And then I moved to this other hospital but once I got there it was incredible because I went through the doors, it, it looked like sort of a 1970s comprehensive school, sort of it didn’t really look like one of the world centres of cancer medicine. And, but as soon as you walk through the door I sort of got this feeling that everybody from sort of the cleaner to the top consultant was there out for me. They, their intention was to do the best for me the patient. And I, I got that sort of, it felt as if the hospital was sort of self-selecting, the best people just ended up there.

And you know I, I saw the consultant who was going to treat me, I saw him at a different branch of the hospital in London and he was very straight with me, straight in the sense that I said to him ‘Am I gonna die?’ and he said ‘Yes you might but I will do my best to make sure that you don’t. And I’m the sort of person that likes it straight like you know just the facts, not any waffle or anything like that just, just give me the facts.

And I did actually find that very uplifting. That here was someone who was very honest with me and said ‘Yeah, yeah I acknowledge that but I’m gonna try my hardest to make sure that it doesn’t happen.

And how was in your experience, communication with doctors and nurses?

Well all the doctors and nurses I had were great. Especially my consultant at my, at the, the hospital I was like through my transplant and stuff, he was amazing. He was like, I was in the kids unit but he understood that I was a teenager and that I was at the point where I, you just needed to be told like what was going on, what will happen, what could happen and not try and sugar-coat it, and he was good at that, he was quite blunt some of the time, but it worked for us, it was like what we needed to know. And if he said, ‘This won’t work, you need to do this, that’s what wed do. So we had, we had total faith in him, like he knew what he was doing and stuff so.

And all my, all my nurses were, were great, I still see them sometimes, like I go back and see them and all the staff like and the nurses that I had at the teenage unit as well, they were amazing, they actually you, you can tell the difference between a teenage unit and a children’s unit.

A teenage unit they weren’t wearing uniforms and stuff like this, so they would, they don’t feel like they, they were nurses, they felt like, because you got to know them as friends, they felt, you felt like they were just friends who knew what they were doing like and they were just giving you medicine and stuff like this. So yeah, the staff were, were great everywhere, every, every hospital I was in they were great.

And the doctor, the consultant that did the transplant you liked him because he was kind of honest and explained things clear?

Yeah, he kind of, he just made you feel safe, he made you feel like he, he was in control, he knew what he was doing and everything that he was doing was in your best interest. And hed keep you, hed tell you exactly what was going on, didn’t leave you in the dark about anything. If he had asked some, another colleague of his like what ‘Would be the best thing to do in this situation?’ he would tell you that hes like, he wants to do this and hes found out other people that say that this is a good idea. And he wasn’t afraid to like, if he felt that he wanted to change part of the, of, of the medicine say because he thought himself that hed feel better, find out about it and he wasn’t afraid to like ask you whether you did it or not. Saying things like ‘This might work, or you might feel better with this, and stuff, so yeah he was, he, he, he just made you feel a lot safe, a lot safer. And a lot more confident in the stuff that was going on, because there was times when you were taking so many drugs that you’re feeling terrible, you’re thinking that this is making me feel worse, and aren’t these drugs supposed to make me feel better. So you just want to say ‘No I don’t want to take them, they’re making me feel terrible, and stuff like this, and hed just reassure you what they are, that’s what they’re supposed to be doing, you know, they’re going to make you feel like crap, but that, that’s what the, part of the job.

Okay. And you felt that you were treated like a teenager?

Yeah, well I thought I was, they, they started talking to me rather that my parents, like a lot of the time my parents would answer for me, but they, as well as telling my parents, they were telling me what was going on. And like so that I would have to make some of the decisions as well. So it made you like because you were growing, you’re growing up at that time, I was, I was like just getting freedom and stuff like from the age that I was and becoming a young, young adult they, they were giving me that privilege and stuff. They were giving me the benefit of like talking to me rather than going through to my parents and stuff like that.

Yeah. Yeah when I was about three chemotherapies in, the ward – they suddenly found one of my chemotherapies left in the fridge, and they’d forgotten to give. So my Mum went to see him, and she said, “Well is it going to make any difference to her treatment? Can we just give it her?” And he said, “Well theres not really any point, if were honest about the whole thing, because it’s not really going to work anyway you know, the whole chemotherapy isn’t going to make any difference. Were just, sort of really buying time, really, not – were not going to save anything”. So – and, I mean I know now that at one point he told her that, you know she should plan my funeral, and we should talk about what kind of funeral I wanted, because none of the treatment he was going to give was going to work.

I remember sort of feeling frustrated with my adult consultant, because I never thought he really listened to me. He always- whenever he wanted to talk to me, or about the treatment, he always talked to my Mum, or he took my Mum outside, or he talked to my Dad. He never talked to me. It was always, you know, “How is she?” or – it was so – I don’t know. I guess I wasn’t really hearing him when he was saying that because I just, I didn’t kind of believe him and I didn’t want to believe that they weren’t going to do anything else ’cause – I don’t know, it was just, just – It was quite scary hearing him say that, but my Mum- I don’t think my Mum was going to let him do that, so I kind of trusted my Mum not to let it happen.

So your mum sort of found?

Yeah, my mum, yeah, she went and she sorted it out, as mum’s do [laughs].

The consultant that I eventually got, Dr was just the most amazing doctor I’ve ever had. He, he sat me down and he explained everything. And he didn’t brush off any fears, he – I think, because he had so much experience with people of my age, he could understand what people were scared of and he explained that like, you know, if the chemotherapy hadn’t sort of killed off all my, my being able to have a child and all that, this radiotherapy probably would, because it was that area. So he explained all the side-effects. He explained what could happen, what might happen. And he said, you know, if I ever have any problems his door was open. I could just go and see him and hed sort out what he could.

The doctor came round, marked on my left thigh what testicle it was you know that they were going to be operating on. Then a consultant came in, he said that did I know what the operation entailed? I said, "Yes removing the lump." He said, "A radical orchidectomy," I said, "No removing the lump," he said "Yeah." My girlfriend commented on the look on my face, when he used radical I knew that it wasn’t probably just going to be removing the lump. So then my doctor came round with a consent form and said, Did I have any questions before I signed it I said "Yeah one big question that’s burning inside me what are you actually going to do?" He said, "Were removing the testicle." And I just looked at him in amazement. And I remembered back to the Monday that I was told that I was going to have the operation and I remember his exact words "We are going to remove the lump." At no point did he say that we are going to remove the testicle. So I sat there in amazement. I signed the form. I wasn’t going to go back. I knew that it was the best thing for me. He said that operating on a testicle with a lump on it, if it was cancerous that would encourage the cancer to spread. So I then went on to ask him if it was cancer what would then be the procedure. He said that I’d be asked back in for a CT scan and then obviously further treatment if required. So again I just, it all came to me, it was three hours till the operation and they tell me this. It was not good timing.

They gave you it straightforward, simply layman’s terms and the, they tell you the technical stuff and then they’d tell, while they were telling you that they’d tell you what it meant and basically they’d, they’d say if you want to stick your head in the ground and ignore it well still treat you, but well still have to tell you the technical terms of it. But other than that if you have any questions just let them know.

And did you have questions for them?

No, not at the time, I was just more keen of just getting back, back at home like sort of thing, back to work and having my life ordinary again [laughs].

Ok but did, you were able to ask questions if you have any?

Yeah, yeah, yeah you were allowed to ask questions all the time and main question was how, how am I progressing? But other than that, I didn’t really have many questions.

So that was your main question?

Yeah

Ok, and what about the nurses on the ward?

The, they’re, they’re always there if you needed them and they’re always helpful and what have you.

Ok, so do you feel you could communicate or talk if you have any, if had any problem, talk to either the doctors or the nurses?

Yeah you could talk to the nurses and doctors all day long. I did, I did that but it’s a question of I didn’t really question on what I’d already knew sort of thing ‘cos, like I say they’re, they’re telling you stuff as it happens sort of thing so you didn’t really feel left in the dark that you needed to ask the questions.

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 theres 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.

When the doctor explained to you that you had leukaemia do you remember what they said. Did they talk to you in an easy to understand language? Did they explain what leukaemia was?

Yeah. First there was a, everything was just gibberish. I didn’t know, they gave me a leaflet which explained what leukaemia was but it was off the Internet and it was just using big long words I didn’t understand. But then the doctors came and they sat down with me and then they explained what it was and then they brought me other leaflets. And I read them. They were a lot more easy to read.

Did they explain about the treatment, they went into details?

Yeah. They explained everything in detail. What you are going to go through. How long it will take. What you’ll be feeling like, side-effects. So they explained quite clearly.

Ok what did they say about side-effects?

You won’t have the strength as you normally do to walk about. You will probably feel nausea, sickness, you would just basically won’t be feeling yourself.

Did they tell you about hair loss?

Yeah. They told me about my hair loss as well. You lose your hair, hair, you’re eyebrows. My eyebrows are starting to come away as well. They were a lot thicker before. I expected to lose them in the last positive chemo because I’ve had three so far. No, I’m sorry this, this is my third one I’m going through. I had that losing the second but everyone is different. Big lumps, thats what scared me.

So you were scared of the kind of physical effects that the chemo was having on you at that time, at that period. Did you manage to talk to someone about your apprehension, your fears regarding chemotherapy?

I didn’t talk to anyone. I just kept, I usually bottle my feelings. I don’t really tell other people this is what I am going through. I don’t tell my best mates anything like that. It’s just the way I am but obviously I, every one needs someone to talk to. I just kept it to myself.

The doctors tried persuading me to come back to the hospital. They tried their best. They gave a lot of effort into it. But I think it was just me who just blocked out. I couldn’t see that I had to go through the treatment.

What are the main questions that you have asked?

They’re all. First of all they probably all came out of his questions to me about the. He would talk to me about the kinds of side-effects that people have from having this treatment and whether I was having any problems. And he, he used to ask me if you had any? And I didn’t know what he meant at the time. I was about eighteen, nineteen. He asked me if I had any personal, emotional or psychological problems that I felt, not necessarily that came about from the illness just generally because he, from his experience, hes obviously seen how it can affect people who have cancer when they’re very young. And at the time I, you know said, ‘No it’s fine. I, I can get over it fine.

And then you know over the last few years I’ve probably, I’ve probably thought well maybe I have got some problems I should bring them up and mention it to him but again. I, I haven’t. And I don’t really, I don’t really feel like I need to at the moment. But yeah, there are, yeah he, he has he sort of prompted me to talk about things rather than the other way around. But I, I spoke to him about the illness itself and the chances of it coming back and the chances of any form of cancer coming back and things like that. And every time I go there I kind of feel like I’m being educated a little bit more on what happened. Because hes aware that I don’t, I was very young and didn’t really know anything that was happening. So whenever I go there now, every now and again hell just expand a bit more what happened and make me realise how serious it was because he. I think hes aware that, you know, I, I was very young at the time and I wasn’t really sure what was going on. But yeah weve got a very good relationship with him and I can, I feel I can ask him anything.

Okay, did the doctor, the consultant in this case explain things in an easy to understand way?

Yeah, very much so. Since then I’ve been going to – or went to the adult side of it, since I’ve been older, a few years ago. Hes great as well. He just tells you exactly what’s going on. You know, hes very down to earth, they all are. I think the child consultants do break it down more, kind of explain it in really simple terms, but you do understand it, because when I was older I did know what was going on and you know what’s going to happen, and they just explain everything really well, so’

But in your experience most of the health professionals treated you like a teenager? They talk to you?

Yeah, pretty good. Yeah, very good.

So do you think that is important?

Definitely, yeah. It’s changed again since I’ve been going to the adult consultant. He just tells you straight off what’s going on. That’s good. You go in after your scan, “Right you’re fine”, Excellent, that’s all you want to know.

So now mostly you have scans every three months?

Yeah either a scan or an x-ray every three months.

I’m looking at going away, abroad for longer, I was talking to my adult consultant, and hes so willing to help out, you know, that they’ll contact doctors and hospitals in other countries, just so you can get away. They are so helpful. If you ever do have any questions or any queries, you know, just say, and they’re as good as they can be. They really do try and help you, so it was great.

Mm, he is quite supportive.

Oh yeah, it couldn’t be better. Theres no – I couldn’t say a bad word against the NHS at all, and you hear people slagging it off all the time, but from my experience it was just great. Even if you are private I can’t imagine it would be better. I don’t know if everyone gets that but I – you get your own room when you’re having chemo, and what more could you want? [Laughs]. So, that’s good.