Interview 15

Age at interview: 22

Age at diagnosis: 21

Brief Outline: Diagnosed in 2003 with ganglio neuroblastoma. Treatment: surgery. Does not need further treatment but has regular catecholamine tests every three months and CT scans every six months.

Background: Dance teacher; single; no children; lives at home with her parents and siblings. Plans to do an MSc in dance therapy and wants to work with oncology patients.

Had recurrent back problems after a car accident and her GP sent her for an X ray which revealed...

Well in 2001 I was involved in a car accident with a lorry and I was injured in the car accident. And a year later I still had problems with my back, so I went to my GP and he said I should go for an x-ray to check there was nothing wrong. I went for an x-ray at my hospital near my university and they said they'd found something wrong with my back, but they'd also found something above or in my left kidney. 

So I went back, this was around Christmas time, I went back after the holidays for another x-ray and they'd seen something again, they didn't think it was the x-ray machine, they thought it was something to do with my kidneys. So I went back again and I was sent for a CT scan, and the CT scan showed a large mass above my left kidney which had calcified. 

So from there things happened pretty quickly, I went to see a consultant surgeon a couple of weeks after I'd been for the CT scan and he said he believed that the car accident had caused me to have a blood clot in, above my left kidney and that whatever, it needed to come out; because it was fairly large and it shouldn't be there. So from then we waited, I went through and had another test to check my adrenalin levels so I had to do a couple of twenty-four hour catecholamine tests. These showed extreme, extremely elevated levels of dopamine so I had to again repeat the, the catecholamine tests several times and the results were the same. 

I went in for surgery and everything went well, I had an open adrenalectomy, where they removed my left adrenal gland. Now previously nobody had ever mentioned adrenal glands to me, I didn't even know I'd got an adrenal gland [chuckles]. So it was pretty, pretty confusing. The morning of the surgery they said you know, 'You do realise you're having your adrenal gland taken out and you might lose your spleen?' Well every, everybody was sort of very confused as to what we were, what was happening but I, I did have my adrenal gland removed, I did have a bleed on my spleen but that, that stayed intact luckily. 

When I came round I'd been in theatre for quite a while, I came round and I was very poorly, I was in, the high dependency unit where they said that I'd, they'd removed a large mass from my left adrenal gland but we weren't given any other further information. I was in hospital for a further two weeks and at the end of two weeks the results came back from the pathology lab saying that I'd actually had a cancer that was, that was termed as a 'ganglioneuroblastoma' which is very rare as I'm led to believe. The surgeon actually had never seen anything quite like it before, I was quite a novelty amongst the hospital, everybody knew me and my diagnosis. 

Says that her career as a dancer has been affected by the scars that resulted from her surgery.

And in term of your dance, will it have a sort of kind of long-term effect or the effect is momentary?

I think it will have a long term effect simply because I know a few months ago when I started looking for work, I'd been on the internet because a lot of the jobs come up, I can keep an eye on who wants, employers. And it's untrue the amount of employers that stipulates 'no bodily scars, no illnesses' and, and it's, it's, you know, it's hard. I would like to go sort of and travel and work within dance abroad, there's cruise ships for example, but I'm not able to get insurance. And it's thing like that, that pull you back all the time, you're constantly reminded that you're different and that's, that's really the hardest bit. 

I mean I am trying, I'm going, trying to use it as a positive affect as well, I would eventually like to do a masters degree in dance therapy and I would like to work within oncology which perhaps before I'd never have thought about, so that would be nice. But as far as dancing is concerned, I'm, dancers lives are short anyway, but it's an added affect, the fact that I've got this body scar as well. And obviously it's hard to get work when you're constantly at the hospital, they won't take you on, I can't go away for too long, I can't go away for long periods of time because I'm needed back here.

She did not have the problem of going to a GP and trying to explain her symptoms because her...

And also I've not had the problem of going to a GP and trying to explain my symptoms, I mean I've been, you know, apparently if I had symptoms it would be headaches and you know, migraines and problems, things like that, and to get to the diagnosis from that, I, I can imagine it's an absolutely nightmare. Some of them, you know, have had, had to go through some real problems, my friends that have been diagnosed, trying to get the doctors to listen to them, to take, you know, because obviously it's the last thing people expect a young person to have, which is very well but I think it's perhaps an idea that they err on the, on the side of caution and start with the worst possible scenario and work down instead of working up to it because a lot of the friends you know, that have had it have either got to such a state where they're very, very poorly or some of them, it's been left too late and there's not a lot people can do for them. Which is really sad. 

So I've been lucky in that respect, the fact that I haven't had any problems and had, you know, I've sort of skipped a whole range of, you know, problems that I might have encountered.

Believes that information is important and that the Internet allows you to find out about other...

Okay. Is there anything else that you want to add that you think we haven't covered?

Not particularly, just that it's important that people can find information such as you know, you know your website, I've been on it and it's important. Because not necessarily every time people want to talk to somebody face to face it's hard and to have something that's reliable, a reliable site that they can go on and listen or even, you know, read about people's experiences is a great support because you can, you know, you can relate to certain things in it and, and perhaps what they might be going through, somebody's already written about it. So a bit more relaxed in themselves to know what's to come, if you know what I mean? 

Uh hmm.

So I think it's important like because obviously not all sites are reliable, but to have something that you can really think, 'Yeah, well that's, I know that's right,' and they've been there but they don't have to talk to them face to face and perhaps you know, they can sort of step back a bit from themselves and not have to.

Had found it hard to find information about her rare cancer and has not so far been able to make...

And so you had visited the internet, which sites would you recommend to others?

Sites, I mean Cancerbackup's very good. Although it's not got directly information about my cancer, the information about cancer, about why you get cancer and things like that are, are good, and it's reliable, you know, the stuff on it is reliable. 

I have visited quite a lot of American sites and there's a cancer, the supporters group for the cancer, Cancer Awareness I think it was or something like that. And they're very good, again I've not found anybody that's had the cancer, and I've looked, you know I've left messages and things like that for people to contact me. I've been on to chat with people who perhaps have had cancer at the same age or things like that and I have probably spoke to people on the internet before I was able to speak to somebody in this country face to face that had, had cancer at my age. So that was, that was, that was helpful because I needed to, I needed to speak to somebody and know that I wasn't the only one that was going through it. So that was, they were good. 

I also go on, there's a site called, there's a pheochromocytoma is it? And their web page, their web page often deals with adrenal issues, so I've sort of gone on there as a sort of, as a back up plan to try and see if anybody has had it. And that's sort of drawn a blank as well, it's, it's very difficult and I'm constantly trying, trying to see if there's been any updates or anything like that, because a lot of the information on it is old, it's been sited you know sort of, probably eight, ten years ago a lot of it and it hasn't been updated, probably because it's so rare. 

So it has been, it's been difficult trying to find information, definitely, and obviously the, the specialists are at a dead end because they can't really offer me a heck of a lot of information, they don't really know what the likelihood of it returning is and it's difficult like that so it's frustrating, it can be, you know. I suppose some people would rather be in the position where they don't want to know and they'd rather know as little about it as possible, but I'm the opposite, I want to know everything and I'd like to, you know, know as much as possible so I've got a good understanding about it.

Sometimes she feels bitter about the disruption to her life, but has struggled not to be negative.

And how long it took for you to recover from the operation?

Properly I would say about three months, because I obviously was in a lot of discomfort, I had pain, you know, pain under my rib cage because apparently they had to crank open my ribs, and you know, from the, from the scar line itself so probably three months at least until I was able, you know, to, to get about properly like I was before. Definitely.

And you do, you do feel quite bitter sometimes that it's sort of slowed you down. I wasn't able to finish university, where I'd spent three years working very hard, I'd like to have finished it, you know, properly and I'd like to be getting on with my life, I'd like to be doing what I want to do and what I've trained to do. And I'm sort of, I can't do exactly what I want to do yet and I sort of, sort of in limbo at the moment, especially till the, the visits to the hospital are lengthened, I'm not able to do what I'd perhaps like to do, definitely.

I think it has helped me recover quicker, you have to stay positive because you can't, there's no point in being so down on yourself, because it, it just makes you worse. Of course you stress about things, but you need to be so, you know, you need to try and talk yourself around in to thinking not too down on yourself, and you know, not making worse of the situation than it already is if you know what I mean. You're not helping yourself, you're not helping anybody around you, and you're not helping yourself physically, mentally, you know, anything, if you're thinking down on yourself all the time. You've got to try and think positive and think 'Well yeah maybe that's the case, but it could happen that you know,' it's not as bad as it seems, or you know, 'I am having tests, maybe there is something,' you know that you're stressing about, but there might be a good side to something. And you've got to constantly try and you know get out of the house and meet up with friends and try and make some time for yourself instead of being so in, in, you know enthralled with your own disease or your own diagnosis where you've, even if it's sort of for half an hour, it takes your mind off it, so you get some release from being, thinking about your illness all the time; and it helps, it does, you've got, you've got to stay positive. Do things you enjoy or try something new, try and find people you can talk to.

She finds it very difficult to cope with the stares and 'behind the back' comments of others.

Let's go back to your scar. 

Yep.

It seems to be that it's a big issue?

Yeah, yes it has been.

It is just or mainly because of your career, because you're a dancer? Or it is also it has to do with your self-image?

Yeah, I think a bit of both. Obviously we weren't, we were unsure what was happening with the operation and I wasn't told how big the scar would be. When I first saw the surgeon he sort of pointed to a couple of you know centimetres and 'Five centimetres,' sort of thing and I thought fine, you know, I, I understood they couldn't do it through keyhole surgery. And when I woke up to see this big bandage slapped across my stomach, [laughs] and when I first saw it I was absolutely devastated. Because obviously you, your self-image, being a woman as well you, you know, it's a lot to you, and especially at my age and I'm dancing, so my body is seen a lot. You've got the whole feeling of when you're on holiday and having, you know, bikinis on and things like that. 

I went on holiday probably about eight weeks after I was diagnosed, because I insisted that I went for my own piece of mind, it was, we went as a group like from university and we'd organised it years before. And some of the comments that I heard behind my back about my scar totally, you know it was totally out of order and it was, it was really hard when it was so new, to see, you know, to hear people talking about you know, and they were saying things 'Oh look at that, that's a bad caesarean scar,' and 'Oh I wonder if she's had a tummy tuck?' And 'Oh it's not nice that is it?' And when you can hear them behind you and you're trying to deal with it already, and to just have that sort of knockdown of people talking about you. Some people can be very cruel and heartless and I don't think they realise what they're saying. And that, that's tough, definitely. 

And I'm conscious, I'm always conscious of it, it's a constant reminder that I've had cancer, that I've been poorly, which I don't particularly, well I don't like at all. And that's, you know it's, it's that, and if I'm in the, you know, dressing rooms at, you know, when we're doing shows in, in the theatre, I'm constantly trying to shy away from people and I'm conscious of covering my tummy up with my hand or turning away from people as I'm getting changed, and it's, you know, it's, I've got that constantly in the back of my head. Of course they've seen it and they know what it looks like, but I'm still, perhaps I'm consciously aware of that I'm actually trying to cover it up all the time.

And I have, I was seen by a cosmetic pharmacist who has prescribed me with some sort of camouflage cream and I was thinking oh that will be fantastic, you know, it'll just cover it up and bit and, but it sort of made me look a bit mouldy, it went, all turned me green [laughs]. So I was even more shocked at the fact that it had gone green under sort of artificial light. I thought there was no chance I could wear it on stage, because they'd think I'd been, I looked like I'd been cut in half by a magician's saw. 

So, yeah that's, that's sort of gone by the wayside, but once, I'm hoping to get it sorted so.

Plastic surgery?

Yeah. Totally cutting out and starting again, with any luck. 

Yeah, well I, I do, but I tend to cover it, it cover up the scar from the sun anyway and I sort of tend to go towards more of a tankini, so I can pull it down. And if I'm sort of walking away from a deck chair or, you know, to the beach, I’ll stand, and I’ve, I’ve noticed myself doing it, I’ll walk with my hand across my tummy so that they can’t see it. Because you do get stares, and it’s those stares, I think if people weren’t so blatant about the fact that I, [chuckles] that I’m different then you know, I, I wouldn’t be so bad, but I'm conscious of the stares and what they’re thinking.

Have you confronted anybody?

At school it’s quite funny I teach little children and a couple of weeks ago I’d got my dancewear on and I was stretching up and one of the children came up and tapped me on my shoulder and said “Excuse me miss, do you realise you’ve got biro on your tummy?” And I sort of thought well you know, they’ve not asked me what it was, but she felt it was, you know, somebody had scribbled all over me [laughs]. Which was quite funny and, I don’t mind that sort of innocence, I’d rather people come and ask me, than stare and sort of whisper behind my back. Because you know, that’s worse, I’d rather explain to them, say “Look this is the reason why,” but I’d rather somebody confront me about it and be honest and say “Gosh, you know, what’s that all about?” And you know, than ignoring me and pretending I can’t hear, I’m not deaf [laughs]. I can, you know, I can see and yeah. Yes. Definitely.

She was hurt that some of her old friends didn't support her through her illness but found...

I still get out with my friends you know, my good friends, it, it's quite odd how being diagnosed has meant that a lot of friends have gone in to the woodwork and haven't been there for me. I, I don't know if it's they don't know how to handle it or because they don't want to, to come, to face it, to face the fact that their friend has had cancer. It's quite, quite odd how some of them have really rallied round, such as like my friends at dancing have been really good, but even some university friends don't stay in contact, how they should, how I'd have liked them, because it's important for you to have the contact and not feel so ostracised from people. Because that is, you know, it's bad enough already feeling like it. But yeah some of them haven't kept in contact as, as they should do which is hard, definitely.

It must be kind of painful to know that?

It is because it's as if I've done something wrong, and it's not something that I've chosen to have. And it would be nice for them to say, you know, 'Would you like me to talk about it? How do you want me to play it? Do you want to talk about it? Shall we not talk about it? Shall I take you out for a coffee?' Or just something like that, just to be there so I know that they're there, but I feel that I can't phone them because I feel like I'm putting them out a bit and they might not want to talk about it yet really it should be the other way around, they should be coming to me, I don't, it's awkward trying to reach out and ask them to phone me, it doesn't seem like that should be my job if you know what I mean.

And those friends you have talked to how have they reacted?

They've reacted differently really. Some of them have really rallied round and you know, good text messages and things like that, just something little, you know, and sending me sort of pamper kits and things like that, that has been great, you know, it's, it's what you need, it's something just to, as a light relief really. But others have sort of not bothered to contact you, or if they do contact you it's very infrequent and they won't ask how you are. They'll sort of skate around the fact and I wish I could forget it like that, you know, to me it would be nice if I could forget the fact that I'd been poorly but it doesn't work like that if you know what I mean, so.

So, another side, another aspect of your experience is that you have made good friends with other patients.

Yeah, I have, yeah. And they're all similar age groups. I mean some of them are younger, some of them are older but each of them obviously have had different experience and that's handy if, if I would need to have treatment they're there because they could tell me all about it, they've been through it, and I mean some of them have really been through it and they've had a really tough time. But they have come through it and that's, that's nice to see that they're you know, strong people for it and yeah, it's nice that we can relate. When you're walking around you know, you're normal place when you feel like people are sort of pointing at you and you're singled out, whereas when you're with them, because we meet up, up quite regularly, that, within the hospital we have a group that we meet up with, it's the other way around, it's not, 'There's somebody with cancer,' but 'It's oh they haven't had cancer.' So it isn't, sort of the table's turned which is really nice just to have that release of not having to worry about it all the time and you don't have to watch what you say we, we laugh and joke about things, about you know, the funny times, perhaps some of the slip ups that have happened in hospital and you know and it's nice to have, to have some humour about it, because you can, you can laugh about it, it’s nice to laugh about it. Hmm.

Describes how her illness has affected her family. Her mother wants to know everything but her...

Who do you talk to when you find it hard?

My Mum. She seems to have been the best, it's odd how different people deal with it around you. My Mum always wants to, she's very interested obviously, but she wants to know everything, she's always saying 'Well what does that mean?' And she makes it a point of visiting the hospital every time I go, she has to be there whether, whether she has to rearrange things or, she has to be there. If, even if it's just to take a test up she, she needs to be with me all the time. And it's been hard, it's, it's really hit my Mum very, very hard and that's, that's been probably more upsetting to me, watching her see me being poorly than me actually feeling poorly because obviously I've not, not been poorly with it. But we talk about it a heck of a lot, and I think talking it over has helped her come to terms with it a little bit more, from the information I've found out, I've told her and related back to it, and it sort of settles her mind knowing how I'm feeling all the time. 

I have some, I have two sisters as well, and my younger sister has not dealt with it very well, she's not been able to talk to me about it, she doesn't, not that she doesn't care, but she's, she's not able to talk to me about it, she find it very hard. She's not been up to the Hospital where, up to the [name] Hospital, she's not able to bring herself up there because I think she probably, she associates it with death and it's not like that, it's, you know, it's hard to explain to her that it's not like that.

Okay, so in a way not discussing your sort of concerns or fears with your family is sort of a way of protecting them?

Definitely. You do, because you can see how much it's hurting them, you know, you're seeing them go through this, I don't know sort of crumble before if you know what I mean, as soon as you're told the whole, your whole world's turned upside down, it's not just your own, it's your whole family's and you know, you can see how much it affects them and it's. I found that more upsetting, whether it's because I, my brain sort of choice not to believe I had cancer, I don't know, but it's, you know, to see them go through that and you try and protect them from it, because you know, what, what they don't, what they don't need to know they don't need, you know what I mean? I don't mean that you, you keep things from them when you know, you've got big fears, but you perhaps don't think you need to discuss it all, quite as much as you, you perhaps would do, definitely.