Unlike many other cancers, acute leukaemia is treated initially with several courses of daily chemotherapy. This ‘intensive’ chemotherapy often means having to stay in hospital for long periods with occasional breaks at home. This is sometimes followed by a period of out-patient treatment involving regular visits to hospital clinics and/or drugs to take at home.
Frances was shocked to learn that treatment for her ALL* would take 2 years and that most of the first year would be spent in hospital with short breaks at home.
Frances was shocked to learn that treatment for her ALL* would take 2 years and that most of the first year would be spent in hospital with short breaks at home.
Age at interview: 45
Sex: Female
Age at diagnosis: 42
SHOW TEXT VERSION
PRINT TRANSCRIPT
So I was expecting, well I suppose I’ve known a few people who have had breast cancers and testicular cancers, and I was expecting it to be like that' you would get a block of treatment and then you’d be off treatment and a block of treatment. So when they said to me, ‘You’re going to spend the vast majority of the first year of your treatment...’ And I went, ‘The first year of my treatment!’ And they said, ‘It’ll be a two year treatment programme that you’ll be on.’ And I was thinking, ‘Right. What does that mean?’ And they said, ‘You’ll probably spend the first, just about the first year in hospital. Most of that will be in isolation units.’
So all of a sudden the reality of it hit me and I was thinking, ‘What about my job? What am I going to do about my job? What am I? How? What?, I I I…’ The concept of being away from home in hospital for that length of time, I hadn’t even thought about that. And they explained to me what the programme was and it was like a series of blocks of chemo, and that the first year would be intense chemo and that would make me very sick, possibly, very ill. There would be side effects and that I would be in hospital for two months at a time. And when I did get out I’d be out for a week or even a weekend. I wouldn’t be out for blocks of time. And they also explained that, in the middle of the year, we’d start in January and in July during that phase of chemo I would also get radiotherapy.
The prospect of a long hospital stay meant having to put normal family and work life on hold. People with young children relied on parents or spouses to look after them. Kerry sent her children to live with her mother, and said that leaving her children was the hardest aspect of having leukaemia. Claire’s mother gave up her job and moved in to look after the children.
Elaine felt bad about leaving her children but was glad their routine was normal; they had their dad, who had 8 months leave from work on full pay to look after them.
Elaine felt bad about leaving her children but was glad their routine was normal; they had their dad, who had 8 months leave from work on full pay to look after them.
Age at interview: 39
Sex: Female
Age at diagnosis: 35
SHOW TEXT VERSION
PRINT TRANSCRIPT
So what happened to your kids all this time that you were in hospital?
My husband, he got time off his work. He went to his work on the day that I’d got diagnosed, the Tuesday, he went down to his work to speak to them to ask, because he’d only been in this, it was a new job he was in and he’d only been there for six months, so he didn’t know what was going to happen. But they basically told him, ‘Look. Go home. Look after the kids. Do what you have to do. Just keep in touch with us every so often. Let us know what’s going on.’ Full pay. I mean he was off for about seven and a half, eight months I think from his work. I mean his work were fantastic. They were really, really good.
So the kids were, you know, the only thing that was missing from them was me. They were still getting up in the morning, going to school, going to dance and going to, you know, the things that they were going to. And my best pal at the time as well she helped. Well she still is my best pal. She was a great help as well, looking after the kids and making sure my husband was organised. Making sure he was organised. Showing him how to work the washing machine because, you know, he was just thrown right in at the deep end.
So how did you feel about having to desert the children for such a long time? Or were you just feeling too ill to really think about it?
No. I felt really bad because I had always been there for them, because I gave up my work to bring the kids up. But I was glad in a way that my husband was still going to be there, so hopefully it wasn’t going to affect them too much. And they seemed quite happy, they seemed fine about it. So I was kind of, I was settled in the fact that they had their dad. He was there. They weren’t getting put here or put there or, you know, their routine wasn’t getting upset. And I spoke to them every night. I had a phone in my room and spoke to them every night before they went to bed. So, you know, their dad was there I didn’t feel too bad.
People in work had to explain the situation to their employers and work had to be handed over to colleagues. A man who was a charity director attended his regular Monday morning briefing meeting for senior staff then left for hospital hoping to continue running his office from his hospital bed. Frances felt very concerned about being absent from her job for a long time and realised that her sense of identity was closely linked to her occupation. Julie found it hard adjusting to the loss of the lifestyle that went with her job in a London bank. Ann missed her job but approached her treatment with the same discipline as if it was work.
Neil asked the specialist to allow him a few days to sort out his consultancy business before starting treatment for his AML* but was told that delaying treatment meant he might die.
Neil asked the specialist to allow him a few days to sort out his consultancy business before starting treatment for his AML* but was told that delaying treatment meant he might die.
Age at interview: 50
Sex: Male
Age at diagnosis: 44
SHOW TEXT VERSION
PRINT TRANSCRIPT
So what were you doing at the time of your diagnosis? You were working full time and…
I was working.
…what happened to your life?
Life goes on hold. And this was one of the biggest arguments I had with the hospital. Initially I’d said, the consultant and I had a set to, and I really had had a set to. I mean it wasn’t a screaming match, but we were both very forceful on the points that we were putting across. You know, I had clients to service. I had work to do and I needed to get it done. ‘Leave me four or five days, I’ll get it done and I’ll come back in and start treatment.’ It was explained to me that if I had done that I probably would not have seen Christmas. So the choice of course was mine but understand we were in a situation where treatment needed to start, and the longer you left it… So yes I mean I was self-employed, consultancy business, that went away, because it was newly established.
Because chemotherapy for leukaemia attacks the immune system, the white blood cell counts of people having chemotherapy usually drop (a condition known as neutropenia) making them vulnerable to infection. They may be given transfusions of blood products (see ‘Supportive treatments’) and have to remain in hospital until their blood counts return to a safe level. For this reason people with acute leukaemia are sometimes isolated in individual rooms or wards equipped with air filters where strict hygiene rules apply (see ‘Being in hospital’). A typical course of intensive treatment for acute leukaemia involves daily chemotherapy with one or more drugs for several days followed by up to a month for the cell counts to recover. A break of a few days at home is usually allowed before the next course of treatment. The number of treatment courses varies between different treatment protocols.
Some people’s blood counts recovered sufficiently well that they didn’t always need to stay in hospital after treatment. Jim said it had been difficult to find out whether he really needed to be in hospital on days when he was not having treatment and felt OK, as he would prefer to be doing something with his family or friends. While many felt too ill to think about getting out of hospital, others had sometimes been bored while waiting for their blood counts to recover.
Kerry's blood counts remained sufficiently high to allow her home most nights while having daily chemotherapy for her ALL*.
Kerry's blood counts remained sufficiently high to allow her home most nights while having daily chemotherapy for her ALL*.
Age at interview: 32
Sex: Female
Age at diagnosis: 28
SHOW TEXT VERSION
PRINT TRANSCRIPT
And on the Monday I had to go to the hospital to be admitted. Got there, filled in the form, sorted out my bed, I had a private room. And then they said, ‘You can go home now for the night.’ My husband had taken me to hospital, filled in the forms with me, we’d had the discussion with the doctor. We all got upset about that because we realised what it’s going to take.
And then my husband popped home to get some stuff and I had to phone him. I said, ‘I’m coming out of hospital.’ And because of my personality my mum and my husband and my dad thought, ‘Oh God. She’s discharging herself.’ But I had to tell them, ‘No, I’m allowed to.’
But the first lot of chemo was strong to blast the leukaemia, so I was constantly drinking water, which I don’t like drinking water, but I constantly drank the water, so I just did whatever they told me. If they told me to drink lots of water, I drank lots of water.
And I was out most nights. I had to go every morning, see what was next, but most nights I was out. So out of six months I only spent two weeks solid. Other than that I spent, like I say, three nights or sometimes, for weeks on end I was in and out, in and out. I was quite lucky because your bloods drop when you have chemo. My bloods rarely dropped and when they did they picked themselves up quite easily, so I was quite lucky with that.
Being in hospital meant that people had to miss some family or social events and they felt glad when a break at home coincided with an important event. Brian missed a friend’s birthday party but was out for his grandson’s christening. Neil hoped to be allowed out at the end of his first week of treatment to attend a Christmas carol concert at his daughters’ school, but when the time came, he realised he wasn’t well enough to go. Ann managed to negotiate an extra week’s break to attend a friend’s wedding. Some people felt insecure about being allowed home because they would be away from the professionals who were looking after them. After a long stay in hospital some people felt disconnected from life outside. They felt they had become institutionalised or had lost their sense of who they were.
Julie was allowed home for her birthday after her first month in hospital but was anxious about being away from hospital in case of problems. She enjoyed her birthday and didn't want to go back.
Julie was allowed home for her birthday after her first month in hospital but was anxious about being away from hospital in case of problems. She enjoyed her birthday and didn't want to go back.
Age at interview: 38
Sex: Female
Age at diagnosis: 27
SHOW TEXT VERSION
PRINT TRANSCRIPT
And eventually after I think the first month I started to feel, you know, well I’d been in hospital straight for a month, I hadn’t been home at all. And they said to me, you know, ‘Your blood is picking up. What we want to happen is happening and you will very soon start to feel better.’ You see I’d met various people on the ward, nurses etc., and after a month or five weeks of being there they said to me, it was coming up to my birthday, so they said, you know, ‘We’re big on birthdays. We’re going to let you go home for a few days.’ And I was like, ‘Oh thank God. My own bed.’ ‘And when you come back we’ll then test you again to see whether what we want to happen is happening.’ And I was like, ‘Okay so you’re going to let me go home.’ And one part of me was really glad, ‘They’re going to let me go home.’ But then I thought, ‘What happens if something goes wrong? I’m an hour, good hour, hour and half away from London by car. What happens if it goes wrong? What happens if this happens? What happens if that happens?
And they were like, ‘Don’t worry. Just go straight to your local hospital if you want to or you can come straight back to us.’ And then I thought to myself, well I had this really lovely room and I was like, ‘Will I come back to this room?’ And they were like, ‘Maybe not. It depends if we get someone in who needs it.’ And I was like, ‘So do I want to go home or do I want to stay here?’ And they were like, ‘No no no no. Go home. Have a nice birthday, you know, come back to us. It’s only a couple of days.’ I think they let me home I think for about two days.
And I had a birthday and that was lovely, people came to see me. And by that time all in that first month my mum and my friend had gone up to, because I didn’t want an NHS wig because they’re, I know now they’re marvellous, but at that particular time they were horrendous and I didn’t want one. So my friend went with my mum up to South Ken because of us being in London, up to South Kensington, and she got me, she went into a very nice shop and she got me a really lovely wig for my birthday. I put it on and put make-up on for the first time in God knows how long, and people came to see me and it was a good, it was a good birthday. It was good to be home, good to sleep in my own bed, eat proper food as opposed to hospital food.
And we went back after three days and after being at home I didn’t want to go back. I was mixed emotions again but I did go back and I was given my room. I was more than happy, I was back in my room.
Breaks at home varied between a few days and several weeks depending on the treatment plan. People tended to enjoy the short breaks for the comfort of being in their own home, sleeping in their own bed and eating 'proper' food. Longer breaks allowed people to restore some fitness and return to normal activities such as gardening and seeing friends. On one occasion Ann took a trip to Paris. Elizabeth used one of her breaks to sort out her affairs and make a will. Neil once had to cut short a home break because he developed troubling side effects of treatment. Another time he was glad that his return was delayed by a flu epidemic at the hospital because it allowed him to support his daughter when starting as a boarder at school. John tried to extend his breaks whenever possible.
Some people had been surprised at how quickly they started to feel better after chemotherapy began, while others said that treatment had made them feel very ill initially, including nausea and vomiting and feeling tired and washed out, but that after a while they slowly started to recover (see ‘Unwanted effects of treatment’). Ann had felt worse as the number of chemotherapy courses increased. Brian's blood counts took longer to recover after each successive course of chemotherapy.
Sometimes people’s next course of treatment was delayed because the blood count was taking so long to recover. When there is no sign of the leukaemia and the bone marrow is working normally this is called 'remission'. In acute leukaemia this is often achieved after one or two courses of chemotherapy but treatment is continued to reduce the risk of recurrence. Although Thelma’s treatment did not put her into remission, the proportion of leukaemic cells in her bone marrow is much lower. Ann said that her first course of chemotherapy didn’t work so she was given something stronger.
Brian's 3rd course of chemotherapy was delayed because his blood counts were too low. A longer break after the 3rd course meant they recovered better, but it was slower each time.
Brian's 3rd course of chemotherapy was delayed because his blood counts were too low. A longer break after the 3rd course meant they recovered better, but it was slower each time.
Age at interview: 61
Sex: Male
Age at diagnosis: 60
SHOW TEXT VERSION
PRINT TRANSCRIPT
Anyway, went home. My grandson, who was how old then? He’d been born the year before so he was about a year old, he was getting christened in the May, and I was home in time for that, so we had a nice family party at my son’s house. Went to the christening of my grandson and enjoyed it, and the day after that I went back into hospital for the third cycle.
I went in, they took a blood count, and he said, ‘Oh, your counts aren’t high enough. They’ve actually dropped back down since you came out.’ A week, it was only two weeks gap. They said, ‘We can’t start you unless your counts are above a certain level. The neutrophils we like to have above one.’ And I think I was on about point six or point seven, so it wasn’t very good, much lower than when I’d come out at the end of the first cycle. And most of the other counts hadn’t fully recovered either and, I mean, the general consensus was, you’ve come back too quickly, you need more time.
And, of course, from my point of view it was slightly disturbing because my counts had gone zooming up on the first cycle, they’d gone to the highest they could, and now all of a sudden they’re struggling to even get to the minimum to start the third cycle, so it was quite worrying.
And, of course, I was also thinking about the fact that the longer we left it, the less chance there was for me to go to this party, which may sound like, you know, nothing I should be, something I shouldn’t really be worried about, but at the time I really, it was a family thing, the whole family were going. You know, we all wanted to be there.
Anyway, I went back a few days later, had another check and eventually they started, I think I was still home another fortnight and by this time the chances of going to this party were fading rapidly. And the outcome was I actually never made it to the party, I mean I was in hospital having the third cycle of chemo.
But we eventually started, I think, the second week in June we started the third cycle.
The consultant said to me that before coming back for the fourth cycle, because of what I’d gone through on the third, I could have a few extra weeks, and in the end I was home for eight weeks. So I had a really good long recovery spell, but I was pretty much up and running again within a few weeks, cutting the grass, you know, digging the garden, visiting friends, getting around, doing all the things that you normally do. I mean I really was up and running relatively quickly and that was always a good sign.
The counts recovered fairly well. They didn’t zoom up again, they went up slowly, but certainly the neutrophils got into normal range, the haemoglobin was nearly there, platelets is the other thing that they were all worried about, that’s the cells that help the blood to congeal.
And what they did, they seemed to be very slow coming up on the third cycle. They were fairly slow on the second cycle, but the third cycle they really were slow, and they never, I don’t think they ever got up above sixty-five. The beginning of normal range is about a hundred and fifty, and mine never rose above sixty-five when I was home between the third and fourth cycle.
*AML – Acute myeloid leukaemia
ALL – Acute lymphoblastic leukaemia
Last reviewed: December 2018.
Last updated: July 2012.
Copyright © 2024 University of Oxford. All rights reserved.
