Yes, I think they need, because some of the tests have, sometimes you go along and you have to fast in the morning, and they take blood samples, they set up a cannula in your arm, so obviously they’re not just constantly, you know, putting needles in, but they put a cannula in and they take blood every so often. And then halfway through the actual testing they’ll then say, Could you have this sugary drink which isn’t the nicest tasting drink but it’s all right, and maybe you’ll get something to eat as well, and then they take more blood samples. And it’s to see how – I think it’s to see how, you know, your blood supply, you know, goes to like to the fat tissue round your stomach and, you know, all that kind of thing. I mean, I don’t know enough about it, but yeah, so—

Yeah, so they want to…

They need help, they obviously can’t do that with people who are diabetic.

No.

But they need people who are healthy and don’t have diabetes, to see how the body reacts.

We turned up, we were weighed, we, our blood pressure was taken, our heart rate was taken, our height was measured. It was basically those sorts of measures, basic measures. And I think some blood was taken as well. And the blood was later tested for various things. And we got some, and we got a report back saying where we stood in relation to, to all these measures in terms of, I think , you know, where our blood pressure was, where our body fat ratio was and all those sorts of things. It was basic metrics, I suppose, for medical health.

So you actually asked them if there was any research going?

Yes.

And what did they tell you when you asked that?

So the clinic sent me to see the research midwives. The research midwives thought for about 10 seconds and said, Oh well, here’s one that you’re qualified for And I came into the category of a slightly higher risk pregnancy because of having had IVF. And the research midwives were terribly apologetic that this would involve an extra blood test and an extra urine test every month, and a bit of going out of the way on my part, and I reassured them that I was very, very happy to do all of this. And in fact the blood tests could usually be done when I went to the antenatal clinic, so there were only a few occasions when I had to have an extra blood test.

And that involved an extra visit, did it? You had to go off again to the hospital?

Sometimes yes, sometimes no.

I’ve had two lots, actually, where I’ve had biopsies. The last one… I’ll tell you about, yeah, just the biopsy, but there was a little bit extra that I will tell you, because I’m not sure if it’s linked into it or not – again, because I don’t understand the medical bit of it. But I’ve had two lots of biopsies and the last one was on my stomach, and the good bit of news for me is that they’re looking for fatty bits and I apparently don’t have much fat around my stomach, [laughter] which is really nice for me.

But it’s like just a normal injection needle put in, but what they’re doing is they’re putting like a catheter-type thing and they draw off fluid. And the last one in particular, what they had to keep doing to draw it off, they had to wobble it – well, they give you a local anaesthetic first of all. They do give you a local anaesthetic, and again they ask you at every step of the way, You don’t have to do this. You can stop if you want So, you know, you get a local anaesthetic sort of into your tummy, they put the needle in, and they wobble it and it’s just to get presumably the fluid or whatever just to come out, suck it out. I was asked if I wanted to see it. I have to say, because the girl, the nurse that did it is the one that I’ve got quite friendly with, and she said, This is a really, really- – oh, and you have to keep very, very still –this is a really, really good sample. Do you want to see it No, thank you. I don’t. I don’t want to see it. You just do what you have to do with it. No, I don’t want to see it at all

Every time they stuck a needle into me they put a smaller one in with lidocaine in so it was locally numbed.

And then at the end of it they just said they wanted to take some biopsies. And they were the slightly more painful elements, in that it’s a much bigger needle, despite the lidocaine. And I’ve got a photo of the bruise, if you want to see it [laughs]. I took a picture of it afterwards. But it did bruise quite – they take one out of your stomach and one out of your thigh. The thigh was fine, and I think it’s just to do with the muscle mass. And they, what they were doing was extracting a very small amount of fat, in order to analyse it.

Well, it’s been a wee while since I did one and I can’t remember when, I’d have to go and look up, but I would say that as time has gone on they have got more and more in depth. So I suppose like you start off maybe just having a blood test done, and then it’s got more and more and more involved. And I think from what one of the nurses said to me it’s that when they’re doing their research they obviously are looking at different things and people’s, you know, like blood might match up to something that they want to then move on to the next stage, or whatever. But they always tell you in advance what they’re going to do. The last one I did, did involve, it was quite invasive, and they did tell me that it was very invasive, and I read through it and I thought about it and thought about it, and decided that, yes, I would go ahead. There was like one instance where they were sort of taking blood from an artery in my leg that they just found it quite difficult to do just because of, I think, the anatomy of it all more than anything. And they decided that, you know, that it wasn’t going to work, so they stopped, you know. I was left a little bit bruised and a little bit sore, but they were very, you know, they were just very kind and made sure that I was okay and that I was happy, and that they gave me, the doctor even gave me his number and said, you know, If you have any problems you can phone at any tim, and you know. But it was at the end of the day it was a bruise, you know. And it goes.

Has it put you off a bit?

It did put me off slightly at the time, yes. I think – and I think because they’ve got more invasive as they’ve gone on you do start to think, Mm, do I really want to go through this But having said that, if the letter came through next week or in a month’s time, I’d probably do it again.

I do think, [mm] well, yeah.

I do think that [sighs], you know, it’s a bruise, at the end of the day. You know? And I know – because, I think because I know them so well now, I know that they wouldn’t, I trust them not to do anything that, you know – I think it – I know that if they felt that they weren’t going to get what they wanted that they would stop. And likewise I also know that if I turned round and said, Look, I’m really sorry. I’ve – enough is enough I know that they would be, they’d stop as well.

So that trust…

Yes.

…coming from knowing them is quite important?
Yeah, and I suppose as well – well, the way they’ve done it, I don’t know if everybody does it that way – but I suppose you start off that they’re not asking, you know, the actual research study day isn’t asking for very much, and it just gets slightly more in depth as you go on.

The first one I was involved with was the donation of surplus tissue from my cancer operation. So basically they asked for any surplus that was left over from whatever testing they needed to do during the operation or after the operation, whether it could be banked in order to do research. And that was fine. I think it was introduced to me in the pre-operation visit to the cancer clinic, and somebody sat down and talked it through with me, which was fine and, you know, I didn’t have any problems with that at all. So that was the first one.

And did, when they took your consent, did they tell you whether it was for a specific bit of research, or just for banking for any future uses?

No, it was for banking for anything, really, any future uses. Although I think it was to do with cancer research, although I’d probably need to go back and check the information. But I think I, it was to do with cancer research.

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.

And then it’s, then you go up to the neurology ward. Where you’ve been in the scanning unit for most of the time before that, then you go up to the neurology ward to have a lumbar puncture. It is not compulsory to have a lumbar puncture and they make that very clear, and also the fact that you agree to it one time means there’s no compunction on you to do it again. If you want to opt out you can do so, and there really is no pressure whatsoever. But for me it, it’s not a worrisome experience at all. it’s a question of sort of lying fairly still and as curled up as one can manage for a few minutes, and I think the worst bit is probably the cold disinfectant on your back, really.

A very tiny, tiny injection of local anaesthetic, and to be honest I’ve always been one who once the local anaesthetic’s working it’s fine, it really is. And it’s the same if I go to the dentist. I’m not, you know, once an injection’s working they can do what they like, really. Just so long as I know that everything’s nice and numb, that’s fine. And it’s just this sort of feeling of a bit of prodding in your back, really, which is not – it’s weird, but it’s not unpleasant, and I don’t, I personally don’t find it a difficult process at all. But I do know that for some people it’s a step too far, and the great thing about it is that the researchers know that and they really do not put any pressure. In fact there’s more pressure sort of, you know, or more facility for you to opt out than opt in.

One thing I don’t take part in and that’s – I’ve forgotten what it’s called.

A lumbar puncture?

Oh yes, sorry, yes the lumbar puncture. I had one ten years ago when I was first diagnosed and it wasn’t a very pleasant experience. The consultant asked if I could have some, or if he could have some trainee doctors in to help me – well, not to help me, to take part in the process to see what a lumbar puncture involved. And he also said that whatever I did I mustn’t, whatever I do I mustn’t move. And so we started off with the puncture, and he and the trainee doctors all had a chinwag about what the weather was like that day or whatever, forgetting me, the patient, and I started getting a bit panicky, I was – and in the end I shouted out to one of them, or shouted out to them, I’m the patient here. I’d like a little bit of confidence-building, pleas, and then I got, well, one of them started talking to me, which is all I wanted, just reassurance and comfort, comforting. But it’s put me off lumbar punctures from then on. And I’ve heard plenty of good results with lumbar punctures, but in the [Motor Neurone Disease] study I’ve been told it’s not essential for the study for me to have a lumbar puncture, so I’ve decided I won’t.