Rose - Interview 17

Age at interview: 68

Brief Outline: Rose took part in a trial for people with inoperable lung cancer, comparing radiotherapy alone with radiotherapy plus chemotherapy. She had just radiotherapy. The trial was stopped early because so few people agreed to take part.

Background: Rose is a retired nurse, divorced, with 2 grown-up children. Ethnic background/nationality' White British.

More about me...

Rose found out she had lung cancer when she had a chest infection and started noticing blood in her sputum. The infection would not clear up, and when sputum samples were sent for analysis it was found she had MRSA. Although she was treated for MRSA, there was still blood in her sputum and eventually she was sent for a bronchoscopy, and she was diagnosed with lung cancer.

 

The plan was to operate to remove one lobe of her lung – she did not want more of the lung removed as she already had chronic obstructive pulmonary disease and did not want to restrict her breathing capacity any more than necessary. Because of the position of the tumour it turned out the surgeon could not operate after all. At this point she was invited to join the INCH trial, a trial comparing induction chemotherapy followed by Continuous Hyperfractionated Accelerated Radiotherapy (CHART) with CHART alone.

 

Rose felt that because these were well-established treatments, rather than anything new and experimental, she did not mind entering the trial. She was glad to be randomised to the radiotherapy alone arm, because she was not very keen on the prospect of losing her hair if she had chemotherapy as well, but would have accepted either group. She was surprised that some of the staff thought she would be disappointed not to get chemotherapy. She had twelve days of radiotherapy, with three treatments per day. She had some side effects, especially a sore throat which made eating difficult, but never thought about withdrawing from the trial.

 

As a former nurse, she felt she was in a better position to read and understand the information she was given better than many people, and it was obvious to her that some other people on the ward had not really understood the information given. She felt the staff were good at just explaining the trial and not trying to influence her decision either way. She did not involve any of her family in making the decision, as she believes it has to be a matter for the individual. Rose did sometimes think that because she was a nurse people assumed she did not need explanation when in fact she did. She also wondered if being in the trial meant she tended to see the research nurse rather than the doctor, on occasions when other people not in the trial might have seen a doctor.

 

The trial was closed early because so few people agreed to take part, and Rose’s understanding of why is that most people were unwilling to take the chance of being randomised to the group having chemotherapy. She can understand people refusing to take part in trials where very little is known about the safety and side effects of a new treatment, but cannot understand why people were reluctant to join this trial. As it turns out, her lung cancer has returned and she is likely to end up having chemotherapy anyway. Rose herself would be reluctant to join a trial of a very new treatment unless she was so ill that she had few treatment choices left. She would be thinking it might benefit her granddaughter’s generation, even if she might not benefit herself.

It is important for staff not to try to influence you. If you say yes just because you like the...

When they were presenting the two different treatments to you, did they talk to you about what they thought the benefits and harms of the different treatments were?

 

No. I think this was purely and simply because it was your choice. They couldn’t be seen to be influencing you, I would have thought. They, no, they just literally said what it was about and that two hundred and fifty people would have just radium and that’s, this was because there’s some dispute over some people say you should have radium and chemotherapy, others say, well, they’ve had lots of success with radium. No, they, I think that really it would have been wrong for them to be pushing for any treatment. You know, I think they were very good in that they didn’t really try to influence me in any way.

 

And did they share with you their own uncertainty about which treatment? I mean, did they say to you, “We simply don’t know”?

 

No, nothing. No, no, no.

 

Right.

 

Just purely explained what it was about. As I say, you’ve got a lot of literature to read, about different kinds of cancer and all different treatments. You’ve seen the handbook. But no, the doctor didn’t try - and I think that was right - that they didn’t try to influence you in any way. And you can see where, if the patient didn’t get well, if the doctor had tried to talk them into chemo and radium I mean they, they could have turned round and said to the doctor, couldn’t they, “Well, it was because of you, and I like you so much that you--”. And I think this is good that it’s done at the very beginning, because you don’t get that you’re attached to anybody. You know, any nurse or any - but I think for the cancer specialist nurse that must be quite difficult, because they must be constantly ringing her. And I, you know, I a couple of times rang her. But they must, because they don’t understand.

 

Rose volunteered to ‘give something back'. She knew both treatments were tried and tested, and...

I found the going into hospital for the radium, they did ask me, which I found was funny, was I disappointed that I wasn’t having the chemo as well? I couldn’t understand that one. But I think with the research, with it being already proven things that had cured cancer I accepted the INCH* trial, but otherwise I very much doubt whether I would have. No matter how much literature I read, if they had told me that I was having something that was untried, I think I would, really wouldn’t have done it. You know, if it had been tried on animals - and I would have had to be really desperate to follow through with that.

 

I felt that both of them had been used and proved to be successful on many people who had cancer, so therefore it didn’t really matter to me which I had, providing it cured it. You know, I think you’re willing to go to any lengths, and I also have always felt that you can’t just take - you’ve got to give back. So this trial I felt, “Well, at least I could give something back.” You don’t get anything in this life unless you give something back, do you? So really I would have preferred not to. I understood them not wanting the chemotherapy because the side effects are awful. I understood that, but I really, that wouldn’t be in my head. Like them saying to you, “Were you disappointed?” I couldn’t understand. “Were you disappointed that you didn’t get the chemo and the radium?” And I thought at the time - well I think anybody would think - that I’ve got the better choice, just the radium.

 

* INCH = a trial comparing INduction CHemotherapy followed by Continuous Hyperfractionated Accelerated Radiotherapy (CHART) with CHART alone.  

Jargon and abbreviations are hard to understand. Face-to-face discussion could help people who...

And then I have difficulty with some of the literature they write, you know, and particularly being an older person now I’ve found in my latter years nursing that all of these new fangled things, you know, were quite - and I hated how everything was shortened. And so therefore, you would hear in the beginning of a, something which they would say ‘RT’ and then it would be repeated. They would give the full name, right, the full condition and then a little further on they would just give the capital letters and you’d be thinking, “Er?” You’d waste half of your time. So how people understand all of, all of the jargon that was thrown at them, even though I suppose that we think it’s simple [laughs]. It’s not very simple for lay people.

 

What do you think could be done better with the information? I mean, you talked about the fact that many people that you met didn’t really take it in.

 

Uh-huh.

 

How could that have been improved?

 

I think it’s simple, absolutely simple, and absolutely impossible with every thing with the National Health Service now. There is not enough staff. To me sometimes they’re throwing money in the wrong direction. There are so many chiefs, very few Indians. You know, and up in that clinic, it’s really is so busy and so few people are having to deal with it, it’s , so really the answer is there’s no answer. No answer to it. Because if you have too much staff then you’re falling over each other. There just isn’t an answer.

 

Are you suggesting they use written information too much because they haven’t got time to talk to people?

 

Yes, yeah.

 

Is that it? Okay.

 

Yeah.

 

So your preference would be for somebody, rather than giving you a leaflet and telling you to go away and read it, to --

 

As I say, with me I was quite happy to read them, but I know from what I see other people don’t read them. And I mean it really came up with just the, you know, all of the information that was given, maybe a couple of sheets of paper for when we went for the CHART [Continuous Hyperfractionated Accelerated Radiotherapy] that they hadn’t understood ‘bed and breakfast’*, hadn’t understood at all. But they told me what bed and breakfast was, but I retained it, you see. Nobody knows until they’ve experienced it before the confusion that really is in your head when you’re told. Like I said I started clearing a drawer out because the next day I was going to the [name] Hospital - instead of doing things where I would do it normally, you know, get my things out, pack a case, inform people who should be – no, no. I decided I had a drawer that was really messy and I really should, you know - crazy things. So I mean if my head had gone crazy, God help what other people’s heads were.

 

* The ‘Bed and breakfast’ system Rose mentions means an overnight stay for radiotherapy but not as a full in-patient. Patients are asked to bring their own medication with them, but some patients Rose met had not understood this.

Rose wonders if she saw a doctor less often because she was in a trial. The nurse dealt with side...

I had the radium, thirty six doses of radium. I was told the side effects to expect and got them, but not as bad as - I suppose I was fortunate I didn’t get them as bad as obviously some people get them. Because of course you, your oesophagus is, it’s quite difficult to eat. But then I think it’s also the person. I have a high pain tolerance. I knew I had to eat to stay healthy, so I therefore I would persevere, whereas I think a lot of people would probably not because it hurt. I felt the after care, I wondered whether because I was on the INCH trial - I don’t know what happens with other patients who are not on a trial - but I felt the, I always saw the research nurse who asked, it was always the same questions, I saw her every month. And I wondered whether I would have seen a doctor more often. Because sometimes if I had a problem that would probably be minor, minor problem, she would say, “I’ll just pop off and see if the doctor needs to see you.” And then would come back and, “Oh, that’s the radium causing that,” she’d say, the doctor’s nurse. But, you know, and I felt sometimes had, had I gone on a trial - and in some ways sometimes regretted it a little - that because I was seeing a professional nurse that would I have been seeing a doctor every month? Do you do you understand what I mean?

 

So you mean if you hadn’t been on the trial?

 

Uh-huh.

 

You think you might have seen a doctor more often?

 

Uh-huh. I, you know, it kind of, I was relaying to her how I felt, she was going out of the room and going to another room and mentioned to the doctor, “Rose, you know, says she’s still having a bit of a problem with eating.” “Oh well, that’s the radium.”

 

And also I think that my profession went against me. Somebody said to me once, “It’s so nice talking to you, because I feel as if, well, you know it all so I don’t have to explain all the time.” You see? And so therefore when you did need an explanation, it is not within my nature to not really say anything. So I would ask for an explanation, but in my own head I was thinking, “She’s, she’s going to think I’m stupid,” - but I really felt, “Did I not get all of the attention?” And yet I have no doubt that’s in my own head.

Rose would not want to test very experimental treatments, unless she was terminally ill. Then she...

No, but I’m telling you if they’d said to me that they’d been trying it on pigs the day before and it had cured them, I don’t really think I [laughs] would have accepted it. It was something that’s been around for years. I have heard of people, known people who are still around today because of chemotherapy and radium, so it was an acceptable treatment. It wasn’t a placebo treatment. I don’t know whether I’d have gone for something like that - other than I was in the latter stages of the disease, and really I had no choices to make, then I might turn round and say, “Well, all right.” I mean I’ve already, my children know that there isn’t any way, other than I’m like I am at the time before I became ill, that I want resuscitation, anything like that. I wish not to mess around like that. So in the latter stage - I might for thinking, “Well, even if it’s only a one per cent chance.” Life is a funny thing, isn’t it? I mean it’s, it’s precious, you know, so.

 

So in that case you might go for some experimental treatment--

 

Yeah.

 

-- versus placebo.

 

Yeah, yeah. But that would not necessarily be for me. My thinking would be, “Well, they’re telling me I’m going to die in a couple of weeks or something. I could, it would perhaps help my granddaughter.  

Patients may look calm and unemotional on the surface, but they may not be feeling that way...

They’re all so busy, and I think it’s taking - they do take time with you, but I think they don’t take feelings into consideration, because when I was told I had cancer there was three nurses standing and the specialist here and my son next to me. Now I must have appeared [bangs table] as hard as that table. My son started to cry so immediately it was, you know - they didn’t really know what I was feeling, and I think it was the assumption from visual things that, boy, this woman really has not flinched. They forget the mother instinct. If I had got upset my son would have been so upset - I mean he was upset as it was - but he would have been so much worse. And he today still says, “I think I let you down.” But you could, they could see that he was upset. I appeared to have taken it all in my stride, but nobody knew what was in the head and in the body, and I think they’ve always got to take into consideration that nobody just takes that kind of news - as I say, I can remember thinking, “What an awful word.” You know, there’s nothing musical about it. You know, it’s [slaps hand] cancer. And they, they just took as it as facial. I think you’ve also got to predict that no person’s going to really feel no feelings at all.

 

And do you, do you feel that they approached it sensitively when they were talking to you about the trial or was that also a time when you felt more?

 

Oh no, no, I felt that was fine. But I think because their initial thing - that’s what I meant with, because you see they always say, “Oh, you know, Rose always looks well and she’s full of life and she’s all.”

 

Because they’re still really taking from the visual. I think sometimes if only they had time they would - they don’t really know you, do they? And you can’t expect them to know you. But I think if they just - I used to always be able to put myself in somebody’s place, so I think that if they could only stand there and think, “She might look like this, but there’s a reason for this”, and always know that the person, no matter what facial things they’re giving away, the person is not really feeling that way and try and dig a little bit into it. You know.