don’t do it if you’re very forgetful. Because it won’t help yourself or the trial. And you’ve just got to be motivated to do it. Otherwise you just will forget or you won’t be bothered to take it or things like that. Because it is quite difficult being, it may not sound it, but sitting up for half an hour having something to do when you just want to go to sleep is not the best thing. So, yes.

Are there any times
that you missed it?

Oh, yes, there was
quite a few. But I just have to take it another day and then, and it just got
quite complicated at one point. And then remembering the calcium as well and
taking the sachets. Like if I stayed at my friend’s or something or my
boyfriend’s, it, it was quite complicated to do.

Was it?

Yes.

Like you say, when you
go out, because you’ve got a social, your social life.

Yes, it, so, yes.
Because I’ve got to remember all my tablets anyway, but it’s just that extra
thing. And then if you forget to do it, then you can’t do it again in the
morning or something.

And was there a, you
know, did you have to take them at specific times?

No, but I chose to
take it at night because I’d be going to college and I’d be in a rush in the
morning. So I’d take it at the same time as I took my tablets, which is at
night as well.

So that was just a
better time for you?

Yes

And you did that all
the time?

Yes.

Did they say what will happen at the end at all, the
end of the trial?

They might have done. I can’t remember, sorry. I can’t
remember now.

I didn’t know whether you’d stay on something or just
stop and then continue your normal medication?

I think it’s going to stop and I’ll continue my normal
medication, I think. But with the
tablet, it was also, that was quite difficult because you had to sit up or
stand up for half an hour before you could lie down – yes, and go to sleep. So
I’d have to take it like half an hour before I went to bed. And you couldn’t
eat anything an hour before.

So there were some
sort of rules?

Yes.

When you say you had to stand up, was that

You couldn’t lie down
once you took the drug. So you had to sit up like in a chair or on your bed or stand
up. You couldn’t lie down.

Did they say why that
was?

No. They, it had the
instructions on the bottle and they, oh, yes; they gave me a leaflet on how to
take it and everything.

Did you ask why you
did have to stand?

I don’t think I did. I
just think I followed what they said.

What’s your, if you
could tell your experience, what’s it been like?

With the trial?

Yes.

It has been a struggle. And if you forget it, you get so stressed about forgetting it and worried in case it’s affected it in any way. Things like, you know.

You think you might have affected the results of the trial?

If you, yes, if you forget, forget it. And it, you stress over that and then think, Maybe I should leave the trial But then you’re thinking, Well, it’s probably the best thing for yourself and for the other people Because there’s not that many people who can do, be in the trial.

And when you did forget, if you tell them, do you think that’s, would be the key thing? To sort of, if you do forget or something like that, or if you&rs

Have you ever thought
about withdrawing at all or stopping when it got complicated or –

Yes. Yes, I’ve said to
my mum, I think I should justrdquo; Because I missed, when I missed them I
thought, it’s just going to affect the trial, and I don’t want to ruin it in
case it does come out that I have got the actual, real drug, medication But
she was just like, Well, I’ll help you remember Because she wants it to keep
an eye on me with my bones and everything as well as that.

Is that, is that your
mum wanted you to stay in?

Yes.

And I know you said
taking part, going back to that, just sort of the reasons, this, this interest
in, do you think by taking part they will keep a, more of an eye on you?

Yes, they have done.
They even said that, Being in this trial, we’ll keep an eye on you more And
some of the doctors said they will keep an eye on you more. Because they’re
going to be examining my bones. And I wouldn’t know, with this medication I
wouldn’t know if I had a silent fracture and the doctors wouldn’t know. So it just,
that was one of the reasons. And some of the side effects, there’s like muscle
weakness and that, so they could probably just help with stuff like that.

Would you like to know at the end about the results of
the trial?

Yes, I would be quite interested in it, to be honest
with you. I would, I, because I think it would be quite interesting to know,
if, if I wasn’t on the actual medication, whether the steroid has made my bones
more brittle without it, or if I was on it, if they’d got stronger from it.

Does that worry you at all? Because the idea was to
help prevent your bones from going brittle so if you have been on the placebo
and maybe they haven’t strengthened or whatever the results are, do you think
about that at all?

No, not really, because I don’t think there’s anything
I can do about it if the, it has happened. Because I think the other drug is
for people who’ve only just started the steroid, so it doesn’t happen to them.
But, seeing as I’ve had it, I don’t think there anything is, I can do for it.

What are you hoping you’re on?

I’m not sure.

Do you have any sneaky feelings of what you might be
on?

Yes, I think I’m on the placebo one, yes.

What, what makes you feel that?

I don’t know. Just that you would think that some
medication would have side effects. But I didn’t get any off this. So that’s
kind of a bit of a hint.

Yes, I’d want maybe
the calcium in a tablet, I’d find more easier to take, instead of a drink. Yes,
that’s probably it. That would, I think I’d remember it more, taking it just
with all my other tablets.

I think that’s a good,
quite a good point really. Because it’s not always what you do, it’s how you do
it, isn’t it?

Yes.

And especially if it
doesn’t taste very nice.

At least you can just
swallow it quickly, as it doesn’t taste as nice as a tablet.

I mean did you have to sign something first before
you

I really can’t remember. I don’t think I did. It was
such a long time ago.

Were you worried at the time?

When they said about the silent fractures and
everything I was quite worried. And I was like, I think I do want to because
they’ll keep a close eye on me then with the medication that I’m taking

Is that why you, perhaps one of the key reasons you
took part?

Yes, and to help, because they said it’s such a rare
condition that they have to go all, around quite a few places. So I was just
helping because there weren’t that many people to take part in it.

What does the trial involve for you? What do you have
to do?

Yes, I have to take a tablet once a week and then
calcium every night. Which is quite, it’s harder to remember taking it once a
week instead of every day, because that’s just routine. But once a week is
quite difficult to remember. And then the calcium to take every night. Because
it’s not very nice to take them if you haven’t got juice in the house or
something. It doesn’t taste nice.

Does it come as a liquid then?

No, it’s in a sachet and you’ve got to put it and mix
it in your drink. And it’s not very nice to take either.

Is that off-putting?

Yes, it’s not very nice to drink. So you’ve just got
to drink it quickly.

Drink it quickly, yes. What does it taste of?

It makes the juice fizzy. And then it’s got a bit of a
weird taste to it that, I can’t really describe the taste. But it just tastes
like juice but a bit weird.

Not pleasant.

No.

And what happens, does it matter, you know, like you
say you forgot sometimes, was it okay to take it the next day? Or did you have
to let them know that you’d forgotten?

No, it was okay to take it. I think, on the leaflet it
said, Just take it as soon as you remember

Did you, did you own up to them some- and tell them
that you’d forgotten sometimes?

Yes, I did actually. She asked me if I had and I was
like, I’ve missed a few weeks Just because I’m sometimes really ill and I,
like just before my birthday I was in hospital. And they think that I may have
bowel disease now. But, so I’d have to leave, I’d, because I went in A and E
I’d forget the, to take that in with me. And my mum wouldn’t have a clue where
to find my, so it would just be quite complicated, yes. So there’d just be
times where I’d be too ill and forget about it. Or there’s other things as
well, like my, because I’m, in college I do shows and everything.

Acting?

Yes, musical theatre.

Oh, lovely.

Yes.
I’d like to talk about that as well. I don’t think we
can. I just wondered what was the longest you missed then? How, you know, was
it like just one you forgot to take it the one night? Or was it like did you miss a whole week at some point?

I think I missed a couple of weeks at one point.

Did
you

Yes. Because it was just so complicated. Because if I
took the tablet I’d have to sit up. And it would be too late of a night to take
it by then because I’d just want to go to sleep because I had college in the
morning.

So what medication
were you on before then, before the trial? You had the chemotherapy, but were
you on, taking anything then?

Yes, I was, I’m still
on now prednisolone, which is what they’re doing the trial for. Because it
causes, because that’s the steroid and it causes brittle bones.

So you still take
that?

Yes. I’m coming down
off that now though.

And did they, do you
understand what the purpose of the trial is, what they’re aiming to do?

Yes, to, like I said
before, to like see if what I’m taking helps make my bones stronger. Or if it’s
the calcium, because I get a tablet and I have to take calcium every night.
I was going to say,
what, what is it? What does the trial involve for you? What do you have to do?

Yes, I have to take a
tablet once a week and then calcium every night. Which is quite, it’s harder to
remember taking it once a week instead of every day, because that’s just
routine. But once a week is quite difficult to remember. And then the calcium
to take every night. Because it’s not very nice to take them if you haven’t got
juice in the house or something. It doesn’t taste nice.

Does it come as a
liquid then?

No, it’s in a sachet
and you’ve got to put it and mix it in your drink. And it’s not very nice to
take either.

Isn’t it?

No.

Do you have to take it
with some juice?

Yes.

Like take it with that?

Yes.

And that’s every day?

Yes.

Is that just once a day?

Yes, once a day.

And then, so you take
that and then you have to take, what’s the, what do you have to take weekly?

it’s just, I was on a
place-, I can’t say the word. The, you don’t know what it is. Because it could
either be a false one or a real, real one, because they’re just trying to see,
they’re try-, whether the calcium works best or the actual tablet works.

So were you randomised
into –

Yes, groups, yes.

So tell me about that
then, how that, how that goes about. What does that mean?

Some people have got
the actual drug and some people have got the blank, what is it?

The placebo.

Yes, the pl-, yes. And
you don’t know which one you’ve got. And you, we’ve all got to have the calcium
as well. And whoever’s got the real drug, it’ll show whether that’s worked,
compared to the people who’ve just been taking the calcium. And they compare it
to see which is best, the calcium or the actual drug.

So when did you get invited to take part in the
clinical trial?

I think it was about a month or two after I’d been in
hospital for my chemo. And they came, actually, no, sorry, I had to go in August
for three days to get my first dose, and they came in and asked if I wanted to
be part of the trial.

And how did it feel at that time? Did you understand
what was happening when they asked you? And, because you’d not long been
diagnosed and you were just having treatment, and then you’re asked to take
part in something. I mean how did that sort of feel?

A bit overwhelmed, but like my mum suggested that
would probably be best for me because they kept an eye on me, on my bones.
Because they told me that I could have silent fractures and that. So I get
regular bone scans of, and that.

What does a silent fracture mean?

I could fracture one of my bones and not know about
it.

Would it not hurt?

No, it’s not meant to hurt. it’s just meant to happen
and you’re not meant to know about it. it’s quite weird.

Have you ever had that?

No. I just keep on having my scans now and then, and
it seems fine.

So when you were invited, were you in hospital at that
time
Yes.

eceiving some chemotherapy
Yes.

reatment already? So
how long had you been in hospital?

I think they might have come in on either the second
or the third day I was there.

Was it a nurse or consultant that asked you?

It was a nurse, I think. She was, she, I think she was
involved in all the trial and that.

And how did they sort of, how did they invite you?
When I say that, is,did they asked you and you said yes? Did they give you some information, explain things to you?

Yes, they explained about how it’s going to help in the future people who are going to be on steroids and everything. And it’s to see, it’s, whether it’ll strengthen your bones. Because with steroids it’s got a long, long-term side effect of brittle bones and everything. So this is trying to make my bones stronger, like to see if it does help my bones getting stronger.

Did you make the decision quite quickly?

No, they gave us time to think about it. Because there
was this, I think they came to see me when I, my mum wasn’t there. Because she
owns a café, so she was, was quite busy. But when she got there, talk about it,
and as soon as my mum got there she said, Do it Because I was a bit unsure
about doing it. But then she was like, Do it, because they will keep closer an
eye on you And it is so rare, what I’ve got, that they won’t be able to find
that many people to do it.

Why were you unsure at the time?

Just, it was, I don’t know. I didn’t, I didn’t really
understand at first about it all because they just came in and started to talk
to me about the trial and I was like, Oh And then they explained it more.
But once my mum got back, well, they explained it again and then I think I took
it in a bit more and I understood then and thought it would be quite a good
idea.