Who told you?

Well they didn’t tell me first, they sort of, mum and dad they sort of, they went off and showed Mum and Dad round the ward or they went off to say something they both went off and they told Mum and Dad before they told me. And they asked whether or not I wanted, whether or not they wanted me to know what it was, but on a ward when you’ve got that many people with, all with the same thing not exactly a thing you can keep a secret for long. And, and they decided in the end that, that it was best for me to know.

Who decided?

Mum and Dad did.

Okay.

Yeah, and then they came, sort of came through in to me with the consultant and a couple of nurses and they came and explained what, what it was.

Do you remember what they said?

I can’t remember it word for word, but it was something along the lines of some, ‘Weve got the results of the test and do you know what cancer is?’ At the time I really didn’t know, you know I’d got a vague idea that it made your hair fall out, so that’s what I said and they said that it was the treatment that makes your hair fall out and they said they said that I’d got leukaemia. Then the nurses sort of explained sort of how it was and they had this little sort of diagram of a bone and they showed me all the different cells, but I can’t really remember much of that because I was too busy sort of trying to come to terms with what they were saying.

Do you remember your feelings at that time?

I kept thinking they were wrong and just, the, for the first couple of days I just kept expecting them to come in and say ‘Right got, got it wrong, you can go home now. Because the actual, what was actually making me feel ill when I went in wasn’t just the leukaemia, it was an infection, as well, and once they’d given me antibiotics and cleared that up I just felt so much better I thought well, because I couldn’t, it had been that six weeks since I felt normal, so I just thought well I feel fine now, I’m, I’m all right, let me go home, you know.

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 wit. 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 bette. 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, Ye.

And then we sort of talked about what would happen next and he explained that I would probably need Chemotherapy and that, that hed, 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 Dads 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.

Yeah so eventually the symptoms got really, really, really bad I was on a family holiday in Spain, half way through that just it went to a different level, literally it went from I was struggling to walk a couple, a couple of steps or not being able to walk at all. I was, it was just the pain I was in, it was, just stopped me from sleeping for example, I was just rolling about but at the same time every time I rolled about it was hurting. So I was really uncomfortable like I hadn’t ate anything for seven days or something and then we went to A&E when we got back, and I was constipated, had some more laxatives. So then tried to take them and two days later again it was just, I was in absolute agony.

So I was very, very uncomfortable, very uncomfortable. And this time we went into the hospital and someone had a feel about my stomach and then the surgeon was called down, well we didn’t know he was the surgeon at the time but a higher doctor was called down to have a feel of my stomach and he straight away said, then I was sent for an emergency CT scan. The CT scan identified a blockage, is what they called it,

Was that the first CT scan you had?

The first CT scan up to now, it was just X-rays even though we pushed for CT scans, we pushed for a colonoscopy, just something further, more thorough.

Mm, all you’d had is plan X-rays before that?

Yeah. Yes up to that point just had X-rays. Now we had a CT scan and they identified an actual blockage in my bowel, an obstruction is the exact word they used and they said, Were going to have to go in with surgery to, to remove that obstruction. By this point they potentially had a better idea of what it was but they called it, Just an obstruction, what they say, we went in with surgery and it ended up being a five hour operation I think it was.

And then the surgeon after the, the operation said, We had to remove half the bowel, what we removed looked ugly was the term he used. Weve sent it off to the lab, results will be back soon. And then by this point he pretty much knew it was cancer. We thought it, yeah potentially it, cos why else would he remove half of my bowel. But we waited for the results to come back and that actually confirmed yes it was unfortunately bowel cancer.

How was the diagnosis actually delivered to you? Did they,

Yeah we

Were you parents with you?

So we were in hospital for six days and then the surgeon said You can go home, for a weekend and take it easy obviously don’t do much cos you’re recovering from surgery, come back on Monday morning and well discuss the results because they’ll be back from the lab then.

So we came back took to a side room me, my Mum and Dad in the room and the surgeon and then there was a, I think hes a head nurse of the children’s ward. And the surgeon just went through what the results were, he did it sensitively as well he did a, objectively he told us the facts and we just went through it all. Just asked lots of questions, what’s happening next? What’s the extent of the cancer? What can I expect for the next however long? And so he told us the next step was to move to be referred to either [another hospital] to discuss chemotherapy.

Oh what were all your reactions then?

Obviously we were shocked, hugely shocked that at that age to get cancer but it was diagnosed post operatively which helped so it was kind of, You’ve got cancer but we think weve kind of took it all out. cos obviously it’s kind of a bit better and, and there was a lot of relief that we actually had an answer to what was wrong with me and it was kind of Oh we can get this out of the way then I can start back to normality.

I went to the hospital and they did, they carried out a bone marrow test. Then she, I think the next, the next day they told me that you’ve got leukaemia.

The next day?

The next day. And I was shocked. First, first of all I didn’t even know what leukaemia was. I had no idea then, then they told me You’ve got leukaemia. You need to take a year out of your university. Six months will be going towards your treatment. You’ll have to go through five no four positive chemo but in between that you’re also getting breaks of two weeks off. So basically it will take up to six months And when they told me that I was basically gutted. I didn’t even know what to think. You know, I thought that’s it, isn’t it. That’s the end of my world because I was studying law as well and one of my exams, the final exam before I came in the hospital I felt ill, ill in that. I did not get to sit it properly. So I had to resit that exam as well. So I wanted to resit that exam before getting into third year for my degree final year.

So I had a lot on my plate as well. Plus my mum doesn’t keep too well herself. She suffers from depression. So it’s a lot. I was thinking quite a lot of things. Over all I was just lost in a way. I didn’t even know who to turn to. I was just basically, I was like. I’ve just fallen, fallen down so hard and I can’t get back up. That’s it.

Were you on your own or?

I was on my own. They kept me in. I had a temperature as well. So they, the next day that’s when they told me that You’ve got leukaemi.

In retrospect do you wish somebody would have been with you at that time when they told you?

I’ve never actually thought of that but I think I handled it pretty well when they told me although I was really down. I think I was alright with it. What, it took me time to get around it. Couldn’t, you know, even, even up to now I think to myself I’ve got leukaemia but it’s, it still comes as shocking because I don’t smoke, I don’t drink, I don’t do, you know, nothing.

First I was thinking, Is it my fault? Did I do something wron. You know I, I was blaming myself because I kept on thinking to myself you know, How could this happen to me I kept on blaming myself first of all. Well then later, later on I realised as the doctors kept on saying, Its just one of those things that happen It’s not your fault. You shouldn’t be blaming yoursel and that. Then eventually I got around that.

I went to hospital and they took a biopsy of the lump and then I went back again and they said ‘You’ve got an osteosarcoma,’ and explained that I was going to have to have chemotherapy, how long it was going to take and things like that.

And I went back home and called my best friend. I remember so vividly saying “I’ve got to have chemotherapy. It’s fine, it’s not cancer, but I’ve got to have chemotherapy and so I’m going to go in to hospital quite soon”.

But it was only when I got there that I actually realised that I’d got cancer. Someone said ‘Now, you do understand why you’re here and what’s wrong with you don’t you?’ And I said ‘Oh yes, of course I do. But it was only having seen the signs saying “Cancer ward” in the hospital that I’d realised.

Neither you nor your mum realised it was cancer?

She may well have done, I’m not really sure. In my head it was different to have to have chemotherapy as opposed to having cancer, which now I realise was completely daft. But at the time I hadn’t realised that it must have meant the same thing. And it’s such a buzz-word, “cancer”; it’s something that happens to other people. Everything in my life was so perfect and I just couldn’t believe that this was happening to me.

And so I think probably Mum did realise but it was, it think it was such a big thing anyhow, having to have the chemotherapy and they’d explained I was going to lose my hair and things that I don’t think she really knew that I didn’t understand that it was cancer. And then also because when they said when I went to start the chemotherapy ‘Oh yes of course I understood that,’ I kind of tried to cover it up because I felt so silly, then again I don’t think she really realised until you know until more recently that I said ‘Gosh no, I didn’t really realise,’ I think it was only then that she knew.
(The text has been altered in accordance with the wishes of Interview 13.)

Who told you, you had cancer?

That – I sort of – I think about this, who actually said that I had cancer, and I don’t actually remember anyone saying, you know, the cancer word. My mum came back and she said, “The doctor says they’ve found a mass”, you know you just, you don’t really think, well, “What is a mass?” I went to – when I eventually went to hospital it became a tumour. Again, you know, what’s a tumour? And then I saw a social worker came down, a social worker when I was on the young oncology unit. She came down and she said she was from Sergeant Cancer Care. And I kind of looked at her and I was like, “Well I don’t have cancer, why do I need to see this woman?” And I think she was the first person that made me realise that I actually had cancer. You know, I was in a cancer hospital, and I knew that I was going to have chemotherapy, but even then it was kind of, well, you know, it’s a tumour; it’s a mass, it’s not – And people won’t, still won’t say cancer. It’s – I don’t know. For some reason it’s like the hardest word for people to say. And it’s not really that bad a word to say’

So your doctor at the hospital didn’t explain to you?

No. No, he said it was a tumour. He explained, you know, he explained what – that it could be a lymphoma, or it could be a sarcoma. He didn’t explain what a sarcoma or a lymphoma was. He – you know, he never explained. It was always a tumour, or a mass, or a growth, you know, and they never said it was cancerous or – or they’d say malignant, you know’ But when you’re seventeen you’re not really kind of sure – you understand the word cancer, but you don’t understand malignancy or… you know, you just don’t understand that kind of thing.

I was so angry towards my GP. I knew, my consultant said to me that if they’d got the chemotherapy – if they’d managed to get me chemotherapy earlier, I wouldn’t be disabled now. If I’d – because the tumour pressed on my spine, so I’ve got no use at all of my right leg. My consultant said that if they’d got the tumour, only like a couple of months earlier, then they would have managed, you know, I would have been fine. I wouldn’t have been at all disabled, so I was so angry with him. I knew that if they’d got it earlier, I wouldn’t have been so ill either, and I wouldn’t have had to go through what I went through for that year.

Mother’I was, I was just shocked at the length of time that it took for them to diagnose what was, what was actually wrong with [name]. Had it, had it not been for, in fact a misdiagnosis by the GP but a referral to the hospital nonetheless it could have gone on for an awful lot longer without, without being, being diagnosed. And in fact when [name] presented with the elevated white count and this terrible pain in his leg we were sent home for ten days by the consultant guy, bone man to and when [name], when went back to the clinic he, he still didn’t know what was wrong. So I think there needs to be more awareness throughout the whole profession so that if, if, if a child turns up with a bad leg in a bone clinic they can consider that leukaemia might be a cause of that. Several of the children that weve encountered while [name] has been treated have all presented with limps, pains in their legs, difficult walking and the little ones crying when they are walking, that sort of thing. So I, I just think that a, a more, more awareness full stop really.

So there is, there is a need for more awareness more?

Mother’Absolutely there is yes because they, they. When, when [name] presented with the pain in his leg, excruciating pain in his leg and the elevated white count then I think at that stage that initial meeting the blood test should have been done. But it wasn’t even, it wasn’t even thought of.

A special kind of blood test?

Mother’Yes, yes to check for, for the leukaemic cells so it wasn’t until [name] went back ten days later and had a rash on his lower leg which is symptomatic of leukaemia that they then did the test and the diagnosis was made.

Okay so let’s go back a little bit when you were told you, you had Non-Hodgkin’s lymphoma.

Yeah.

Do you remember how you felt at that time?

Yeah I was pretty scared. Yeah I, I remember the day I was diagnosed I seriously thought I was going to die because when you, when you get diagnosed with cancer the first thing that takes over is fear with, with anybody. So yeah irrational thoughts kind of sort of start coming and yeah I, I thought I was going to die for, for quite a few days actually at first, until my doctors managed to convince me that I was going to be treated and I was going to be okay. But yeah, no at first I really thought I was going to die.

So you were frightened?

Yeah I was really frightened, it was the most frightening thing by far that had ever happened to me in my life.

Okay, did you think ‘Why me?’

Yeah that’s another main question that people think. I thought ‘Why me?’ because I didn’t see quite what I’d done to deserve what I’d got. But then sort of I also thought it, it’s not really a case of ‘Why me?’ because cancer is such a chance thing it can actually happen to anybody. So it, it’s not really a question of ‘Why me?’ its just it, you know it can happen to absolutely anybody, so.

Did you believe the doctor when the doctor said you would get better?

At first no I, I didn’t, the only person I wanted to believe, I wanted to believe I was going to get better but the only person I found I could believe was myself, telling myself I was going to die. Really.

You had Hodgkins?

And they told me it was the second stage, so it wasn’t too bad, so it was still curable, there was a 50/50 chance I would survive or not. But, yeah, I felt pretty head straight about it. When the doc told me that it was curable, I was, I was optimistic, and I didn’t think it would be too, too risky, too much of a hard time.

Okay. Did they explain to you what ‘second stage meant?

Well, they told me it was curable, and that’s the only thing I listened to, because I thought, ‘If it’s curable, that’s all right. It should be okay.

Okay. So that was the important part for you?

Yeah. Yeah.

And you were 14?

I was 14 then.

And how did you feel when they told you it was cancer?

Well, I was pretty shocked because I, I was told it would either be TB or cancer, either one of them, because that’s what they symptoms looked like. But TB I knew that would be really kind of hard to get rid of as well, but and it also affects everyone else around you as well, so it would mean that my family would have to be tested out and my friends and everyone from school would be tested out, and that would mean a big fuss about it, and I’d have felt more embarrassed about that as well, at the same time, because they’d looked down? on me, because everyone will know I’ve got TB and stuff, it would have made it a lot harder for me socially, so I thought ‘Cancer will probably better. So I was kind of ‘ not looking forward to cancer, but kind of I thought it was better than having TB, in a way. And plus I also found out it was the second stage, so it wasn’t that bad. It could have been worse.