Interview LC41

Age at interview: 57

Age at diagnosis: 57

Brief Outline: Diagnosed with small cell lung cancer in October 2002, followed by chemotherapy, then radiotherapy to the lung, and radiotherapy to the head to prevent spread to the brain.

Background: Furniture retail manager (retired), married, 1 child.

Describes what it was like to have a brain scan.

No I didn't have a bone scan, I had a head scan.

How did they do that?

Well again it was exactly the same as the CT scan I had. It was instead of being a CT scan for the lungs it was a CT scan for the head. So you just laid on this table and the thing went back into the doughnut, not the tube, so you're not enclosed, light and airy, you just lay there and I looked up and I saw a red light going across like that, and the nurse said "Right when you're ready we'll take the pictures," and I said "Is it alright to keep my eyes open?" she said "Yes, it won't do any harm," and the red light went bum, bum, job done.  No pain, no anything.

Right.

In fact it was more of a nuisance queuing outside to get into the actual you know queuing in the waiting room, that's more of a nuisance because you sit there for half an hour, the actual scan took about a minute or thirty seconds even.

When he first told family members about his diagnosis they were tearful, but now they are calmer.

How has the family and your wider family reacted to all this?

At first they were the ones that were all in tears and I said, "I don't want no tears". Then I was told by one of the nurses "That's out of order Dave, I know the way you feel but you should allow them to cry because that's the way they feel. Let them go over that first bit first and then try and explain how you feel exactly." So I did that and then gradually it's come round to like now my daughter would've cried every day right, if I said, "I'm not going to die," she'd say "Oh don't' use the word die," and start crying you know.

Where as now I say to her "I've booked up my holiday and I couldn't get such and such a date," and she will now say to me "Well stop moaning, thinking yourself you're having a holiday, you're not supposed to be here," because the fear has all gone out of it, and I think the fear has gone out of it because I've kept up my end so much; ignore it, laugh at it, you know that's the way  I've been now that everybody is now seeing things my way.

You know my wife will say, "As far as I can see there's no killing you, you know, whether you want it or not there's no killing you', and my cousin has been up and visited me and brought his son with him you know and his other son couldn't make it but said he'd get up as soon as possible and then I spoke to him and said "Look you know I know what you're saying you want to get here as soon as possible because if anything happens." He said "Yeah." I said "You've known me long enough you trust me, if anything is going to happen I'll phone you, then get here, don't rush your backside off for no reason." So he hasn't done so and I'm very happy about that.  

Some people cross the road to avoid him because they don't know what to say.

And I call this the crossing the road syndrome and the reason I call it that is that people actually who know you and who actually like you, cross the road when they see you because they just don't know what to say. And I get on far better with my old friends from London who phone up and say, I answer the phone, and I say good morning and I say the number and they say things like "Oh great you're not dead yet then we can have a chat," and we both laugh and then we start chatting. And that's what people I think have to realise with cancer is that just because you've got cancer you're not dead, if somebody has a heart attack you don't start talking about the person as if they're dead and gone already. But with cancer very often people do talk about you, they talk about you as if you're not there, you know they say to your wife "Isn't it a shame that he's got it?" and you're sitting there, you say "Excuse me, hello I'm still alive."

Demonstrates how his mask was made for radiotherapy to his head, a painless procedure.

Right the very next day they took me into a room to make a mask for my head. The reason for the making of the mask is quite simple, instead of putting tattoos all over your head and down here and down here they make a mask and then they make the markings they need onto the mask so that there's no tattoos on your head.  So that's quite good for people that don't like tattoos, as you probably see it doesn't worry me (laughs). Nevertheless this is the material that they used to make my mask.  It's, I don't know actually what it is but it's just a plasticky, rubbery stuff, quite solid. And they literally put that into hot water which makes it very, very soft and very pliable and then they allow it just to cool off a little so that it's warm and the heat doesn't affect you and then they put it over your head like so and mould it to your face. But you know like they do on all good programmes here's one we made earlier (laughs), [shows masks]. So I'll just slip this on so that you can get a good look and see what it's like and I'll pull it as tight as it is when they treat me. So that would be it and I can't talk.

How did it feel when you were having it made?

No problem whatsoever. A friend of mine had one made, there are two different types, the other one is very, can be quite horrid, not hurtful or painful or nasty but if you're claustrophobic at all it can be quite terrible. As you can see with this one they leave lots of room, you can breathe through your nose, you can breathe through your mouth if you want to, it's advisable to keep your eyes closed because they're pushing the thing in all round and they're moulding it around all the item so it's advisable to keep your eyes closed which I did.  

It took about; the whole thing took about eight or ten minutes and there was no pain involved, there was no aggravation involved. As I say the worst thing is a fear if you're agoraphobic and I'm not, sorry claustrophobic not agoraphobic, claustrophobic and I'm not I can imagine that you would be fairly nervous of what's going to happen to you but as I said when you get out a nose hole left like that, providing you can just close your eyes and breathe through your nose you feel nothing at all, all you feel is somebody gently touching and they're just moulding this into that and it is literally that simple, it doesn't hurt a bit.  

And then I don't know if you can see here but there's one, two, three holes that they've made a little bit bigger than the rest and what happens with the treatment is that's put on and then my head is inside it of course and that is bolted down to the table because when they're treating the head which is actually the brain, not the head it's the brain, they don't want the x-rays to slip and touch an eye and do damage so that's purely there for the protection of my eyesight and various other bits and bobs that I wouldn't even understand that are attached to the brain. But it's the brain only that gets the treatment and that treatment as I say is to stop the cancer, which is a small cell cancer, and can go anywhere in your body, but it stops it going to the brain because that can be particularly nasty.

Recalls the medication he was given to control his nausea.

And they actually gave me anti sickness pills, eighteen of which I was supposed to take and a nurse said, 'If you can do without some of those try your best to because they're steroids and they're not very good for you.' But she didn't tell me until the second time round so the first time, the first chemo I'd taken them all, the second one I only took half of them and fared very well.  

The next few chemos I only took the odd one now and again and fared very well. The last two chemos on purpose I didn't take a single tablet and that was the only time, I was never sick but I felt nausea and I just said to myself, 'You will not be sick, ignore it, you will not be sick ignore it, you will be not be sick ignore it'. And when I felt nauseous which may have been for three hours a day for about ten days it wasn't too nice a feeling. But that was my own choice, did I want the tablets which were bad for me or did I want the nausea, I chose to have the nausea. And I chose to ignore it in terms of being sick, it wasn't quite so easy, you can't ignore feeling sick, you just feel sick all the time, that was awful. But I chose to have that instead of the tablets.

If he were to need nursing care he would like to have a bed in hospital.

Sad subject death, I know, but one that I don't comprehend.

No, I don't think any of us do. But you did actually consider it a little bit because you were thinking about your wife?

Well I had to because you know it's rather like when I said get my house in order it's no good blindly going on saying I'm not going to die and then leaving everybody in a turmoil and a mess. So what I felt I had to do from a logical point of view was put everything in order so that everything was in order should I die and then put that to one side and say I've done the sensible logical thing now let's get on with living because I'm not going to die anyway. But just to please everybody else I've done the sensible thing. And I think it was, it was to please everybody else is my way of saying it but it was to care for and look after other people as well. To make sure for example that Margaret didn't have to look after me and lift me up and down and watch me fall over and be ill and be sick and all that, I wouldn't wish it upon her, I wouldn't wish it upon myself, I certainly wouldn't wish it upon anybody else. I probably truth known wouldn't have even wished it on the nurses but I did say to the doctor, not in a nasty way, that they had chosen that for a profession, so I was happier with them dealing with it and they had to put up with the anguish, I didn't see why my wife would have to because if she'd have been able to be strong enough to put up with that she maybe would've been a nurse. That's the way I looked at it, whether it was right or wrong.

David Perry reads one of his poems.

Right so you're going to read us your favourite poem; that you wrote?

Yes, I don't know if it's my favourite actually it was the first one I wrote and the reason I wrote it is because as I've said to you before the doctors had said that I might not be here for Christmas and I said I would, and not only that I would but that I was going to get wrecked, I was going to have a really good drink. So this poem is called, 'I'll have a drink at Christmas' and it was obviously written before the Christmas period because I knew what was going to happen to me up to Christmas so here goes'

I have a small cell cancer, I call it 'Canc' for short, 

Oh! By the way at Christmas, I'll have a drop of Port.

The cancer's quite a nasty thing, though I swear I feel just dandy,

And anyhow at Christmas, I'll have a tot or two of Brandy.

The nurses are all working hard, manning Cancer Watch.

Ere I'll tell you what at Christmas I could have a drop of Scotch.

When I go to hospital, they drip the chemo in, 

They'd never guess at Christmas, that I'll have a slug of Gin.

"Excuse me nurse", I'm heard to say, are those tablets mine?

Oh! Never mind at Christmas I'll enjoy a glass of Wine.

I had an off day yesterday, was feeling rather queer, 

But I'll cheer up for Christmas, 'cos then I'll have a Beer.

My friends say I'm a thinker but I think this poem proves,

I'm really just a drinker, thinking out the drinking moves!

The chemo's started working, the Cancer's growth is slow,

Hang on! It's now reversing, well done to that chemo!

It's shrinking down, it's now so small, it's really made me think,

That perhaps this year at Christmas I'll deserve a bloody drink!

You see old 'canc' you've had your chips, your reign is at an end 

And I can see the winning post it's just around the bend!

Your light of life is failing, it's really lost its glow, 

So I'll have me another drink, 'I've beat you, don't you know'.  

Thank you.

Thank you

Explains how the support group can help patients and their partners.

And there are the people that stay away that do, do adequately or fine, and I'm sure there are people that stay away that would do a hell of a lot better if they didn't stay away because there's so much support of all sorts. And the one thing it doesn't do, it's not morbid and it doesn't feel sorry for itself and it's not you know, we're all in this cancer club because we're all dying, you know it's not like that at all, it's a great laugh, we have a raffle, we have a good laugh. We obviously say you know, sorry for the person that's gone and if that person's spouse turns up that time we say sorry to them, if they don't come till the next time we say sorry, if they never come again they don't have to. But it's like this lady's husband he comes now because he knows what it's like to lose somebody, namely his wife, so he then says to somebody else "Well if you do this, that and the other it makes you feel a bit better. And I went away for a few days and that took my mind off it a bit." They tell you all what's best to claim, how is the best way to claim unemployment benefit or incapacity benefit. We have a different person come now each month, it's one day a month for an hour and a half, we have a lady come from the pensions bureau that tells you about pensions or one that tells you the best things to claim, what you can claim according to your age and your sex and all that sort of thing. We have people offering alternative therapies, which for instance a very important thing to know, and I didn't know it, aromatherapy oils, an oil that you stick in the bath and bath in, very, very lovely - oh no not if you're on chemotherapy. You must never use an aromatherapy oil whilst you're on chemotherapy.

Suggests that people write down their feelings and that this will help them feel better.

The other thing I'd like to say to anybody out there who's ever tried to write a poem, or if not a poem just write something down, and I mean this sincerely and very, very seriously, if you feel pain, frustration, anger, jealousy, contempt, fear, all the feelings that you can possibly imagine if you write down how you're feeling, not funnily enough just about a cancer or although this is, but about anything, about a wife that may have run away and left you or about a dear relative that's died or a son that has done something awful to you or whatever, these feelings if you can just write them down on a piece of paper, it doesn't have to be rhyming, it can just be write it down as furiously and as fast as you like. Somebody told me this many years ago and I didn't realise it until I got this cancer, you write things down and it takes the feeling out of you. So if you feel annoyed write down that you're annoyed and why you're annoyed and you could damn well kill her and whatever the case may be and once you've written it read it and then once you've read it two or three times and got it into your head screw it up and throw it away and it just takes it out of you.

That's a useful message.

And I've, to be honest with you I've written about twenty poems about cancer and one or two of them are bordering on semi serious but the most of them are just really taking the mick to be honest.