Gillian - Interview 49
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Gillian attended follow-up appointments every six months. At one of these appointments, in 2007, she was given a mammogram and DCIS (an early form of breast cancer) was found. Gillian, then 53, said she ‘was dumbfounded. It was the last thing I expected. I really had felt quite positive after the first time that it’d been seen to, it was finished. I’d had clear margins. And although I wouldn’t say I didn’t think I couldn’t get cancer again, I really didn’t expect to get it in the same place, which is where it was.’
This time, Gillian had a mastectomy and an immediate LD flap reconstruction. This involves moving a large muscle and some overlying fat and skin from the back of the body to make a new breast. Gillian had to decide whether she wanted to have reconstruction on the same day as she was diagnosed with DCIS and felt a bit rushed. She later had chemotherapy, which was a difficult experience because of the nausea and vomiting she had. She caught a viral infection shortly after chemotherapy and went into hospital for a week.
Gillian was prescribed tamoxifen for two years, followed by Arimidex. Six months after taking Arimdex, though, she was diagnosed with DCIS and had to stop taking it.
Gillian has lymphoedema, which she said she has found more difficult to deal with than having cancer because it is ongoing. She was happy with the care and treatment she’d been given and had a lot of support at home from her husband.
Gillian was diagnosed with DCIS at a follow-up appointment in which she was given a mammogram.
Gillian was diagnosed with DCIS at a follow-up appointment in which she was given a mammogram.
Went every six months for my check up and, in May 2007, I went back down again to see, it was with like the surgeon, because it goes one time it was the oncology team, next time the surgical team. So I saw one of the surgeons and they’d asked me could they sort of use me if you like to take some photographs to show other women that, you know, having a lumpectomy really doesn’t have to make a great deal of difference. Which it didn’t, the work they did on that was amazing. I think I had a tiny little line and virtually no indent.
So I said, “Oh yes.” And then he said, “Oh, have you had…? When was your last mammogram?” And I said, “Oh, over a year ago.” And he said, “Well while you’re here,” because it’s quite a long journey, he said, “I’ll give you a slip of paper. Go and get it done.”
So we went along, sat around a little while, and then I went in. They did the mammogram on each breast, and then she left me sitting there. And I didn’t think too much of it, but then she came back in and said, “I’d like to take another shot.” So she took another shot and again I was left sitting a little while, and then she brought a doctor in. And I thought, “This doesn’t look very good.” So she said, “Get dressed.” I went out to [husband’s name] because by this time he again, bless him, he’s getting like paranoid. And they said then, they called us in and said they thought I had something called DCIS. Which was not a tumour but was like, almost like pre-cancerous.
I was dumbfounded. It was the last thing I expected. I just, I really had felt quite positive after the first time that it was, it’d been seen to, it was finished. I’d had clear margins. And although I wouldn’t say I didn’t think I couldn’t get cancer again, I really didn’t expect to get it in the same place which is where it was.
So again I think it was in about two or three days, I went for a biopsy. And then we were called back and I was told, yes, it, it was definitely DCIS, and because I’d had cancer only two years previously they recommended a mastectomy and chemo. So I think I trusted them because they’d been quite straightforward the first time and said, “You know you don’t need chemo.” And this was like the same doctor saying, “No, really this time I think you should have it.” So I did.
I had a mastectomy and reconstruction done at the same time.
Gillian never thought she'd get cancer in the same place again. This time she had DCIS.
Gillian never thought she'd get cancer in the same place again. This time she had DCIS.
The first time I truly thought they’ve fixed it, I’m fine, I’ll move on. Always you know realising that yes, in some, I could get secondary cancer somewhere else, but you know, that was not something I was going to worry about. I would be literally done with it.
When I got it back the second time, because it was in the same place, I think that’s what threw me. I’d never dreamt for a minute I would get it back in the same place. So that’s what threw me and then the fact that it was a different cancer, and it’s like, I didn’t even realise you could, you know, that was something I hadn’t sort of cottoned onto the fact that it could come back in exactly the same place but be a different type of cancer.
And that made me think is there something, you know is it going to pop up somewhere else? That has never actually gone away, although it’s not something that I worry about. It’s just now and again I think, “Oh,” you know. And especially when you read stories of people that have been sort of free of cancer for such a long time and then wallop it comes back.
Shortly after the end chemotherapy Gillian caught a viral infection and went back into hospital....
Shortly after the end chemotherapy Gillian caught a viral infection and went back into hospital....
I finished the chemo on 28th December and it was something like the 4th Jan 2008, as I say my hubby got ill and I caught his vomiting bug. But I truly, that was probably the worst I’ve ever felt. I could have lain on the bed upstairs and said, “Oh just put me to sleep.” I just felt so awful.
Did you go to A&E?
No, because I’d been having the chemo, they gave us a phone number like an out of hours number, which actually was to the main hospital in [remove place name]. And I think in the end [remove husband’s name] rang, it was about one o’clock Saturday morning. And we’d bought a temperature gauge because that was one of the things to keep track of with the chemo, to make sure you don’t get infections. So we’d sort of monitored my temperature. So he knew that my temperature was high. So when he rang and gave the temperature and sort of the fact that I was, you know, feeling ill from both ends. It was like, and they said, “Bring her straight in.”
So we drove, I got to the hospital about 3 o’clock in the morning. But again we were just getting on the bed and it was like, “Oh just let me go.” I felt so awful. So I was in for about, I was probably in there for I think about six days. But I just felt so ergh, awful.
I went back to work, then the beginning of March in 2008 and, from one aspect, apart from one viral infection, I think it was almost 20 months before I have had a day off sick. So that was, like physically, I recovered well I suppose. Yeah.
Gillian had very bad hot flushes with tamoxifen but no side effects with Arimidex. However, she...
Gillian had very bad hot flushes with tamoxifen but no side effects with Arimidex. However, she...
To my mind, I’d sort of felt I’d recovered really well and then the only sort of after effect was I had to take tamoxifen every day.
When did you have to start the tamoxifen?
That was quite quick afterwards. They put me on, I think again once they’ve been through like pathology, and they’d worked out it was, oestrogen could affect it, then they put me on that.
So that was before the radiotherapy?
Yeah.
Before the radiotherapy,
I started on that, yeah.
How did you feel about the tamoxifen? Did you have any side effects or hot flushes?
I did, I eventually, and for the life of me I can’t think of the name of it, I took it for probably over a year. But I got terrible hot flushes, which I thought was still maybe a leftover from the menopause. And I think it would have been towards the end of 2006 on one of my regular visit’s I happened to mention that, you know, it’s miserable going, I just, it was making me miserable and that. She said, well it can be a side effect. And then changed it, but I can’t, but I was only on them say for a little while before I unfortunately got the cancer back. But they did change it and then I was fine.
And what did they change it to?
I can’t remember the name also?
Was it Arimidex?
Yes. That’s it.
Arimidex.
Yeah Arimidex. Yeah. And I had no problems whatsoever on those.
No side effects at all?
No.
No. And you took it everyday, and there was...
Yeah.
...absolutely nothing, the hot flushes?
They went.
How long did you take the Arimidex for?
It probably was only about six months unfortunately. I wish I’d been taking it, it would have made life easier if I’d taken it longer. No but it was quite, it was like the last part you know before I found out I’d got the cancer again.
Gillian's husband told other people that she had cancer. When she spoke to them, they already...
Gillian's husband told other people that she had cancer. When she spoke to them, they already...
The first time the only person I think I told was my boss because I’d told her I had to go back to the hospital for the results. And I phoned her and said, you know, but I honestly think I got [husband’s name] to tell everybody else mainly because, and also the second time, the second time probably more so. Not that I minded talking about it, but I thought if I tell them its like, “What are we going to say to her?” So at least by [husband’s name] talking to, telling them, then I mean obviously I did speak to them, but they’d had time almost like to get used to it. Because I thought if I ring them up and say, especially “I’ve got cancer again.” They’ll be like, “What?” you know.
So I think the only person I told the second time was [friend’s name] because I was seeing, I saw her after I’d had the biopsy. And I think we went out actually, had gone out for an evening. And I told her that I might, you know, have it again. And of course she ends up in tears, and I’m like, and that’s what I think I didn’t want. So in general, on both occasions I felt it was easier for me and I think easier for them that [husband’s name] told them. Because then they could sympathise with him, but they sort of got themselves together before they spoke to me.
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...
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.
Gillian felt slightly rushed into deciding whether to have breast reconstruction at the same time...
Gillian felt slightly rushed into deciding whether to have breast reconstruction at the same time...
I was called in and they said, “Oh no, it is like cancerous. And because you’ve had it previously, you know, the recommendation this time is for a mastectomy and chemotherapy.”
So it was, I wouldn’t say, I can’t say I felt rushed, but they straightaway were talking about reconstruction. And I think it was almost, it was there and then that day to decide do you want reconstruction, sort of thing. And I think part of it was they were, they wanted to have some idea, because I mean they explained to me it means that you have to have two surgeons and the length of time you’re in the theatre, it’s you know, “And we’d rather do it sooner rather than later.”
So, as I said, I had complete faith, and the fact they said this time I’d need chemo etc, and they were recommending a mastectomy, I thought well the first time they were, you know, they were sort of very much you know what I wanted. And I felt that if they were recommending that, then I really, that’s what I should go for. So I said I would go for a reconstruction.
I hadn’t really looked into it [breast reconstruction] in any great detail. I just thought well, I didn’t know, oh they showed me some photographs. And I didn’t sort of think, “oh you know that’s definitely what I want.” But I thought as well, “If I have a reconstruction, at least when I’m dressed it looks, everything looks normal.”
And I thought, the reason I decided in the end I’d go for the reconstruction was because I thought if I don’t have the reconstruction now, you know because they explain if I have it now they would keep the actual, a lot of the skin they would keep, whereas with afterwards it would be a bit more of a job to do things. And I thought, “If I don’t have it done now, even if I’m really unhappy, would I choose to undergo quite extreme surgery again?” And I wasn’t sure that I would. So that, in the end, decided me to go for the reconstruction.
And they did explain to me that it could fail, that with the reconstruction it needed a really good blood supply. Because I had the one where they pull it round from your back. And they said it needs a really good blood supply. So they can fail. But I thought, “No, we’ll go for it sort of thing.”
For Gillian, having lymphoedema is harder than having cancer because it is ongoing. She finds it...
For Gillian, having lymphoedema is harder than having cancer because it is ongoing. She finds it...
Did you have lymphoedema at all through all of this?
I’d thought I had a touch of it before I went for the second operation. And now, I do have it now. Yeah, I do have it now. And I would say probably the lymphoedema bothers me more than the cancer bothered me. Because the cancer, I still have this thing that they can cure it. This is like an ongoing thing that…
Can you tell me a bit more about the lymphoedema, for any women who will be watching say for…?
Well the only, I think it’s, I mean a lot of it’s vanity I have to say. But I find now that certain blouses and jackets that I’ve got, I can’t wear anymore. And I know I should just accept things, but I get really frustrated by it. And it’s a bit, what I have found, and as I say it’s something I didn’t realise before with this reconstruction, because they pulled the muscle from your back. If I carry or like use a pulley in my left arm, I get backache on the right hand side. I suppose it’s the way your muscles work. But of course you’re not supposed to really carry anything or lift things heavy with an arm with lymphoedema.
But to be honest unless you’re, if you don’t, you know, you’re sort of like a little doll going around, you do use your arm and things. I think it’s just, it was something I could’ve done without and, as I say, it’s the little things that sort of make me feel unhappy or trigger me to feel bad. And the lymphoedema was just like, “I can cope with the cancer, why have I got to have this?” It’s like, that was a bit like, “Why me?” You know I don’t want it and it’s just the fact that it doesn’t actually ever get cured, so you’ve just got to be careful with it. And I mean, touch wood, mine seems to be sort of like stable, even though I don’t, I have to say, you know I’m not good at not using my arm and things. But you’ve got to sort of balance, I can’t keep using like one side all the time.
Were you given any advice on this?
There’s a very good lymphoedema clinic here, so I do, I go to see them sort of once every six months. So if I’ve got, if I get myself in a flap so I think, “Ah it’s getting bigger,” you know, I phone up. I’ll make an appointment, I’ll go down and they measure it, it’s like, “No, it’s not getting bigger you know.” Get a grip.
It’s just…
Did you hear anything about massage or anything like that?
I’ve got a sleeve that I can wear. I mean I have to go back to them because it’s really weird, and I’m quite tall and I’m not necessarily dainty. But I’ve got very small wrists and the sleeve they give you, none of them quite fit my wrist. And the size that’s smaller is too tight here. So they’re going to, talking about maybe getting a special sleeve fitted. But no, you can do like the lymphatic drainage, they show you how to do things like that. But it’s the sort of thing, if I get a bit sort of like fed up or down, it’s almost like I don’t do the drainage. And it’s like, I know I should but you just get into that, “Oh I’m fed up with it.”