Interview LC27

Age at interview: 66

Age at diagnosis: 64

Brief Outline: Lung cancer diagnosed in 1999. Left lobectomy (lobe of lung removed) in April 2002. Recurrence detected in lymph nodes in 2002, treated with chemotherapy and radiotherapy (died June 2003).

Background: Driver of excavator (retired), married, 4 children.

His loss of voice was a sign that the cancer had recurred.

I developed, started losing my voice periodically, every now and again I lost my voice. And it would come back and then I'd lose it again and it would come back again and then I went to the GP, I thought I'd got a chest infection which I suffered quite a few chest infections and my GP used to give me antibiotics and cleared it up and that was it but I went to the GP and I said "I think I've got a chest infection because I keep losing my voice," and oh yeah he agreed that it was a chest infection, gave me some antibiotics. And I came away, took the antibiotics but this voice thing kept persisting for about a month after, I think it was about a month.  

And we was running some raffles at the hospital for the Roy Castle Foundation, they had a month of raffles and a fundraising month for the Roy Castle Foundation and I went to the hospital one day to run a raffle and when I got there my voice had gone completely. And the lung cancer support nurse saw me while I was there, she was instructing me on what to do with the raffle and she said "How long has your voice been like that?" And I explained to her and she sent me straight down for a chest x-ray there and then. And when it came back she called me into her room and said "It looks as if your cancer has come back again," or "You've got a cancer back again." She said "I'm referring you to the surgeon who did your operation." 

He was very depressed after receiving the diagnosis and he lacked information.

You were talking about your feelings after you had the diagnosis and you had to have the operation.

Yeah the feeling I, the feelings I had really was I think it was just depression. I was very, very depressed, and every time I thought about the cancer I cried. And I cried a lot in the four months before my operation. I couldn't stand people talking to me about it because it upset me that much. Every time somebody spoke about it I started crying, I filled up and I felt like crying all the time. And by the time I came for my operation I was in quite a bad state. And when I went into hospital for my operation there was a Macmillan nurse in the hospital where I had my operation and she came to see me, and that was the first contact I'd had with a Macmillan nurse or with anybody. And she really did help me get through my operation. She talked to me and explained things to me. Up until then nobody had explained to me in any detail of what was going to happen to me, they just said they was going to take part or all of my lung away, they didn't say anything at all about the operation, how the operation would be carried out. And then I had the operation.

Were you given any leaflets or anything like that about it?

I was given one leaflet; no I wasn't given any leaflets until I came out of the hospital. I wasn't even given any leaflets at all beforehand; it was when I came out of the hospital after the operation that I was given some small bits of paper that didn't give you a lot of information at all.

Says that he would have liked to have some information before his operation.

You were talking about your feelings after you had the diagnosis and you had to have the operation.

Yeah the the feelings I had really was I think it was just depression. I was very, very depressed, and every time I thought about the cancer I cried. And I cried a lot in the four months before my operation. I used to, I couldn't stand people talking to me about it because it upset me that much. Every time somebody spoke about it I started crying, I filled up and I felt like crying all the time. And by the time I came for my operation I was in quite a bad state. And when I went into hospital for my operation there was a Macmillan nurse in the hospital where I had my operation and she came to see me. And that was the first contact I'd had with a Macmillan nurse or with anybody. And she really did help me get through my operation. She talked to me and explained things to me. Up until then nobody had explained to me, in any detail, of what was going to happen to me, they just said they was going to take part or all of my lung away, they didn't say anything at all about the operation, how the operation would be carried out. And then I had the operation.

Were you given any leaflets or anything like that about it?

I was given one leaflet; no I wasn't given any leaflets until I came out of the hospital. I wasn't even given any leaflets at all beforehand; it was when I came out of the hospital after the operation that I was given some small bits of paper that didn't give you a lot of information at all.

He would like to know why the operation caused his breathing problems but he doesn't understand...

Well somebody, all I've been told now is that I've got a lymph node which I don't know what, I don't know what a lymph node is. I'm not very good medically. Some people can ask the questions and they understand the doctor's language but I don't understand the doctor's language, I don't even know what a lymph node is, even though I've had one before, I've never been explained exactly what it is.

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.

Are there any questions about lung cancer you still want answered that if there were an expert here?

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.  

He had difficulty in communicating with a 'foreign' nurse when he needed more morphine for his pain.

There was one time when I was in quite severe pain and I asked, I was taking morphine and it's self administered the morphine is, it's probably the second day after the operation, and you're in quite a bit of pain. And it's self administered, and the thing had run out, and I was in quite a of pain, and I was asking, not particularly because it was the foreign nurse but it was a foreign nurse I was asking, and I had quite a job to make them understand that I'd run out of morphine. And it took me a hell of a long time to get this thing refilled with morphine and I was suffering quite a bit of pain after my operation. But there's a lot of aspects of it, I think probably the good side makes up for a lot of the bad side of it, the down side of it. I think you have a lot of good side. As I say more so since I've been involved with the support group I've found the good side of it. 

Comments that he did not get much sympathy from the doctors and nurses after his lobectomy.

And after the operation there was quite a bit of pain obviously after the operation and you just sort of suffered it and you got through it and you took your pain killers and they're not very sympathetic the nurses actually. At the hospital where I was, where I had it done it's an operating hospital so obviously you're not the only one with cancer, you feel as if you're the only one with cancer, but to the nurses and the doctors you're not the only one, they see hundreds of people all day long, and obviously you feel as if you are the only person that's got cancer. I think that's probably what upsets you more than anything. You don't get a lot of sympathy at all.

He values the time that the nurse spends with him at the support group.

What sort of things do you do at the support group?

Mainly talk to each other. We mainly, we meet at the support group, it's just a lot of talking to each other and it's a matter of having this nurse with us. She's a lung cancer nurse and she can talk to us all, she's the sort of nurse that you can go and talk to and she's got time to talk to you, that's what I like. And you know up until I met this nurse none of the other nurses had got time. It seems as if they'd got a set time to talk to you and once that time was up that was it, finished. But she hasn't got a time limit when you talk to her. It's the same with the GP, the GP that I'm under, when we visit our GP I think our time limit is five minutes, and if you want to talk to him about anything extra, we have to book a double appointment, for ten minutes of talking time. And that's our GP that is. And it happens with all the family that does. So really you can't go down and hold a conversation with the GP for any length of time because he's got his limits there like you know.  

Do you want to say a bit more about the support group?

Yes the Lung Cancer Support Group it's, I advise anybody that suffers with lung cancer to join one of these support groups because even we're only, there's only about ten or twelve of us goes to this group but it's the attitude of the other people. And we don't just talk about lung cancer all the time, we have a laugh and a joke. Our families can come with us, in fact they do, my wife comes with me and the other members, their wives and husbands come with them. And occasionally we have the support nurse, she brings a physio with her to advise us on different things or we have somebody come and tell us how to get some extra money off the social if we can (laughs).

Says it is important to join a support group and to talk to others who have had lung cancer.

Have you any message for people who've just been diagnosed with lung cancer?

Whatever you do don't get into the depression. And the main thing is seek out a support group. You've got get in touch with a support group, and think positive about it. Get in touch with other people who've got cancer and talk to them, go and talk to them. Especially if you can get somebody that's in the same frame of mind as yourself, who thinks like you. Sometimes you can talk to a person and they want to keep on about their illness all the time, they want to tell you, how can I explain it, I've met with some people and all they want to do is talk about their illness, but you want somebody to talk about your illness as well. You want to be able to talk [to someone]. 

To listen...

Who wants to listen to you talk to them. And as I say if you are diagnosed with cancer go and get in touch with a support group and try and get in touch with a support group nurse, if you can because if they're half as good as what ours is you'll have no worries at all, she's very, very, good, she's very good.