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'.
Claire worried about going into hospital; being shown around beforehand scared her more because it felt alien and she didn't seem ill enough to be there, but she gradually got used to it.
Claire worried about going into hospital; being shown around beforehand scared her more because it felt alien and she didn't seem ill enough to be there, but she gradually got used to it.
Age at interview: 37
Sex: Female
Age at diagnosis: 35
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And I was shown around the ward before I went in, which I was hoping would make me feel better and not so scared, but actually it made me feel more frightened really because it was somewhere alien to me and that I couldn’t imagine, and I did see a lot of ill people, and I still thought of myself as not really being that ill.
But anyway I went into hospital for my first chemo, I packed my bag and I was told that I might have to be in for up to 6 weeks and that I would feel very tired and that people react differently to their chemo, and some people get ill and some people don’t feel ill, and they have some fantastic anti-sickness drugs now and I don’t think I ever met anyone who really suffered from the sickness, which was to me, I thought I would get really sick, but you don’t. And I went into a ward first, which again I just felt that I shouldn’t really be there, that I wasn’t that ill. And I began to feel the longer that I was there I felt a bit more comfortable with it. The nurses were really friendly and the doctors that were around really explained well what was going to happen. But I was still frightened of actually the chemo and what it was going to do to me. And I didn’t really understand at that point what it was going to involve really.
John quickly got into the rhythm of hospital life but tried to vary the routine where possible to suit how he felt.
John quickly got into the rhythm of hospital life but tried to vary the routine where possible to suit how he felt.
Age at interview: 58
Sex: Male
Age at diagnosis: 52
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In terms of the treatment, the courses are different because combinations of chemotherapy are different and your reactions are different. But you do get into the pattern of hospital life and you get into the pattern of your treatment, and you get into the pattern of seeing people and waking up at a certain time, sleeping at a certain time. And it’s a hospital regimen that you’re getting involved in. It’s important to know that you can change that regimen if you want and that if you don’t feel particularly well because of treatment then it’s worth actually saying, “Can I possibly go without breakfast and have it later?”, or, “Can I stay in bed a bit longer?”, or, “Can I relax?”
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.
John brought lots of personal possessions into hospital to make his room more homely.
John brought lots of personal possessions into hospital to make his room more homely.
Age at interview: 58
Sex: Male
Age at diagnosis: 52
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What I found was the need to personalise the room I was in and to bring in things that I thought would make my time in hospital better. So the things that I brought in were kind of things like' a new pillow, because the pillow in the hospital was terrible, your own pillows are far better; a small fridge, which was to keep things cold; a microwave so that I could cook stuff, so when I felt hungry that I had something I could eat as I wanted it and have the food I wanted; and a stereo system and a TV; and games and books; and kind of cards and things that people had sent in.
It was important to make it my home because I’m living in it, as opposed to dying in it. It has to be done with the hospital’s appreciation and understanding. And I think the difficulty is that quite often that isn’t something they want to achieve or are willing to put a lot of effort into achieving for the patient, but it’s critical in terms of living there. And assuming that it’s recognised that you’ve got a life threatening illness, it seems to me abhorrent that people don’t understand that in the last few days of your life, if that’s what’s going to happen, that you should be in a nice place surrounded by nice things that are to do with you. But that was when I was in hospital six years ago and I don’t think you’re allowed to take your own fridges in now, and I don’t think you’re allowed to take your own microwave in. So things have gone forward but they also seem to have gone backwards.
Michael's view from his hospital window was depressing, the heating and air conditioning worked badly and water started running down the wall so he was moved to another room.
Michael's view from his hospital window was depressing, the heating and air conditioning worked badly and water started running down the wall so he was moved to another room.
Age at interview: 61
Sex: Male
Age at diagnosis: 58
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Here I was in an isolation room in a Victorian wing of a hospital constructed so that I looked out on a window into a similar room in the next ward. Red brick, decaying concrete and pigeon droppings with the occasional appearance of a very fat pigeon on the window sill opposite me. And that is dispiriting, to say the least, that even though this hospital was on the edge of a park there was no way you could see a blade of grass except for one that grew in some crumbling masonry.
There were various alarms and excursions during the hospital time. In the first period there was a terrible problem with temperature control in the room and I got pretty angry about that. And then one evening water started streaming down one wall, obviously related to the failures of the heating and air conditioning system, and when the charge nurse saw what was going on she said, ‘Clearly this won’t do in a room that’s supposed to be in near sterile conditions.’ So I was moved into a room which actually proved to be far better and where, by careful positioning, I could get a reflection of the park through a window on the opposite side of the structure for several hours a day, which was a surprising sense of triumph about being able to see something in the outside world.
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.
After 6 weeks isolation Ian begged to be allowed out of his room. He was wrapped up warmly and his wife took him around the hospital in a wheelchair. That helped him to face his remaining treatment.
After 6 weeks isolation Ian begged to be allowed out of his room. He was wrapped up warmly and his wife took him around the hospital in a wheelchair. That helped him to face his remaining treatment.
Age at interview: 43
Sex: Male
Age at diagnosis: 35
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I think maybe after about the six weeks I did start to climb the walls. I’d been in this room for quite a long time, been nowhere. Been showered and bathed by nurses, had very little independence, virtually no, but I was getting better. And I had a breakdown. I just broke down completely, cried my heart out and one of the team, medical team this time, came in, sat with me, and just listened to me really, to be honest, she didn’t even talk a lot, she just listened to me. And I remember pleading, “Can I? I just need to get out”, and so they agreed.
Longer than it was worth me getting out, so I was wrapped up nice and warm and I was put in a wheelchair and my wife pushed me round the hospital, which was fantastic for me. It was, you know, fresh air, I’d never put such an emphasis on fresh air before, it was so important. And my wife was pushing me as well and it was a big step.
So we came back, that helped me. That helped me tremendously as well to keep going.
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.
Jim was always scared of catching infections - he says don't be afraid to tell the nurses if you think their hygiene precautions aren't good enough.
Jim was always scared of catching infections - he says don't be afraid to tell the nurses if you think their hygiene precautions aren't good enough.
Age at interview: 24
Sex: Male
Age at diagnosis: 23
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I always felt nervous that if you pick up an infection you need to go on to antibiotics. And you don’t want to pick up an infection anyway, you’d rather avoid colds all year, all winter long, they’re not worth having. And the same thing goes for picking up an infection when your immune system is low, I think. And I was always worried about that, and never if you feel the nurses, or anyone who’s attending your line, or putting a needle in you or something, isn’t taking the proper care and attention, even though that you know they’re professionally trained to be clean and hygienic, if it’s not the level of hygiene that that you’d like then just tell them and don’t feel bad about it. They do these things all day and they’re not going to see if you get an infection. If you do get an infection you’re probably not going to know anyway that it’s come from them or even from sticking a needle in you. So just for your own comfort, don’t be afraid to tell them how you like to be treated. Even though they’re the professional, you’re the one who’s going to have to live with whatever if you did get an infection and you’d be kicking yourself really.
Michael complained to hospital management when he found a cleaner flicking dirt around his isolation room with a duster because her mop had gone missing and she hadn't been given a replacement.
Michael complained to hospital management when he found a cleaner flicking dirt around his isolation room with a duster because her mop had gone missing and she hadn't been given a replacement.
Age at interview: 61
Sex: Male
Age at diagnosis: 58
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There was another incident when the lady who was the regular cleaner for our part of the hospital reappeared. She’d been abroad for a while and she’d actually gone through some touching up of her hair so I didn’t recognise her for a day or two. And then I realised it was the same lady having had a few years taken off by a treatment her daughter had ordered while she was abroad. And she was using a duster to flick around the room and large clumps of dirt were flying across the room in this special isolation room that I described before. And I said to her, ‘Is that really the best way of doing it?’ She said, ‘Somebody stole my mop while I was away and I’ve reported it several times but they tell me I can’t have a replacement.’ And I really got very angry about that and eventually I think made enough fuss for some senior person to come in.
And I said, ‘Look, if it wasn’t for the fact that I’m confined to this room I’d walk up the street and spend ten pounds on a new mop. But given the standards that you’re trying to retain in this room this just isn’t working. It’s absolutely stupid and whatever protocols you are applying on the replacement of a missing mop they’re not right.’
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.
Dianne asked her husband to bring in antiseptic wipes and she used these to keep her isolation room clean; she managed to avoid catching any infections.
Dianne asked her husband to bring in antiseptic wipes and she used these to keep her isolation room clean; she managed to avoid catching any infections.
Age at interview: 53
Sex: Female
Age at diagnosis: 50
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I think that some of the things that I’ve found that I had to manage for myself even though you weren’t feeling too well, was that there is a need, particularly with AML and any leukaemia where you’re going neutropenic, to have absolutely spotless hygiene. I got through the whole six months without any ulcers, without any major infections, and that’s because I’d asked my husband to buy a wipe for every possible type of occurrence. So, you know, I mean the hospital were very good as well because they wiped the trays down and when you’re given your chemotherapy everything is sort of sterile, but I think just around the general room and everything that I touched, everything was kept clean.
And it really did seem to make a difference because I know a lot of my fellow patients were having all sorts of difficulties and I just think that with all the things that you hear about hospitals, the more that you can do for yourself in maintaining that cleanliness, it did seem to help me anyway. And I’ve never been that particular in terms of worrying too much before, having been brought up in the country, so it did seem to help anyway.
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.
Neil was impressed by the hygiene precautions staff took when he was in isolation but surprised that his wife and children did not have to take any precautions when visiting.
Neil was impressed by the hygiene precautions staff took when he was in isolation but surprised that his wife and children did not have to take any precautions when visiting.
Age at interview: 50
Sex: Male
Age at diagnosis: 44
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Can you tell me a bit about being in isolation when you’re having treatment and what sort of precautions you and others had to take?
Yeah. The hospital I was in had a series of, well they referred to them as one-bedded wards, but basically, I mean fundamentally it would be like going to a hotel with a single room and ensuite facilities. It’s all very clinical, very clean, and off the room you had a room with a shower, a basin and a loo. And the reason you’re in isolation is because they don’t want you to pick up germs from other people. It’s not that you might infect others, it’s that you might be infected by them. And normally when I was in there nurses would come in and administer treatment and always washed their hands and put on the surgical gloves. And when I was neutropenic then quite often they might be wearing a plastic apron. I think I’ve heard this referred to somewhere as barrier nursing, it really is creating a barrier around the patient to prevent the germs from getting in. But of course all that’s undone when visitors come to see you because they’re not in the same way. And you can’t stop the family coming in and I wouldn’t want, you wouldn’t want them to because, you know, greatest thing to me was for my wife or the kids to come in.
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.
Although initially daunted by having to adopt a neutropenic diet at home after treatment, Ian and his wife quickly adapted to the necessary changes.
Although initially daunted by having to adopt a neutropenic diet at home after treatment, Ian and his wife quickly adapted to the necessary changes.
Age at interview: 43
Sex: Male
Age at diagnosis: 35
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And you’ve mentioned the neutropenic diet,…
Yes.
…the clean diet. I didn’t really ask you very much about that. Was that a terrible hassle?
Oh yes. It made life very interesting. Biscuits, sealed, everything had to be sealed. So I had to cut the seals so sweets would have to be like Quality Street with a specific wrapper. You know, you couldn’t have a Rolo for instance, that would be no good because once it’s opened they’re all contaminated. Hot meals, well-cooked meals. And no salads really.
Something that we got into very quickly. It sounds quite daunting, oh you got to do this that and the other and keeping clean, but it’s something that you adapt to quite quickly and I had hot meals and finding the right snacks. Crisps for instance you can have if you open the packet you had to eat them and I wouldn’t have the energy to eat a whole packet of crisps so it’d be a waste. And fruit had to be cleaned properly and so it was quite a task for people around me to make sure that I was kept clean when I was neutropenic, because I was neutropenic for quite long spells, very low immunity, so yeah. But initially you think, ‘God, what can I do here?’ You quickly adapt and get very fussy with cooking food.
Right.
And making sure everything is well cooked, properly cooked. So it’s quite a good, in a way it’s quite a good thing. A skill there I think.
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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