Interview LC15

Age at interview: 56

Age at diagnosis: 42

Brief Outline: Diagnosed with non-small cell lung cancer in 1989, followed by lobectomy (removal of lobe of left lung).

Background: Joiner (retired), married, 3 children.

The first sign that anything was wrong was when he coughed up a load of thick blood.

OK, well for me it started in January 1989, the day after New Year's Day. What happened, I'd had a heavy cold all over the holiday and I got up in the morning and the next thing I felt something come into me throat, me mouth and went to the sink and I spit out a load of blood. To me it wasn't blood it was liver, you know it was that thick.     

So, you know at that time we were undecided what to do, I thought it was, it was from me nose or something like that you know. And with it being the holiday period we thought I'd go to the pharmacist and get some advice or something.

And I don't know what made me do it but I insisted that I go to hospital. And I went down to the local hospital. Anyway they done some tests on me then because I'd presented, I forget what they call it like coughing blood up, x-rayed and they couldn't find anything and the blood had stopped coming. But they decided then that because of the way I presented they would ask me to come in the following Wednesday to do some tests. And it was quite a shock to me you know, I'd never been in hospital before.

He is sure that lung cancer patients are stigmatised because of smoking.

Yeah me feelings on it, I said, talking about, I think cancer does have a stigma attached to it. I know in my own instance, with lung cancer, I think all lung cancer patients are stigmatised because of smoking. Attitudes from other people who are non-smokers as I was, mine was, I was told mine was through passive smoking.

When I went to the, to see an oncologist for further treatments because I'd had an operation and I'd had half of my left lung removed, I asked them what he thought what caused it and he just laughed and said 'That's obvious, through smoking.' And me wife who was with me at the time, and we've been together since we were 14 and she just said 'Well he's never smoked'.

So right away what I was, annoyed me as well as that, on my, my medical records I'm classed as a smoker and every time I ever went for review after that they would ask me 'Are you still smoking?' because that's down there. And no matter how I told them, I'd say 'Look I don't want that on there, I never smoked.' but its only my word that can go against that, that says that.

Thinks that although patients get more information now than in the past there is still not enough...

And when I went... for the surgery I remember there was a guy in the hospital, in the bed next to me, and he asked me what I was in for and I told him I had lung cancer and he just, he was in there for something else, but he just quite casually said 'Oh I had that twenty-two years ago.'  Now, and I'll say this to anyone, that sort of inspiration, that moment, that determined the fact that I'm speaking here now for me, it really did, I just went, 'Wow, well I will be that man.' And I did, and I remember him saying to me, 'Anything you want to talk about ask me', and I asked him all kinds. And, but that's where I got my information from, I never got it from the hospital, they gave me nothing at all. I got my information off this guy.

So things haven't improved?

Things haven't improved at all. I mean ... there are plenty of stories like that. They [patients] are given more information now, you know sort of leaflets etc, but you find basically nothing's really changed at all.  It's just a lack of information, that patients need.

Do you find some of the people you know use the Internet for information?

No, I don't, I don't really because I, the majority of the patients are well into middle-age as I see, and computers and stuff like that is a thing just, they're not gonna touch. Maybe, I do know quite a few of them get their children to have a look for them, but they don't, no.

Describes the pain, worry, breathing difficulties and numbness around the scar that he...

Did you have any side effects of the operation?

Side effects of the operation for me, probably more worry than anything.  But I had a lot of pain in me left side where I had the operation, where they cut in, you know they, it was all stapled up and a lot of numbness there. And that went on for about I would say well over twelve months maybe even a bit longer. Although I know doctors will say it may last six months but no an easy twelve months for me.

Where was the incision, the back or the front?

The incision was in the back, it was right from me shoulder blade right down, you know with the, its supposed to be about twelve inches but I'd say its about eighteen inches on me. And I'm aware that there's some different formation on that side of me body where they must have had to move ribs about you know. And I got a lot of pain there for a long time, couldn't sleep on that side.

Does that still bother you now?

It still bothers me yeah, because I find if I'm laying on me right side, there's one side where it affects me breathing, its like I'm cutting the oxygen off so you know.

Do you have to take any medication for that?

No, no painkillers maybe, but I don't take nothing really. I do occasionally have to go and get an inhaler, because I find, I'm OK, me breathing's fine, perfect really but sometimes if I do something sudden it leaves me gasping and a bit panicky at times you know.

The consultant communicated poorly and talked in jargon.

Also, I was trying to get some information from them, which I was desperate for, I kept asking questions all the time. But the hospital to me, you were like the proverbial piece of meat, what knowledge they had they were keeping and you didn't need to know. And they'd come round your bed and the consultant would be talking in this jargon, which was all alien to me and then they'd just turn to you and say 'This is what we're going to do,' you know. And you got to know nothing at all, and you had no say in whatever went on, they decided that you know.

Asserts that all lung cancer patients are stigmatized, whether or not they smoke.

Yeah me feelings on it, I said, talking about, I think cancer does have a stigma attached to it. I know in my own instance, with lung cancer, I think all lung cancer patients are stigmatised because of smoking. Attitudes from other people who are non-smokers as I was, mine was, I was told mine was through passive smoking. When I went to the, to see an oncologist for further treatments because I'd had an operation and I'd had half of my left lung removed, I asked them what he thought what caused it and he just laughed and said 'That's obvious, through smoking.' And me wife who was with me at the time, and we've been together since we were 14 and she just said 'Well, he's never smoked'.

So right away what I was, annoyed me as well as that, on my, my medical records I'm classed as a smoker and every time I ever went for review after that they would ask me 'Are you still smoking?' because that's down there. And no matter how I told them, I'd say 'Look I don't want that on there, I never smoked,' its only my word that can go against that, that says that. 

Explains that he feels ashamed that he has cancer.

Actually the thing that I felt was shame. I mean people would say guilt, but I think there is a fine line between guilt and shame.

You felt shame?

Shame, for me I was ashamed that I had cancer, that I presumed I had cancer yeah.  Anyway....

But why did you feel it was something shameful?

Because I was a man, because I, as a young man I'd boxed, I'd run marathons, I'd played rugby, at the time I was taken ill I was in an advanced swimming club and I just felt, I was at that time I was in work, you know I was the provider and I just felt ashamed that this disease had come and, come to me. I found that very hard to cope with; even now after all this time.  Anyway...

Sorry at the time you were taken ill you were, did you say a provider did you say?

Yeah I was the provider, I was the one working you know providing for me kids and wife you know. And I suppose it was that really but yeah shame, yeah.

Yeah obviously laying awake of a night together you know not, quizzing one another 'do you know?' and again it was, I was just ashamed of, of having cancer, I really was you know. Still am!

You still are?

Yeah. I suppose I just, you know really wish it would go away forever although I've been discharged and that you know. Uh, its, it's a stigma isn't it you know.

You still think there's stigma even today?

Oh yeah. I don't think you, from the moment you have cancer you're a cancer survivor and that stays with you right till, the rest of your life really. You know I'm not a victim because I'm here.

What's made you feel that?

As I say I think it's because I feel I should have been tougher than that you know. I shouldn't, I shouldn't have got cancer you know. Like I said it might have been something I'd done, maybe me life style, you know something I'd done wrong, I don't know or something I'd tried to do right because I kept myself fit.

And you're not a smoker?

No and I never smoked, no. On the contrary really so I don't know you know.       

Has anybody ever made you feel that by saying anything?

No. I, when, my own interpretation of people with cancer, long before I had it, if somebody said they had cancer I would look at them with sympathy and you know 'Oh you poor soul' you know, maybe that made me, suddenly I was in that position, they were looking at me. I, I was always aware of that when it first got about that I had cancer, I called it the 'leper syndrome' in as much that people are looking at you in as much that people are looking at you, they're aware you, you do see them and they are talking about you 'that you've got cancer and everything you know,' even though you, they don't know your diagnosis and your prognosis you know.

So you think that's still the same today?

Yeah it definitely is the same today. I'm, I can be, I'm aware of myself doing it in some ways when I know someone has cancer, its very difficult how do you cope with somebody else's illness you know, when its maybe a terminal illness especially.

Breathing exercises, relaxation and yoga helped him with breathing difficulties.

I do occasionally have to go and get an inhaler because I find, I'm OK, me breathing's fine, perfect really, but sometimes if I do something sudden it leaves me gasping and a bit panicky at times you know.

Have you got any recommendations for people to help with their breathing?

Yeah, again funny when I, as soon as I was, when I was diagnosed, and after I came out of hospital, I'd done everything I could I thought to try and help myself. I did watch me diet somewhat and I joined a yoga club, like two months afterwards.  Anyway, I started doing light exercises and plenty of breathing and relaxing, I was trying to get me head together. I also had gone out walking all the time, walked around the park first a little bit and then a bit further like that and then eventually I joined a rambling club which I was able to do, I struggled with that but I kept that up and I've still done that now, and I've climbed mountain after mountain since.

That's good. Are there any particular breathing exercises you do?

I do the alternate nostril breathing, I used to do that all the time and, and then laying in what's called the 'corpse position'.

The what position?

Corpse position, where you lay on the floor and do breathing from the diaphragm. Breathing exercises, you can get them in books from the library, there's even pamphlets out, Roy Castle gave out leaflets on that, on breathing exercises.