Simone - Interview 4

Age at interview: 44

Brief Outline: Simone was diagnosed with breast cancer after finding a lump in January 2006. She had two lumpectomies followed by chemotherapy and radiotherapy because the cancer had spread to her lymph nodes. She is now on Zoladex injections and tamoxifen.

Background: Simone is a statistician, married and has two children. Ethnic background/nationality: White

More about me...

 Simone and her husband have two daughters aged 12 and 15. In January 2006 Simone discovered a lump in her breast and went privately to have it examined. It was diagnosed as oestrogen positive cancer after a delay and Simone had two lumpectomies to remove the tumour and DCIS. After the second wound had healed, Simone began two regimes of chemotherapy for several months. The chemo caused Simone to feel very unwell and sick but she did not find losing her hair a big issue.

 

Simone is very pleased with the private healthcare she has received and has found the support of a breast cancer nurse very valuable throughout her treatment. She is now on monthly Zoladex injections to stop her ovulating and Tamoxifen. She is considering having her ovaries removed when she has finished the two years of injections.

 

Simone is a statistician and does not bother too much with the survival rate figures for breast cancer because there have been considerable medical developments in the past twenty years. She does worry about the cancer returning but tries not to think about this.

 

The experience has had a positive side to it; Simone appreciates how much support her friends have given her and, for 18 months, managed not to get too stressed by small things. She has a strong Jewish identity and had an Orthodox upbringing. She keeps a kosher home and the family observe the main festivals. They are members of a Reform Synagogue which Simone feels fits in well with her beliefs.

Some people don't understand that even though her cancer has been treated, Simone's fear remains...

Is it still a big part of your life in terms of thinking about it?

It comes and it goes. With the first year after treatment was hard. It was on my mind every day. Now it isn’t on my mind every day and some days I even forget, you know, but this is the time of year when it comes back to me, because this is the time when I was going through all the investigations. And I got the official diagnosis on Valentine’s Day. So every year that’s a very strange day. We try to make it a positive day, you know, a day when I’m still here and as far as we know I’m free of cancer, so …

But yes. And also nine months after I finished my treatment, one of my very good friends was also diagnosed. So I have seen her go through it as well. But that was a positive thing for me, because I felt I could be there for her totally, whereas she and my other friends, had been absolutely fantastic, they couldn’t really understand, whereas I knew exactly what she was going through every step of the way. So …

And since then another friend, well she’s a friend of a friend. She’s a friend now, has also been through it. So … you know, when you see other people going through it, it’s obviously it’s on your mind. You can’t forget about it.

I don’t think so. I mean there are probably questions that nobody could answer, you know, I’d love somebody to be able to say to me, “Yes, we’ve got it all. You’ll be fine. It’s not going to come back.” I think that does bring me to something else which does annoy me. There’s a lot of ignorance out there and people think once you’ve been through all your treatment, that’s it, you’ve got the all clear, and why don’t you just get on with your life and forget about it. And I’ve even had that from a friend, not words to that extent, but she just doesn’t understand that there is a risk it could come back, and it’s a real risk, it’s not just similar to worry, and in the end you have to learn how to deal with that, and I do actually know somebody whose breast cancer is terminal, you know, she’s not a friend of mine, she’s a friend of a friend, and I know her to talk to, and I’ve seen her recently and she’s going through I think about her sixth course of chemo. But she’s been fighting that now for eleven years.

Simone decided to go privately for her cancer treatment. The care was excellent and 3 years later...

Did you think you were given enough information when you got the diagnosis?

 

Yes, I mean I think that was one of the benefits of going private. The breast cancer nurse there was absolutely fantastic and you know, she spent time with us after we had been told it might be cancer and explained the whole process to us, so any questions … And in fact we went back in the next day, so she could explain things in more detail, and we got used to the decision, but all the way through, her, and the other two chemotherapy nurses were fantastic. And having spoken to other people who’ve been treated on the NHS, I mean the treatment just doesn’t compare really, and I don’t think that’s any fault of the nurses in the NHS, there are just too many people to see, and not enough time, you know, these people have got the time to spend with you, and they’ve always been at the end of the phone. Even now, you know, nearly three years later, if I’m worried about anything, I know I can phone them up, and they will answer the question themselves if they can or they’ll speak to the oncologist and get back to me.

 

Can you give me an example of something that you would ring them up and ask them about?

 

Just, you know, as I say after the treatment your breast feels very different after the surgery. Things seem to be in a different place, and even with the radiotherapy, so I might feel something. Has that always been there? or is that something new? And I just go for reassurance. So that’s it. I pop in to see her. You know, you can just do that. Even after all the treatment, they’d say if you ever want to come in for a chat just give us a ring, and come on in.

 

Simone thinks she got better information and post-operative support by going private for her...

Did you think you were given enough information when you got the diagnosis?

 

Yes, I mean I think that was one of the benefits of going private. The, breast cancer nurse there was absolutely fantastic and you know, she spent time with us after we had been told it might be cancer and explained the whole process to us, so any questions … And in fact we went back in the next day, so she could explain things in more detail, and we got used to the decision, but all the way through, her, and the other two chemotherapy nurses were fantastic. And having spoken to other people who’ve been treated on the NHS, I mean the treatment just doesn’t compare really, and I don’t think that’s any fault of the nurses in the NHS, there are just too many people to see, and not enough time, you know, these people have got the time to spend with you, and they’ve always been at the end of the phone. Even now, you know, nearly three years later, if I’m worried about anything, I know I can phone them up, and they will answer the question themselves if they can or they’ll speak to the oncologist and get back to me.

 

And do you find the friends that you’ve got who are going through similar experiences that’s enough for you?

 

Well I mean. I think every case is different really. We’re all unique. It depends on, you know, the size of the lump, where it was, whether it’s spread, you know, the type of cancer. I had the ductal type, another friend had the lobular type, you know, and another friend needed herceptin because she was Her2 positive, so we all had very different experiences. We all had chemo, but their actual diagnoses were different to mine. They are all different.

Simone thinks support groups have their benefits but sometimes you need an expert opinion and a...

Have you got involved with any support groups?

 

Yes. I did start with, there are two local groups. One, I only went to once. They used to meet in each other’s houses. They were a lot older than me, and, quite churchy type people and I didn’t feel I fitted in. They were very nice but, I think for most of them their experience was many years in the past. So I didn’t find that terribly helpful.

 

There’s also a local group that met every month in a local community centre. I went to that about four or five times. And they were a much more mixed group and I did get chatting to a few of the women there and that was quite helpful. And also the [clinic], private clinic where I went for treatment about every four months or so, they organised an evening and invited all the women they had treated in the past, and I find them the most useful I would say. That’s only three times a year.

 

Why is that useful?

 

Because they usually organise something relevant. They’ll have somebody coming to talk about menopause, the symptoms, or they had a surgeon there to talk all different methods of reconstruction. Or they had people like Nicola Jane coming with swimming costumes and things like that. And plus it’s just an opportunity to see the nurses again, who you feel quite close to, and unlike the NHS there are only three people you knew you’d see through the whole of the treatment. So we did build up a nice relationship. It was quite reassuring to see them again, and just to see other women who had been through similar things. It just felt more cosy there.

 

Do you think other people may be getting that from forums? That they can ask questions on forums if they are a bit worried about something like that?

 

Well I think the trouble with forums is, you’re not getting an expert’s response, you’re just getting other people’s views, and I think people have very different experiences and somebody may have found something they think is another lump and they might perhaps that’s it, they’re worried. Somebody else could just respond, “Oh yes, that happened to me. And yes, it was cancer.” Well I don’t think that’s going to help this person, because theirs might not be. This friend who had the lobular cancer, she had a mastectomy on one side, and she felt something in the other breast. And then there is definitely a mass there and she had to go and have that investigated, and thank goodness it turned out not to be cancer, but the last thing you want to be told is oh yes, that happened to me, and yes, it was. So, I think, they do have their benefits but you’ve got to be careful. I think sometimes you can come off the internet feeling worse then when you went on. 

When she went through chemotherapy, Simone's friend provided practical help with the daily school...

When you say your friends, you had certain friends that were really good. What was it that they did that you really felt…?

 

Well one friend just took control of the practical side of it, because I wasn’t able to do school runs, and my husband wasn’t working local enough that he could stay at home to do it. And, you know, this friend and two other friends between them, made sure that somebody was always around to take my children to school and to pick them up in the afternoon. So that was, you know, a big worry off my mind. 

 

And they were there to talk to as well, but, I just, they can’t really understand, you know, if you haven’t been through it, you can’t really understand, you just know you don’t want it to happen to you, and you don’t want to see it happen to somebody else, but you don’t really know what the experience is like.

 

Simone was horrified to discover a lump in her breast on a Friday night as she had to wait for...

Well I first became aware of a lump in my right breast on the 6th January 2006. It was a Friday evening, and I was just horrified because it was a Friday evening and I wouldn’t be able to do anything about it to the Monday. That weekend seemed to last forever.

 

Did you check your breasts regularly?

 

Not really, sort of quite haphazardly and probably not thoroughly, and part of me feels I could have found that lump a bit earlier, but it was in quite an awkward place, where it was difficult to place, and I think I had been aware of something there, definitely a few weeks earlier, but I just thought I was feeling my rib cage. But that was the position I was in and when I felt it standing out then I could tell it was actually separate. You know, it was definitely in the breast.

 

And had you had any sort of lumps before that?

 

No, nothing that I’d need to go to the doctor about, and I’ve always had quite tender, lumpy breasts, you know, sort of premenstrual times, but nothing that concerns me, and this felt very different from how my breasts normally felt. It was very hard and irregular and it just felt wrong. 

 

Simone was sick the evening of her chemotherapy treatment and during the following few days she...

Was there any side effects that you found particularly difficult to cope with after the treatment you’ve had?

 

Well obviously the chemo was the worst. The first four courses of FEC they weren’t too bad. It was just the initial phase. I mean I would have the treatment in the afternoon and by the evening I’d been feeling quite sick, even with all the anti-sickness medication. And, I would usually be sick once or twice that evening. And then, that was the worst of it over really, and then the next few days you just feel a bit groggy, not yourself. And within a week you’d be feeling reasonably okay again. But that’s the treatment that also makes your hair fall out. So of course I had that to deal with as well. But that wasn’t too big an issue for me. I mean I knew it was going to happen. I didn’t try a cold cap. I didn’t want to go down that route and I had my wig already. And I was quite happy with my wig. In fact I had two in the end, so I could have a change.

 

And I had a friend come round on the day the hair was coming out in handfuls and I had already arranged with her that I wanted her to shave off the rest of my hair so I didn’t have hair coming off all over the place. And I put on a wig to open the door, and it was a very similar style to the style I had at the time. And she said, “Where’s your hair falling out? I can’t see.” And she thought it was my own hair so that was actually quite positive. So I didn’t really worry about that side of it.

 

The second course of treatment, the Taxotere, was much harder. It was very misleading. You’d have the treatment on the Thursday, be feeling absolutely fine. Just a bit spaced out with the steroids until about the Saturday evening, and then you felt like you’d been hit by a truck basically. Just aches all over. Totally lifeless. I think I hallucinated at stages as well. It was pretty horrendous. But that was probably just for two or three days at the most. As I said that was the hardest stage. 

 

After surviving breast cancer, Simone decided not to get 'stressed out over silly little things'...

Have you changed any part of your lifestyle, sort of the way you’ve lived your life as an outcome of this experience?

 

One of the main things was the way I treated certain people. I really found out who my true friends were at that time, and they were absolutely fantastic. But there were a few people who I felt just weren’t there or went out of their way not to be there as such. And I, I, don’t need them in my life [laughs]. I mean they weren’t close people that I saw that much of, but I just thought well no, you know, if it had been them, I would have been there for them. I wasn’t expecting them to do anything. Just the occasional phone call that sort of thing. And that was one thing, it did change how I related to some people.

 

And also to start with, I decided I wasn’t going to get stressed over silly little things anymore, you know, just be thankful to be alive etc. And I kept that up for about eighteen months which I think is pretty good going [laughs] because I do get stressed quite easily.