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Leukaemia

Other people's reactions to the diagnosis

How people react to the news that someone close to them has cancer depends on many things, including their previous knowledge or experience of cancer and how they are told. Although cancer is less taboo now than it once was, the words ‘cancer’ and ‘leukaemia’ can still be frightening and many people assume, wrongly, that leukaemia will inevitably lead to death. Most people we spoke to said that the announcement of their diagnosis of leukaemia was met with shock and disbelief. Thelma said that her brother asked the consultant if they had made a mistake. Rani’s medical student sister hadn't known the difference between acute and chronic leukaemias at that time and couldn’t understand why Rani had not been admitted for immediate treatment. Mike said that the diagnosis confirmed his wife’s suspicions of what was wrong.

 

Joanna was shocked when she heard her husband had leukaemia because she knew little about its...

Joanna was shocked when she heard her husband had leukaemia because she knew little about its...

Age at interview: 63
Sex: Female
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So would you like to tell me the story of your experience of your husband’s leukaemia?
 
Right. Well, I guess it started from my point of view rather dramatically because he’d had a minor, apparently minor problem which eventually the GP said, “Well, get it sorted out privately.” And it didn’t seem to be sorting and he had to go into a hospital to be checked over a bit further and I went off in the normal sort of way to keep on with my normal life and went off to Manchester. And I did get a very nasty shock when I rang him up and over the phone on the train he said, “I’ve got leukaemia.” And I frankly didn’t actually know what to do. And my first thought was actually to ring the GP and find out what was the right hospital to go to because he also said he couldn’t stay where he was, they didn’t deal with leukaemia and he’d have to be moved and there was a choice.
 
So that I was dealing in a big unknown world with an illness that’s fundamentally rather frightening to hear about because as an ordinary member of the public you don’t realise how many advances there have been in leukaemia and, you know, it’s a sort of death sentence type of illness initially and probably a quick one. And they did say, I mean, rather ruthlessly, you know, if we don’t start you immediately on drugs you’ve got three months to live and that’s it, you know. All of which is quite tough actually and so that side of it was quite difficult to get to grips with.

Although learning the diagnosis had been shocking and emotional, most people said their partners had hugged them and promised to support them through the illness. Several men said their wife had been very calm and practical. Some women said that their husband had been very upset and hadn't hidden his feelings as some men might. Jim said that he and his girlfriend had cried together for a long time. Adult children reacted in different ways - some showed their feelings, others appeared to cope quietly. A few people said that their elderly parents didn’t want to discuss it and appeared unsympathetic. Joanna, whose husband had leukaemia, said that her mother-in-law was very upset to think that her son might die before her.

 

Mike said that his wife reacted calmly to the news, his elderly mother took it badly and his...

Mike said that his wife reacted calmly to the news, his elderly mother took it badly and his...

Age at interview: 66
Sex: Male
Age at diagnosis: 62
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So how did she take it? How did she react?
 
I can only tell you how I felt she took it. She was very sanguine I suppose you would say that. She didn’t get emotional. She was practical and she was quite agreeable to coming with me to find out as much as we could. I did most of the looking to find out what the web told us but she was happy to come to Maggie’s and join in the courses there. And I think we both learned in our own way. Inevitably my interest was greater than hers but she was good and didn’t close off, I could talk to her about it.
 
But in fact I talked to my family. I have a mother who’s now eighty-nine, will be eighty-nine in a few days, and I went through to tell her specifically. I felt that it was only fair that we should see each other when I told her that. She took it very hard initially and didn’t want me to do this and didn’t want me to do that. But with regard to the treatment for the leukaemia she just accepted that that was necessary. I think probably had a similar view that I might have had that it was fairly likely to be terminal in the longer term if not in the shorter term.
 
What about your kids? How did they take it?
 
Kids are a bit more difficult. They were quite quiet. One is, what are we now? One will be forty this year and the other one therefore will be thirty-eight this year. They both went kind of quiet the way men would tend to do but they were quite affectionate, they didn’t remove themselves from my company. And the younger one was due to be married and the only thing he said to me was, ‘I hope you’ll be still here when…’, you know, agitatedly, you know, ‘I hope it’s…’ And I said, ‘Oh yes. I think there’s no problem about that.’ And it went through perfectly. So, natural, worried, anxious but able to talk about it, they didn’t remove themselves. They were helpful. One daughter-in-law very good. The other one who hadn’t by that time become a daughter-in-law simply had to learn about it later.

Marilyn found it difficult to tell her family that she had leukaemia because her father had also had it, although it hadn’t caused his death. Coping with other people’s emotions could be difficult and some said that having people crying around them was not helpful. On hearing the news, people often felt awkward and didn’t know what to say and could blurt out inappropriate or unhelpful things, particularly if people looked well and they found it hard to grasp that they could be so ill. Some tried to tell people the news in a positive way and hoped that this would help them know how to behave. Dianne noted that open and clear communication had helped to avoid confusion and upset. After being told the news, some people said their friends were very supportive and contacted them regularly whereas others didn’t know what to say and they didn’t hear from them.

 

Brian’s friends and family were shocked at the diagnosis because he had always been healthy. He...

Brian’s friends and family were shocked at the diagnosis because he had always been healthy. He...

Age at interview: 61
Sex: Male
Age at diagnosis: 60
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I mean, the first thing that you do notice is that the friends initially were, you know, a lot of my friends, and they’re spread all over the place, and family, I mean, were initially shocked, because Brian is such a healthy person. How could he get anything? And, why? Why? You know, why do you get leukaemia?
 
One of the things people expect, one of the things I discovered fairly early on is that your friends and relatives are obviously very concerned about you, and, well, as I was but, I sometimes feel that it’s worse for the friends and relatives than for the person going through it, because they have absolutely no control, they’re not a part of it, they can’t do anything. But also they’re concerned, they fear what might happen. You know, they’re going to lose some loved one. And I think, I mean they tried to cover it up, I think, to some extent, and everybody tries to be incredibly positive. They’re giving you lots of positive messages and sort of saying, ‘You’re going to be okay.’ And I got positive messages in all directions.

Learning the news often resulted in family and friends coming to visit, sometimes travelling far. Elaine’s father-in-law offered to come from Australia. Susan's son immediately offered to donate his bone marrow for her, even though this wasn't necessary. Some relatives, particularly those with medical qualifications, spoke to the doctors to find out more and offered to accompany the person to hospital appointments.

For many people the initial shock of learning the diagnosis was eased by a reassurance that the leukaemia was treatable, or in the case of chronic lymphocytic leukaemia (CLL), that treatment might not be needed and life could continue as normal for a long time. Several people said that by explaining this to others they were able to avoid them experiencing the same shock they had felt themselves before they had known the full story. Deciding not to tell certain people about the diagnosis until later when it caused visible side effects sometimes caused problems. Some people who had decided not to tell their children at first found that they were angry about having been kept in the dark (see ‘Telling others about the diagnosis’).

 

Beverley’s youngest daughter was angry that she had been kept in the dark about her mother’s...

Beverley’s youngest daughter was angry that she had been kept in the dark about her mother’s...

Age at interview: 54
Sex: Female
Age at diagnosis: 47
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We still left it that my daughter didn’t know. And then in fact I didn’t tell her until last year, which was very emotional. I kept putting it off and it was my fault, I put it off. She was at university, then starting her first job, had pressures at work, and so forth. And I had to go to a hospital appointment and she said, “I’ll come with you.” And I said, it wasn’t for the leukaemia it was for something else, and I said, “Okay, yes you can come with me but before we go I need to tell you something.” It wasn’t the best way to tell her because it was half an hour before we actually left the house. And it was an emotional time because we’re very close and she wanted to know lots of answers. She was angry at me, very angry for not telling her. And maybe I should have told her but I just felt that she really didn’t need that in her life and I was coping quite well without any problems and, as I’ve said, it’s only just now that it’s just starting to really be a problem in this last year or so.
 
So she and I still, and even now I find that anything that goes on, if I say that I haven’t done something one day or I didn’t want to go somewhere, it’s always, “Well, are you all right? What’s wrong? Well are you sure you’re okay?” And you don’t really want that all the time going on and I didn’t want her worrying like that all the time. She hopefully will get better at it but I did promise that I would not keep anything from her.
Last reviewed: December 2018.

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