Interview 22

Age at interview: 23

Age at diagnosis: 19

Brief Outline: Diagnosed in 2000 with Ovarian Cancer; had surgery and both ovaries were removed. It was followed by chemotherapy. Experienced the menopause at the age of 19. Currently having Hormone Replacement Therapy. In remission

Background: Dancer; works full time with a dancing company. During her chemotherapy treatment she continued with her university studies and lived in student accommodation. She is currently living with her parents.

Was thought to have IBS after she was infected by a parasite in Nepal, but it turned out to be...

How old were you when you start noticing?

Noticing the symptoms, well I, when I was about, I was just seventeen and I went away to Nepal, and I came back with a parasite called Giardia, which sort of affected, which is a parasite which lives in the small bowel, and so after that for a long time I had Irritable Bowel Syndrome and I had, went off for a few tests, like a Colonoscopy and that sort of thing, and they, they sort of said, 'Oh obviously the Giardia's sort of made Irritable Bowel caused sort of Irritable Bowel Syndrome'. So that was sort of really, the, initial thing, within what happened and then I went to University and I started University in September of 1999 which I would have been eighteen and for my first year at University I was fine, I had a nasty, like in hindsight I had a nasty cough,

For, for the most of my first year because it's first year at University you sort of think, 'Oh I'm tired, it's Freshers Flu, it's'. You know that kind of thing, and, and I had some problems with the Irritable Bowel Syndrome but really nothing any, anything major at all, I didn't sort of take any medication for it anything like that so it, so it just, just let it all be then I came home for the summer by this time it was the summer of 2000, and I was working just part time over the summer before I went back to University, and just one night after my, it was must have been just before my nineteenth birthday I had these sort of really nasty stomach pains, it was sort of almost up under my ribs, it'd sort of feel kinda like cramps almost that would come and go every few minutes, it was just overnight really, kind of unpleasant but by the next day I was feeling fine again and just assumed it was a bug or whatever and went back to work. And then six weeks later, I had the same sort of cramping pains and but that time I was also really violently vomiting and this was during the night as well and it sort of kept going and by the morning I was sort of really exhausted and had nothing left so we called the Doctor, just thinking I must have a bug or something and so she came out to see me and sent me to the hospital for an ultrasound scan with suspected gallstones and she sort of said, 'Well I don't really think you've got gallstones but, we could we should try, try and check for everything'. 

Her parents and the consultant broke the news in stages that surgery had removed her ovaries, and...

At that point they, they, Mum, well my parents and my Consultant had decided that it would be best to break the news to me in stages, so they, the day after my surgery the Surgeon explained that it'd been more complicated than they'd expected and they'd had to remove both of my ovaries so, I mean which was, 'cos people often say, “Oh, you know, that must be really hard to deal with”. But I think because I was concentrating so much on getting better, and kind of getting over the surgery, that, I, and I was sort of very sick and that kind of thing so, that it was sort like, “Ah just gotta get on with it and get better”. And I'd never really particularly aspired to having a big family or lots of children or anything and I was very career-minded at the time so, so I wasn't too worried and then during that night my Mum stayed with me in hospital and... and we sort of talked about the possibility that I could have cancer and that, you know, what, what I do if I did? And that sort of thing. And so when the Surgeon came in to see me the next morning and he, he walked in the door and I said, “Have I got Cancer?” And well he just said, “Yes”. 

And then we sort of talked about what would happen next and he explained that I would probably need Chemotherapy and that, that he'd, he had contacted one of his colleagues and he would come and see me and all this kind of thing and it was all sort of quite practical, there wasn't I mean I remember, I wasn't sort of able to really cry or, because of the incisions in my stomach, and the stitches, and because I had so many drips and drains and face mask, and a sort of a tube, tube down into my stomach and that sort of thing, there was there was much paraphernalia, that I couldn't really have a good old cry or anything so it was more I just kind of sat there holding Mum and Dad's hands on either side of the bed and it was just sort of, “Okay now what, and now that happens now? What do we do?” So it wasn't a sort of, I always think it must be very difficult for people that are rung up when they're sitting in their lounge on a Friday night and they're told this news 'cos they don't have anything else to concentrate on, but I think when you're that sick, then you sort of, and you're recovering from major surgery, you sort of, you're too busy getting well to worry about what's going on so.

Did they know at that time which type of Cancer?

They knew it was Ovarian Cancer.

Thought that she was having an ovarian cyst removed. Her mother had to sign permission for the...

So I went for an ultrasound scan and this was this would have been about six weeks after my nineteenth birthday so I went for a, the ultrasound scan and then that evening after I had the scan the Doctor, my GP called at the house to say that they'd found a large ovarian cyst or what they thought was a cyst and it was about the size of a small melon, and so because of the size they'd have to operate and remove it 'cos it was sort of over a certain size so, then I went and was referred to a Surgeon at the hospital, a Consultant Surgeon for Gynaecology, so I was referred to him and then sort of literally a couple of days later I was going in for my surgery and before that they did blood tests to check something called the CA125 which is like a marker of any disturbance in, in the Gynae kind of region.

And also did an ultrasound scan and discovered that I had a cyst or what appeared to be a cyst on my other ovary as well. So the Surgeon explained to me that they would have to remove one of my ovaries, so I signed permission for him to do that and that they would just drain the cyst on the other of my ovaries, so I went into for surgery on Wednesday the, I think it was a Wednesday, the sixteenth of August 2000 and when they started the surgery it sort of become apparent that it was more complicated than they had expected [laughs].

And they took a frozen section out and diagnosed that it was Ovarian Cancer so, they, so they removed and they had to contact my Mum and ask her for permission to remove both of my ovaries 'cos you have to give signed permission, so whilst I was still in surgery they contacted her and explained the situation. I also needed a re-section of my small bowel 'cos the, the Cancer had kind of stuck to the bowel and that's why I had the symptoms of Irritable Bowel Syndrome because my bowel had been obstructed by the tumour. Which is also why I'd had the, the vomiting, and the pain, and that sort thing 'cos it eventually, the bowel had been sort of squashed so it, it couldn't, it couldn't, no longer work so they asked her if they could do a bladder re-section, a bowel re-section and remove both my ovaries, so, I think she made the right decision [laughs] and said, 'Yes'. So they went ahead and finished off the surgery, so I was, I think I was about seven hours in surgery in the end. And then, yeah, and then I sort of, I mean I woke up and I was so very, because I had no idea, I thought I was going in just to have a, ovarian cyst removed so, so I sort of didn't wake up expecting anything or worried about anything really, I was just aware that I was very drowsy and obviously had a lot of morphine on board so it was all a bit, bit, bit blurry but I also had a feeling, because they'd explained to me that if things were more complicated, then they'd have to do incisions both, both ways, a bikini line and an incision from my belly button down and they explained that if it was more complicated they'd have to do that and I therefore have a, a epidural with morphine. So and I was kind of aware that I had that so I was sort of, knew some must be a bit, a bit wrong. So and I was kind of aware that I had that so I was sort of, knew some must be a bit, a bit wrong. But, but I sort of felt alright, the first night was very tough 'cos I felt so ill, [laughs] and I overheard a nurse talking on the phone and asking for help, because she couldn't look after me on her own. So that was quite frightening, but I was still sort of I thought I was okay so it was fine.

Thought her doctors didn't always tell her everything she needed to know because they knew her...

Tell me and regarding doctors about your communication with them. Did you find it easy to communicate with them, did they explain thing to you in an easy to understand manner?

Yeah I think they're very aware, aware of that these days, sort of really making sure you understand and putting it straightforwardly. I think without having my Mum know so much about everything was an incredible help, I think in some way it was a bit of a hindrance 'cos they wouldn't necessarily go into every detail or because they knew that I, you know, that Mum could explain or that sort of thing, but I think generally the one think I find difficult to communicate with them is the, the kind of hormonal side-effects and, and things like that, and because also with, with Consultants when you see them you're very aware they're incredibly busy people and sometimes the smallest things is actually very important or can be important to you but you sometimes feel a bit like, I can't tell you everything 'cos, 'cos you're so busy and you have to dash off and see a million other patients, so, I think that's one thing that's quite a challenge in communicating yeah.

I've been very lucky 'cos my Consultants are both kind of, on hand and willing to, willing to help out or because I was up at University they'd sort of say, 'Oh just email if there's any trouble or give me a ring at home'. All that kind of thing, so I was very lucky that were both very supportive and were keen to, were keen to help me stay at University and that kind of thing communication wise it can be a bit, a bit challenging.

Yeah?

Just, just 'cos and I think as well, in some respects because I am so young and they might be used to dealing with menopausal women of fifty, I mean it's sort of like they don't necessarily know how to approach it they don't want to embarrass me or and I think sometimes they feel more embarrassed than I do [laughs]. I don't know, I'm sure they don't but you know? I think that, that comes across, but it is quite a challenge sometimes.

Hair loss turned out to be less of an issue than she anticipated since she had several other side...

And any side effects?

Yeah, quite a few [laughs]. I mean I was, I was very lucky I didn't get any nausea, well I had nausea but not, not real vomiting. There's so many isn't there? [Laughs] it's like [laughs] endless. Yep lots of mouth ulcers, and asthma, hair loss obviously, general tiredness and sort being really prone to lots of infections. I was also living in a student flat that wasn't incredibly clean and didn't get the greatest nights sleep and that sort of things so I, I tended to find I'd, sort of a get a sore throat and a crazy temperature and, I ended up sort of back in as an in-patient a couple times 'cos I got infections and that sort of thing.

The steroids were, they, they do have quite a pronounced effect actually with sort of the, flushed cheeks and getting a bit podgy and a general kind of a bit, putting on a bit more weight I think, I think part of that is also related to, well the steroids make you so peckish, I used to wake up at four in the morning and be like, 'ooo' [laughs] off for biscuits or something, and I also found with, with while I was having chemo in general I'd put on a bit of weight because I think, you feel so, I felt so lucky to be alive and to be here, that you sort of, you feel like eating what you want and it's like 'Oh you can eat a whole bar of chocolate [laughs] I'm alive' [laughs]. Or because the chemotherapy made my mouth taste quite metallic, and so you'd sort of be, you wouldn't fancy certain things like bananas, I went right off bananas, but like spuds and pineapple and there were certain things that just tasted really good so, you sort of, you tend to eat, this was like the crazy diet I must admit but other side-effects? 

When did your hair start to fall...?

To fall out? Almost immediately sort of a couple of weeks after my first chemo I think, and it was, I had extremely long hair, it was sort of well past my waist so and I was very, very used to it and but I think, I mean if, if I'd just lost my hair, strangely I think it would have been more difficult to cope with, because there was so many other things going on there was so many other side effects I was worrying about and it seemed like such a minor thing almost, to... because, you'd sort of, been through this big operation and there's so much to get through that it's like oh hair loss it's just another thing, you know [laughs], it's a bit chilly [laughs] yeah.

Have to wear a woolly hat?

Yeah and I and I had scalp cooling as well so it didn't lose all of it but was very thin and quite obvious but yeah it was the middle of winter by the time I was sort of, really thin, so I could wear a woolly hat and yeah it was fine it didn't really mind, I didn't really mind at all. And it just seemed like another, part and parcel, it would just be sometimes you'd, it was more of a shock than anything, 'cos some mornings you'd wake up and totally forget and be like, 'Oo' [laughs], 'Who's that person in the mirror?' You know, it was a real kind of surprise, almost, almost sort of in your dream you'd see yourself with long hair and then, 'Oh it's gone' [laughs]. Yeah so that was...

A major issue? No, I always thought it would be and initially when I was diagnosed, I thought, 'Oh gosh I'm gonna lose my hair'. No but, when there was so much else going on it sort of, fell by the wayside, I think if today if was in perfectly good health and I lost my hair then it would probably be more of an issue than, than it was then so,

You get through it eventually I think, and you, you sort of come up with coping strategies, for example because, I'd got so many infections in the first couple of ones I used to, my Consultant gave me, on about the tenth day when your immune system takes a real drop, I started taking antibiotics. So that really helped ‘cos it sort of stopped me getting so many infections. I also had a drug called Eperex, it’s called Epo I probably shouldn’t use the brand name, [laughs] and which helps boost the red blood cell count. ‘Cos I was having trouble with anaemia and I’d had a transfusion during my surgery and they were sort of very keen for me to be able to keep going rather than have to stop dancing and stop going to University, so they, so they gave me this thing to boost the red blood cell count which was great ‘cos I was till fairly anaemic anyway, but it meant that I could actually carry on I didn’t have to put back my treatment at all and that sort of thing. So that was, that was really good and so I’d sort of gave myself an injection three times a week of that which was really, really helpful with the anaemia [laughs].

Did not necessarily want children, but now that she has no ovaries she does not have the choice...

And your initial a kind of reaction or attitude to the fact that you won't have children, has that changed? Or have you thought more about that or, or not really?

Not particularly, no I mean a little bit more, it's something that especially 'cos people are always intrigued by that aspect of it and sort of say, 'Oh do you mind not being able to have kids?' And I think, the, the, the thing that's most difficult is the choice, 'cos you always sort of like to think that you'd have the choice and then it, when it's taken away, you're still at, you're a bit like, 'Oh, oh well I didn't necessarily want kids anyway, but now the choice is gone it's like, Oh well'. [Laughs] you know? So I think it's, it's just one of those things, that, that's I mean it does, it does crop up in the back of my mind occasionally I think maybe if I married somebody that was mad about having kids it may be, it could be problem, but I think I'll just cross that bridge when I get to it.

Said that some friends were wonderfully supportive while others did not know how to talk about...

I think a lot of them, I think it's very varied I think, some people were really strong and just immensely supportive and really that is, I've got two particularly close friends who've, one of them who's had Leukaemia himself, who came to hospital and held my hands, and chatted to me, and read, and, you know, just come and sat there, and it was more, somebody being there and knowing there was somebody to reach out to and hold your hand and than, than any kind of words of condolence or whatever so a lot of people were very strong, a lot of people coped with it by just approaching it with a great deal of humour, which is kind of how I tried to cope with things so, that, that went down well with me, and then there were some people who I've mainly lost touch with now who couldn't necessarily deal with it at all, and didn't, didn't know what to say or, or would sort of just babble along and talk about everything but, and at that time because it, it was such a current thing in my life and it was so, so important to me, every waking hour would be, I don't know you'd have to be taking a pill or doing this or doing that so it was sort of so much involved in my life and yet some people didn't feel comfortable talking about it or would just kind of talk about everything but the issues [laughs] so, yeah, and so, it was just interesting to see people's responses, but g-generally my friends were very good, very great and, you know, really supported me through it.

Just as she was finishing treatment her mother was also diagnosed with ovarian cancer. She thinks...

I, at first we very and while I was having my Chemotherapy and that sort of thing, I think a couple of months after I finished Chemo I had, I hit very low patch, my Mum herself was diagnosed with an Ovarian, an early stage Ovarian Cancer, so, that was a very, really tough time, because somehow when it's you it's easier to deal with than when it somebody you care about and, and if it's you can work towards getting better, whereas if it's somebody else it's, you're very helpless, so that was a very tough time for me.

So you went, you were coming out of Chemotherapy?

Yeah.

And your Mother was diagnosed?

Yeah, yeah so and she had surgery herself as well so it sort of [pause] it, it made it a lot tougher, and I think, you know, during Chemo there was so much to do when I was so busy worrying about side-effects and taking pills and potions to combat that, and popping to the hospital and that sort of thing, you feel very safe 'cos you're really looked after and it's like you're in this sort of bubble of the hospital, you can ring up any time and, you know, there's people there that are experts [laughs] and, you know, they're looking after you and they're worrying about you, and then you finish your Chemo and a couple of months down the line it's like, 'Oo-oo' [laughs]. 'Panic' [laughs].

It, I, it was very tough, really tough I just found it, oh I just felt so helpless and I just really wanted to be able to help but I think, I mean we're very lucky, we're very close and there's, there's, you know, we'd be happy to chat about anything and, we're, we were able to share our feelings and I mean I was immensely lucky to have her around during all of my treatment because she's a Nurse and she's a Specialist in Gynaecological Cancer so she really knew everything and I'd sort of be like, 'Mum what's this? What am I taking? What are these pills? What?' [Laughs], you know, [laughs] even down to simple things as when I was having my surgery, when I'd have my surgery she was there, and she stayed with me and, you know, she could pass me the sick bowl and [laughs] hold my hand, you know? So I think, you know, we have a strong relationship anyway, but then when she was ill it was sort of, you know, it made it even stronger because we were able to share, share things [laughs] yeah.

I think my Dad's gone bit balder [laughs] and probably a bit greyer [laughs] yeah I think because my brother lives in Scotland he, I think, although obviously it must have been tough for him, he's and he's a very kind of, stiff upper lip character so, [laughs] so he, he sort of, he was less involved than Dad. And Dad was there through, through thick and thin, you know, through all the really tough times, and hormone changes and the menopausal hot flushes [laughs], and all sorts so I think he's had, I think he's probably had the hardest time out of everyone in fact, because he's had to watch two people he really cares about go through it. So it's I think it was really hard for him and, you know, 'cos he doesn't come from the medical profession he's sort of, whereas Mum did, it was sort of like he wanted everything explained to him and sometimes people would just maybe assume that, that he'd know or we'd know, because, because of what Mum did but yeah, but I think he's sort of, I also think he feels pretty lucky that, that, that we've both come out okay the other side so yeah but I think he found it very stressful.