Support from family and friends can be crucial in coping with a serious illness. People said that family members had offered practical and emotional support at every stage of their illness (also see ‘Telling others about the illness’).
Peter (Interview 36), for example, recalled that at a point when he was too ill to make decisions his wife had helped him copy his CAT scans to send them off to America to get a second opinion about treatment options. Alison said that her husband had been ‘absolutely brilliant’. He had helped her to believe that she would recover. Ann emphasised that her husband had been ‘fantastic’ and had ‘even started to cook’. She pointed out that a long illness can be tough for the carer, husband or partner too and that their needs should not be forgotten. People’s grown-up children and parents had helped too. Many children, for example, had searched the internet for information about the latest treatments (see ‘Finding information’), and parents had helped with the care of younger children.
Michael is a retired wine merchant. He is married with one adult child. Ethnic background: White, half Polish half British.
And I think the other thing I had was the love and support I had from my family, from my friends, from colleagues in the trade and from my company, which really were, you know, beyond the call of duty and was quite outstanding. And I think that made one realise that one was actually a valued person or one had some value. I think it’s all so easy in our life, we think that nobody likes us or we’re a bit of a wimp or bit of that, and it was really immensely gratifying to know that people did care. My wife was absolutely outstanding. Nothing was too much trouble, and as was my daughter and the rest of her family. And it really was a very moving experience to see the love and the care and the support they gave me.
So yes, it’s been I think in the last twelve months a big sort of learning curve on the emotional side, and I think it’s been difficult for my wife as well, and what we’ve had to do, I’m delighted to say we’re very devoted to each other and that was really important that we knew we both loved each other very much and that it was just a sort of superficial thing that was happening. But we had a, we used to go in and have board meetings where we’d discuss various things and one of them was our emotional state and how we were feeling towards each other. And I think it’s very important that you have to have honest talks with your partner or wife, or husband, and really say how you feel and try and explain how you feel so that they can understand. Because it is tragic how many, and I now understand how many relationships do break up as a result of this one party or another can’t cope. But if there’s a will and there’s devotion on each side then it is possible to come through it and I think be strengthened for it in fact.
Age at interview:
Age at diagnosis:
Maureen is a retired therapeutic counsellor; she is married with 3 adult children. Ethnic background: White British.
Tell me a bit about the impact on your husband, how do think he’s coped?
OK. Well we are very close. We are very, very close. We are, I don’t … we’ve just always worked so well as a team. And when it happened he said to me, “I will not be leaving your side. I will be with you every single step of the way”. It has absolutely terrified him the, the thought of losing me, being on his own. He’s not a person who likes to be on his own. But he is, he, he has really, really suffered, it has been really, really hard for him. But we’re doing it together. We try and say to one another, sometimes we’ll say, “Are you OK?” And, I say, “Yes, I’m fine.” And then, “Well, well actually, no I’m not.” [laughs] And, and vice versa. You know, there are times when I say, “Are you all right love?” And he’ll say, “Yes, yes, I’m fine.” And then he’ll go, “Well, no, I’m really, I feel really upset, you know, or I choke”. He is fully into all my treatment. He is visualising all the time. He visualises my tumour shrinking all the time. He fields calls, because sometimes I don’t really want to talk. So he answers the phone all the time. He’ll, he’ll do the emails and things to, to friends and keeps everybody in touch with, with how things are. And he is equally as amazed and delighted at the response.
We spend a lot of time, when we get these responses from people, shedding lots of tears [laughs]. But we, we have got a very, very close relationship and we support one another. I still, I, even though it’s me with the cancer, there are times when I need to support him.
Age at interview:
Age at diagnosis:
Ann is married with 3 children. She was a GP for over 35 years til her retirement when she developed pancreatic cancer, co-founder of the charity that runs healthtalk.org inspired by her own experience of breast cancer, and Medical Director of the Oxford University Health Experiences Research Group. Ethnic background/Nationality: White British.
My husband has been fantastic and my family have been fantastic. My husband has even started to cook. And it’s those sorts of things which make an enormous difference as to how you feel, especially when you’re feeling, “Golly, how long is this going to go on for?” I think having something like this makes you think about all sorts of things that you value in life really, and what’s important.
I mean I think it’s very, very difficult for the carer or the partner or my husband, because a) everyone’s concentrating on me. But actually people have been very good and brought food round for him, brought meals round for him, you know, mushy fish for me and a rather nice meal for him. But I also worry that, you know, I used, we had a rather conventional way of running our household in a sense in that I did the cooking and he did some of the other things. And of course that’s changed to a certain extent. But I think it’s quite tough for, for the carer.
And I think also, I think a lot of men find it quite difficult to talk about these things emotionally. And he has been terrific in supporting me in a way that I didn’t expect him to be so good actually. Because I don’t think, you know, no one likes illness but I think it is, I’ve been the one who does the looking after or tended to. And I think having kind of come from a family where all the women lived for a very old age, I always expected to be the one who would be living to their 90s. And to find myself needing the looking after, I found, it’s a funny role to be in when I hadn’t expected to be like that.
But I think, I think it’s important that the carer does have some space, and I do encourage him to try. Like at the moment he’s gone off to a conference in America. And it’s, at one level I liked him to be here all the time because I want someone here, but I don’t want, at the same time I feel it’s really important that life goes on for everybody else. And you’re more able to care if, and be supportive if you also have your own life going on. And I think different people will manage it in different ways. I mean we don’t talk about my illness all the time at all, but it’s very good to be able to talk about it to other people, to one or two close friends.
Davinder’s daughter was a great support throughout her illness. For example, she visited Davinder in intensive care' although Davinder was still unconscious she talked to her and told her that she was fine and that she was breathing well. Davinder was sure that these positive thoughts had registered in her own brain. She called this approach ‘neuro-linguistic programming’, an approach which uses attitude towards illness to effect change and to promote healing. She felt sure that her daughter’s actions had helped her to think positively, which in turn had helped her body.
Davinder was a caterer, but is now retired. She does voluntary work with Asian Radio. She is divorced, and has one daughter. Ethnic background/ nationality: Indian.
I can, like what she told me, give you this information, but I do not remember the previous day, on the operation day she came to see me. All I was aware of it later that there was lavender oil sitting on my trolley. Which I, made me realise that, “She has been.” She did tell me that she will come whether I’m aware or not. And she, then she, later on she told me that she did tell me that, “Mum, you’re okay. Your operation went well” and she put some lavender oil on to my chest as well, on my hand, and made me smell it. And that normally calms me down. Which I’ve been doing it all along. I, and I did tell her that, “It helps me.” So she held my hand and she carried on talking to me, “Mum, you’ve done very well and they say the operation went well as well. And nothing serious, no serious went wrong. And it was normal procedure and it took about three hours to go through the operation. And everything is back to normal.” This is how much assuring she was for me. And the nurse said the same thing as well, “The operation went well and nothing serious went wrong. And you are okay really now, for, for the time being. And see how it goes.”
So that, my daughter, she did sort of hypnosis on me and NLP [neuro-linguistic programming], assuring me that, that my body is doing well and I’m breathing well and operation went well. These were very assuring, these things, to know it. Like I didn’t feel it. Like I took, you take it for granted that you’re breathing. Which you do never consider that it’s something extra precious.
But you weren’t aware that your daughter was doing this? You were asleep, were you?
No, that was done, like she came after the operation. They allowed her to come in to see me, but I was not conscious.
So you said that she did some hypnosis, but you were asleep at that time.
I was asleep. And that’s what she told me. So I believe it helped me. Because these things do anyway, because it gave me feedback of that everything is okay. It registered in there. And the next morning I came up with it as well, all this stuff that I’m okay, like my own ideas and things. And my philosophy, you can call it, that the body is a mega-network of information and it’s a marvellous machine and it has got enormous healing power itself and that if you direct it, it helps you. So I was aware of it, all this, that it will help me. So I told myself once I woke up first thing that, “The healing, you have to do yourself a little bit as well to help myself. And they’re helping me.”
People recalled how their friends and colleagues had helped too. They had helped with shopping, housework, and cooking. They had picked up young children from school and had driven people to hospital appointments. They had sent flowers and cards and had been willing to listen when they were needed. Vicky was glad to have friends who had had cancer themselves. She could phone some of them at any time to talk about her illness. Maureen’s friends supported her with their emails, prayers, pledges of love and reiki healing (see ‘Complementary therapies’). Ben said that family and friends had given him practical help and encouragement, including some in distant places who he had contacted through emails and Facebook.
Ben was a Care Worker before he was registered disabled and had to retire due to ill health. He is married and has 4 children. Ethnic background/Nationality: Black British.
I don’t know, it’s just well, I’ve lost all interest, basically, but in saying that, without the friends and family around me, you know what I mean, I could easily have gone, “Oh, I give up. I don’t want to carry on.” And I think that’s part of the battle as well if you stay positive, mental attitude.
The family have been brilliant. You know what I mean, but, you know, we grow older together makes us stronger, you know what I mean. And I really had help especially when it comes to the wedding and organising the wedding. We didn’t have a clue.
We wouldn’t have, without my eldest sister we wouldn’t have had. She took the photographs, the cars, the all over she took all over.
Yeah, and the best, biggest surprise was the pair I used to work for. I was walking past the office to go to see a relation, my wife and he pulled into the car park so I spoke, was speaking to him. He said, “What are you doing?” So I was just talking generally about health and that. I said, “I’m going now.” He goes, “Just hang on a minute.” And he pulled out this big wad of money and went, “Take that.” I was like, “Okay.” So I didn’t bother counting it in front of him because I thought that would be rude, you know what I mean. I got home and it was almost five hundred pound. I was like, “Oh my God!”
Richard (Interview 22) felt that this was a difficult time for his three sons aged 16-23 and that they needed his support. He was grateful for the support of his children, his ex-wife and his many friends, reflecting that ‘one of the things that cancer brings out is the love and affection of others around you’.
William and David (Interview 30) stressed that it was important to ask for help when help was needed. When David’s wife Fiona was very ill he had needed help with their young children.
David is a hydrologist (senior consultant). He is a widower and has two children. Ethnic background/Nationality: White British.
Yes, I just, I was just thinking about what we went through and partly what happened to me and slightly how I coped. Early on, immediately after diagnosis, I managed to have a, a bad moment at a friend’s house where I basically I couldn’t speak and I was very upset.
And this was before, this was actually immediately after the diagnosis so most people didn’t know it. And the two people who, the house that I was in, the two people there were very good because I, I had a huge howl …
.. and it let an awful lot out of me and they were very kind, supportive, she actually comes from a kind of, a caring kind of profession so I think she probably understood my upset-ness. So doing that I think was a bit of a release in some ways. The other thing, and again it’s, it’s kind, it’s a support issue, you have lots of friends but there are certain people who during the course of what we went through I found more useful. But I don’t mean they’re better friends or anything... but you will, I think you will find that there are some people who you connect with, or they connect with you and that is really important because I think that they, they have a, not a full understanding but they, the empathy, empathy is right there. And the thing with friends is that when you’re going through this it before this I probably wouldn’t ask too much of people but when I was there I just put every, all those kind of inhibitions to one side and in my mind I just said, “Look, I will ask people.” People were saying to me all the time, “You’ve got to ask us.”
And I did. And that’s really, really useful to do that. And people genuinely want to help. And as a result there, you, you find that there are friendships, at the time which are so helpful. And if I had advice, which seems a strange thing to say, if I had advice it would be, accept that, those offers of help, of friendship, and really don’t worry. It’s like, we’ve got children, if I needed the children to be looked after, straight on the phone and just ask someone. Before Fiona was unwell I’d have found that difficult, I was imposing.
People want to help. They genuinely do. And that can be very helpful.
Accepting help may not come naturally to some people. John (Interview 21) said that when his wife was ill they found it quite hard to accept help from other people because he and his wife were used to being independent. Helen admitted that she was very proud and didn’t like asking anyone for help in the house. However, she was glad to know that help was available if she needed it. William suggested that some people ‘over-react’ and ‘over-support’, and Donna found that some people phoned too often. John suggested that people don’t want to talk about their illness all the time and sometimes want a ‘normal conversation’.
Some family members were better than others when it came to giving support. Some people said they couldn't talk to some family members about their illness because they were in denial, while they could talk to others. Some people realised that some of their friends found illness embarrassing and had avoided seeing them rather than having to deal with it (see ‘Telling others about the illness’). Others recalled that family members or friends had broken down when they heard the bad news and that it had been hard to cope with their negative or emotional reactions. In that situation people felt they had to support others at a time when they needed the support themselves.
Peter (Interview 13) had to cope with cancer without his wife’s support. He suggested that she found it hard to talk about illness partly because she was ill herself and partly because she feared the future. Peter was well supported by his children and by his friends. However, when he told members of his own family, such as his grandchildren, about his illness he felt he had to reassure them.
Peter is a retired sheltered housing officer, he is married with two adult children. Ethnic background: White British.
So what do you do for support?
…. Well, there’s my family who have since the diagnosis been very supportive, and there was a family get together at Christmas 2009, I went down to [the town] where most of them live, had a get together and when I spoke to one of the family members afterwards she said that after I’d left everybody burst into tears. So that kind of gave me food for thought, because that indicated to me the strength of feeling there was about what was wrong with me, and one of my granddaughters, for example, was very, very upset, and was full of tears, mistakenly thinking I was going to, like, die within a few days. And I had to go with her into the kitchen at my sister’s house and I had to have a talk with her and try to make her understand exactly what was happening and what the likely outcomes were going to be, and reassure her. So, in a way, I’m getting support from them but I’m also having to provide reassurance for them, to explain the facts as opposed to what they may or may not know or assume, you know, about whatever it is I’ve got and what’s likely to be the outcome. Interesting that it’s a two-way thing really.
But the main thing is I, I know that I can call them up and talk to them, and also I have a couple of friends who’ve also had cancer and I’m able to indulge in a kind of mutual support system with them as well. I can talk to them and they can talk to me about, you know, how they’ve been and how I’ve been and, and so it works like that. But I can’t, I can’t talk to my wife about it at all. She gets angry if I even talk on the phone to someone else, because she says that’s all, all she ever hears. So she gets a bit fed up with it, to say the least.
Although Peter’s (Interview 13) wife found it too painful to discuss the future with him, several people made it clear how important it was to have someone they could talk to openly about their worst fears and feelings. For Maureen this had been her husband, and a close friend who had died of breast cancer. Steve shared his fears with his wife but he also talked to good friends he had made through his church and to other ‘secular friends’ who worked as doctors. Steve could ‘unburden’ himself and ‘talk with people when necessary and laugh with people’. There was, he said, ‘a lot of black humour in my life sometimes.’ Ann felt she and her husband shouldn’t always have to be talking about illness, so she valued having friends she could talk about it to. That way it was easier to ‘joke and laugh and for life to just go on and have fun still’.
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