And did they mention
about any side effects at all?

Yes, when I started
all the treatment they explained it all, like what kinds of things can happen
like hair loss and stuff and all different, they made it easy to understand. So
what to expect, won’t be shocked.

And did you have any
questions at that point? Was there anything that, you know, worried you at the
time?

No, not really because
I sort of expected all the things like.

They were what you
expected anyway?

Yes, like I thought
about, about hair loss and all that, but I wasn’t really bothered.

Was there anything
else? I mean have you experienced, apart from the hair loss, have you
experienced anything, any other side effects in relation to

I’ve had bad cramps
like with the, with the steroids and bad back, pain in my legs and stuff. But
they give you painkillers to monitor it, so you’re okay.

They give you more pills?

Yes.

But were you concerned
when you were getting those? I mean were they clearly explained that you might
get cramps?

Yes, yes. They explained
all the stuff that could happen and then they told us how they’d try and stop
it and stuff and get rid of it if it happens.

So can you tell me,
can you remember what the side effects were?

Of?

Of the, when you were in the trial aspects of the treatment
and the drugs that you were taking or are taking.

I think, you have
vincristine which is chemotherapy and it can make your, all your joints ache,
like your knees and your back and stuff. And it’s very painful, but they give
you like painkillers for that. And the steroids can just like make you
constipated and stuff and give you, yes, I think it’s mainly the one from the
steroids make you constipated. And they give you more pills to get rid of that.

Like a laxative type
thing?

And that’s about it
really from the chemotherapy.

And you’ve had, you’ve
had all of those things that they’ve said?

Yes.

And how does it feel
going through, you know, in, with all those side effects as well?

If you take the
tablets they give you and stuff and, it doesn’t seem to be as bad, like they
get rid of it pretty quickly. But can make you feel pretty bad, then you’ve got
bad head and like and backache.

it’s pretty much the
same as before I was in the clinical trial. Just, still have to go in to
hospital for chemotherapy. Nothing’s really changed. Just a different treatment
plan.

Just a different
treatment plan? What’s, what’s, what’s different about it?

Just, for the first
lot of treatment I had to go in on certain days for a short period of time,
like an hour each day. But as it changed, I have to go in two days each
treatment cycle for six hours each day. And that’s it. So it’s just changed
times.

Just changed times? Is
that okay?

Yes.

Does it, do you have
to keep, you know, going to and from the hospital to do that?

Yes, you have to go in
on a certain day and just have chemotherapy.

And is that sort of weekly?

Yes, you have to start
the treatment and then after a week, and then two weeks off and then start
again.

So you have a week, a
day?

A day at the start and
then seven days, seven days at home on tablets. And then another, another day,
and then another seven days on tablets. And then two weeks off, and then
starting again. Yes, I take steroids and the procarbazine which is chemotherapy
as well.

And is that done by
drip?

I have, the chemo,
yes, is done by a drip.

And how does it feel
like going through all of, you know, being in a trial? What does it, what does
it, does it feel any different?

No, not really. It
doesn’t seem to feel any different than the normal treatment.

I’ve been diagnosed
with, with Hodgkin’s lymphoma in, in March. And I’ve had four lots of
treatment. Going on to the fifth lot of treatment now for the clinical trial.

And when, was it March
this year?

Yes.

March this year, you
were diagnosed? And at what point did they invite you to take part in a trial?

It was after the first
two treatments. That was after the first two months of treatment they invited
me for a trial.

How did that feel at
the time? Because it was quite soon, wasn’t it after
It was a bit
confusing. I didn’t know what, like whether to go on to the trial or not. But I
decided to take the trial and get on with it.

What did you find
confusing at the time?

Well, you could pick
different treatments and find which one was be-, best for me and which was the
best one to take.

So it was sort of
deciphering what was the best way forward for you? Did, did they, was there,
did they give you lots of information to read?

Made it helpful, easy.

Was it easy, was it
easy for you to sort of read and understand?

Yes.

Was it a lot of
information?

Yes. It was, like they
highlighted the main bits. Which was helpful.

Did you have, what,
did you have questions you wanted to ask them?

Yes, just like which,
which, how often would I be in hospital, which one more, and which one,
different treatments and stuff. So a few questions.

I think it’s quite
important, isn’t it? Were they able to sort of ex-, answer all your questions?
Did they sit and explain with you?

Yes. We spoke to the
consultants and they explained about the different treatments.

How, how did they sort
of go about that?

Well, we were in
hospital one day. We just, mum organised to speak with the consultants and we
just, she explained what like different treatment, like clinical trial, what
would be normal

And did they explain
the difference maybe between what, having the usual treatment or the treatment
you would have had to being in a clinical trial? Did you understand what that
was?

Yes, they explained
that, they asked me to like, the, the clinical trial leaders first like, before
like saying that, scan results and stuff like that and treatment.