Maisie - Interview 19

Age at interview: 51

Age at diagnosis: 51

Brief Outline: Maisie was diagnosed with invasive breast cancer and DCIS. She had a double mastectomy, immediate reconstruction and chemotherapy. She will also be having radiotherapy and hormone therapy.

Background: Maisie is a married child minder with four adult children. Ethnic background / nationality' Jamaican

More about me...

Maisie was diagnosed with invasive breast cancer in her left breast and DCIS in her right breast after her first routine mammogram in 2007 when she was 51. She was extremely shocked because she had had no symptoms. Her doctor recommended a double mastectomy and Maisie was told she could have an immediate DIEP flap reconstruction, which involved taking skin and fat from the lower abdomen to create two ‘natural’ breasts.

 

After surgery, Maisie had chemotherapy and, at the time of interview, was waiting to have three weeks of radiotherapy. Shortly after radiotherapy, she would be having hormone therapy. Maisie said she had been dealing with one treatment at a time and didn’t know which hormone therapy she would be prescribed. She was also planning to have nipple reconstruction. 

 

After surgery, Maisie came round in intensive care, a short-stay that had been planned beforehand, and had had hallucinations. Later she was transferred to the ward and was determined to eat well, do her exercises and be discharged.

 

At home, Maisie exercised every day, went for a walk every evening and ate healthily so that she could recover as well as possible. A few weeks after surgery, she had chemotherapy. Maisie said she felt extremely weak and tired for a few days after the chemotherapy and lost her hair, but was pleased she had not experienced most of the side effects she had been told about before starting treatment.

 

Maisie had a very positive attitude throughout her treatment. She said, ‘There is nothing to be sad about because they are trying to make you better and you’re still getting on with your life.’ She advised women to be as positive as possible, to eat well, exercise and attend for routine mammograms.

 

Maisie was interviewed for the Healthtalkonline website in 2008.

Maisie was scared to have a mammogram but the radiographer was reassuring, and she now advises other women to attend.

Well I got the letter in about September I think it was for me to go for… Well when you reach a certain age, I won’t say what that age is [laughs], between 40 and 60 [laughs]. I’ll say 45 and 55, they send you a letter to go and have a test for the mammogram and that’s when I went. I was, well I didn’t really want to go because I was scared – I can say shitless, can’t I? Right, I was scared shitless. But in the end I went [laughs]. I went and the lady there was very nice. She, you know, she put me at ease and we had a nice talk. And then she had a look, after the first mammogram. And I think maybe she found something but she wasn’t too sure what it was. And then she asked me to wait in the waiting room and I had to go back in after a while. And since she was satisfied.

 

So, anything else you would like to add before I switch off…

 

Go. If you get a letter, go. I know you’re scared. As I said, I was scared shitless. But you have to go whether there is something or not. And during all the treatment, keep your spirit up because they’re doing what they can to help you. They’re doing the best for you. So I don’t really see a downside when everybody is trying to help you.

Maisie had both her breasts removed and reconstructed at the same time. She was happy with this decision because she was concerned to have all the cancer removed.

They said the first one, they said they found cancer in this one. And then in the right hand one now they found, well I call them sparks. It’s just tiny, tiny little bit of stuff, maybe a pinhead. And it was just like to me sparks coming off it. And they found that and then I had to come back another two weeks because I had to lie down on the table for them to put some needle in.

 

But, as I said, once they’re doing something to help you, you have the patience. You just get on with it while they do the work, you’re like, you do, if they say move here you move there. You just do it because they are here to help you, they’re here to find out what’s wrong.

 

In the end they found what they wanted to find. And then I had to go and have a scan because they wasn’t so sure how far the cancer in this one had gone. So I went on to have a scan and they found what they wanted and then I went back and they explained to me what it was. They did find really cancer in this one, it was one of those ones, it wasn’t a lump, it was a spider. And I didn’t know that, all I keep hearing is women should check her breast for lumps. Nobody said there was another version of it because during this time I wasn’t sick. I didn’t feel any pain. I felt nothing. So I didn’t know there was anything wrong with me until, you know.

 

When they gave you the diagnosis, first did they tell you there was breast cancer in the right breast? And did they say there was DCIS in the left at the same time or different?

 

Yeah, at the same time. At the same time. Because that’s when the specialist, we went to see the specialist and they told us what it was.

 

So did, when they said on the left side there is DCIS, had you ever heard of this?

 

I had never heard of it, I didn’t know what it was. Didn’t know until he explained to me that it’s, what did he say it was? He said it wasn’t cancer but it could, maybe in the future it could turn cancerous or it could not. So the best thing that they could do is just take it out. So I said just go ahead. You know and just scoop it out and just make my breasts bigger [laughs].

 

So did they do a mastectomy on the left breast or did they just take out the bits that needed to be taken out?

 

No, they took, they did a mastectomy on both of them. Both of my breasts I had a mastectomy.

 

Yeah. And when they told you about the surgery, did they suggest that you should have a mastectomy on both breasts or did they say there was any other surgery possible?

 

No, they said that they were going to do a mastectomy because when I went there first and I did say to the nurse that, if anything, I’d rather just have everything scooped out instead of them taking a bit of this and a bit of that, I just want to get everything scooped out and then just rebuild. And that’s what they did. They just scoop everything out. Because the doctor told me that they were going to do a mastectomy in both breasts at the same time. And then reconstruct it at the same time. So that’s what they did for me, which I thought was really good. Excellent.

Maisie didn't have most of the side effects she had been told about, though she felt tired after treatment and lost her hair. She ate healthily and felt positive about having the treatment.

When I started my chemo, after the doctors told you what would happen but they had to tell you anyway. I didn’t really have anything, you know, nothing really bad happened. The only thing I had really was when you had a chemo, I had a chemo on the Friday. Saturday, Sunday, Monday they give you some tablets to make you stop feeling sick. Those are the tablets that really make me feel really, really awful. So for three days I felt really terrible because of the tablets.

 

And then Tuesday and Wednesday, when the tablet, because you stop taking the tablets your body just feels really weak. And, you know, you just feel, I call it, although I’ve never take ecstasy, see the finger, although I’ve never taken ecstasy [laughs], I call it my ecstasy woozy day. Because Tuesday and Wednesday I just felt really woozy and, you know, my body felt drained and everything. But I still went walking [laughs]. But what I did, I took the bus route so if I was, if I felt really, really bad then I could just take the bus, then I could just take the bus back.

 

And then after that, you know, Thursday my body just, I can feel the change. My body just felt, all of a sudden my body felt the change and my body started coming, you just start coming back up.

 

And after that I just kept eating the stupid food, the carrots, the leeks and everything. Fish and stuff like that. And my body, from then on my body just went up and up and up. And that’s it, get ready for the next chemo. I didn’t have, thank, I didn’t have any of those. Oh, the only thing I had, I’m bald which everybody is bald and this is my nice wig but I’m not talking it off to show you what I look like [laughs]. And I have no hair on my body, my eyebrows, my eyelashes have gone, which everybody does. But I’ve got my eyebrows, which is surprising. I’ve still got my eyebrows. And my nails go black so I have to wear nail varnish. And my hand, you see this little black spots on my hand, that’s part of the chemo and stuff like that. And my foot, the bottom of my foot is really, has got black spots all over. My body is a bit darker. But I’m thinking, I said to myself, “What the hell? This is just to make you….” You know, you go through all this, you know there’s an ending. It makes your body get better, so you just go through it, get on with it and that’s it.

Maisie says that, although she had a double mastectomy and other treatment for invasive breast cancer and DCIS, she still feels positive. She advises other women to eat healthily and exercise.

What I’m saying to the woman and everybody that is going through it, they found the cancer early, they took it out. They reconstruct me, you had the operation, you went through the chemo. There’s nothing to be, even if you have the chemo, you have the radiotherapy and everything, there is nothing to be... I look at it, there is nothing to be sad about because they are trying to make you better and you’re still getting on with your life. And that is the way I look at it, you know. That’s why I’m not, you see I’m laughing and it may look like I haven’t had it. I haven’t had a bad experience but I have had two breasts where the cancer was in, maybe not in the left, in the right hand because, as I said, this, that the dc thing, stuff it could either go that way or this way. It could have been cancer or it couldn’t have been. But I’ve got two, I had two mastectomies. You know, and my stomach and it’s still not better yet, my stomach still isn’t better. But you just get on with what you have to get on with and make yourself, you know.

 

Help it along, eat the right stuff go, on walks. Do a bit of exercise. You know, even if you go to work you can still go when you get home from work. Because when I used to work, I used to finish at 7 o’clock in the evening I still used to go for walks. And this was in the winter. My friend and I, up the road, go for walks, you know, just to keep yourself fit.

 

So at the moment I can’t see any down side to it, I just cannot. You might say, “Oh, you haven’t had my experience, you don’t know what I’m going through, you have your husband for backup.” But even if I think, you must have somebody, even if I think I didn’t have my husband I would, I still wouldn’t see, apart from having the cancer which is a downside, I still wouldn’t see a downside because I’m getting the treatment and I’m getting better. You know, and that’s the way I look at it. So all I can see is a positive side to everything. I think that’s all I have to say [laughs].

Maisie knew the doctors were doing tests for her own good but would have liked the results sooner.

I had to go back and I had to, there is this flat table, that is so embarrassing. I was a bit chubbier than this I must say, and you had to lie down on the table like a piece of meat and your breasts went through this hole. And then the doctor’s went “Well, …” maybe they had a crooked back by the time he was finished, because he was under the table putting the needles in to find it. But, you know, I lied down patiently and I know I keep saying but during all this they were just doing it because they know what they are looking for and they are trying to help you. You know, so that they then can give you the treatment and stuff and things like that.

 

So I went there on the day on Wednesday, I think it was in October or November, I can’t remember when it is. My husband and I went. And they said, “Well …” They still couldn’t find it any way because it was way back over there. And we spent about seven hours in hospital and they looked for it. But it was all right because it was for my own good and, as I said, they were doing something to help me. So we stayed and we waited patiently. And eventually they found what they wanted. And the most crappy thing is they said, “We won’t know until two weeks”. I’m thinking, “What the hell.” They have found something and I know I keep saying hell a lot [laughs]. They found something. They knew what they were looking for. You know, why not say, “Come back in about a week”, instead of two weeks. That two weeks is a hell of a lot of time.

Maisie looked after herself before and after surgery by eating healthily. She did lots of exercise and went for a walk even if it was cold.

I came home I had to sleep on the sofa because I couldn’t sleep upstairs in bed because I couldn’t lie down flat because of the cut and everything. So I ate all the food that you didn’t think of eating, like carrots and all of that rubbish which is good for you. And spinach I had, you know, because during the day I had spinach, carrots, leek, fish, everything in the same stuff so that my body can get. I didn’t eat any meat or anything, just fish. I ate a lot of fish and a lot of spinach and yoghurt. And noodles and stuff. I don’t think I’ll eat noodles after this. But I still have to eat it now to get my body ready for the chemo.

 

And I think I came out on Boxing, I think two days after that we went to get my husband, this was in the night. Because I didn’t want to see anybody, anyone you know, because I didn’t tell anyone on the street that I was ill. So we used to go walking about seven o’clock at night, this was in the winter. And I used to take my time, you were just walking up the road, just for me to get some exercise, you know. So we’d do all that for, and I came out on Christmas day, we did all that walk up and down the street, he [husband] takes me when he can, you know, because he took time off work, which is really good. His bosses allowed him to do that. And walk up and down all, oh that was, even when it was snowing and raining.

 

I just wanted, I just had to get out because if you don’t get out you just get into a rut, you know. And I used to get up the same time in the morning, at 7 o’clock, because that was my routine because of my work. I’d get up at seven o’clock. And I’d just get up and get on with it, it’s just what I have to do.

Maisie had a double mastectomy and both breasts reconstructed at the same time. She found it difficult to walk on her own at first but was determined to get well and be home for Christmas.

I was, went in on the 19th, I had the operation on the 20th and I was out on the Christmas Day. Because I said to myself I’m not staying in for Boxing Day, I’m going home for Christmas [laughs]. So what I did, what you have to do is eat everything they give you and get your family to bring stuff in for you as well. So I ate the breakfast although I wasn’t hungry, I ate lunch and I asked my family to bring in tomatoes and olives and stuff for me to eat in-between. So by the second day, I couldn’t get up but the third day I made myself get out of bed. And I was walking about and everything, you know, go take a shower by myself.

 

But some times you have to have assistance because I had a cut, I had a caesarean to build the breast. Look at my breasts, big breasts [laughs]. I had a caesarean and they built my breasts for me which was really good [laughs]. And, you know, you needed help because you had all the drips and everything. But in the end I just got them to give me some bags. And I had one drip in this hand. Sorry I had a drip in this hand with two drips hanging out and then I had another bag, Marks and Spencer’s bag. So you should have seen me bending over because I had a cut and I couldn’t walk straight. I was walking like that when I was going to the hospital, going to the toilet. And taking a shower and then you know but I’m thinking, “What the hell, I want to get out so I might as well get up and do what I have to do instead of sitting in bed. And if I want to get out I eat the food”.

 

And the food was very good, the caterers and the nurse and everybody was really nice. And I just, you know, I was out on Christmas Day and that was really, really, really good.

 

And you had Christmas with your family at home?

 

Yeah. Everybody waited for me to come because if I didn’t come out they would have brought the food. And I said, “I’m not having them bringing the food and everything”, so I just get myself ready and everything. But the good thing, as I said, the plastic surgeon said I could be out on Christmas Day and I didn’t know that. So I just made myself get better and I was out on Christmas Day. And, as I say, that’s good but I was thinking, “What the hell? That’s not good.” I just wanted to get out of the hospital.