Leukaemia
Other sources of support
Family, friends and colleagues
Many people said that they’d been lucky to have good support from family, friends and colleagues. Some gave emotional support by sending cards and messages, listening, or just being there and encouraging them. Many people found it easier to talk about their worries to friends rather than family; some confided in one particular friend.
Mark had much emotional support from his family and friends. He says the best thing people can do to help is to be available to listen, and to be there, even in the middle of the night.
Mark had much emotional support from his family and friends. He says the best thing people can do to help is to be available to listen, and to be there, even in the middle of the night.
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I was very lucky that I come from a very close family, and my sister and I in particular are very close. All my friends gave me a lot of support and you really do need that at times like that. They can’t understand exactly what you are going through, they may feel helpless, but whatever sort of support they give, be it a phone call, a visit, or just a few words of encouragement, they are very, very important, they all go towards building some sort of positivity when the outlook looks really bleak.
I think the best thing that anybody can do to help you when you’re in this sort of situation is to listen, and that is just the best thing. You just want somebody that you can talk to at will, at length, about the most benign things, and sometimes about the most stupid thoughts that you’re having, and sometimes irrational thoughts. Because I think initially your perspective goes out of the window and certain things seem vastly more important than they really are. And I think on the initial point of diagnosis, if you are being given bad news and they are saying the outlook isn’t very good or your time period could be short, it’s the immediacy of everything that you feel as if, I was more worried about how I was going to sort everything out. How would I sort out about a will and what would happen to the house after me, and who was going to have what, and things that really speaking nobody else is thinking about except you, which is an added burden, an added worry that you don’t really need.
So those around you, if they are just prepared to offer words of encouragement, sympathy yes in some ways, but more positivity, support, and just the ability to listen, to let you say whatever you want to say, whether it makes sense or not. And whether they tell you, “Oh you shouldn’t be saying that”, or, “You shouldn’t think it”, or “No, you’re being stupid”, and, “Don’t be silly, you’re still going to be around”, whatever it is, just listen as a sounding board and to just be there for you.
It’s nice when you’ve got somebody who you know that if you did wake up in the middle of the night and you’re having some unpleasant thoughts, or you just need to hear another voice, or there’s something on your mind, that you could just ring them up, even if it’s in the middle hours of the morning and you know that’s going to be okay. And I would think that that’s the biggest help that those closest to you can give.
People said they had rarely been alone during hospital stays - friends and colleagues visited frequently and some people’s parents visited daily or even stayed overnight in the hospital. Someone had often accompanied them to hospital appointments to help with transport and parking and to take notes of consultations. Some family members or friends had come to visit or stay with the sick person, sometimes travelling long distances, to look after them and help with housework, gardening or childcare. Those who lived far away found it hard to judge when and how often to visit. Some said the illness had brought their family closer together. Some people also helped by researching information about the illness.
While Gilly was in hospital a large network of friends and neighbours looked after her house and garden, fed the cats, got a new tax disc for her car, did her banking, and numerous other things.
While Gilly was in hospital a large network of friends and neighbours looked after her house and garden, fed the cats, got a new tax disc for her car, did her banking, and numerous other things.
Sex: Female
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You said you had lots of support from friends and your community. Can you tell me a bit more about that and the ways they supported you?
Well, they just took over my life. As nobody knew it was going to happen I just did three phone calls to my three wonderful neighbours to feed my cats, and it was from that. And this, because I had my address book with me it basically filtered out. I have no idea because I was actually hallucinating from - I was in on the Tuesday - from the Wednesday, so I have very little conscious awareness of what happened, but all I do know is that the address book was there. At times I would phone somebody up who would then phone somebody else up. And eventually I was just inundated with, I mean I can’t tell you, I mean I had cards wall-to-wall. And it just became a network of somebody would hear and would phone up, would call.
What became fascinating was that each person I realised would work to their strengths. So one of my students would do the garden, somebody would come and feed the cats, sort out the heating and it became huge numbers of people. So some people, because I live in London, would be helping physically with the house, like the car needed a tax disc, you know, how do we go about that? We do this in three stages. I had to have a new pair of glasses, so somebody could go and pick those up. These might sound very small things but it is really complicated, you know, banking details, I had no money. So there was that very practical, you know, bringing food into the hospital, bringing in stamps, to the point of friends who lived far away and who would phone once a week. Cards would come, letters would come. People would chant for me, people would pray for me. It just went on and on and on and eventually it’s just this huge network.
And all I can say is about at times people say about London that it’s a very isolating place and that there is no community, and I have to say that is, in my experience, completely untrue. And eventually because I’ve been ill for such a long time, for eighteen months, people got into this rhythm. They have their own roles to do and they’re more than happy to do them. I mean I have no idea how it started. I’m afraid I was out of it when it started but it just happened and I’m eternally grateful.
Supporting a close relative or friend through serious illness isn't easy and some people could see that their illness was particularly distressing their parents. Some family members couldn’t help because they were ill themselves. Some people don’t know how to react or what to say, and may find it difficult to face their sick relative or friend or to talk about the illness. As a result some friends who people had expected to be supportive hadn't been in contact whereas other more distant friends had surprised them by offering strong support. Some people accepted that friends dipped in and out of the relationship, others couldn’t understand such behaviour and ended those friendships. Some of Chanelle’s friends told her that being her friend during those difficult times had made them 'grow' as a person.
When she was first in hospital Elsa's brother and elderly mother visited her from the other end of the country; she saw how worried her mother was so discouraged them from visiting again.
When she was first in hospital Elsa's brother and elderly mother visited her from the other end of the country; she saw how worried her mother was so discouraged them from visiting again.
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Were you living alone then?
Yes, yes.
So did you have any support at home?
Yeah, I had friends. I had very good friends, or I still have very good friends, should I say. Yeah, they were very good and I’m very lucky. When I actually did go into hospital my family were called straight away and they had to come from Scotland and Cheshire when I was rushed up to the London hospital. But they had to get down as quickly as possible. And that’s when probably I didn’t actually realise at that time the severity of my illness but it was only later on that my mother and my brother actually told me that they were very worried about me.
And I think that’s the hardest part. Your relatives see it, they are the ones, I could see when they were coming up to me in the London hospital, my mother, she’s 84, and I had to say to my brother, “Don’t come back up.” I said, “I’m all right in the hospital. Leave me in the hospital. I’m being looked after.” I could see my mother was ashen. And she looked worse than I did I think. I know they were so worried about me and that’s why I just said, “Wait until I come out of hospital. That’s when I’ll need people, when I come out of hospital.”
So they did that. They still did come up now and again but not as often as what they were doing because it’s a long trek up there to get to the hospital. So yeah, and you’re going through it yourself so you don’t see it. You don’t know what’s happening to you.
Many of Aley's friends supported him when he was first ill but he knew that some wouldn't keep that up through his long illness; he does not resent those who drifted away.
Many of Aley's friends supported him when he was first ill but he knew that some wouldn't keep that up through his long illness; he does not resent those who drifted away.
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Friends, as I said to you, I have a lot of friends, at the beginning a lot of friends used to come. They brought a lot of reassurances for you, they said, “Don’t worry about anything, don’t worry about anything, we will go through it together”, you know. But in the very beginning I knew that it’s not going to last very long, because everyone has their business, everyone has their life to lead. So I didn’t expect much. Some of my friends helped me a lot.
A lot of my friends did not expect me to be here with them today, to be very honest. And they are being honest with me and it’s a very good thing. One of my friends said to me that it is a very long journey. “I don’t know how many people you will find at the end of it”, because a lot of people are there in the beginning line. So I say, “No, I know, because I’m the one who has to go through all by myself.” I said, “I know it. But whoever wants to leave and who wants to join me that’s up to them. I have no grief. I have no complaints whatsoever. You will still find me, even if you join me in the middle of it, you will still find me friendly with you. I understand that”.
While people with leukaemia were grateful that family and friends were always available, they also valued having space when they felt like being alone. Some people preferred family and friends to treat them normally and not to keep asking how they were. The most important thing to Ann during her hospital stay had been reading weekly instalments of her friend’s diary telling tales of normal life.
Other people’s experiences and support groups
Family and friends can only support someone with cancer up to a certain point and many people with leukaemia said that they had found it immensely helpful to find out how other people had coped with the illness. Some were inspired by reading patients’ stories in books or on the internet; others from seeing cheerful children with leukaemia in hospital. Talking to others with the same illness reassured many - they understood their feelings and showed them they were not alone. Some struck up friendships with other patients while in hospital; others were introduced through a health professional, a local support group or a national support organisation.
Mark's consultant put him in touch with another leukaemia patient; talking to someone who understood how he felt was a great comfort.
Mark's consultant put him in touch with another leukaemia patient; talking to someone who understood how he felt was a great comfort.
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But what I did find was that when you are first diagnosed the worst part was not being able to speak to somebody who is experienced in what you are experiencing, and I found the greatest help was when I commented on this to the consultant he asked a patient who had a different form of leukaemia if they would give me a call, and this lady gave me a ring, and I felt that that was the biggest benefit of all, actually talking to somebody who knew exactly how you felt, from the point you were diagnosed, the fear, all the unknowns, the feelings of what is happening to you, going through the testing and the different treatments, because however close people are to you they are not actually in your shoes at the time and they can’t really help you in that aspect. And I found it was a great comfort talking to somebody who knew what I was going through. And I’ve in turn now done that for quite a lot of other people. A lady locally who found that she had breast cancer rang me up and said can you tell me what it is like having chemotherapy and the side effects? So it’s a good help to be able to speak to people who know exactly what you’re going through and you can support each other in a lot of ways.
Jane had felt very isolated before she went to a meeting of a national support organisation where she met other people with her type of leukaemia.
Jane had felt very isolated before she went to a meeting of a national support organisation where she met other people with her type of leukaemia.
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Eventually I found an association called the Chronic Lymphocytic Leukaemia Support Association in the UK. I’d been diagnosed with the disease for well over a year when I went to my first meeting and it was the first time I’d ever met anybody else with CLL. And it was very reassuring to know that other people had the same problems. There were various solutions to things we could try. Just to know that other people knew what I was talking about and could possibly even help and assist.
Although chronic lymphocytic leukaemia is the most common form of adult leukaemia I’ve never met anybody with CLL outside of the CLLSA meetings or the UK CLL Forum where other patients go occasionally. It can be very, very lonely. I say that not specifically for myself but for the people who I’ve met at our meetings, and sometimes they’re almost in tears because it’s the first time they’ve ever met anybody else with the disease with the same problems. And it’s hugely enlightening for them to meet other people who can do that.
Few people had found a local support group for those with leukaemia. Some said they would join if one existed; others had thought about starting one but lacked the energy because of their illness or didn’t know how to do it. Len had contacted other patients through an online forum but hadn’t learnt what he wanted to know.
Jean would like to join a support group where she could chat to other people about leukaemia, but doesn't know of any in her area; she doesn't drive.
Jean would like to join a support group where she could chat to other people about leukaemia, but doesn't know of any in her area; she doesn't drive.
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Have they suggested any support organisations to you or anything?
No, no.
Do you know of any?
Somebody did give me a leaflet for CLL, which I haven’t filled in yet.
For a support group?
Well, yes they will give you information, because I don’t know of anything round here that would be a group. You know, like these sort of ones where people can go to and chat. Nothing like that.
Would you like to be a member of one of those if there was one?
If there was one locally, yes, because I don’t drive or anything. So yes,
I wouldn’t mind. As I say, if there was a local group where you all discussed it like they do in Alcoholics Anonymous, I wouldn’t mind that. But no, I mean to say there isn’t anything local. You’d have to travel wherever. I don’t know.
Talking to other patients is not for everyone. Some said they were not the kind of person to join a support group, preferring to cope in their own way. Although they said that they would be happy to help other people individually. Others had felt no need to contact support organisations because they had enough support. One woman was put in touch with other patients but decided not to pursue it because they couldn’t find a mutually convenient time to meet and she didn’t want to dwell on her illness anyway.
Although Luke had been interested to read about other people's experiences of leukaemia he wouldn't want to join a support group, preferring to cope with his illness in his own way.
Although Luke had been interested to read about other people's experiences of leukaemia he wouldn't want to join a support group, preferring to cope with his illness in his own way.
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Have you been in touch with any support organisations or support groups for your leukaemia?
No, not in the sense of belonging. I mean I’ve looked on websites and read other people’s experiences. In fact I find that very useful actually because obviously then you realise you’re not alone. And then it’s also interesting to see how they coped with something that might be worrying you. And the other thing I did do was put my own experiences out on a particular website simply to sort of counterbalance all the bad, you know, not horror stories but the bad stories, and show that you can come through it fairly easily, as I did.
Are you the sort of person that would join a support group if there was one in your local town?
No, I’d rather do it myself.
Why is that?
Just personality, you know, I’m responsible for my own life and just, I don’t. I also don’t, I mean going back to the alcohol thing, I tried AA a couple of times, it just absolutely didn’t suit me and was horrible hearing other people’s experiences and just realising what dreadful things do go on. But I never felt it actually aided me, I just always feel that if there’s something that needs solving I’ve got to do it and, just my approach.
National Support Organisations
National support organisations such as Macmillan and Leukaemia Care offer a variety of services and many people had asked them for information about the illness or advice on obtaining state benefits or grants (see ‘Finances’). Some people had been unable to obtain the information they wanted. Others had not found out about support organisations until after they had recovered and no longer needed them. Some people wanted to give something back for the support they had received and had become volunteers with Leukaemia Care to help others with leukaemia. Jeff had been helped by a local volunteer driving service which took him and his wife to and from hospital.
Mike obtained factual information from Cancerbackup (now merged with Macmillan) and attended stress reduction courses at his local Maggie's centre.
Mike obtained factual information from Cancerbackup (now merged with Macmillan) and attended stress reduction courses at his local Maggie's centre.
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So did you seek out more information for yourself or did you just go with what you knew from them?
No. I looked on the web in as much as I could then understand what I recovered, because I did tend to go to medical sites and it did tend to come out in very technical language, which wasn’t terribly helpful. But I went to a charity called Maggie’s and they were exceptionally helpful. Mens corporea, mens sana, they dealt with the whole lot, so where my wife and I were getting agitated about what this might mean they were very good with stress related courses, dietary courses, how to encapsulate your thoughts and get rid of them, so they were good from that point of view. I got a lot of information from them.
BACUP [forerunner of ‘Cancerbackup’ now merged with Macmillan] Ah Cancerbackup, I had information from them. But hairy cell is not that common and even BACUP didn’t have one of their big thick glossy ones, they had to produce a smaller version altogether for what hairy cell was.
Health Professionals
Some people said they had found their health professionals very supportive - staff were friendly and cheerful and the nurses showed great understanding because they had seen it all before. Knowing she could phone the ward at any time comforted Elsa. Others had found specialist nurses particularly easy to talk to about their concerns. Aley preferred to talk about his feelings with a professional rather than to friends. A radiographer comforted Gilly during an x-ray, shortly after she learned her diagnosis. Counselling helped a few people to come to terms with their illness.
A specialist nurse supported Neil; he could talk to her about things that he wouldn't raise with his consultant.
A specialist nurse supported Neil; he could talk to her about things that he wouldn't raise with his consultant.
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So you hadn’t got another patient to talk to but did you have support from other people around you?
Yes. I didn’t have, as you put it, I didn’t have another AML patient to talk to, but without getting too specific, the consultants were very supportive. And the clinical nurse specialist, well if it were up to me I’d make them mandatory in every hospital that does it, because they fulfill a role. They’re the link between the medical profession, they are the medical profession but they seem to be that link between the consultants and you the patient. There are certain things that I talked to my CSN [clinical nurse specialist] about that I wouldn’t have spoken necessarily about to the consultant, but they were able to say, ‘Actually you need to talk about that’, or… And because they’re not on the ward the whole time, or in my instance, they had more of an overview, and whilst extremely busy, not rushed off their feet in the same way that the ward staff are handling one thing and another thing and just constantly going round and, treadmill. So yes I mean I got that support.
Marilyn talked to a counsellor at a cancer support centre and later privately; she said it helped her to accept and then to live with her leukaemia.
Marilyn talked to a counsellor at a cancer support centre and later privately; she said it helped her to accept and then to live with her leukaemia.
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So initially that was so good to be able to go in there and just cry if I wanted to, get cross if I wanted to, get upset, and just know that I wasn’t leaving anything in the corner for her. We did a lot of cognitive therapy I think you call it, where you’re working towards things, and a lot of visual therapy and a lot of physically unloading. And I wrote about it constantly. I’ve got a book upstairs where I’ve got all my thoughts and feelings and there’s a lot of drawings in there and we did a lot of visualisation of how I actually felt. I felt very sort of bowed down and sort of loaded up with excess baggage, and we talked a lot about that and how you could change the image of yourself and maybe look at it in a different way.
That went on for about six sessions. She seemed to think we were making good headway so I met her at another clinic as well and we did a few more sessions there. And I just found it so good. I got all the strands of my life together, almost as if everything I’d been working for, all the problems I’d had, were all coming to this one particular moment being told that you’d got something like leukaemia. And having someone who wasn’t, it wasn’t sympathy, it was empathy. Somebody who couldn’t give me medical advice. They couldn’t put it right, there was nothing I couldn’t say, which was absolutely wonderful. So I think if anyone worries about seeing counsellors or thinking that it’s not for them, I’d definitely say, “Give it a go”, because you don’t know what’s in you until someone gives you that space to talk. And that’s what it is basically, there’s no real questions, there’s nothing set up. You go in the room, you talk if you want to, you don’t if you don’t. And that is such a, you know, much like being given, oh I don’t know what it’s like being given really, it’s like being given the moon when you’re a little child and you want to reach up for it and someone says, “Here it is.” And you think, and then all this outpouring can come out.
And it helped me through, she helped me through the work problem that I had with quite a few unsympathetic people. That was quite a difficult time and she helped me through that. She helped me look at myself in a different way. We dragged quite a few things up about when I was a child, about what sort of child I was. And that helped as well because your past, although people say you shouldn’t look back at your past because of what’s done is done, you are your past. Everything that’s happened to you in the past is what you are now at this moment in time. And my husband said he could never do that. He wouldn’t want to do that, whereas I found it really cathartic. It was what I needed. And after the NHS sessions stopped I carried on visiting her at her home until I felt comfortable enough to sort things out myself.
Religious faith
Being ill made some people think about spiritual matters. Brian discussed different religions with friends and a support nurse and started studying Buddhism. A strong religious faith had helped some to cope with the illness and to accept whatever the outcome would be. Prayer enabled Claire to find peace and not to fear death. Some had been uplifted by knowing that other people had prayed for them.
Jeff drew support from being prayed for and his belief that an external power was looking after him; his faith helped him to find peace.
Jeff drew support from being prayed for and his belief that an external power was looking after him; his faith helped him to find peace.
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What about your faith? You mentioned that earlier. How has that helped you?
Very strong. Without it I don’t know, coupled up with the care that my wife gives me and those nurses, but I’ve held a belief for a very long time that there is a power in prayer. And the first time the priest visited me I was on my own and I felt dejected and Joyce was on her way down. And what he said to me and the prayer that he said over me for Joyce and myself, I felt a different man from there on. And I firmly believe, like I told you before, someone up there is looking after me. And I’ve always had the faith. When I go to church I feel in this up-in-your-face, modern world that we’ve got today I find peace and contentment. And I firmly believe if something does you good, whatever it is you shouldn’t knock it. And people who’ve known me for years don’t even know I go to church because Joyce and I, we’re what I would term myself as a quiet Christian. I don’t shout and bawl about my faith but I know that I have it and it’s good enough for me to know that I have it. And it helped me a lot because my own church when I went back that day I was in tears with the welcome that I had and they welcomed me back in from the vicar and I’ve been very, very fortunate. Because I think without something to believe in I think you live in a very negative little world. And sometimes I feel our young people, not that they should go to church because it’s entirely up to them, because you can’t go dictating terms to nobody, but unless you have something to look forward to I think you live in a very negative world.
Last reviewed: December 2018.
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