Cancer (young people)

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.

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 leukaemia”.

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 wrong”. 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 yourself” and that. Then eventually I got around that.

Who told you, you had leukaemia?

My consultant at the, oh who told me I had, I, it, I never remember being told that I had leukaemia, I remember being told obviously but I, I don't remember it registering and I didn't really understand what it was until I started talking about it more and finding more about it. Because I went into the teenage unit and I was, everyone had obviously been in there for a while because they had like the hair loss and a bit pale, a bit skinny and stuff like this. And I had, when I was first taken in there it was kind of like this is what I'm going to look like and I didn't understand like what was going on, I didn't think I had the same, it was a hospital, I didn't think I had the same thing as everyone else.

So I never actually remember being told that I had it, I kind of just picked it up. I probably was told over and over again.

Son: I remember going that week for a scan at one of the other local hospitals. And then I remember seeing lots of doctors looking in my eyes and all sorts and then I remember them coming back and saying that they've discovered these tumours. And you know when someone tells you that you're a bit shocked, you don't really like you know in to your head.

Mother: But relieved as well.

Son:  Kind of happy that they knew what was going on at last, because I didn't have a blooming clue. 

I didn't know what to expect, I just thought 'What's happening to me? Why have I gone like this all of a sudden?' I was a healthy lad, used to be out every night playing football till dark and, then -

Do you remember how they told you? Were you with your parents at that time?

Son:  Yeah, I think...

Who told you?

Son:  I remember the doctors come to the bed, I think they had told my Mum, took my Mum and Dad off to tell - you know in another room and then they came back and told me.

Mother: The consultant sat on the bed with him and held his hand. And he spoke to, he didn't address us, and he spoke directly to [son] and said that he, he explained it all in, in very simple terms to him that they'd found something inside his head that was stopping his body working properly and that they were going, he would have to have an, an operation that, that they were going to do their damndest to sort it out. 

And asked him, he said 'Will I be asleep when you do the operation?' [laughs] And he said 'Yes, if I've got anything to do with it, you will' [laughs]. But he, he actually answered questions, he, at that point I don't think [son's name] knew what to ask him, but he did express relief, he said 'I am glad you've discovered what it is because I thought it was something nobody had ever had before and you wouldn't be able to do anything at all about it.' So I think at that point Mr [name] was your favourite person wasn't he.

Son:  Yeah.

Did you, do you remember?

Son:  Not, no I don't remember any of that, no. It's all a blank. 

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 we've 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.