People with acute leukaemia usually spend long periods in hospital having treatment. With young children at home this can be especially difficult. Some people’s spouses or partners took leave from work to look after their children in addition to visiting their loved one in hospital. Others enlisted family members to help with childcare or sent their children to stay with grandparents (see ‘Intensive chemotherapy’). Deb’s leukaemia had been diagnosed while he was temporarily in the UK; he sent his children home to India to live with their grandparents. Friends offered to look after Neil’s youngest daughter.
Kelly is a sales executive. She is married with two children aged 12 and 6. Ethnic background: White British.
My kids had gone to live with my mum because they told me I’d be in hospital for six months and if I’m lucky I might come out for the odd night. So my kids went to live with my mum. I think that was the most devastating experience to me because I remember it was a Sunday afternoon, we had lunch at my mum’s and then I had to leave them, and I can physically remember just collapsing in my kitchen. I just had to run out to the car and get in the house. My little boy was only three at the time and was shouting, ‘Mum mum where are you going?’ I mean because obviously he didn’t understand. That for me was the hardest bit of being diagnosed, not the telling me I’ve got leukaemia, it was that bit for me. But got through that.
Some people’s children visited them regularly in hospital but stayed away if they had a cold. Others didn’t see their children or grandchildren for long periods while they were in hospital, either to avoid the risk of an infection or because they didn’t want the children to see them so ill. Kerry said she didn’t want her children frightened by how she or other patients looked. She missed her children terribly but phoned them regularly. She felt envious of other people doing things with their children. Jeff was sad that his grandchildren weren’t allowed to visit because his immune system was weak, but he watched recordings of them dancing and singing for him. Kerry often had breaks at home during her treatment but her mother only brought her children to visit if her immune system was strong enough.
Claire is married with 3 children aged 17, 11 and 9. Ethnic background: White British.
And the children came, and we had a great elaborate plan of how they were going to come individually so that I could give them attention, but to be honest I felt too tired really and I couldn’t give to them what I wanted to give. And they did come and have some time with me, and lie on the bed with me but it didn’t work out how I imagined it would, and I wanted to control what was going on at home from my hospital bed and I couldn’t do that either, so I had to let go of that and just try not to think too much about what was going on at home.
Age at interview:
Age at diagnosis:
Ian became an occupational therapist after retiring from the police. He is married and has two children aged 16 & 14. Ethnic background: White Welsh.
I want to ask you about your family and your children because they were very young when you first had this.
How did they cope and how did you talk to them about it?
Well they were down here with my wife.
Which actually was a bit of a blessing, so they stayed down here. My mother-in-law actually lived with us at the time so, and there’s a lot of family around here, so they would save up here, which was good that my wife could then focus on me, and for months I said, ‘No, they’re not coming up, they’re not seeing me like this, they’re too young. They don’t need to see their dad in this state really. Let me get better. Let me at least look presentable’, because I was just shallow and pale and I think I’d lost about four stone.
And yeah so they didn’t come up for quite a long time and they were quite, my decision, very much my decision, and I didn’t want them seeing me like that. And when they came up it was really hard seeing them actually. It was really quite emotional seeing them, and of course they didn’t really grasp it but it was a tonic seeing them as well, yeah.
And slowly but surely they came back to live up in North Wales with us, and went back to school there. And they were really good actually to have around then. Quite a tonic seeing them, and it was a good age, they were I think seven and five. I think my son didn’t really have much idea at all what was going on whereas maybe my daughter did have a bit of insight into what was what. But they were really good with me.
Health professionals may not always offer advice about how to talk to children about cancer or leukaemia, but charities such as Macmillan and Leukaemia Care do. Talking to children about cancer can be very difficult, and may upset both parent and child. What parents choose to say will depend on the age and maturity of the child. Most people said they had not used the word ‘cancer’ but had told their children that they had a serious problem with their blood. They didn’t volunteer too much information but would answer any questions. Some children didn’t ask questions.
Elaine is a housewife and mother. She is married with two children aged 9 and 10. Ethnic background' White Scottish.
How did you go about explaining to them what the trouble was, or did you not?
All I told them, I just felt when they were, well, six and seven, I felt they were maybe a bit young to understand, so all I said was that I had a bad bug in my blood and the doctors were going to try and fix it for me. And when I became a volunteer with Leukaemia Care they had a lot of booklets on talking to children about it, explaining to children what had happened to mum. So I sat them down and I gave them the book to read and I let them ask questions about it. So they do know that I had leukaemia, they know all about it, and I had chemotherapy and their uncle donated his bone marrow, they know all that now.
But that was after the event presumably was it?
Yes. Yes. At the time it was just, I had a bad bug in my blood. We never used the C word. I still don’t like to use the C word, I always say leukaemia.
Do you think they understand that it’s cancer? Do they know about it?
Yes. Yes. They know it’s cancer. I don’t think they know what cancer is or how bad it could be. I don’t think so anyway. Although occasionally ask me questions about it but not very often. It’s happened. It’s done. It’s by the way. Mum’s still here. And that’s one of the reasons I wrote my diary as well so that when they’re older I can give it to them to sit and read if they want to read it anyway. It’s up to them.
But they know mum was bald and mum’s got a wig and used to have a laugh at this.
Did they see your Hickman line?
Yes they did.
What did they make of that?
They just asked, ‘What’s that mum?’ And I explained to them what it was, ‘To save mum getting jabs in the arms all the time they use this’. ‘And was it sore?’ ‘No.’ ‘Can you feel the stuff going in and out of your body?’ I said, ‘No. Don’t feel a thing.’ But they did, they asked questions and I told them. I didn’t lie to them. I told them straight up what it was and what happened and they were quite happy. They were quite happy.
One woman said her son knew she had a serious problem because she was having frequent blood tests; now that her chronic myeloid leukaemia (CML) is well controlled she sees no need to explain more to him.
It can be difficult to know what effect a parent’s serious illness is having on a child as their ability to understand, and their needs, vary at different stages. Some children may not be able to talk to their sick parent about their feelings but may show their concern through changes in their behaviour. Others may be upset by seeing changes in their parent’s appearance, such as hair loss from chemotherapy. Ian’s children had been about 8 and 6 when he was first diagnosed; he felt they had been too young to understand what was going on. Elaine had been unaware of any adverse impact of her illness on her children aged about 5 and 6. Neil said that his younger daughter’s behaviour had changed for the better since realising she might lose her father; his older daughter now wants to become a doctor.
Kelly is a sales executive. She is married with two children aged 12 and 6. Ethnic background: White British.
Tell me about your kids and how you handled that side of the problem?
Well we never mentioned the word cancer because my older son is quite clever. Although he was only nine at the time and he was at primary school then, he asked what was wrong, obviously he knew it was something not quite right, but because they’ve grown up with my mum they’re quite close to my mum because my mum babysits anyway. So really by them moving in with my mum it was a bit of a holiday. They were a bit excited at first. My little son was only three and he was a bit upset and he missed me.
Obviously my older son missed me but my older son took out books at the school library and read them at school, about leukaemia. So, and he never, he still to this day hasn’t told us that, the teacher told us that but we don’t ask him about it because obviously he didn’t want to talk about it. But he knows that leukaemia - because he’s now twelve - is cancer. And we used to make a joke of my bald head because it didn’t bother me at all. I only used to wear the bandana because I felt cold, because it didn’t bother me at all so we used to joke about it. And my tubes that I had, my lines that I had in, so they were quite relaxed about it because even when I was out they still acted like normal. That’s what I wanted, that’s why they didn’t ever see me at my worst times when I was really ill. They never visited me in hospital because I didn’t want them to come up. Because although I might have been looking well they might have seen other people around who didn’t look so well with the machines, and I didn’t want them frightened.
Children need someone they can confide in about their concerns, and some people were comforted to know that their child had talked to a friend about the illness or that staff at their school had been supportive. Deb’s twin daughters were very close so he felt sure that they would have discussed it together, although they put on a brave face for him.
Some people said that their children had been understanding and supportive during their illness. Ian’s children had been good at leaving him alone when he was at home after his hospital treatment and needed to rest. Marilyn’s grandson had suggested that drinking tomato juice would help her blood to get better because it was the same colour.
She is a shopkeeper and businesswoman. She is divorced with one child aged 11. Ethnic background: White British.
You said he’s very good at looking after you. What kind of things does he do?
Well he’s a very understanding child. I mean at the beginning he’d make cups of tea for me, but he will understand if I am tired, and I do tire more than I used to, I need my sleep. He won’t try and drag me out of bed or he’ll go and do - we’ve got ponies - he’ll go and muck out the ponies, he will understand and he will be quite protective. Oh, I don’t eat chips because I don’t eat fried food, but sometimes he’ll have something with chips, and if I go to pinch one off my plate he says, ‘No mummy. You can’t. It’s not good for you, it’s your illness.’ And he will often pick me up if I go to do something, because for two years I was so religious and now I’m slightly weaker, and if he’s here he will keep me on track.