You wanted to add something?

Yes, when I initially got back to the hospital and had been diagnosed; you normally go and hand your appointment card in and they tell you to put it on a desk top and then you go and sit down and then the nurses when they pick them up they actually call peoples names out, “Mr Jones can you come,” or, “Mr Smith can you come,” but when it came to mine they actually came across and gently whispered “Can you come with us.” And you know straight away that there is something wrong and you’re not being treated the same as everybody else. Although they think they’re being so nice it’s quite upsetting to find that they are being like that and you’re not being treated normally.

Right.

And you know, a big lump comes in your throat and that’s quite different. That was actually brought up at the support group and it’s happened to quite a number of people.

That’s interesting.

Yeah

So at that stage you’d rather just be treated like everybody else?

That’s right, yes just treated, yes just call your name out and go in, in the normal fashion.

My initial appointment at the hospital was October 2nd, the year 2000 and I was seventy at that time. After the ten days the appointment came and the whole family, well both my sons and myself, turned up to see the doctor. He told me at that time that I’d got, I’ve lost the word now.

A tumour?

That I had a tumour in my left lung and I asked, ‘Was it malignant?’, and he said, “Yes I’m sorry it is. We can’t operate because it’s very near a main artery but we can shrink it and weve already planned a course of treatment for you,” which I thought was very good. He said, “When you leave my office therell be a young lady waiting to meet you and shell explain anything you want to know,” and that’s when I met my cancer nurse and shes an angel; She made me a cup of tea and she told me that I’d got non-small cell cancer which I think is the best sort to have. She explained that I would have a course of radiotherapy which hopefully would shrink the cancer and that I had to go to our local hospital, not the same one, the one on the outskirts of town;

Yes. When they told me that I’d got lung cancer, we were taken into a little room with a lovely little nurse. She is the Cancer Nurse, and she doesn’t wear a uniform, shes quite informal, and she said, ‘Would you like some coffee?’ and we had coffee, and we sat and talked. And she talked to us about everything that was offered, and was we alright etc, and she said, ‘You can phone me anytime, day or night, I’m always available. I; I’m not, I’ve got a pager. She said, ‘So don’t be afraid. And all so kind, these people, you know. They’ve got to be special people to do the job. You know.

Right when I found out I was going have the chemo there was, well when I got the results of knowing I was going have chemo, there was a lung cancer specialist nurse there with me. And then she took me down to the ward, to the chemo nurses and I think I must have been in a good two hours and they talked me through everything, you know even chatted to me about my family and the children like you know. And they were so compassionate, they were really wonderful. And, that made it a lot easier knowing that I’d got to go there on the Friday because this was the Tuesday. They told me what, what drug I was having, the two different drugs and how it worked and they just went through everything, really nice girls, really nice.

In fact my first experience of Macmillan was when I was at one hospital having tests before I started my treatment and as I say I think you go into shock, you know you don’t believe it’s happening to you. And I can remember walking down the corridor and I thought you know this isn’t real, I shouldn’t be here, I should be at work. And I just leant over a balcony and I started crying and this lady came up to me and put her arms round me and started talking and comforting me and she was my first meeting with a Macmillan nurse.

And she was really wonderful you know, I’ve only met her once since and that was at a, a speech that I had to do for Macmillan and she happened to be there and it was her birthday, it was five years afterwards and it was really wonderful seeing her again. But those are the people that you need around you, you know when you’re going through something like this, they’re absolutely brilliant yeah they can’t do enough for you.

Oh the nursing care was second to none. This was epitomised by one particular incident where I was at a very low ebb in the middle of the night, I was coughing and it was to the point where there was tears coming out of my eyes and I just couldn’t breathe and I was very, very distressed. Now there was a nurse there and she was rubbing my brow and so much so that I had the feeling that it was my mother looking after me, it’s a strange thing that crop into your mind. But she was like that, she was, I said to my wife several times since I’ve come out that that’s not the type of thing you can teach somebody that’s the type of thing that you either have or you haven’t got and yes it epitomised the type of nursing that I received.

The nursing care was excellent – very attentive nurses, and each one of us had, was assigned a particular one. And certainly they were, they were very good – I couldn’t fault the attitude or the attendance of the nurses. But um.

Do you think it worked, having a particular nurse assigned to you?

Yes, I think you just get’ theres a feel good factor about feeling that someones responsible for you rather than; half a dozen nurses any of which could be responsible. So I did like that, yes. It didn’t mean that if; if I couldn’t see her I, I couldn’t ask someone else to get me something;

Yeah I think theres, what is actually described in terms of the administration as to how nursing is done and how nursing is practically done seems to differ somewhat. There is this thing called a ‘named nurse, this is an example I guess, they make huge, they put a huge focus on the fact that when you go into hospital you have a ‘named nurse. That doesn’t actually work, I mean it’s very good in principle and you can see where that concept came from and it certainly didn’t come from the ward. It’s obviously a management thing or it certainly appears to be, because on the ward your ‘named nurse is whoever is actually on duty and they change staff so quickly that there is no such person as a ‘named nurse because they’re all nurses and they’re all there and they’re all treating you or they’re all dealing with you although obviously they are given certain areas to work in they’re still changing on a daily basis. So it felt a little bit to me as if they were trying to introduce some kind of system from the management point of view, this was being foisted onto the nurses but the nurses weren’t actually picking it up, and using it, and I think that’s what I mean by a two tier system. What management were asking is one thing, what nurses were actually doing is another. I don’t think theres any lack of treatment by the nurses, I think the way they deliver it is different to the way that it’s perceived in the administration.

Did you feel there was a problem of continuity?

Oh yeah definitely yeah. I think they’re very under-resourced, very under-funded.

Again, what was the nursing care like during that time?

I think I’d have liked a little more attention. I don’t think’ I think it was after the operation I realised that they have a lot to do, and not enough time to do all, and really not enough time to look after patients. So for a lot of the time you’re on your own, reading, or listening to the radio or whatever. But you are left alone, and it becomes scary, because you don’t. I suppose everyone you can’t get used to that sort of thing, I can’t imagine you’d get used to it. So, it’s scary because it’s serious stuff, and it’s ‘ to, to the nursing community it’s everyday, but to the patient it’s not. And it certainly wasn’t to me, this was all, obviously the family came to visit me, I did have lots of visitors and I felt very’ because I was’ how far from home about fifteen miles from home, and yet’ My wife came in every day and some, sometimes twice a day, and I kept sort of wanting to make it easier on her and say, ‘No don’t come and see me so often’, but really I wanted to see her, so’

Would you have liked the nurses to have had more time to sit down and talk;

Yeah, yeah. I’m sure, I certainly would. I felt that I didn’t want to bother them because that’s my attitude, my attitude to life anyway, so I didn’t want to make their job any more difficult, but at times I had to ask for things, but I wouldn’t ask until it had already got (laughs) it had already got to me a bit. So, you know, yeah, I would have liked more TLC [tender, loving care].

I think my first conclusion about the National Health Service, that not enough money goes in at the sharp end, I think most people would agree with me there. I think it’s the nurses that need the support. I think there is far too much red tape, far too many managers. Get rid of half the managers and increase the number of nurses and you would solve the problems of the National Health in one go. I think that the nurses that are at the sharp end do an incredible job, and they care about what they do, they really do.

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.

Could you say a little bit about where you’ve gone for help when you’ve needed it?

Well the nurse come out, when I said I was having a problem getting in and out of the shower because weve got a shower over the bath so you have to step into the bath and being as I was getting a bit weak and wobbly you know, she had it measured up for a grip rail, well a grab rail they call it, so you can grab hold if you’re feeling a bit sort of funny in the shower or anything, and a seat that clips onto the bath, that you can sit on to have a shower in, you know. Because we never used the bath since we had the shower, so she did get one organised, and we didn’t have to pay for that which was good you know.

Did you get support from other people when you got home?

No.

There was a nurse, you said a nurse called?

Well the nurse came but she was very nice but I didn’t want her.

Didn’t you?

No, no I told her nicely, you know she came and she said, as I told you she said shed be coming for a few weeks to see me, you know see how I was going on. And so I said, “Well why are you coming?” she said, “Because you’ve had cancer.” I said “Yes but I’ve had cancer, but I haven’t got cancer now,” so I said “Do you mind if you don’t come because I want to forget I’ve had cancer?”

Yes I can understand that.

And that was how I felt, I wasn’t, I wasn’t being, you know I wasn’t being discourteous to her at all but that’s just the way I wanted it to be, I’d had cancer, the cancer had gone and that’s the way I wanted it, I wanted it just to go and that was that. And that’s the way I’ve looked at it ever since.