Louise - Interview 18

Age at interview: 59

Age at diagnosis: 52

Brief Outline: Louise was diagnosed with breast cancer seven years ago, and received a mastectomy, chemotherapy, radiotherapy and hormone treatment. The hormone treatment caused some long-term effects. She was unable to work through her treatment and sometimes still experiences fatigue and lack of energy.

Background: Louise is married, and has two sons. She works as a self-employed tourist guide. Ethnic Background: White British.

More about me...

Louise was diagnosed with breast cancer seven years ago. She first went to her hospital for a mammogram when she noticed that the appearance of her breast had changed. She was treated with two operations, including a mastectomy, chemotherapy, radiotherapy, and has been on tamoxifen and Arimidex. 

 

Her surgeon warned her about the risk of lymphoedema and offered to remove and test a few lymph nodes instead of having all of her lymph nodes removed. She is glad that he gave her the decision, although she did have cancer cells in those nodes he tested and did need to have all of the nodes removed. She hasn’t experienced lymphoedema but sometimes does exercises to keep things moving. 

 

Louise made a decision not to stop working when she was diagnosed as she wanted to carry on with her job, however, she is self employed so doesn’t get paid when she is off work. It was hard to keep on top of work while she was going through her treatment. Her income plummeted, and she lost a lot of money as she had to find other people to take on her work while she was having treatment. She wasn’t offered any benefits at this time, but luckily she was okay financially as her husband was working. Nowadays, she doesn’t want to feel under pressure at work, and sometimes feels tired, so needs to push herself to get her work done. 

 

Some of her treatments gave her long-term effects. Chemotherapy made her go into the menopause, and tamoxifen gave her hot flushes and night sweats which was disruptive to her sleep. She has mentioned these side effects to her GP who hasn’t really picked up on them. She thinks that doctors should listen to their patients and give them the kind of care and support they need individually. 

 

She had a mastectomy, which she has gotten used to. At first she was worried about her husband seeing her, but while on holiday she saw lots of people who were unembarrassed about their different body types. Nowadays having had a mastectomy doesn’t bother her. 

 

She didn’t tell one of her sons that she had breast cancer right away as he was going through his university exams. However, cancer has had a positive effect on her as she thinks that it has improved her relationship with her older son, as they were able to open up and talk openly about their relationship. Having had cancer has also helped her come to terms with dying, and she is not scared of cancer or dying anymore. 

 

Louise experiences a general tiredness and lack of motivation due to her breast cancer treatment. She really has to push herself to get things done.

I’ve been on drugs, and still am on drugs , and these have affected me. And I think also that I’ve suffered a lot from inertia and tiredness and lack of motivation and, well, I say lack of motivation, but I have wanted to carry on as usual but it’s been difficult and I’ve felt I really have to drive myself at times. 

 

In terms of side effects of your treatment and things, do you think that’s affecting your working life now?

 

It makes it harder. I’ve had to really make an effort to force myself. Sometimes when I’ve been really busy, if I’ve come home tired and I’ve got invoices to do or I’ve got guides to book or I’ve got to organise paying them, you know, I’ve got to keep up to date with my accounts, and it’s been really hard sometimes to make myself do that, and sometimes I’ve let it slide a bit more than I should have done. Yeah.

 

And why is that? Is it because of fatigue or, as you were saying, just sort of lack of…?

 

Partly fatigue and partly just a sense of just not wanting to feel under pressure, wanting to just relax. It’s, yeah, now whether it’s psychological, whether it’s the drugs that I’m still on, whether it’s a bit of both, whether it’s my age, I don’t know.

Louise believes that being upbeat about your cancer helps people around you to cope, which in turn helps you, but telling people to be positive when they can't just adds to their problems.

Yeah, no, I mean I suppose on this sort of trying to be upbeat, if you are upbeat about it helps you because people are less like, if you’re sort of terribly depressed and talking about your fear of dying and so on, you’ll make other people feel afraid, and a lot of people will probably avoid you. Whereas if you are upbeat and positive then people will more likely want to be with you and then that helps you even further. But you can’t tell somebody to be positive because they either are or they’re aren’t, and if they aren’t then they need their negative feelings addressed.

 

They need to be able to talk about that with somebody, and the last thing they need to hear is to be told they should be being positive, being made to feel they’re not behaving in the way they should do is, do you know what I mean?

 

Because having fear and being negative is obviously a very natural…

 

Natural, yeah, yeah.

 

…natural thing to feel.

 

Yeah.

 

Yeah.

 

Yeah, and people need to be able to express that. So…

 

And that’s interesting in a sense that, you know, you don’t have to feel pressured to feel positive because I think a lot of people talk about, you know, being positive pulls you through and things, and it’s not necessarily that. It’s just…

 

Well, if it’s coming from them that’s fine. You know, if they’re having experiences and it’s made and they’re looking, another woman I know, who had breast cancer, her cancer was discovered through just a regular check-up, and her attitude was that she was really lucky that she lives in a country where this is done for free and it was discovered. But other women will take the attitude, “This is awful. Why has this happened to me? Blah, blah, blah, blah”. And you can’t, so if the woman herself through her own experiences is considering herself to be lucky, well, that’s great. But if a woman through her own experiences isn’t feeling that and she’s feeling frightened of what’s she’s going to go through, frightened that her partner is not going to find her attractive any more, frightened about the repercussions from work, frightened about dying, frightened about the treatment, then if you say to her, “Well, try and be positive”, she’s going to think, “Well, what’s to be positive”, and it’s just going to make her feel as though she’s failing, you know, and it’s just going to add to her problems. Do you see what I mean?