Interview LC01

Age at interview: 55

Age at diagnosis: 55

Brief Outline:

Diagnosed with non-small cell lung cancer April 2002, followed by chemotherapy, and then lobectomy. In October 2002 metastases in the brain, treated with radiotherapy (died in February 2003).

Background:

Director of undergraduate programmes, divorced, 2 children.

Her first symptom was fatigue, which she put down to overwork.

Yes, you'll know that I have a job as director of an undergraduate scheme in a university. It's quite a demanding job and it's quite a tiring job and I was tired, that was the first symptom that I ultimately had. And I thought it was because it was coming towards the end of term and I was tired because I've got a demanding job. It transpired that it was more than that I think, but that was the first sort of symptom.  

People who work in education are notorious for not going to the doctor until the end of term and then you go at the end of term and you collapse. So what I was expecting was him to say "You're a bit tired you'll feel better you know after the holiday." So I didn't go immediately at the end of the holiday, that's, this is the Easter holiday of 2002 because I thought let's see how things progress.

But you hadn't had a cough had you?

No, no cough, no shortness of breath just tired, immense tiredness. But as I say within the context of all this I come from three sisters, three sisters, we're all tired all the time, it's just a condition (laughs) so I wouldn't want everybody to think that if they feel a bit tired they've automatically got this.  

She describes having radiotherapy to her head after the cancer spread to her brain.

So I went into hospital and everybody who saw me then says that I was quite odd, well I wasn't like myself. So as part of being in there I had a scan of my brain and they discovered that the cancer had actually gone to the brain so I think that explains the odd behaviour and whether or not that's what precipitated the sickness I don't know I just thought, I thought when I was being sick that I'd just got some sick bug. But as a result as I say of being hospitalized for this sickness they said that the cancer had moved to the brain, which is clearly not what I would have liked to hear (laughs) and was actually I found, well I found quite difficult to cope with.  

I had radiotherapy to both sides of the brain at the front and they positioned things very carefully for obvious reasons, they don't want to radiotherapy the wrong bit and a machine is drawn up near your head and it sort of makes a noise. They can hear you so that if you panic in any way, which I didn't feel any need to panic at all, you, they'll stop and they'll come and get you and things. And it's fairly short but I think that would depend on what you've got because they gave me a short burst on one side and a longer burst on the other. Yes I think that's about it.

Was it just on the one occasion you had it?

Two occasions, yes, a week apart. 

Describes the terrible constipation after her lobectomy.

How long were you in hospital?

In the event I was in about, they said I think six to eight days did they and I came out quite quickly, about five days. The major problem I had in all this was constipation, I hadn't realised that constipation was like giving birth, I mean it was so monumentally painful, awful. And I think the morphine, I think morphine is bad for constipation. I didn't use the morphine very much because I wasn't, in terms of pain it was alright it wasn't a problem for me the pain of the operation and so I hardly used the morphine but somehow I got constipated and it was the most awful pain. So anybody attempting this make sure you don't get constipated (laughs). That was by the far worst part of it and I think kept me in hospital longer, I'd have been out of there in a couple of days because I was otherwise fine. The operation was fine it was this damn constipation. People may not want to know that (laughs). So that was that.

Recalls that her veins became hard and uncomfortable during chemotherapy.

I was sick, and more depressed, and there came a point when I was almost phobic about it because my veins all started to go hard and things and it was horrible. However not so horrible that I would have stopped it, you know I was happy, I was going to continue to do it because I felt it was such a dramatic thing that was happening to me it must be doing something. And in fact when I sort of bounced back each time physically and everything everybody was saying "You look fantastic, you look better than you've ever looked', and you know you, and I did I felt, I felt good when I was good in the good bits.

So there were positive things but it was the physical sticking the needles in that got to me in the end and these hard, hard veins. But I wouldn't put anybody off doing it if, I mean I think you just know yourself; some people couldn't continue it. Other people that were there with exactly the same thing it didn't seem to bother them at all, just completely sailed through it. So I think it's, it is to do with your body and yeah it must be that.

Says that radiotherapy to her head made her hair fall out and that treatment made her feel very...

Then what it does, what it [radiotherapy] did do was make the hair fall out as it predicted in the literature. 

You lie down on this couch and a little green light and you come out, you feel no different and you think, 'Has anything happening at all?' So that the fact that it sort of affected hair I was quite pleased about because it made me think, 'Oh well it's doing something at least', and so that was good. I also found it very, very, very tiring and sort of by the two weeks, the week between the two treatments and the week afterwards I was just really exhausted. Again I don't think everybody finds that, for some people its fine, so I wouldn't want again to put people off. But towards the end of the second week after the second treatment I started to feel better.  

Says it is difficult for doctors because people can't deal with 'uncertainty' and want good news...

I think it's very hard because I think most people don't want to know that they [doctors] don't know. 

Doctoring is very hard because actually what they [doctors] need to do is they need to assess the people that they're talking to and some people want to know everything, or think they want to know, that's the problem you don't always want to know. You want to know if it's good and not if it's bad. I don't think it's very comforting for most people to be told, "I'm a doctor, I don't know," is it? I mean I don't mind that, I mean you work that out for yourself when they say it could be days, it could be years [before death], you think well you don't know and they don't, of course they don't because nobody does. 

Try not to sort of patronise I suppose. I mean most people can understand statistics if you explain it to them and can understand that they're part of a distribution of possibilities. Whether, whether people want to be told that if you're, you know well I'm sure they don't, they only want to be told that they're the good ones and not the bad ones. I don't know what the answer is, I really don't.   

Says that it 'shook' her when a 'palliative' care nurse called at her home, but that the nurse...

You say you've got some support from a nurse?

Yes I have a palliative care nurse. That, when I came out of hospital after the sickness, when the cancer had shifted, these people started contacting me, people coming to take blood, to assess blood sugar levels, and palliative care nurses coming to chat to me about you know care in the home and what they can do for me and that sort of thing. That shook me a bit as well the palliative care nurse coming, I mean I know what palliative means and I thought, 'Oh, it means not treating,' just you know. But again I think you can have these people for a long time and I'm intending to (laughs) and so they're there to help you deal with practical matters really, or seem to be.

What sort of practical matters can she help you with?

Well apparently there are allowances you're eligible for, she can talk to your GP on your behalf, she can, what else, well she has, these people that were taking the blood sugar the care in the, the community nurse thing, she can deal with them for you. She can get you a disabled parking permit (laughs); always handy things like that. What else, I have got a list somewhere of things that she can do.

And how often does she come and see you?

Well she, I had an initial appointment and then we re-arranged when we were going to see her again. Oh that's right that's the other thing that is quite useful when you've sort of got an ache or a pain and you just think she'll talk to you about that.  Because you can become a bit sort of is this the cancer or is it actually that I've just got a sore finger so it can be quite useful to say "What do you think this is?"

So do you call her up or does she come and see you?

I save them up my list of sort of aches and pains and moans and groans and she says chemotherapy that's the answer to most things it seems. But I'll tell you what she's supposed to, she told me to say that if anybody says that you need a Macmillan nurse they're the sort of NHS equivalent of a Macmillan nurse if people know what that means. I don't really know what that means but that's what they are. So I think you can use them for all sorts of things and they are on call, so if I wanted to talk about something I could call up and there are about four of them for this area.

She is not afraid of dying and does not expect to suffer any pain.

So what's your whole view of the future now?

It's a funny one because you don't know, it's nothing to do with the cancer in a way it's just to do with knowing that, well knowing but not knowing that you're dying. I mean we're all dying, we all know that and it's this, it's sort of I want to get back to where it's Monday, not Monday I've got cancer I'd better do this because that might happen. And I'm not quite there yet it's sort of at the back of your mind, and probably at the front of your mind actually (laughs), it's just there all the time that you're thinking, no that's too dramatic. In some sense it's hovering round you, not that, "Will I make it to the shops?" or anything like that, I mean I know that isn't how it's going to happen but it's, it's for example Christmas is coming and I've organised what I'm doing for Christmas but there's a bit of you that when you make plans like that there is a bit of you that's thinking, "But what if?" I'm very much not a, 'But what if' person normally so that's quite odd. But I'm not, I'm not, I'm not frightened of dying at all and I think that from what I can understand the manner of going won't be painful because you're, they won't let that happen, they'll make it not painful.

At first she wasn't aware of the excellent support that was available within the hospital.

Yes I think I've had some very, very good support but I was not always aware of all the support that was available. I was given quite a lot of literature about sort of alternative things you could do like aromatherapy, and it was the Richard Dimbleby literature I think, it's very good literature, but the actual support within the oncology unit I sort of wasn't aware of that in the first instance, because I suppose they thought I wasn't a prime candidate for it. But there is lots of support there and I think it's worth looking and it's worth asking and it's worth thinking about, not from the aromatherapy point of view but from the talk to somebody point of view - if that is what would suit you and ring up and have a chat about this, that and the other. There are nurses available and I didn't realise that for some time.

That's good.  Is there a support group that you could go to if you wanted to, a group of other patients?

Of patients, I think there probably is but again I haven't been offered that as sort of verbally, it might be within the literature I think for the hospital, I think there probably is. I personally don't think I would find that very helpful.