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Colorectal Cancer

Support from family and friends

Coping with a serious illness can be a challenge and support from family and friends is often crucial. However, knowing when or how to offer support, and how much support to offer can be difficult. 

The majority of people we interviewed said they had received excellent support from family and friends and that it made a tremendous difference to them. Many felt that support had got them through their ordeal and had brought them closer to others. A woman explains how she coped with 6 major cancer operations with support from her partner. Another woman was moved and greatly assisted in her recovery by the support she received from family, health professionals and her community. Other people appreciated practical assistance with cooking, shopping and household chores especially if there were children or others who needed looking after. A few people did not want or expect much support but sometimes said they were pleasantly surprised when it was offered.

 

She explains how her partner's support helped her cope with 6 major cancer operations.

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Age at interview: 54
Sex: Female
Age at diagnosis: 47
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He's been very positive, very encouraging, hasn't given me any sympathy. He feels that that is the most important thing. Sympathy, you can't have sympathy with something like this, it's a war, it's a battle and you have to fight it.

So how has he supported you?

Literally by being there for me every step of the way, encouraging me every step of the way, that every operation was going to be successful and everything was going to be fine. And as I say he just explained every step of the way, "Every one is a battle. You've fought this one, OK we've got another blip' it's another battle. Whatever, it's, it's another, it's another battle that you've won." And that was the way we got through it.

Did you ever get to a point, I don't know, half way through or something, where you thought, I cannot face another operation?

No.

You always?

I just knew all the time that whatever they said I had to do, I had to do. I just fought and fought and fought. Otherwise I would not be here today. I'm convinced of that.

But it must have been exhausting keeping your spirits up.

It was exhausting.

the experience of it.

Oh yes.

How did you do it?

Well um, again I have to say, my partner. We've had wonderful holidays. I went on, on a cruise, Caribbean cruise. I've been to Hawaii, and all these things have kept me going.
 
 

She had tremendous support from family, health professionals and her community.

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Age at interview: 68
Sex: Female
Age at diagnosis: 67
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I've had so much help from doctors, community nurses, nurses, social work, the surgeon, everybody. And the surgeon went into every detail with me, which I think helped.

The minister even, friends, I mean I was lucky I've been very lucky because I've so many friends saying prayers and so many doctors, nurses, community nurses, social workers, helping that I, I must be lucky because I've heard of other stories where there's no help. But as I said before I was lucky because the doctors in the practice, the nurses in the practice, down to even the receptionist, I just needed to pick up the phone and there was somebody here for me.

But as I say everybody was there for me, and my sons and my friends still are to this day, the minister, the doctor. I mean the doctor at the practice just pops in to make sure we're OK. It really did help a lot.

It helped knowing I think it helped knowing that people cared too. I mean I knew that I had a lot of friends but I didn't know till then how many friends and how many people I'd been involved with, even cousins that I hadn't seen for two or three years were into hospital to see me. And I couldn't believe that everybody had sort of come round and, it sounds stupid but I'm going to say it, it was as though they came round and had us there in the middle of them all and they were protecting.

Like they made a big circle around you?

Yes and they were protecting me. And the minister he just said to me, he said "Well" he says "we just said, we just told at the prayer meeting that you, that you're not ready, we?re not wanting him to take you yet so our prayers have all been answered." Now it wasn't put as, how can I put it, a religious thing, it was more put as God's there but "we've told them, he cannot have you yet".

Sometimes support from family and friends could be intrusive, overwhelming, and occasionally morbid. One man explains how difficult it became for him to repeatedly discuss his condition with well-wishers. A woman was annoyed by tearful visits and prayers that seemed to assume she was going to die. A few people, such as a man whose job involved the pastoral care of others, felt strongly that they wished to keep their illness private. However, a woman who at first wanted privacy explains how she came to see the interest of others in a different light.

 
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He explains how well-wishers can become exhausting.

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Age at interview: 53
Sex: Male
Age at diagnosis: 51
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Initially, when this information hits the news it's like a bereavement and particularly in the first two or three weeks when you've got people phoning up, because people outside the family, when they hear the news they feel obliged to do something. They can't, if they hear that you've got cancer they can't just ignore the thing and not phone you up and therefore they phone up and you know, in terms of commiserating with you.

The problem with that is you're starting to come to terms with the, with the, with the awful truth of what's happening but you can't, when someone speaks to you about it you've then got to re-live the whole thing and go through the, you've got to bring the whole, the awful thoughts you've had to the front of your mind so that you can, you can speak to someone about it. So it's actually quite traumatic.

What we discovered is the best solution for people who hear about a close friend or relative who's in a similar situation is for them to send a postcard, and the postcard says "I'm really sorry to hear about this, if you want to call me, call me whenever you want, you know, I'd like to give you as much support as possible."

And this, I've now realised is actually the best solution because then the cancer patient can decide either to call or not to call and in his or her own time. And can compose their mind rather than getting that call at eight or nine o'clock at night when you're really tired and you want to go to bed and suddenly you've got to talk to someone and reassure them.

 

She gradually became more comfortable with other peoples' interest in her illness.

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Age at interview: 54
Sex: Female
Age at diagnosis: 52
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I think I'm quite a private person, and I think I did find it quite hard that so many people knew, but having said that it generated a huge amount of support and care and love, and the cards and flowers and things that I had just sustained me for oh about six weeks post-operatively, and while I was in hospital.

And although in a sense that, I mean I think part of the problem with bowel cancer is people feel it's unmentionable because it's talking about a part of your bodily processes that people don't normally feel comfortable with. But once I'd got over that and didn't mind everybody in the world knowing generally about the workings of my system it was fine.

And I found people were saying to me "Oh you know we really are very interested to know about it, we don't like to ask in case you mind, but we'd love to know."

And I think, I think out there, there is a, there's a sort of fear of it and a reluctance to talk about unpleasant topics but actually a genuine desire to know the facts.

The strain of dealing with a life-threatening illness sometimes gave rise to complex emotions within families. One woman felt that she could not express her true feelings in front of her family because it was too upsetting for them to listen to. Another woman explains how her husband's efforts to help her at times became draining. A third woman found that her husband became over-protective and this made it difficult to accept support from others.

 
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She could not express some of her feelings to her family members.

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Age at interview: 33
Sex: Female
Age at diagnosis: 28
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I think the whole, the whole year really after diagnosis and surgery was a very, very difficult year and it took a lot of encouragement really and like my husband was really fantastic and very, very supportive and had quite a lot of time off work to, to be with me.

And a lot of the time I had family at the hospital as well, so I did have a huge amount of emotional support, but it was all from, from family and friends.

And there was something also quite frustrating about that I think in that I couldn't say certain things to them like worrying about dying or sort of the, the bleakest things without them trying to make me feel better. And that was very hard, that made me feel quite angry really, that I couldn't express myself, you know how I really felt without really upsetting other people.

It was different with different people because certainly with my husband I could talk about fears and things but it so directly affected him that that was really difficult. You know I felt like I couldn't sort of go on about it because it would hurt him too much to hear it really.

Certainly with my mum I felt like she couldn't cope with it basically, like she was so upset herself. And I mean there was a whole different variety of responses from friends really but I suppose what I, I did really feel like there was nobody I could talk to about how desperate I felt sometimes and how fearful I was without seeing them get really upset. And I felt like there needed to be someone more outside of the situation.

 

After surgery she had to put her own emotional needs before those of her family.

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Age at interview: 54
Sex: Female
Age at diagnosis: 52
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After the operation I couldn't be brave for them any more I really just couldn't. I, I just, some of the time although I needed support and I needed the help and it was wonderful to see the way my husband looked after me.

I often felt I just wanted to crawl away and lick my wounds and be on my own and just, just deal with it on my own because I, I just couldn't, I couldn't actually cope with, but my children really dealt with it very well.

My husband, although he was dealing with it well and looking after me and showing me lots of love and support, he did find it quite difficult. He wanted to cook me lovely meals and I knew I couldn't cope with them and you know I think I found it very difficult to say "Look you know, don't cook me that I just, I just cannot eat it."

I didn't, I didn't want to upset him, but at the same time I, I knew that I really had to think about myself and my own needs in all sorts of ways and really that they just, just had to deal with any problems that they had, really they now had to deal with it on their own.

It was quite a long time before I felt able to cope with other people's feelings about my cancer.
 
 

Her husband's distress over her illness expressed itself as over-protectiveness.

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Age at interview: 60
Sex: Female
Age at diagnosis: 59
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He was excellent but emotionally he didn't want anyone else near.

Near you or near him?

Near me.

Why do you think that is?

Very, I have a lot of friends you see, I belong to a church and I have a lot of friends and even while I was in hospital my daughter and my sister were having to arrange visiting when he wasn't going to be there. When he wasn't there the others could come, but not when, no, he had to be, just him. I think, again it was probably the fact that he thought he might be losing me, I don't know. But he was very, very what's the word protective.

Once we were at home, once I was at home he didn't mind people coming then and he was very pleasant and would make drinks, you know, make them feel comfortable. But when he was there no, no one else, just him.

Well I didn't realise when I was in hospital about what was going on in the background, where the visits were being arranged around, around him. Because I do, I have one very close friend and she wanted to be there all the time which of course you can't. But I did eventually realise that it was difficult, it was difficult and if anyone turned up and he was there, I would, you know it wasn't very pleasant because I knew he didn't really want them to be there, so that made it hard for me really.

Quite often, patients found that they had to support friends or family members who were not coping with the situation. A woman remembers being the one to dole out tea and sympathy to a friend who had come to offer her support. Another woman, with advanced cancer, explains how her husband began to behave as if she had already died. Several people had not realised how much strain their partners were under.

 

For a time she felt her husband had given up on her.

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Age at interview: 37
Sex: Female
Age at diagnosis: 34
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It is strange because, because you can't plan ahead really too much it was almost like he'd given up on me you know, it was quite strange. Until I had to sit him down and say to him "Look, I'm not dead yet, you know you've still got to live your life. You can't not live it and sit there and think "oh she's gonna die, she's gonna die", it doesn't work like that."

I said "I know we can't plan for a holiday next year," I said "but you know, some people don't, some people just go off on spec, you know, you've just got to have, look at it that way."

So yeah I had to sort of sit him down and it was almost like he had me dead and buried and sort of say to him you know "You can't" because he was being, he was getting miserable, you know he was just getting depressed and I thought I've got to sit and explain to him, you can't live like that, if he goes on like that it'll just drive him mad.

Is it better now?

Yeah, yes. Yeah we're doing things now weekends in London and I'm up to Edinburgh soon, so we're starting to do a few things whereas before, he wouldn't budge, he wouldn't go anywhere, but now, it's much better now.
 

Dealing with illness over a long period of time could affect the levels of support offered. One woman became depressed when family members had to return to work after her initial convalescence and she was spending a lot of time alone. Another woman found that family support waned over time. For those who did not have extensive support networks, the kindness of health professionals and support groups were often vital.

 

Her family's support dropped off over the course of her illness.

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Age at interview: 65
Sex: Female
Age at diagnosis: 59
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From the off yeah I couldn't have faulted them. But then after as I say the first year when things still wasn't getting any better, I mean alright they had the two young children theirself and I mean obviously my son's got his own business so I mean he had enough to cope with. I mean not that I bothered them that much.

I mean I never used to whinge and well not that I thought, like I mean I was never constantly on the phone to them or anything. I mean there's times when I can honestly say that I've laid in there for two, three days like really, I mean luckily I've got a sister over the road and two nieces that live down here. I mean they like rather than bother like my son. That's the reason I moved here actually.

It sounds like you had to deal with quite a lot of it on your own?

Yes but I'm the type of person though that I would rather deal with it on my own like than, because I think I'm bothering other people you know I would rather deal with it on my own.

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Last reviewed August 2016.

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