Interview LC07

Age at interview: 57

Age at diagnosis: 56

Brief Outline: Diagnosed with non-small cell lung cancer May 2002, followed by chemotherapy June-September 2002, and by radiotherapy from outside the chest to the lung October 2002.

Background: Offshore Medic (retired), married, 2 children.

His initial symptoms included a persistent cough and blood in the sputum.

I kept on going back to the doctor for treatment for this cough and I thought nothing about it but this cough was getting worse and worse and worse. I never really thought much about it because it was basically a cough and I wasn't getting, bringing anything up with it, it was a very, very dry cough in fact. So in March of this year I was working offshore and one of the guys said to me, "You're going to have to go and see the doctor, see the doctor about that again." And I thought okay. Because being an offshore medic you tend to be one of the worst for going to your doctor's, it's one of those things. It's like asking a doctor to go and see a doctor, it never happens.  

So anyway eventually in May I was offshore and I woke up one morning, washed, shaved, cleaned my teeth, cleaning my teeth, spat in the sink as you do when you're cleaning your teeth, blood. My gums don't bleed, blood, strange mm. So swilled my mouth out, coughed again and sure enough again more blood. This went on for the fortnight I was offshore so on the Monday previous to me coming home I phoned up my GP and asked for an appointment and that was the 5th, 16th of May. As soon as I went in there and asked what was wrong, I said "I'm spitting up blood," he said "We're going to have to get you an appointment for an x-ray." The next day I went for my x-ray, the x-ray came back on the following Monday and I was told then that I had a shadow on my left lung.

Thinks his lung cancer was caused by smoking and other factors such as diesel fumes.

I started smoking when I was 12 years old, back in the 60s, in fact back in the 50s, God am I that old, back in the 50s. It was just one of those things in those days, everybody did it. Like nowadays everybody doesn't do it, which is a darn good thing. And I walk along here seeing the kids around here who are all smoking and I thought you bloody fools, if only you knew. But trying to talk to them is like talking to a brick wall, they just don't want to know.

Did you smoke till quite recently?

I smoked up until let's see now, I think smoked up until three years ago when I actually went, I actually stopped, I went on Nicotinell patches and actually stopped smoking for a year and a half. And then I started smoking, but I was only, I was smoking roll-ups, I wasn't smoking normal cigarettes I was smoking roll-ups. But I must admit, and I shouldn't do it, I still have the occasional one now, it's only the occasional one though. I shouldn't do it but after 40 odd years it's a hard habit to break even though you've got all the tablets and all the wonderful things in the world to stop you from doing it.   

But that's what they reckoned caused it was smoking. But it could've been anything basically. I used to work you know with asbestos but I know it's not that because they would've picked that up on the bronchoscopy, they would've picked it up on that. I was in the Army so you know fumes, diesel, gasoline, the whole business, the whole schmuck all the way through, it could've been anything there that done that, something just triggered it. But they reckoned I'd had it for about nine years, but this was, this was just the, this was the top end of it, this was it saying enough is enough do something about it or the body do something about it.  

And as I said it was a shortage of breath that May trip. I'd come up those stairs and I thought what is wrong with me? I said "I've never been like this before." Of course I thought I had this viral infection in the throat. Well I put it down to, I put it down a certain amount to smoking, it must be. Smoking, the environment as well, diesel fumes, it's got to be something there.
 

He had plenty of information from doctors and nurses and thought any more information would be 'overload'.

Did you want to look up more information, even though you're medically trained?

No, not really no because the information actually in the Macmillan book is very, very concise. You don't really want to read any more about it because honestly it's a downer. I finished that book and I was crying when I finished it... I said "Oh what the heck did I read that for because it's just put me on a downer and I don't want to be on a downer thank you very much indeed."

A bit pessimistic is it?

Well I personally think so anyway... Well, while I was in the ward there's this guy just been diagnosed, and I knew he'd just been diagnosed because you could see it on his face. His wife was there as well, and his face was just, oh, how can you put it, drawn, literally drawn, he was white, he was drawn.

So you didn't feel tempted to look at the Internet or anything like that?

No not at all, not at all. No, the thing is if I'd have needed any information I could ask the Macmillan Nurses or I could ask the people on the ward, I cannot fault them for that or the doctors even, I cannot fault them for that.

If I wanted anything all I had to do was ask, and you're told that all the way through your treatment, "If you want anything you phone us up," they give you all the telephone numbers, you've got the Macmillan telephone, Macmillan nurse telephone numbers, you've got the ward, there's two wards, one which works Monday to Friday and the other one works all the time.  The one I normally went to was the one that works Monday to Friday. You got those numbers, you've got social security numbers, you've got all the telephone numbers. So you've got all that information, there's so much information that to try and get any more would be overload, seriously it would be overload.
 

Recalls that the radiotherapy machine was very noisy and that his arms and shoulders were very uncomfortable.

Then this machine comes across and it's about I'd say about three foot across, it doesn't look like anything in particular, it just looks like, you look inside it and it looks like, it looks like a camera shutter. Have you ever looked at a camera shutter, inside the actual bit behind the lens, you know how it's all corrugated well it's exactly the same as that. Because that's what it is, it's basically a camera and it's all got these things. But the thing is the inside actually moves so it can change the angle and change the aperture as well so it's basically a massive great camera.  

So you're lying there and you hear those clunks and bloomin' bangs and crunches and you're thinking what the heck is all this noise? But it's nothing to worry about, it's the way, when you think about it you need a lot of electricity to get the machines working, or to work these machines because it's using x-rays so they need a lot of power. So the reason it's making all the clunking and grinding and not to worry about it is because the, if anybody knows anything about electricity the maker breaker, when it makes it clunks and when it breaks it clunks, but the thing is it's the two in between the actual noise of doing that which is the most disturbing. But once it's described to you why it's happening because being a nosy person I actually asked, I asked you know because what happens is you're put under there you get a clunk then an, excuse my noises a "weeee" then it'll stop, then this noise, this clunking noise will happen again and it'll start up and all your hear then is "beep beep beep beep." Now you automatically do it, everybody does it and if you don't do it there's something wrong with you, you actually count the beeps.  

So it comes up to the side and it starts again and you count these, you just count them because you know when your treatment is finished because once your treatment is finished you can get your arms down. Because one thing, you get an involuntary twitch in the muscles of the shoulder you can't do anything about but once you've got your arms down it's okay but your arm is stuck up there for what ten minutes and it can be very, very uncomfortable. Well especially if you've got a stiff shoulder or something like that anyway. But I was okay but it was still nice to get my arms down.
 

Describes some of the side effects of radiotherapy to his chest.

Did you have any side effects from the radiotherapy?

Yes I did, I had more side effects from the radiotherapy than I actually had from chemotherapy. Radiotherapy, what happens, what happens is it burns the oesophagus. Now the oesophagus is a tube that's from your throat down to your stomach, it's where your food goes down, and what happens with the radiography it burns it, so you can't eat anything solid. You try and eat something solid or eat something, or drink something hot, or even try and drink a pint of beer which is cold, and it's agony, absolute agony. It's like the only way I can describe it, if you'd have put a crab in your throat or in your oesophagus, put a crab in there and let it walk down using its nippers going down.

Does that depend a little bit on where the radiotherapy had been directed?

No if it's chest, if it's chest you'll always get it, it's one of those things for chest radiography.

And how long did that feeling go on for?

I had that for the first, second, well four weeks and then thank goodness finished the radiography and it was a week after they finished the radiography that it started getting better. Now it's okay now, this has been a fortnight now since I finished radiography so it's better now, I'm back, basically nearly back to normal again.

Did the skin get sore at all?

Yes I've got a massive great, well it's my own fault because I was told not to scratch it because what happens is the, it tends to make your skin red when you think you're getting radiography into your skin, into your flesh. When you have a shower it turns red, where it was going in, so it was going in there, there and then the back. The worst one is the back because what I did was actually, and I was told not to do it, I did it, I did it accidentally I didn't mean to do it, I had a scab on my back, well not a scab it was a little spot but what it was if I describe radiography or xray, xrays or radiography burn from the inside out so there could be a hole underneath but on the outside a little, minute pinprick. So what you're doing basically if you scratch your back or your front even where it is you're taking that little cap off and it's opening that to infection. So basically you don't do it. And I'll tell you what please, if you have had it done please do not scratch it because it is absolutely maddening. 

Describes some side effects of chemotherapy, including symptoms similar to influenza and loss of taste.

It tends to, the symptoms basically are one of a very, very bad dose of influenza, a very bad dose of influenza and it is horrible. It not only affects, but the thing is not only does it affect you like that it also affects your taste buds. Our taste completely changes. Now I like, I used to like, you notice I say used to like red wine, even, excuse me, even to-date I'm still not drinking red wine like I used to drink red wine. I have to drink white wine which I don't mind but I'd prefer red wine but it still doesn't taste the same. Now that's because of the chemotherapy. Other things; blackcurrant jam which I love; no taste at all.  Now you know how sweet blackcurrant jam is, absolutely no taste.

So it's had a permanent effect on your taste buds?

No, no, no just temporary while you're on the chemo. It's only the wine that's had the longer effect. Now what I think with the wine is, I know it's a silly thing to talk about (laughs) but I think it's the tannin in the wine that does it, in red wine, I think it's the tannin that does it in the red wine and that's what's caused it.  But now my taste is nearly back to normal again.
 

The forms for claiming financial benefits were 'horrendous' and difficult to understand.

Right you were going to say a bit more about benefits?

Yeah SSP you only get SSP which is Statutory Sick Pay for 28 weeks, after that you then have to, you then get a form from the, your pay people, whoever does your salary for you which is called an SSPL which is Statutory Sick Pay Leaving, that's what the L stands for. And that has to go to social security and what happens then is they will then give you this form here which is your claim for Incapacity Benefit, because after 28 weeks you don't get any SSP so you have to claim for that.  

And that's what the doctor has to help you fill in, is it that form?

No, the doctor fills the first one in yes, the doctor fills the first one. These ones, well you'll probably the doctor to help you fill that one in as well but some of the forms are absolutely horrendous. You've got to be, you've got to have a degree in Higher English to be able to understand them because I don't know who makes these forms out but they are not user friendly, to man or beast.