Elizabeth - Interview 21

Age at interview: 50

Age at diagnosis: 49

Brief Outline:

Elizabeth had a wide local excision, radiotherapy and is taking tamoxifen for five years. Work helped her to stay positive and focussed throughout.

Background:

Elizabeth is a single nurse and ward manager. Ethnic background / nationality' West Indian

More about me...

Elizabeth was diagnosed with DCIS in 2007 after her first routine mammogram at the age of 49. She was a nurse and had her tests conducted in the hospital in which she worked. She found waiting for the biopsy results worrying and got the results while she was at work. After hearing that she had DCIS, Elizabeth went back on duty. She didn’t feel like talking to anybody about the diagnosis because she was taking in the news herself and dealing with it the best way she could. She said, ‘I went into this mode of just dealing with everything by myself and not talking to anybody about it, apart from a couple of people like my carers or my boss.’

 

Elizabeth had a wide local excision and said she woke up during the anaesthetic, which is very rare. She was medicated again and, for a couple of days, found it difficult to move because her muscles had been relaxed so much. Elizabeth had no family in the UK but some support from a carer, someone she had known when she first started nursing.

 

Elizabeth returned to work less than a week after having surgery. Work, she said, helped her stay busy and keep things in perspective.

 

Several weeks after surgery, Elizabeth had radiotherapy. She said she would have liked more information about it beforehand because she didn’t know what to expect. She had three weeks of radiotherapy and carried on working throughout this time. Though she found it tiring, Elizabeth said that work helped keep her mind occupied and focussed. She said she felt emotional on the first day of radiotherapy but, after that, coped well and, again, very much on her own. She found it helpful not to talk to other people who might have reacted very emotionally or negatively when she herself was coping positively.

 

Elizabeth is taking tamoxifen for five years and said she didn’t like taking it or the side effect she was experiencing (perspiring). She said her job kept her busy throughout the time she had DCIS and that, now, she sometimes forgets she ever had it.

 

Elizabeth was interviewed for the Healthtalkonline website in 2008.

Elizabeth, a nurse, said it was only when she developed painful symptoms that she found out she'd...

I was sitting waiting with the wire stuck in, yeah, sort of…. But it wasn't unpleasant. I was just worried about waking up and ironic she said we wake everyone up, but then I didn't, I woke up before I was due to wake up.

How did that feel, waking up? Did you knew where you were?

Well I had no idea of what happened to be quite honest. And I think that sometimes you never know what happens in surgery. Because I'm sure if I hadn't developed any symptoms, nobody would have been the wiser. What had happened was, twenty-four hours following the surgery, my jaw became very swollen. I could hardly swallow, my ears were very painful. I remember walking in the rain to get to the GP because I wanted to see him urgently. It was almost closing time and he said, “Are you all right?” And I said, “No, I've got this awful ear, pain in my ear, my throat feels as though I'm not going to be able to swallow.” And he said, “Well”, and I said, “Well I've had some surgery done yesterday and I don't know what happened.”

 

And he rang [the hospital] while I was sitting in the surgery and they wanted to see me straight away. But I couldn't have the energy or the strength to come all the way back here because I live in [Kent]. And so the following day I did come back to see them and I brought my carers with me, the lady I call my mum who looks after me. And they told me that during the surgery I woke up before they had finished and because they had to relax my muscles to get me on, you know, to put me to sleep so quickly, this particular drug is the side effects of, still I think the tube they put down must have sort of damaged the side of my throat leading up to my ear. It was so fast, it was so quick, you needed to apologise for that but I wouldn't have known had I not developed, you know, got the symptoms because they don't always tell you everything.

But they did apologise and I think he was just trying to do the best for me. And I think the reason I woke up was because also he was taking x-rays each time he removed whatever. He was bringing the machine in and that takes time to bring the machine to take the x-rays and perhaps I just woke up, you know. So, but I wasn't angry.

Elizabeth, a nurse, worked throughout her three weeks of radiotherapy. She found it tiring but...

On the first session it didn't seem too bad and I was only going to have three weeks instead of six weeks so… I found it very tiring because I was also coming to work in the morning at six, leaving at eight o'clock so I could get to [the hospital I worked at]. But having to return to work, that was my coping mechanism. I was coming in and doing my office job, not being on the ward, or just making sure my staff was all right and then going for my treatment and then going home from there. So whether the appointment was nine or it was three o'clock, it was the same method, just coming in doing my office work. Because I felt by not having everything piled up, when I was fit and ready to come back was less daunting anyway. So that's how I dealt with it….

The hospital where I worked was much more convenient for me. So I had this hospital.

Yeah. And you noticed that during this time you were a bit more tired than usual, or.

I think it was just, the whole thing was, because I used to leave home at five-thirty in the morning.

And not get back home until?

And not get back home sometimes until about six in the evening. But sometimes I was lucky, I would get home by noon or even earlier sometimes. Because I think the girls at the hospital were pretty helpful and pretty understanding so they would make it, sometimes they would change my appointments for me. And I think out of the whole three weeks, I only had about two afternoon sessions. Most of them were in the morning where I could just come in and have my session and go straight home afterwards. But still putting in an hour into my computer just to get my work up to date, you know, so.

Yeah. Did you know what to expect with the radiotherapy?

I didn't no. I didn't know what to expect. I was told I had to drink lots of fluids, had to keep my immune system up. And I wasn't quite sure how I was going to do that because I'm not a very good drinker, I never drink and I never eat.

So through the day you don't drink much water?

I don't drink much water. I don't drink a lot of anything. I never have to time to eat or drink to be quite honest until I get home in the evening. But saying that, again the instructions was given to me and I took it on. So I drank and I also try and keep, I kept as healthy as I could by having lots of fruits.

Elizabeth, a nurse, felt anxious when she hadn't received an appointment for radiotherapy. She...

Then waiting for the radiotherapy was the next step. And that also put me in a little bit of an anxiety because you want, perhaps the information was given to me but perhaps I hadn't taken it on board that I needed to heal first before the radiotherapy commenced. And I was waiting for it to happen and it wasn't. And I think it was something like three, four, five weeks down the line, still waiting for the radiotherapy and just thinking is it going to grow again before I got to my radiotherapy. But then I found out later that my breast had to heal first before I could commence the treatment. So that within itself, being told before the radiotherapy commenced is that, it's on my left side, I could have complications, my heart could be involved. That was another mode of anxiety again because, you know, you don't know what to expect….

And the bit about the radiotherapy may affect my heart, that used to give me a panic attack at night when I first had it because I used to think, “Oh my goodness me.” You know, I think they’d zap my heart because it's not beating as it should do. But then I still snap out of it, you know, because I could have been ringing NHS Direct every night after having my radiotherapy just telling them that I think my heart has been zapped because they told me it could affect me. But I’m a very, in that sense of the word, I'm very controlled and just think, “Right, you rang them two nights running, you'll have to stop this, this is not going to be good enough. You know, there's nothing wrong with your heart, just get on with it.” And that's what, and then I never rang them again so.

You rang them and did you feel reassured from the call or …

Well, I never got through,

Oh right, you just talked to yourself about….

Yes, I was there forever, I was holding on. And they were meant to be helping me and, in the end, my panic had gone by the time they answered, well they would have answered anyway…. And then I calmed myself down and then I was fine.

Elizabeth, a nurse, said she had all the information she needed and it was easy to read and...

Did you at any point look up more information about DCIS or breast cancer generally?

To be quite honest I looked up nothing, I read nothing. I didn't want to know anything. I just dealt with it as they were looking after me. I just left it all to them.

You trusted them.

I trusted them and I didn't do anything. I didn't read anything. I didn't look up anything. I didn't ask any questions at all.

You just felt you didn't need to know?

I didn't need to because the nurse that was looking after me handed me some leaflets on DCIS. She also handed me some other information about mammograms and I think they handed out quite a lot of leaflets on quite a lot of things. But the leaflets were short and sweet. They were quite easy to read and the information was just to the point. So you can sit down over a cup of coffee and read them all and hold the information in and when you need that information it would just come, you know.

Some people do not know what to say or ask inappropriate questions. Since coming to live in the...

I think some people just can't talk about it. And some people don't know what to say, and some people overdo it. So it's you as an individual has to take the person or the persons that, the people that you know that you can pull from, the people who are going to still make you laugh and not give you gloom and doom about the internet. You know, about the internet and I've read so and so and I've read so and so and oh my god and does that mean? You don't, you know, need that, you know. And what about if you’re supposed to meet a man and make love to the person, do you know, it’s, “What do you think?” Like you don't need people asking you those questions. You just have to, you know, pick the people that matter most.

And who can support you in the way that you need.

That you need to be supported. I think the reason why I cope the way I coped is because I've been in this country for an awfully long time and I came to this country by myself. And because I never had a mum and dad, you have to do everything for yourself. And so there aren't many moments to cry and to feel sorry for yourself and say, “Look, you know, …” whether it's to do with money, whether it's do with a bad day at work, you know, there's nobody there. So you just have to get up and do it yourself.

And I think that's, if people think that it's, you know a lot of my nurses find I'm a very hard person but it's not, I'm not hard. I'm hard to, I like the best for my patients, I've always done that. If you can't provide the care, you shouldn't be doing what you're doing. And I try and say that to them every day. And on the other hand, yes there are times when I need to talk to somebody and I've got a friend in [place name] that sometimes said ‘you should be Marjorie Proops’, or whoever it is because you’re quite good at listening. And we've been friends for years. So, therefore, you know, if there is anything I would ring her more than anybody else. Yeah. And I think because she's so far away as well, I wasn't seeing her, she was able to support me over the phone.

 

But I think it's a very stressful business and I think that I could understand how some women feel that they need to talk about it every five minutes of the day. Because you're just looking for the reassurance all the time, that people are saying, “Look, you're not going to die. This is what you've got, there are a lot of treatments out there, people are doing their best every year, things are different.” And you just have to really take one day at a time.

Elizabeth, a nurse, chose not to tell many people because she said the word 'cancer' frightens...

Actually I was on duty when I got that result. I went to see the consultant by myself, got the results by myself and came back on duty because I didn't feel I wanted to talk to anybody at that time, I felt I wanted to deal with it the best way I could because I feel that sometimes when you talk to people, I think the word ‘cancer’ sets everybody thinking you're going to die anyway, you're not going to have very long. And I think your emotions run riot anyway because 1) you're waiting for some results, 2), you're not sure when you have the surgery what they're going to find, so that brings anxiety in itself much less to having people coming up to you, depending on how many people you tell, touching or hugging or you know.

I couldn't cope with that to be quite honest. As a matter of fact, I went into this mode of just dealing with everything by myself and not talking to anybody about it. Apart from a couple of people like my carers or my boss for instance. But, apart from that, I didn't feel

that I wanted to talk to anybody.

 

…To be quite honest, I didn't find it stressful. I just found I was very quiet. I dealt with everything inwardly, I didn't discuss it. My GP asked me whether I had some counselling and I said, “No” because I didn't, 1) have the time for the counselling; 2), I was too busy at work, because in my job I have a lot of patients with brain tumours and they're waiting for results. I was able to put myself into their shoes, to understand the waiting game we all played in, for results. And so I was a comfort to them in a lot of ways and it helped me to understand what they were going through. And so I didn't really have much time to sit around and cry. I think I cried, the day I was told I was very emotional. I was emotional the day of the, I think the first day of my radiotherapy. After that I was more tired more than anything else.

 

And by not telling people, I kept very much to myself so it was, I don't know if that makes any sense. But I didn't go into a wail of crying all the time. I think my boss said they were in awe of the way I coped with it. But I coped with it the only best way I knew how, is because I worked all the time. And I find that was very helpful to me by not talking to other people about it, you know.

 

…It was good to be at work. It was my coping, people were horrified. They used to say, “Why are you at work? You're silly. If anything happens to you, they're not going to thank you for it.” But little did they know it was the way I coped with it. You know, because when I leave here and go home it was there anyway waiting for me, because the minute I open my door, put my bag down, it was all there. So why should I have it all day, all night. You know, twenty-four, no, so I don't, when I was working it wasn't there and then when I got in, it was only there for an hour because I was too tired to think of it and I'd gone to sleep anyway. And that helped.