The other thing I wanted to ask you is did they discuss the issue of fertility with you?

Hm mm.

At what stage?

That was just as I was starting the chemo. Right at the beginning of that, so.

Okay.

I think it was more for – they weren’t entirely sure the plan of treatment I was going to have. They did say that if the initial quite tough stuff doesn’t work well then maybe go on to the harder stuff, and that would affect it more, so I think that’s why they warn you. Not particularly the stuff I did have in the end. I’m not sure if that.

Did they suggest about sperm banking?

Yeah, I did that [laughs].

Who explained that to you?

The consultants again, and one of the nurses, I think.

Were you on your own or with one of your parents?

It was all happening really fast at the time, you now, having the Hickman line in and other bone marrow tests and things, so you’ve always got somebody there. Parents were there. It was about three days I was in hospital, nearly every day, just having various tests and things like that. But at that point I think it was a morning for one of the chemo sessions. My parents weren’t there. I just went down with one of the nurses and got it over with.

How did you feel about the way they explained to you, because it’s quite a sensitive thing to explain, and because of what it involves, how skilful do you think they were? Were you embarrassed? Or were they very matter of fact about it?

They weren’t particularly matter of fact. There wasn’t a lot said about it really. It’s something they asked if you want to do, you can, if it does affect you, but there wasn’t a hell of a lot about it, really. Just said, do this, and it was kind of like that really – you should do this. So I thought, right, yeah, if it does affect things then it’s great to have it there, so afterwards if you do, if you can’t do anything like that it’s always there if you need it. But hopefully I won’t, so.

So it was one more thing that you needed to do, when you started your chemotherapy?

Yeah, just one more thing added on there, so’

It was like ticking boxes?

Yeah. Theres so much to get over with.

It can be overwhelming. I mean the preparations?

Yeah. It’s just constantly moving round the hospital, going for different tests, doing different things seeing different people and having all these things done to you. But, I think it was my attitude again, you know. It’s got to be done, and just – so do it.

So that, that was the way it goes?

Yeah, yeah. So, I had to go though. I wouldn’t consider like having a chance of not being fertile afterwards and then not being able to do anything about it, because I’d love to have kids, and get married and everything. I think most people do, so I really wouldn’t want that to affect me. So, you know, it was something I had to do.

So from the beginning you were sure that?

Yeah, as soon as they said, “You might be affected in this way” “Right what can I do about it”. So they go from there, so that’s why.

Well treatment, treatment was would be six to nine months and it would be at the start anyway purely chemotherapy. There would be two groups of drugs that they used, two cocktails of drugs. One would be short to CLIVPP from the other ABVD. So I’d have CLIVPP for a month and then ABVD for a month. And thered be three cycles of each so there would be six cycles altogether. And during that time I’d obviously have a lot of other side effects from treatment. Things like hair loss, putting on a lot of weight and also long term symptoms which I really had to think about. First of all ABVD can affect your heart. It can also, you can also, you’re at a little bit of a risk of developing another cancer further down the line. And also theres a chance of infertility which wasn’t really something I was that worried about at, at fourteen but as time goes on you do start to think about later on in life and you think well how will that affect me further down the line.

Did they offer sperm banking?

They did. They did offer sperm banking but I actually declined it simply because I was in a bit of a state. I’d had a real shock and this was something that was making it worse really, to have to go and do that and feel. And I was feeling pretty awful. Well I declined and it’s a decision which [pause] I think was the wrong decision now but that’s, but it’s easy to look back and say that it was the wrong decision when you’re in that situation you know, maybe it is.

Do you think you would have benefited from talking to somebody in more detail?

Yeah certainly. I think it, at the time that was something very small in a much bigger picture and I could have talked to someone about it in a bit more detail but I only had like a day to decide. And it was a bit, all a bit rushed and I was thinking really more about the treatment and was it going to kill me rather than anything else.

Did they offer the possibility of you talking to a counsellor or someone about infertility?

No, not at the time, no.

Ok. So it was your decision?

It was my decision yeah.

Do you remember what the consultant said when you told him?

About?

That you were not going to decline the sperm banking?

My consultant actually booked me an appointment to go and see the sperm banking team in the [name] and I decided later, after I’d spoken to him that I didn’t want to so he basically cancelled the appointment [laugh]. It, it was an optional thing and I declined it. But looking back I wish I hadn’t but again it’s hard to say because I’m not in that situation now.

I think what he said was ‘The chances are it will. So there was, they’re pretty sure I think that it will and now I’m off treatment, I’ll be off treatment five years this September and I think that’s one of the things they’re going to start looking into. And exactly how it’s affected me.

Everything. You do make, have to make decisions really quickly and I think you really mature really, really quickly. Because I mean you have to make decisions in a few hours sometimes about quite difficult things but it is a period of great maturity really throughout treatment.

Before I started on chemotherapy they didn’t take any sperm sample, didn’t freeze any sperm. So to be told as an 18 year old guy ‘you’re not gonna have children, that’s devastating, that’s really sad. And also for my parents to know that they’re not gonna have any grandchildren by me and I can’t imagine you know that’s, and how do I go in to a relationship and say ‘I can’t have children, am I gonna face instant rejection?

You know so it, I don’t know really I mean I’ve survived but there are still things on-going for me, education and all that sort of stuff.

So there was no discussion whatsoever about?

Well I was actually part way through the chemotherapy and my father said to the doctor ‘Shouldn’t a sample of sperm be taken?’ and the doctor said ‘Its not necessary. So. And that’s terrible.

That was when you, you had your first tumour?

Yeah.

And you know we, we all die but if we have children we can put, theres still something of us there in, in our, in our children, they’ve still got some of our genes so you know that’s a, that’s a sort of a grasp at immortality in a sense. And if you lose that, that’s very sad.

And I wanted to teach so that people would sort of remember ‘oh that really good teacher at school, Mr [name] or you know they’d still have some memory of me and the ideas and values that I’ve given them. But because theres now these seizures and, and whatever I can’t do that so that, that’s sad as well ‘cos you know I would have loved to be a teacher or a dad but you know, I don’t know maybe they’ll make advances in the future or whatever.

And among your friends that have had cancer, your female friends it is an issue that you talk about?

Yeah we do. Yeah. It’s a thing that we talk about along with losing our hair and laughing and all these other things. We talk about adoption and we talk about fostering and we talk about everything else. It just seems its not as easy as what it is because they say, people say if you can’t have children ‘Oh, you can always adopt, or but you, but its very difficult because when, looking at, I’ve had a look at the adoption thing and you have to confirm to all of these certain things like you have to be the right weight, the right height, you have to con, you know be the right sort of person. You have, and they have to monitor you like for three years before you have children. And then you, I mean they don’t, they do discriminate about having cancer and certain disabilities. And yet people think it’s so easy, ‘Oh if you can’t have children you can adopt, well its not that easy.

Hmm.

But you know its like hey what I said before, were all alive so we can’t complain [laughs].

Let’s talk a little bit about long term side effects, did they explain to you issues of fertility and infertility?

Oh yeah, yeah they said it, it’s possible that I could become infertile because of the, the high dose thing but that’s not for certain so yeah. I got a little bit explained to me about that but its not you know, it wasn’t really a burning issue at the time, it wasn’t really a huge issue.

Well they had to treat you straight away didn’t they?

Yeah I mean I’d sacrifice anything to, to be alive so yeah, no I didn’t.

So how do you feel about that now?

It doesn’t really bother me hugely, no I don’t, I don’t feel like particularly you know particularly strongly about it at all so no it doesn’t really affect me at all, that side of it.

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.

So I just found the immediacy of that quite harsh and I wasn’t really, you know, I’d already taken on board a lot that day and, of what to expect and I guess for me it was particularly worse because I’d led such a closed, closed life up to that. I wasn’t really expecting all of that information, and so then to go straight on to this kind of other hospital and have to give sperm in this, [sighs] it wasn’t the nicest of environments really. I thought that could have been, that was the major area which could have been improved the most. I just wasn’t prepared for it and it was quite a bizarre feeling kind of in this room, locked away in this room, and you could kind of hear other people outside in the corridor talking about you know their mundane days and you’re kind of stuck in this little cubicle and it’s, it’s just not a very pleasant feeling and. Obviously you don’t expect the Ritz or anything like that [laughs] but just a little bit more privacy and getting used to explanation of what, what was happening would have been a bit nicer as to what to expect. So I guess the harsh realities of what was going on was quite, quite bizarre that day. And that, that day really did get me down quite a lot and it kind of, it kind of, it didn’t really affect me too much I, I was a fairly positive person so I tried to just you know blank it out basically get on with it really which I did. But the thought of having to go back a further two times to this facility to store, store my sperm just filled me with dread at the time but, again, thinking of it, thinking for the future like you have to basically, you just have to get on with it and go through these stages.

Oh, yeah, I think the way it was done, I think I could have been a) I could have been given a bit more time to digest all the information about treatments and what was going to have to happen from here you know, before I had to do, rather than go straight on from that first appointment to another hospital and do it straight away. I could have been given a bit more time to think about what was going on and then also been given a bit more information as to what to expect when I got there. I mean, you know, it, it, it’s a public hospital so you’re not going to expect great facilities but I think just the fact that you could hear other people around you laughing and joking whilst you’ve got all this going on in your head and you don’t really know what, what, what’s going on. It’s really difficult to you know comprehend it really I think. The way you could have just been put into a bit of a nice environment.

The rooms themselves were a bit you know dank and miserable and the facilities were, it’s kind of, you know, you see this kind of paper, paper roller stretched over a chair and you just think, oh, it, it, it’s not nice at all. So just the general environment could have been improved and you know, what you’re offered on the day, it you know maybe to come back another day and take a look, maybe have a look and go through what was, what was expected of you and say, ‘This is what well do and this is how well store it’ and just shown what, what to be expected. ‘Cos I think it was literally that, that I didn’t expect it. I mean it was, the second and third times I had to go they obviously weren’t so bad because I knew what was going to happen and you just kind of think, oh ok, grin and bear it, get through it and you know, that’s it, done. It was just the initial shock that first time, you didn’t really know what, what was happening. It, it, it was pretty depressing really and like I say that, that was the worst point of that time and I was kind of seriously thinking, oh God what have I got myself into [laughing].

But yeah so that kind of happened and associated with that you have to go for an HIV Aids test for them to store your sperm and that’s, that’s another area which I didn’t really expect and that was explained to me and that was fine, I had a bit more time to comprehend that but I wasn’t really given any level of counselling to kind of, cos it, even though I was fairly sure I, you know, I was, wasn’t to worry about that, the results of that sort of test, it still kind of plays on your mind as soon as you have to take any sort of test you think, oh God what if I fail [laughs].

Did your doctor discuss sort of fertility before starting you off with the treatment?

Yeah. They told me

Yes?

They told me about that and, I had a lot of check ups and stuff with that and everything, but it’s all cool though. It’s all right, though.

Did they have a sample?

Yes. I had to go an do that

The sperm, a sperm bank?

Yeah.

Were you with your mother and brother when they did discuss that, or’

No, I was on my own, so I was kind of a bit weird about that, and, the doctor told me this really sort of, really weird as well, the way he told me. He makes me feel like a kid or something, like all metaphors and everything. He says, ‘You can do this, do that’ Like I had [laughs] It was really embarrassing, actually, and

Embarrassing?

Mmm.

Why? Do you think he wasn’t relaxed talking to you about it, or’?

Yeah. He was, like [laughs] He was really weird as well, but I was talking about stuff, and I was as well, I was like a kid, I still am [laughs]. I didn’t want to talk about it, and nor did he. He made it really, really obvious. And the nurses told me afterwards, and she was like, well, not much younger, not much older than me, about 20-something ‘ish, and she was a bit cooler to talk to, so I was talking to her and that was all right. I figured it afterwards.

So you think that you got a better explanation from the nurse than from the doctor?

Yeah. The doctor was really kind of, he seemed a bit unease, I think.

Unease?

Yeah. Or not unease, because he it’s a bit, I don’t know, kind of weirded out by it, whereas I really, I don’t know what it was, I think he was shy or something.

Shy?

Yeah, I think he was shy or something, so’ yeah.

Did they discuss the issue of fertility or infertility with you?

They did with… before the radiotherapy and then before the chemotherapy. Because with the radiotherapy because I was having it down to the base of my spine it’s quite near that, your genitalia area and that they recommended that I donated so, because it affect or it could not, there was no

So you kept some sperm? Sperm banking?

Some yeah, so they would so you know they went, they kind of went over it and said you know ‘You do this. Were not necessarily saying that you might, that it’s lower going to lower your fertility but this might help if it does. And then they said the same thing with chemotherapy saying this might have, probably is going to have more effect on you because it goes through your whole body and your whole systems and everything, this will probably have more effect on that kind of thing than the actual radiotherapy will do. But because you’ve obviously donated some at the beginning of the radiotherapy theres no need to do it again unless in between like when, obviously they said that’s when they had like the bigger discussion about when I was older if I wanted to have children and that they obviously, they said obviously to go have at the time, have it tested and then see how it is and then go back. And if it’s not obviously up to key go back and it will always be there and then obviously to go, to talk to the specialist and then go around it that way if I’m married or you know whatever. But they said not to be stupid about if I was going to have sex, you know still use protection, don’t just think because theres the possibility that it’s going to, might destroy your sperm theres no reason to say that it’s definitely going to destroy it totally you know so always to be safe. They kind of, you know when they did that with the whole hormone, going over hormones, how it will affect hormones with growth and things so.

And this was a doctor who was?

It was yeah.

And did he explain in a kind of easy way, in a relaxed way or?

Yeah my [laughs] my doctor, Dr [name] hes an absolute top bloke. He never explains anything to me in a way that I wouldn’t understand. You know he wouldn’t go into like higher doctor technics and go you know ‘If you do this it’s going to affect your hormone and you know, he was ‘Let’s just keep it simple, it’s going to do this, which might eventually, which might affect this in the future, might affect that in the future. So you know it’s not as if he was like laid back and like ‘Yeah you know this is going to do that, but he was professional about the way he simplified it and made it clear what it was going to do without being too technical you know. So it was very well done and hes been like that throughout you know so hes been a great doctor.

Do you think that was a good decision?

I do, I think a good decision because like they said at the beginning and then at the one before chemotherapy with the appointment they said you know, like I said they said theres not, theres always a possibility that it might not and theres a possibility it might so it might so, in my head I said but I definitely want to have children when I’m older [laughs] I plan on having a lot of children, at least four so I’m you know I’m glad I’m having this you know. So in my head it was a good idea and I stick by it now.

So I went home and a few days later I had a letter actually from my Consultant saying about fertility treatment, saying that I was gonna be infertile so I had this option of going up to [place] and having ovarian tissue frozen for when I wanted to think about having children so I decided to have that done, I mean I was only sixteen at the time but I knew I wanted to have children in the future so I decided to have it [sniffs] and then when I got back from [place] I went straight into hospital, had my central line put in and I think it was a day or two later I started my Chemotherapy and.

Can I ask you something can you tell me about your fertility treatment? What did it involve? Can you explain it in detail?

I had keyhole surgery and they it’s quite a new treatment that’s only just come out and I had slices of my ovarian tissue taken and frozen [sniffs] but they said that as it stands at the moment the chances of having children after having this treatment is not very high because it’s only a new treatment and so far theres only been two women in the world that have ever had children from it so I was only in there for about two days and the operation was really quick.

And they do it under general anaesthetic?

Yeah.

One is regarding the question of fertility. Did they talk to you about it?

Yeah, they, they explained that basically it could reduce fertility but they didn’t know because they didn’t know how fertile I was before then. And it could cause early menopause but at the time I mean, you know, I was 21, it was kind of like the last thing that was on my mind. But it has been getting to me recently actually, as I’ve been getting older, it’s kind of, weve had a couple of babies in the family and things like that and it is kind of beginning to get to me but I’ve mentioned it to the GP like a few times but, they’re just pretty confident that, you know, things are, I’m still getting like periods and stuff, you know, I’m on the pill and just, pretty normal really. And that, unless I’ve been trying for a baby for a year they wouldn’t even think about looking into things. And obviously I’m not at the moment so, you know, but you do still think about it, yeah definitely, definitely.

And how would you feel, I mean if the treatment has affected your chances?

Really like really, well I can’t even describe but, yeah I really, I do really want a family so I would be really upset. But I think I’m going to try and, although obviously I know it’s possible but I, just going to try and be positive, ‘cos obviously theres loads of treatments and, you know, things for fertility and like donor eggs and stuff like that so there are options.

Now lets talk about, a little bit about long term effects of your, either having had the tumour or the treatment itself and did they told you about that it might possibly affect your fertility?

Yeah. That was, I think its, in, in females, and I’m not sure about males because I haven’t really talked, but its, its one of the most important things that you want to know when, well it was the most important thing I wanted to know when I came out of my chemo and everything. And because my, my endocrinologist put me on two lots of oestrogen and all my other hormones and I actually asked her if I could actually see a fertility specialist to find out whether I could actually conceive or, or what the situation was. And, and it looks as if it, I can’t have children at all but he said that when I’m ready to have, hes going to give me some very expensive drugs apparently [laughs] to help me conceive but he, he thinks that they won’t work anyway but hes going to try them anyway. They, they will help try and then.

Did they give you information about it?

When they first, first started on CHOP, they said, ‘The likelihood is that this treatment will make you infertile, because it’s so intensive. There are things that we could do, we could extract eggs, etc., but to be honest, you haven’t got time. So I just said, ‘Right, let’s just get on with it’, because, I mean, ‘if you don’t make me feel better, if you don’t make me better now, then I’m not going to have children anyway. So I started on everything now, then. Then they changed the treatment, which seemed more intensive, therefore more chance of being infertile. I didn’t get any more information about it. My periods stopped for the first part of CHOP, probably just because of the shock of all the treatment, but they did actually continue, quite sporadically, but they did actually continue all the way through my treatment, so when I finished my the treatment completely, I went to the consultant and I said, ‘Look, you’ve not said anything about this. This is how things are. What do you think my chances are? Should I go and have tests?’ And he said, ‘Well, you, you do need to have tests if you want to know for certain. But because your periods have continued, then the likelihood is that you probably are actually okay. But I didn’t get that much information about it. I think it was probably just the circumstances, that time was quite short, because when the consultant told me about the tumour to start off with, he went, with a man’s fist, ‘It’s this big’, so I think it was quite, quite a big thing, they just needed to get on with it and get the treatment done. They didn’t really tell me much about it.

Have you had tests or not?

I haven’t had any tests. I don’t know now, at all. And I will have tests at some stage in the future, when it’s important for me to do so and I’ll have children anyway, whether I adopt or –

Okay, so you –

– or my own.

– you have thought about it.

Yeah, I have thought about it, because that is something that worries me. I do think, or if I am infertile, is that going to affect my chances of relationships with somebody in the future? And what do I tell them? Do I tell them that I don’t know whether I’m fertile or not? I mean, it’s not something you introduce, ‘Hi! My names [name]. I might be infertile [laughs]. You know, it’s just not something that you say to someone, is it. So it would have to be something that would come quite in a late relationship, and then, and then do you feel like you’ve lied to them? I don’t know. It’s something that I’ll have to think about in the future, I think, and then I’ll have tests done and that kind of stuff.