learned that he could have done it in his room.

For hygiene reasons some hospitals restricted visits from family and friends. Some people were allowed no contact with children or grandchildren while in isolation. One man said his wife was allowed to visit but he could only look at his children through the glass partition. John’s twin brother wasn't allowed to visit because it was thought that his immune system would be too similar to John’s and the risk of passing on an infection would therefore be too great. One man was grateful that the hospital was near his home so that his wife could easily visit. Most people's visitors had to take hygiene precautions such as washing their hands and, in some cases, wearing a plastic apron, but this wasn’t always so.

Hygiene precautions extended to food, and people being treated for leukaemia had to adopt a ‘neutropenic diet’. This involves avoiding raw or partially cooked foods, unpasteurised dairy products, food containing live cultures of bacteria, and thoroughly washing utensils and hands before food preparation. Hospital caterers provide suitable food but the same restrictions applied when people were allowed home while neutropenic. Mike said that the hospital couldn’t supply information about the diet so he got it from his local Maggie’s centre. He found it a bit tricky to adopt at first as it meant cutting out things that he usually ate a lot of, such as cheese and meals made from leftovers.

Hospital food needs to be appealing to people who are ill and who don’t feel like eating. However, several people mentioned that their hospital food had been poor and some had spoken to the authorities about it. It was common for family members to bring in food from home to encourage their loved ones to eat.

Last reviewed: December 2018.


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