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Colorectal Cancer

Support from health care professionals

While the primary task of health professionals is to deal with people's medical needs, treating people rather than diseases requires attention to emotional as well as physical needs. It is also important to identify gaps in support that may occur as people's needs change through their cancer experience and they move between primary and secondary care. Poor communication between hospitals and GPs often makes it difficult for GPs and others who provide support in the community to know when and what kind of support might be needed. 

Simple acts of kindness on the part of health professionals often had a powerful impact on people's emotional state and ability to cope with their illness. A woman explains how it helped her when a nurse offered to hold her hand. Another woman who became depressed in hospital was moved when a nurse took the time to wash her legs and feet. The warmth and approachability of a GP and surgeon made a third woman feel especially well looked after.

 

She explains why she appreciated a nurse offering to hold her hand.

She explains why she appreciated a nurse offering to hold her hand.

Age at interview: 77
Sex: Female
Age at diagnosis: 68
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I, I don't know whether I've been fortunate or what but I've found that they've all been very supportive and very well nice, kind, and not made you feel, I mean even the nurses when I used to go for my check-ups, they always had a nurse in there, except this time and, and nearly everyone of 'em have all said to me you know "Do you want me to hold your hand?" And I've always said "Yes" I ain't scared, you know, I said "Yes please" because I just like contact like that you know.

Hmm. That helps does it?

Yeah, I think really and truly this was the biggest thing I missed when you know, when my husband died that um, well you didn't have contact, or you didn't have anybody to sort of give you a hug, like not, I mean my daughter did, like little ones. But not like your husband sort of sitting and saying well you know "Well don't worry love, it'll be alright", you know, blah, blah, blah.

You just, so you had to really a lot of the time put on this front if you're that way. I mean I know some people can't do it because they just can't, it's not, they're not that sort of people and, but as I say it goes back to I can't bear people feeling sorry for me or pitying me.

No, but you found it helpful when the nurses would hold your hand?

Oh yes, and they was nice to you without being over the top you know.

 

A simple act of kindness on the part of a nurse helped her at a difficult time in hospital.

A simple act of kindness on the part of a nurse helped her at a difficult time in hospital.

Age at interview: 54
Sex: Female
Age at diagnosis: 52
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Well it was a very big ward, there were several wards within the ward all dealing with gut problems, not just cancer, gall bladder, all sorts of things and they were so busy, the staff, going backwards and forwards. It started so early in the morning, having to get people up sort of dealing with you know, having to give them bowls to, so that, I mean we were washing ourselves. I mean virtually from, from day two I was washing my own face and you know cleaning my teeth and so forth, which, which is good, it would be very easy to lie back and sort of you know just give into it otherwise, which was good.

But there really wasn't the time to, certainly wasn't the time to speak to nurses about um how you were feeling emotionally, I didn't feel it was fair. And nobody sat by my bed and, and asked me, they, they really did not have the time at all and I was only aware of one other person in the ward having cancer and he was quite a young boy, well he was very young, he was my son's age and I did talk to him, we were at opposite ends of the ward.

But I was moved fairly quickly to the, another one and there was nobody in that ward with cancer so I couldn't really even talk to another patient about it.

So really, I just remember one nurse who had come over from South Africa for three months and she was really the only one that I felt at the time showed me really great kindness. She actually washed my legs and my feet, which was wonderful and just that very simple human touch and that very simple kindness of doing that made me feel so much better.
 
 

Her GP and surgeon were very approachable and this meant a lot to her.

Her GP and surgeon were very approachable and this meant a lot to her.

Age at interview: 68
Sex: Female
Age at diagnosis: 67
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Well the district nurse can't get over the fact that I can eh, do all this house and more, and hang curtains when I shouldn't be' "You should have somebody in to do that." And then my son was here when doctor was up, and he said to the doctor "Will you talk to mum because she's been out doing that garden?" He says "Bill I don't talk to your mum because every time I say "don't do" she carries on and does it and she's fine." He said, "So all I'm going to do is ask her to put her coat on and come and do mine under medical supervision!"

As I say it's like I go to the doctors and they're not doctors to me, they're friends, right from the surgeon down. The surgeon, he's from Glasgow and he's the top man in Britain for bowel cancer which I was lucky to have, and he jokes about things, he, his wife was into hospital just after I had my operation and I mean you didn't ask what had happened but he told us, he had to cancel because his wife was rushed into hospital. But it turns out she had a wee baby girl and when you say "How's your wee daughter getting on!" "Women. That's two women I have to fight against now!" and he jokes about things.

I mean he does not go in, some of these surgeons when they come through the wards could hardly speak, but he jokes and he tells you anything you want to know. You just have to say "Could you tell me?" and he'll be honest with you.

Macmillan Nurses and specialist stoma care nurses were highly regarded. Many people appreciated the combination of practical and emotional support that both groups of nurses routinely offered. 

GP support after treatment for cancer was a difficulty for many people and it was sometimes difficult for GPs to strike the right balance. One young woman who experienced a delayed diagnosis felt that, after treatment for cancer, her GP was over-reacting to any sign of illness. Other people felt their GPs were indifferent or unprepared to deal with cancer patients.

 

She feels her GP over-reacts now that she has had cancer.

She feels her GP over-reacts now that she has had cancer.

Age at interview: 35
Sex: Female
Age at diagnosis: 32
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And this is another thing that I have found since I've been ill that people now, from not actually listening to me at all I felt, before I was ill, when I went to the GP so many times with these symptoms which were serious symptoms and really I felt that no one was actually listening to me, to now I get total overkill now when I go to the GP.

And as I say as I was having these migraines last year and I went to the GP and she said "Look I know you're going to be worried about it so the best thing for you to do is for me to refer you to an oncologist and they'll see if there's anything wrong, if you've got a tumour in your brain or whatever."

So that's what happened so I ended up having a CT scan and of course everything was okay. I mean understandably you're under a great amount of stress so of course you're going to get migraines, it's going to come out in one form or another.

So I do find that overkill, I think it makes me more anxious than is necessary and yes I can appreciate why GPs react like that now because they don't want to miss anything. They're trying to I suppose relieve any anxiety I've got but at the same time I think it would be more helpful if they just said "Look you've got a migraine you know you haven't got a brain tumour," without putting me through all this extra stress of going to see you know an oncologist again, of having a brain scan. All these things are stress that I don't think I actually really need. So I think I do get, that's slightly frustrating.
 

A woman who had become so severely constipated after surgery that she had to be re-admitted to hospital was advised by her GP to 'drink some cold water'. A man who had a temporary colostomy was told by his GP that organising stoma care support was not his responsibility.

Another man felt his GP was indifferent to his needs and shocked when he suggested he could go back to work four weeks after major surgery even though his job involved heavy lifting. He explains how he changed GPs and the difference between the old and new one. Several people said their GP admitted to knowing little or nothing about aftercare for bowel (colorectal) cancer patients or the needs of people undergoing chemotherapy.

 

His GP was indifferent to his needs after treatment for cancer so he changed to another, much...

His GP was indifferent to his needs after treatment for cancer so he changed to another, much...

Age at interview: 67
Sex: Male
Age at diagnosis: 64
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But I had to see me doctor, I think it was every fortnight to sign on like, and from the time I went to see my doctor he never examined me, done anything, all he done was just write prescriptions out and give me tablets like, you know.

He never once got out of his chair to examine me or nothing, to even look at me scar or nothing. In fact it got to the stage, before I left him, it got to the stage where he was saying "Oh you can go back to work soon" and I hadn't been, this was about a month along the line, this was.

And in newsagents you're picking up heavy weight, you know papers stacked together, you're picking up weights all the time, and I thought, this is not on, I can't do this like you know.

So the following day I went and changed my doctor and he was completely different. He, every time I've seen him he examines me, he asks questions about different things. When I'd been, you know  through other illnesses that have come up, he's always asked me, referred to me what's its, reports on me cards.

And it's got to the stage now where I, instead of going to the hospital for water and blood tests now, they've asked me to see me doctor and he does it for me which you know, which, which, they said "Have you got any," you know "what's it's against your doctor?" I said "Me doctor's alright," I said "I can trust my doctor a hundred per cent" like you know. And they said "Do you mind him doing all these blood and water tests?" I says "No."

We went away on holiday last year and I was a bit worried going abroad for the first time like you know, and I asked advice off my doctor then and he gave me a thorough examination before I went away.

He said "There's no problem at all," he said "you go away and enjoy yourself." And, and that's, that's really all you want, you know, is somebody who's examined you, you feel a lot better you know, instead of somebody just sitting there writing things out for you, because you're just wasting your time really I think you know, if you do that.

People who had good GP support after treatment for cancer felt that this greatly aided them in their recovery and helped them regain confidence in their health. 

Support for patients between diagnosis and treatment was also a difficult area. One woman explains how she spent the weekend after receiving her diagnosis on a Friday. She also argues the need for better community aftercare once people leave hospital.

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She emphasises the need for support after a diagnosis.

She emphasises the need for support after a diagnosis.

Age at interview: 51
Sex: Female
Age at diagnosis: 41
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I spent the most miserable weekend of my life. I was told on the Friday that I'd got cancer and I then had to get through a weekend before I was in hospital the next week. And I went round all the local bookshops trying to find a book on the subject and didn't find anything. I did buy a book but it was useless. But it was an absolutely miserable weekend. You know, you're walking around with this cancer inside you and you just feel awful.

Uh, and we were going out on the Sunday to a birthday party at a friend's house and I spent the whole time upstairs with the children, it still makes me upset about it, looking at my son. It was uh, that was the worst weekend of my life.

It's, it's really important I think that doctors understand that once you're diagnosed you need support to get, before you're operated on. And it can take several weeks and it's a very upsetting time for people, and it's the time when you probably do need support.

And you need to have the number of somebody you can ring like the specialist nurse, somebody you can contact if, if you're being distressed at that time, or you're finding it difficult to cope. It's just really helpful to find somebody to talk to at that period who can understand what you're going through and has maybe got some ways to help you through it.
 
 

She explains the need for follow-up support after treatment.

She explains the need for follow-up support after treatment.

Age at interview: 51
Sex: Female
Age at diagnosis: 41
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I didn't have any um follow-up in the community. I didn't have uh any contact with the GPs unless I went um, because I'd got a twinge or something that worried me. I didn't have any contact from the hospital either, there wasn't a specialist nurse to help me through this. And a lot of people still get very little or no support afterwards, which I think is a shame.

Just to have the phone number of somebody you can ring is very important um, because you are bound to have questions. And I had questions um, that I didn't put to anyone and I'm, they made me more worried. If I'd been able to talk to somebody right away uh, then I could have saved myself quite a few sleepless nights.

Uh, and I think that's why it's so great if you can get a specialist nurse or somebody whose, you've got a phone number of, if you've got worries you can clear them up right away just by ringing them and having a chat, because we all have worries.

And I think nurse-led clinics are a great thing because nurses tend to have more time to talk to you and are more reassuring. And so if you can find a nurse-led clinic that you can go to with your worries, I think this is a really good idea.

Some hospitals now will give you um, a coupon to fill in if you've got a, a problem or a symptom and then you can be in charge of your own follow-up.
 

Last reviewed August 2016.

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