Lung Cancer
Talking to doctors and the care you received
Most of those we interviewed spoke highly of the NHS and said that they had been treated quickly, efficiently and kindly. (See also 'Nursing care'). A few people complained of lack of resources for lung cancer, a shortage of thoracic surgeons, dirty wards, or long waiting times for treatment.
Explains why waiting for treatment was so distressing.
Explains why waiting for treatment was so distressing.
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So now you're still waiting now?
I'm still waiting. I'm not a happy person. Psychologically you prepare yourself for four weeks wait. You are very conscious of the fact that this damn thing is growing on my lung and it's getting four weeks head start on any treatment, and when at the end of four weeks nothing happens it starts bringing all sorts of unpleasant memories back again. And I spoke to my GP, said, "What can I do?" rather naively because I don't think there's anything I can do and he said, "Well I'll see what I can do," that was last Friday. He's a good bloke, if he can help he will do. I realise my cancer is no more or less important than the next person, I feel that if I was going to wait six or seven weeks perhaps it would have been better had I been told rather than told four and it's now getting towards six.
She has been treated quickly and kindly and found her oncologist marvellous.
She has been treated quickly and kindly and found her oncologist marvellous.
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After all this, I wouldn't have a bad word to say about them. I've been treated so quickly, so kindly, I would not have them criticised at all in front of me. They've been absolutely marvellous, absolutely marvellous. With the resources that they've got they're wonderful, absolutely wonderful.
And communication between doctors and patients; has that been good?
It has been so far, so far yes it has, yeah. Dr, my oncologist he is, he's absolutely fantastic, I've never known a doctor like him. He, he does have a clinic but he would rather come and see you whilst you're having your treatment than to drag you back to the hospital, for an appointment. He is, he's marvellous, he is absolutely marvellous.
His GP has been supportive, the nurses caring and kind, and he found communication with doctors...
His GP has been supportive, the nurses caring and kind, and he found communication with doctors...
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Right
And with one exception you know, they've, they've been very good. You know, they've been very engaging and been, been willing to be engaged and they've, they've invited questions. So aside from the fact that there was, there were delays at the beginning about my getting treatment, simply to establish what was wrong,
Hmm
And I, and I, I actually don't expect doctors and nurses to know everything, I know some people do but I don't because they're human beings, but once the treatment had got started it's been very good indeed.
Some people had reservations about part of their care. For example, a man who several times had cryosurgery as a day patient disliked having post-operative care on the ward where others were having major heart surgery. He felt that the nurses rather ignored him because the other patients needed so much attention.
Coping with a disease such as lung cancer can be difficult and distressing. Difficulties in communicating with health professionals can compound people's problems but many people described excellent communication and said they could not fault their doctors in any way. (See also 'Finding information on lung cancer').
Says doctors have a hard job telling people they are going to die and that the doctors and nurses...
Says doctors have a hard job telling people they are going to die and that the doctors and nurses...
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Excellent, they were excellent, all the way through. I'm personally happy with the whole system, since day one, I cannot I can't fault them, may be. They've got a horrendous job to do, I don't know what these people, what makes these people want to be doctors, especially dealing with people like myself. 'Sorry make you croak and that', I mean how do you tell people that? I think you've got to be a certain type of person. But they are just generally very, very nice, kind, understanding, helpful, I cannot fault them. May be we're lucky down here but I don't know. But from my GP down to the nurses in his surgery, to the nurses at the hospital, and the consultants I can't knock them, I cannot knock them.
His doctor communicated extremely well.
His doctor communicated extremely well.
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Communication was quite good. The doctor that came and seen me on a regular basis, he was a Chinese man and he was lovely, his attitude was superb. He, it's very hard to explain how good he was, he didn't leave anything to chance, he explained everything to you and he would reiterate that anything, any question that I wanted to ask to ask him and he even said at one stage, 'If you write them down because sometimes you don't, or get your wife to ask me, because sometimes you don't always remember what you want to ask'. So he was good and he also, as I said before, the worst part was bringing this spittle up and he was underlining the fact that this was so important to me, getting well and he would say like "Spit for England," and things like that. And I laughed at that stage, and said "Well definitely not for England," and my wife explained to him that I was Irish. So he was humorous as well, he was very good in communicating; I thought that he was a lovely man. So as far as communicating with the doctor was concerned that was very easy, he was very easy to approach.
Others, however, would have liked more information and said that lack of understanding and dissatisfaction was partly caused by the doctors' language, jargon and medical terminology. One man thought that his surgeon was unrealistically positive about his recovery.
The consultant communicated poorly and talked in jargon.
The consultant communicated poorly and talked in jargon.
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He would like to know why the operation caused his breathing problems but he doesn't understand...
He would like to know why the operation caused his breathing problems but he doesn't understand...
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Have you tried asking?
I have yes, yes I have asked. I've told the lung cancer nurse actually that that's one of the things we want at the meeting, our support group, and the other people have said the same we want somebody to come with a model, a diagram, or something, or and say, "We've taken that bit of lung away and we've cut that pipe and we've," I'm not morbid, I don't want to know, I wouldn't like to see the operation but I would like to know what they've done to cause the breathing problems, you know. You expect them to take the lung away and not cause you a breathing problem but obviously it does and nobody has really explained that to you. And the same with this cancer now, nobody has shown me a diagram and said that's where your cancer is, they've never actually said that to me.
Right so you'd like a bit more information?
Definitely I'd like a lot more information on that side of it.
Did you ever try asking the doctor, the consultant?
I have, yes I have asked, but whether he's told me in his language and I haven't understood because I'm a bit thick that way inclined I suppose. Perhaps he's told me in his language that I haven't understood but I haven't understood what he's told me, if he has told me I haven't understood it.
He thinks the surgeons were unrealistic about his recovery.
He thinks the surgeons were unrealistic about his recovery.
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A lot, yes.
What sort of things?
Well I've never been told, as I've said to you before you said, you asked me earlier about what part of your lung I'd had took away, and I've never really been told any details of that operation, I was just told that I'd had the top third of my lung took away and it came away cleanly. But they didn't say, I was never told how it would affect my breathing, nobody, they said to me that, the surgeon said when I first discussed the operation he says, "You'll be back to cleaning your car and doing everything you did do within six weeks," which I wasn't and I still am not now. The breathing side has never, ever, gone back to how it was before I had my operation because I've never been, all the time I've had cancer I've never actually been ill with cancer if you can understand what I mean.
Communication sometimes appeared to break down completely. For example, one man said that he stormed out of the doctor's office when the doctor seemed to contradict the diagnosis he had been given. He also said that he thought that the doctor was too pessimistic about his condition. On reflection he wondered if communication had broken down partly because the doctor had used technical terms that he did not understand.
At one point doctor-patient communication broke down completely because of misunderstanding and...
At one point doctor-patient communication broke down completely because of misunderstanding and...
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Um' Not too bad actually. I had one problem with one doctor initially before I had my op and I stormed, I stormed out of his office. I mean my son and my daughter could not believe what I'd done. My son said to me, "You can't do that," I said, "Well I've done it," I said, "I just wasn't prepared to talk to him." Because he'd given me what I thought was a totally different diagnosis to what the original specialist had given me. But I think he was just talking a little bit more technical than what I understood. I did meet him again at the hospital later on and he did explain to me that we'd sort of got off on the wrong foot and we sorted all you know our differences out.
Were you upset because you felt he was speaking a language you didn't understand?
No I think it was because he was, originally he was telling me there was more wrong than what, I felt he was telling me there was more wrong than what there really was. And it was like, it was like he'd just hit me on the head with a sledge hammer and I just blew my top. And that's how it affects you to start with you get very; like your emotions are all over the place and you can lose your temper very quickly.
Yeah he just started talking to me a little bit too technical I think and it was words that I just did not understand, words I'd never even heard of before. And this is one of the problems. I think they need to be very, doctors and consultants need to be very basic with the patients. I mean we're not doctors, we don't know do we, we only know how we feel. So if they can explain it in more layman's terms the better it is.
One woman noted that patients often say they want to know everything about their illness, but are not comfortable with 'uncertainty'. She said that doctors should not patronise their patients and that most people can understand statistics if they are explained. However, it's hard for doctors because people want to hear the good news and not the bad news.
A man, who after surgery found it hard to speak (because nerves had been damaged), recalled a day in hospital when a registrar asked him how he felt but hurried on without waiting for the reply.
A woman remembered the day she had her MRI scan. She had been terrified when the doctors spoke to each other about her scans without explaining to her what they were saying. Listening to them she thought her cancer had spread all over her body.
One man considered that most of his treatment had been good but had found it difficult to get a 'foreign' nurse to understand that he had run out of morphine for his self-administered pump.
He had difficulty in communicating with a 'foreign' nurse when he needed more morphine for his pain.
He had difficulty in communicating with a 'foreign' nurse when he needed more morphine for his pain.
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A few people praised the care they had received in hospital, but thought that aftercare was lacking. One man said that after he had been discharged from hospital he felt a little isolated. However, others described excellent aftercare, and recalled the wonderful support they received from nurses and from others once they arrived home (see 'Nursing care' and 'Support').
She found the clinical care marvellous but did not receive enough support after her operation.
She found the clinical care marvellous but did not receive enough support after her operation.
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The National Health Service I think has been absolutely brilliant, I can't fault them before or during my operation, I thought they were absolutely marvellous, but after the operation I think they're sadly lacking. I don't think there's enough care given to people afterwards. They've done, as far as, it's just the way their attitude is, we've diagnosed the problem, we're removing the problem, now get on with your life and that's, that's not right, you should get support afterwards. That area they're sadly lacking in I think.
He received plenty of information until he left hospital but now feels a bit isolated.
He received plenty of information until he left hospital but now feels a bit isolated.
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Last reviewed May 2016.
Last updated May 2012.
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