Diane - Interview 11

Brief Outline: Diane was diagnosed with breast cancer and received a lumpectomy, radiotherapy and hormone therapy. She experienced extreme tiredness for a few years after her diagnosis but feels back to normal now. She thinks that her cancer has affected her family just as much as it has affected her.

Background: Diane is a teacher. She is married with two children. Ethnic Background: White British.

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Diane was diagnosed with cancer after a lengthy diagnosis period as both her GP and hospital doctor could not feel her breast lump. Due to the delays, she was diagnosed on Christmas eve, and decided to tell her daughters after Christmas. She wonders if those delays shaped what happened in the long-term and might have saved some anguish and worry amongst her family in the long-term. Because of these delays around her diagnosis, she is more likely to get a second opinion on any health problems if she is concerned about her care. 

 

She feels that cancer has had a long-term impact on her, and is always at the back of her mind. However, she does think that some of the long-term effects are within her family, who still worry about her and bring up her cancer in conversation. Although her family were quite close before her diagnosis, she feels that her cancer diagnosis and survival might have brought her family even closer together. They are more likely to do things that they may have otherwise put off, for instance, going on holidays. 

 

Diane was offered a mastectomy, but decided to have a lumpectomy instead. She had to wait six months for radiotherapy due to a shortage of radiographers. She sometimes worries that the delay in radiotherapy might come back to haunt her. 

 

One of the main impacts that cancer had on her life was tiredness. She thought that the tiredness may have been due to the hormone therapy and the doctors switched her drugs but with no effect. She had to go part time in her job because she was so tired, and thinks that it took her about two years to get over the constant tiredness. 

 

Diane was stung by a hornet, which swelled and caused lymphoedoma and cellulitis on the side she had the breast cancer and lymph glands removed from. The cancer clinic gave her a lymphoedoma sleeve, which she finds quite effective and sometimes wears if she is doing gardening. 

 

She felt that her hospital follow-up appointments were sometimes quite rushed, and that she didn’t have the chance to talk to the nurses or consultants about how she felt. It would have been helpful if she had been given information on what to expect from then onwards or how to access information. 

 

Her message to other people with cancer is that you can beat it, and just live your life. 

 

Diane says that her breast cancer treatment has had a long-term effect on her energy levels; she can still not do the cleaning, shopping and visiting a friend all in one day as she used to.

I think the long-term impact it’s had on me, and still does, is the tiredness. I get tired, but that could be that I’m just getting older but it tends to always come back to me that it’s a result of the cancer that I just don’t have the energy I used to have, because that’s what happened straight afterwards. I had the radiotherapy and it was that, I think, that drained all my energy, and I’ve never got that back for one reason or another.

 

When I can whiz through the house in a day doing it from top to bottom and then go shopping and visit somebody, now I would be exhausted if I did that, and then I don’t think I could do it, not to the, like I used to. But like I say, that could be my age anyway. 

Diane had breast cancer and was affected by lymphoedema following a bee sting. She tries to avoid lifting heavy items and sometimes wears a lymphoedema sleeve to prevent swelling.

Can you think of any other practical issues that have arisen that could have been, something could have been provided to help you or you felt that you had to deal with alone or anything?

 

No, not really. No, I remember somebody said when I first got cancer, a cancer care nurse, that because I’d had the lymph nodes taken out I should really look after that arm and be conscious of it all the time. She said, “You will get to the point where, you know, anybody who goes near your arm you’ll [urgh]” And I thought that was a bit weird at the time. I thought, “No.” And it didn’t really happen until I got the bee sting, which was a couple of years after I’d had cancer that I actually became aware that that arm wasn’t as good as the other one and I did have to be more watchful of it.

 

So is that something you need to keep an eye out for or get?

 

Oh, yeah, yes.

 

Do you see someone about that?

 

I did but for a couple of visits after the bee sting but not now. It isn’t a problem but I am conscious, yes, I am conscious and I do think this arm perhaps isn’t as, yeah, yes I suppose that is a long-term consequence. This arm isn’t as strong as the other arm. I can’t carry a lot of heavy shopping or anything like that. It would hurt. I have to be very, but I do carry heavy shopping. They said not to but, you know, if it starts hurting I, because I’m very right handed. This hand is no good at all, so I can’t write or do anything with it, wouldn’t paint with this hand or anything. But yeah, that would be something that I would think about. 

 

You know, if we go on holiday I wouldn’t yank a heavy case. That would be something I would do it with this hand.

 

And do things like the sleeve and the massages help?

 

The sleeve actually is brilliant. I’ve got two of them, and they did say, “After a year or so come back and we’ll give you another one.” But I’ve never gone back. I’ve got two and I’d say only use them if the arm is aching a bit and I’m going to do something I would put it on and it does make a difference. I know it does. It then doesn’t ache.

After having a lumpectomy and radiotherapy for breast cancer, Diane has no sensation in the affected breast so doesn't get aroused when it is touched; her husband feels no differently about sex.

Some people say that after they’ve had cancer it can affect things like your sex life. Did you find that?

 

No, I was concerned that my husband would bear it in mind but it hasn’t affected him at all. He’s quite happy. I had no sense of touch on that side. It’s, you know, it’s quite. I don’t know why I haven’t any, don’t get any, I’m not aroused if anybody would touch that side. I think, again, it’s because I’m self-conscious about that side, but no, not for very obvious reason because it doesn’t look, I don’t look deformed or anything. But no, it hasn’t impacted on my husband at all, and again, I don’t know if that’s normal, you know, that for a husband to feel differently, but he hasn’t. I think in some ways I suspect he’s just glad I’m still around. 

Diane likes to talk to people about her breast cancer but not in a depressive way and without making a fuss about it; however, she finds it weird that one friend has never even acknowledged it.

So now that you’ve had cancer, and you’ve talked about talking to other people, do you find that you relate to people who’ve had cancer differently?

 

There does seem to be a camaraderie among people who’ve had cancer. We go to Ireland a lot more and one of the people we go and see over there has had it, and we always have a hug when we go over there. “We’re both still here”, sort of. We have a bit of a laugh about it, although he isn’t well at all. He’s quite an elderly man. The fellow down the road who’s been very ill with cancer, you have a chat because you feel you’ve been somewhere together, you know, you’ve come over the other side. And it enables, well I don’t know if it’s particularly me, but I think it makes you able to take it lightly, whereas I used to get quite wound up by people who’d come and put a very sad face on, “Oh, how are you? Are you all right?” Grrrr! But, you know, I didn’t like that. I think it was making you feel more and more negative about what was happening to you. So I mean with my neighbour down the road I can have a joke with him, and even my husband will joke, because you can get over it, hopefully, yes. And there’s no point in being miserable about it. If you have, like the man down the road, has only got six months to live, you think, well, you don’t want people around you with glum faces all the time talking about that. 

 

But the other side of it you don’t want people to ignore it. I had experiences of, well, people who never mentioned it. And that was creepy, you know, you’d have a whole evening out with them, and not that I wanted them to, but you think afterwards, “They never once mentioned”. But not in, I didn’t necessarily want them to be sort of sorry for me or anything like that, but just it’s a reality wasn’t it, and this was when I was sort of still having treatment for it. But they, and to this day there’s at least one person I know who I see fairly regularly who’s never ever mentioned it, which is weird. I think it’s quite funny, but it’s, and I think you do want people to acknowledge it but not necessarily make a great big fuss about it.

 

So has that changed the way that you relate to people, you know, depending on how they’ve reacted around that time?

 

Not really. I mean it takes all different sorts, doesn’t it. I know when my mum died years ago there were people who couldn’t talk about it and didn’t know how to speak to me. And it’s actually helped me when now I meet people whose relatives have died, I know they just want you to say that I’m really sorry, and that, you know, and that’s all. “Is there anything I can do?” But they’ll not really go into a very depressive mode of wanting to talk about all the details of it. I don’t want to do that, but I don’t want to go back through it all. 

Diane says her family often bring up her breast cancer in conversation; they seem to think it is still there 7 years on and can't put it behind them.

I think the trouble with cancer is it has got connotations for people, and I think it’s one of those diseases that generally people don’t think you’ll get over. It’s still there and that is always in the back of your mind that it’s there niggling away. And it’s my family, I think it has had more of an impact on than me in that sense. They still, I’m sure, think it’s still there. They don’t totally relax. It seems to come up in conversations when you least expect it. And that, I don’t find it hard but it does sort of bring it back and we can’t get over it. And I think it does shape a lot of our lives now, the fact that we’ve taken up skiing. My husband is determined to do everything in case, you know, I die. And he will often sort of talk about if I died what would happen to the money and things like that, and what he would do, and what he wouldn’t do, in a way he would never have done before. And in some ways I suppose it’s good, you know, accept that one of us will die eventually, but it’s me that’s really constantly saying, “But I’m not going anywhere”. And I think nobody really in the family expects me to live a long life. When we talk about retirement you think, “Well, will I get five years? Will I get…?” And I suppose it does affect my thinking but I like to think it doesn’t, and I’m determined that it isn’t going to have a long-term impact. 

 

But I think there’s always this nagging doubt in their mind that something is happening, and if I say I’m not well you can see them looking and they can’t, the mention of cancer seems to come up fairly regularly in their conversations and my husband’s conversations when I was ill, is a sort of favourite thing, not in a negative way, I just think it’s always there in their heads now when I had cancer. It’s not that I go on about it, it’s them that will always bring it up. 

Diane was upset that one of her daughters believed that she would inevitably develop breast cancer because Diane had had it.

And it’s also, and I didn’t realise until fairly recently, about a year or so ago, that it had left my elder daughter with the feeling that she would get breast cancer. 

 

It was inevitable, was more or less her response one day to a question, “Well, I’m going to get it”, and that worries me a lot. I think she shouldn’t be thinking like that. She’s got her life ahead of her and I don’t think how to convince her really that that isn’t the case. But that worries me. That’s one of my concerns.