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Breast Cancer in women

Living with breast cancer

Although most women were shocked and upset at the news of their diagnosis, many said that, after treatment and recovery, they were able to lead life as normal. Women explained that they resumed activities they had enjoyed prior to the illness, including sports, exercise and work.

Some women, who had been diagnosed less than two years ago, explained that they were slowly getting back to normal or feeling more themselves again. Other women said they now felt well enough to go back to work or start a new job.

 

Ingrid found it reassuring to know that it can take two or three years for women to recover from...

Ingrid found it reassuring to know that it can take two or three years for women to recover from...

Age at interview: 61
Sex: Female
Age at diagnosis: 58
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I had the breast surgery in January, and in the following year in March I had the hip replacement. And so you, you sort of, when you’re feeling tired you don’t know; is it the combination, and it probably is the combination of the breast cancer, the hip replacement, age.

Right what can I deal with first? I can’t do anything about my age, that’s a fact of life, get on with it. But what can I do to cope with my mobility and energy levels relating to the breast cancer? And there I know that, in both cases, it is getting better. But it’s again this bit of, “How long is a piece of string?” It’s taking much, much longer than I expected. I had set myself goals; by such and such a time I should be able to do such and such. Well I kept having to move the goalposts and I still am.

To be told, “Yes I’ve heard from a lot of women that this can take two to three years, but it does get better.” Was reassuring, but it also made me cross. If it is known, if it is a fact that it can take two to three years, then I think that needs to be taken into consideration. Employers need to know that. It has an impact on your ability to work. And it is the reality, and I think that needs to be taken into consideration and needs to be looked into further.

 

Explains that she is slowly getting back to feeling her usual self again.

Explains that she is slowly getting back to feeling her usual self again.

Age at interview: 43
Sex: Female
Age at diagnosis: 43
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I mean, as I say, I've started to feel better in this last week really. And, yeah, it has to get better, it has to get better. It's just that, I don't think the worry will ever go away.

I don't think it will ever, I'll ever be able to kind of have a pain somewhere and think "it's nothing" the way I used to do, or "it will go away" or, everything is much bigger than it used to be I suppose, from a heath point of view.

But I think once I can get myself back to being me, because I don't feel like I have been me. But I've started playing badminton. And I went for a job interview the other day.

So I feel like I am getting back my life a bit.
 
 

Gillian has recovered well but sometimes feels a bit down. Friends and family who haven’t had...

Gillian has recovered well but sometimes feels a bit down. Friends and family who haven’t had...

Age at interview: 55
Sex: Female
Age at diagnosis: 51
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There was a couple of times were like, when you would say, it’s really weird if you mention say like maybe with the hair loss or the lymphoedema and it’s like, “Oh yeah but you know, but at least you’re alive.” But it’s like saying, “Yes I know I am, and I’m really grateful, but I just want to have a whinge and a moan about this, because this is like really getting me down.”

And I think they [other people] mean well. It’s like, they’re trying to say to you, “Look you know, be positive, be happy, you know you’re alive.” And it’s like, “Yes I know, and I’m really, really happy about that. But I just need to be able to let off steam about this which to you is like, in comparison with the cancer, is this big, but to me on this particular day it’s like this big.” You know I want, and that’s a couple of times it’s like, “Oh I just want to, just let me have ten minutes. I want to have a moan.” You know I haven’t moaned about the cancer, I’m not moaning about that. I just want to have a little, you know. And just say, yes alright, you know don’t worry about it.

Many women discussed the check-ups they received after treatment. Some described feeling anxious before these check-ups, and many mentioned their fears and concerns about recurrence. While several women stressed that these anxieties reduced with time, others said that they were a constant insecurity.

 

Describes her fears of possible recurrences, that led to anxiety about attending follow-up...

Describes her fears of possible recurrences, that led to anxiety about attending follow-up...

Age at interview: 49
Sex: Female
Age at diagnosis: 30
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I was just terrified it was going to pop up somewhere else. So I had to really get to know my body again. I really had to build up confidence in my own body again.

And especially the first couple of years I was just a complete wreck. That every time I had a headache I was convinced I'd got a brain tumour. I had pains in my abdomen that I was convinced were liver cancer.

Especially back at the beginning. I found it very hard going through the cycle between check-ups. I would get very frightened right before a check-up that there had been something there since the last one and they'd missed it.

And I'd be very frightened right after a check-up that I'd got to wait another whole year and there might be something there that they'd missed.

But as time went by I got more confident, like riding a bicycle.
 
 

Explains that her fears about recurrence are unlikely to go away.

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Explains that her fears about recurrence are unlikely to go away.

Age at interview: 63
Sex: Female
Age at diagnosis: 58
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Well I think once you've got the treatment over you start living your life again. And you just go, I just seemed to go back to normal again. You do worry about it, of course you do.

And I'm forever examining myself, always, and I think too much sometimes. And you keep thinking' "Oh, that's a lump there."

And it's not, of course it's not a lump. But yeah, you do worry. I don't think you'll ever stop worrying about it, that it might come back.
 

One woman, who had been diagnosed with secondary cancer, discussed her uncertainty about the future.

 

Describes her uncertainties about the future after a diagnosis of secondary cancer.

Describes her uncertainties about the future after a diagnosis of secondary cancer.

Age at interview: 56
Sex: Female
Age at diagnosis: 53
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Now the future, I'm not really sure what's going to happen. 

I've got another appointment at the hospital in another month's time just for a check-up to see how things are going.

The cancer that I've got in the bones is incurable.

You can understand that in a way because it's there, it's, they say it's going to be controlled and contained, but nobody will actually tell me, and I think that that's because they don't know, whether I'm going to be back to walking absolutely normally, or whether this is ultimately going to be a further problem and it's going to kill me.

I feel quite positive in some ways, because I do think that this Arimidex is definitely affecting me. I can feel in myself that it's easier, I'm walking easier, getting out of a chair much more easily, all sorts of things within myself.

I think everybody is different, what you've got and where you've got it is different, how you react to the treatment.

It's all, everybody is different, it's not like an engine where you just take a cog out and put one back in, is it? It's all very different.

So, I am concerned, I feel well but I don't know what's going to happen.

Women also discussed the financial impacts of having had breast cancer, particularly if there had been a loss of earnings or sickness benefits. Several women also discussed the financial or other bureaucratic hurdles they might have to deal with because they had experienced a serious illness.

 

Raises some of the possible bureaucratic hurdles associated with living with breast cancer.

Raises some of the possible bureaucratic hurdles associated with living with breast cancer.

Age at interview: 27
Sex: Female
Age at diagnosis: 24
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It does come up in different forms. You just, you know - all the issues, even when, you know, you sort of looking for jobs or, you know, you're thinking about insurance and pensions and everything.

Suddenly you've got this thing.

And like when I'd, I don't know, whenever you have to fill out a form about "have you had a serious illness?" and suddenly it's there.

Whereas before everything was always' "No, no, no, no, no."

And suddenly there's this thing there and it just changes, it changes everything. It changes the way people perceive you on paper.

And yeah, it does change a lot so it definitely affects you.

It affects your life even if, you know, you feel you're not thinking about it.
 

Many women felt that their breast cancer experience, while difficult, had led to several positive changes or outcomes. Women often said that they now valued life more, and some described how their breast cancer experience had enriched their lives. Several women discussed travelling more since recovery, and a few mentioned exchanging full time employment for part time in order to pursue new hobbies or to relax more. One woman described having a child after breast cancer.

 

Discusses some of the positive ways in which breast cancer had changed her life.

Discusses some of the positive ways in which breast cancer had changed her life.

Age at interview: 41
Sex: Female
Age at diagnosis: 39
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And I do not think for a second that that life stops with cancer. In fact for me, in many respects, life began with cancer.

I was only turned 40 when I was diagnosed with cancer and I had this thought in my head, as many women I'm sure do, that life begins at 40. And I had many plans of what I was going to do and what was going to change when I would come to 40.

I think it would be fair and true to say that they may not have materialised if it were not for the fact that I was diagnosed with cancer.

I can do, for instance I recently bought a guitar, I bought a keyboard, I want to learn how to play. I read a lot more than I have done in the past, I read more for pleasure. I get my housework done at an early time in the day. I look forward to my days.

I plan my days which I've never had the opportunity to do before because it was chaos doing a full day's work, I worked for the County Council.

 

Explains that she now works part time to enable her to do more of the things she enjoys.

Explains that she now works part time to enable her to do more of the things she enjoys.

Age at interview: 57
Sex: Female
Age at diagnosis: 54
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I felt great relief that I'd got through it and I wanted to get on with my life and I wanted to do all the things that I'd planned to do.

I had, my lifetime dream was to go to Peru and Bolivia which I was going to do the previous year and had to cancel.

And my goal was that, this was January when I finished, that I was going to go and do this in September, and I was going to get fit, and I was going to go and so I did.

And I've been and I've done that (laughs) in fact. So that was a wonderful experience and I've done lots of things since.

I think the one thing I have done is I stopped working full time and I'm now working in a job share so that I have more time for me, so I can go out and meet friends and do the things I want to because it makes you look at the world and your life in a different way.

 

Penny now spends more time on the things she enjoys. She did some further study and has saxophone...

Penny now spends more time on the things she enjoys. She did some further study and has saxophone...

Age at interview: 47
Sex: Female
Age at diagnosis: 37
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When I was working part time, that was the time I thought it’s time to do something for me. And I’d always wanted to do my qualification in personnel, so I actually went back to college and I did the first year doing just a foundation course, to see how well I could study again. Really enjoyed it. And then took on a three year course. Always had the ambition to play the saxophone. And my brother in law, who is a bit of a, likes music and plays guitar and things, he got me a saxophone for my birthday, which was lovely. So I’ve been playing for the last three years and having lessons. So that’s great. Did all that, did my qualifications and within, I worked with my friend for basically about eighteen months and then I now work for a local authority where I’ve gone back full time as a trainee manager, which I’ve been at for seven years now. And when I look back I think, “Crumbs,” you know, “Where’s the time gone?”

During this time I’ve done other things as well, where I’ve, the two ladies that run this local business with the mastectomy wear approached me within the early days, within the first eighteen months, to ask if I could help them out at all, working for them. Which I did, and I didn’t do it for any payment, it was just to be there to help out. But also they wanted to do a little brochure on their website, so myself along with this friend I met and three other ladies, we did lots of photographs wearing different things. And we went off to a hotel and there was a swimming pool and that. So we made our name in a brochure and we were on the website, so that was good.

But for me that was really important because you see a lot of ladies and female models and they look absolutely gorgeous, and when they’re modelling mastectomy wear, I’m sorry, but you don’t get the true picture of how it could perhaps really look. And I think you need to see people that have gone through it, that can actually show you, “Look here I am,” and “I feel great in this.”

So I did that for the local company and then I did a couple of fashion shows for them, which was for the couple of, I think it was breast awareness groups that they knew about.

And then there’s another  magazine which is called , some people say Amoena, some call it Amuna, which is a fantastic magazine and you can, there is a website and they do two  magazines a year which comes out and has everybody’s experiences. So you can write in. And the articles are so informative about breast cancer, medications, treatments, it’s brilliant. And they also, in link to that, they have a brochure on their swimwear and bras and mastectomy wear. And I wrote to them or e-mailed them and just said , “If ever you want anybody to do anything I’m really happy, I’d love to be involved. And it’s my way of giving something back.”

 

Explains her joy at becoming pregnant after having breast cancer and her positive feelings about...

Explains her joy at becoming pregnant after having breast cancer and her positive feelings about...

Age at interview: 42
Sex: Female
Age at diagnosis: 32
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But when I had the chemotherapy I was warned that I might not be able to have children, which did upset me. Even if, I always wanted to know I had the choice.

But when they said' "Yes you probably won't be able to have children and your menopause might start," and it did seem that my menopause was starting at one point.

And then two years ago, no three years ago now, entirely unexpectedly, I became pregnant. And I had a very good pregnancy and very good birth and I've now got a lovely little two year old who's absolutely gorgeous and absolutely healthy, touch wood.

And I love him to bits. And [coughs] excuse me, and I, I did manage to feed him, even though I was only able to feed him from one breast.

And he's wonderful. And I feel very happy and positive. Yeah life is good, definitely.

And it is now nearly ten years since I was diagnosed, and of course the longer away from the diagnosis that you're free the better.
 

Some women explained that confronting their own mortality through illness had led to a reappraisal of life and appreciation of each day. Several discussed how they now enjoyed life more, and one described valuing her relationships with people much more since her illness. Women also talked about the effects of their illness on their personality. Some said that they now worried less or were more laid back, while others noted being more independent, assertive, sociable and confident. A few women felt that they were now more able to discuss their feelings with their partners and other people.

 

Explains that since her recovery she has wanted to devote more time to personal and family...

Explains that since her recovery she has wanted to devote more time to personal and family...

Age at interview: 61
Sex: Female
Age at diagnosis: 59
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I thought of, really living to the age of my mother. I never thought that I would die young in a way unless by accident or something like that.

I think of it is as nearer than further away now.

I think at my age you begin to think in any case about the end of your life. I think that's natural with any sort of middle aged people. You know, you're coming to the end of your career.

You're coming to the end of, your children are growing up and leaving home and having their own families and you're not the centre of attention any more.

Death is in the picture really. Death is there in the picture and maybe that's not a bad thing. And it makes me want to plunge into life and be with people. And I think I actually get on with people better than I did before, strangely enough. And it's not something I tried to do.

There was just a need there and that has been one of the pluses that came out of it. I feel quite emotional when I'm talking about it because actually it was sort of like a gift that I hadn't expected from this dreadful situation.

At the same time I feel that the grief and sorrow has deepened my life. And I think that that, together with this wish to be with people and, I just absolutely love if someone asks me out to dinner.

Some women discussed the healthier diets and lifestyles they now led. Women also talked positively about the new friends they had made through having breast cancer. and some women had become involved in breast cancer fundraising or support groups.

Last reviewed August 2018.
Last updated August 2018.


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