No, I felt the information was fine, but I’m not a person that reads instructions. I didn’t want information, I didn’t want instructions, I just wanted to get on with it. The other thing that I found quite hard throughout, and this wasn’t just at the cancer centre but other places, is when you’re asked to make your own decisions. I do my job, I consider myself the expert at my job, and the doctors are doing their jobs, and they should be the experts at their jobs. And if they want to come to me for my professional advice, I’ll give them my professional advice, and I’d like it to work the other way on, but I feel that they just give you the information and tell you what, what your choices are and you really have to make a decision from there. And I think I found that really hard, knowing that you’ve made the right decision.

No, if they want to take some blood or want to take some tissue sample, or anything, fine. Get on with it; I’m happy to do that, if it means that I get what I want.

Do you remember signing consent forms?

Yes I do, yes, yes. I’ve always signed the consent forms. And I’ve always felt that the hospital has been very anxious to make sure that I had all the information and that I signed all the forms and I did everything properly. I wasn’t bothered about that, but that’s the way I work anyway in the rest of my life, so I don’t suppose that’s any different.

Do you sometimes feel that actually with things like tissue samples and blood samples that we go through too many consent procedures, or do you think it’s about right?

I think it’s difficult, because I think so many people are so different. And I do think I’m probably right at one end of the scale, and I think it’s hard to consider the other people at the other end of the scale when you don’t know how that feels. So its fine for me, I don’t mind. But then there are other people that would mind dreadfully.

you said you don’t sort of like reading too much about the rules and stuff, and when you get information leaflets about different research projects do you sit and read them fully?

No [laughs]. No, never.

Do you think the doctors would be shocked by that?

I think those that have sweated blood in order to write them in the middle of the night might be a bit upset with me, but they have to do it, and I think it’s the same as things in my job – you have to do them. Whether they’re needed or not is irrelevant. You know you have to do it. So they might be upset, I don’t know. I think they probably know me well enough by now to know how I’d react anyway.

I still go to the hospital regularly. it’s just been changed to six months, four years later. It has been three months. I went during the first year – the trial lasted a year – during the first year I went every three weeks. I had blood tests taken, I think more regularly than that but certainly every three weeks, but those were the terms of the trial. So I think that by joining in with the trial I actually got better looked after than, or more regularly looked after than I would have done had I not been on the trial.

Yes, I suppose that brings us on to sort of reasons for taking part in research. What would you say?

Totally selfish, totally selfish reasons.

So do you have any sense of how they’ve used the samples that they’ve taken, what they’ve done with them?

No not really. The trial that I was on for chemotherapy I was kept fairly well informed about that, and for pure nosiness I read up about it on the internet when the trial results came out. But I found them quite shocking, and in a way quite upsetting at the number of people who hadn’t survived the trial, so I think going back to my plan A of not really knowing or wanting to know about it is probably the best one. I think some people would lap it up, but I’m not really interested. But it is good to know – it’s sad to know that so many people didn’t survive the trial regime, but it’s great to know I’m one of the survivors. And if I hadn’t done it would I still be one of the survivors? So… enough knowledge, but not too much.

Do you ever worry about if samples – I don’t know, I mean are the samples that you’ve given, do you know if they’re being kept long term for other research projects?

don’t know, don’t care.

I think you have to look at it. I think – we were talking about the placebos – and I think you have to look at is it sensible? Is it perceived that it is better for you to take part in a trial? Do you feel safe taking part in the trial? Do you trust them? And I think if you can answer all those positively, go for it. But I think if you have doubts, and there is a tried and tested way of treating your particular illness, stick with the tried and tested. I think it’s a balance thing. And I think to talk to people about it who have a modicum of knowledge, be it friends who’ve been through it or professional people, but you have to make your own decision in the end, and you have to be comfortable with your own decision.

And anything specifically about if people are approached about giving blood samples, tissue samples?

I think that’s personal choice. I think you’ve got to just make your own decision, and if you’re comfortable, again, if you’re comfortable with it, and you trust the people you’re with, and you feel safe with them, do it.

The other thing that I found quite hard throughout, and this wasn’t just at the cancer centre but other places, is when you’re asked to make your own decisions. I do my job, I consider myself the expert at my job, and the doctors are doing their jobs, and they should be the experts at their jobs. And if they want to come to me for my professional advice, I’ll give them my professional advice, and I’d like it to work the other way on, but I feel that they just give you the information and tell you what, what your choices are and you really have to make a decision from there. And I think I found that really hard, knowing that you’ve made the right decision.

Is there any kind of medical research you don’t think you’d take part in?

I wouldn’t take part in any medical research that was going to give me drugs that I didn’t need, so if somebody suddenly said, Oh, we’d like to give you drugs to see if you don’t get arthritis’, I wouldn’t do that. I don’t actually – although I’m, although I desperately wanted the drugs for the cancer and I’m happy to take any drugs that are deemed necessary to keep me fit and well, I don’t actually like taking drugs. So tomorrow I’m going to have the flu jab. I don’t really want to have it, but I think it’s sensible to have it, so I’ll have it.

So things like sort of healthy volunteers?

No, no.

You wouldn’t go for any of those?

No, no, I wouldn’t at all. I think your body’s too precious; I think your health is too precious. And I think too many people throw it away too easily, because I was 40 when I was, just 40 when I was diagnosed the first time, and that’s terrifically young to think that your life potentially could be over. And to make yourself ill by doing drug trials when you’re not ill in the first place I think is not something I’d do.

And since then have you been in other research projects?

Well I think I have, but because I’m so happy to do them that at the hospital I’m asked Will you do this?’ and Will you give some blood for this?’ or Will you do this?’ or Could we take some tissue for that?’ that I just say yes, so I don’t, I couldn’t really tell you how many times, because it’s just as a matter of course anyway, and it’s something that’s easy to do, it doesn’t hurt, it doesn’t involve hospital stays, it doesn’t involve anything.

So they’ve taken pieces of the tumour, have they, to use in research or?

I really don’t know the answer to that one. The tumour that was taken from my bowel and the tumour that was taken – no, there was just the tumour taken from my bowel, sorry. The tumour that was taken from my bowel and the one from the liver was a biopsy to see what it was, so what that’s being used for I don’t know. I probably signed it at the time but was too confused to know what I was signing, so.

[laughs] Does that worry you?

No, not at all, as long as I’m alright. I have no real problems about what stuff’s used for once it’s taken away from me, so not a problem.

I think you feel – one of the things I think you feel when you’re diagnosed with cancer is your lack of control, your loss of control. You – I’m in a job were I control an awful lot of things, I control a lot of things that go on, I control a lot of people, a lot of processes, a lot of systems. And suddenly something is happening to you that you can’t control, and I think that is a horrible, horrible feeling. And I think that you have to build up a team around you that are sort of like Team Karen that are fighting for me to survive. And that’s your friends, it’s your GP, it’s the people at the hospice, the day hospice that I went to, it’s the people at the hospital.

And I think if you can build that up and feel as if all those people are rooting for you, I think that it makes you feel as if you’ve got a little bit of the control back. So I think that’s just a way of looking at it. I’ve probably not looked at it that way before, but it’s a good way of looking at it, that you’ve got a team around you helping you.

And I think you also need a mentor at the hospital. I think you need to build up relationships, and not just be a number, and I think that by being on a trial you end up being a bit more of a person and a bit less of a number, and I think that’s really important. And if I can do anything to help, like this interview, in order to help me get better treatment I will. If it helps other people, great, but I’m selfish and it’s me.