Well it sounded like a sort of big project. Sort of an ambitious one, so something that would be influential, not just a tiny thing. It sounded like a really big one. So that makes, you know – to me, yeah, it sounded useful. The fact that I might get extra screenings was a, was a plus. You know? Whether that actually will happen or not, I don’t know. But I guess that’s, you know – that’s a positive thing. And it’s almost giving something back isn’t it [laughing]. In, in a setting where you are, well receiving free health care from the NHS basically, and yeah, returning something to it.

Julie: I think it’s just the time you have to wait now that’s the issue. You know you get. We thought we might have got some results by Christmas but we had a letter to say it will be another 9 months at least. So

Right ok.

Julie: You know it’s just the waiting now really.

Ok so when you got that letter how did you feel about it?

Julie: We were a little bit sort of disappointed. We thought maybe we’d have got, you know. But we understand I mean the testing is very quick but it’s the reading of the results that takes the time. And you know you kind of have to understand they’ve got lots to look at haven’t they?

Sure. Did they, what did the letter say? I’ve not actually seen one of these letters.

Julie: I mean I’ve probably got it somewhere in the file to show you.

Mark: Yeah

Julie: I think it was just basically, you know, we’re very sorry but there will be this sort of delay, possibly another 9 months so.

Mark: It’s kind of a just to keep you updated with events XXX.

Julie: Yeah. I mean we were told to expect maybe phone calls sort of for extra information. We’ve not had anything like that. So

Ok.

Mark: [mutter]

Julie: They’ve not needed to ask us anything else yet. So

And do you expect any results at all?

I don’t, I don’t.

And, and how do you feel about that, if you didn’t hear anything?

I’m quite happy. I’m quite happy about that.

Yeah.

Anything that reduces the time they have to waste, not doing the experiments and studying the samples and things, you know – it’s fine.

And so you’re quite happy not to hear any more, sort of results?

Quite happy.

Okay. And why do you think – why is that?

Why is it?

Mmm.

Well I don’t think they’d be taking the samples just for fun. They convinced me that they were taking the samples for excellent reasons. And once I’d agreed to do, take part in it, then I was happy to leave it to them.

Yeah.

They’re more intelligent than me about such things.

Ok now receiving results or feedback you said that you haven’t received any feedback or results yet?

No, not, not on what the actual reasons behind why I’d got the cancer, no.

In which form would you like to receive those results: in a letter, telephone, I don’t know.

Well if like now I just wouldn’t mind going back to see [consultant], you know, see the consultant. And him say to me, This is what caused it and this is, you know, what you’ve got to avoid in the future. Course if it was going football I’d got no chance I’d still go. Sorry.

[chuckle] If you were

Got that bit out

Not allowed to go back to see your [laughter]

Oh dear, oh dear. Sorry

Your team when do you anticipate receiving results? Did they give you a date?

Well he didn’t give me any indication really but I presume when I go back in February next year he’ll be able to give me a full overview, wouldn’t you? He should know by then shouldn’t he?

After the consent and the sort of the sample taking and everything have you heard from, from them again?

No

do you think that could be improved?

Well I do think that afterwards they could say, we took everything. It was all very successful, you know, within the next 12 months you’ll get the results dah-de-dah.

Ok so that could be one aspect that

Yeah they could send you a letter afterwards to say that everything had gone as planned, couldn’t they?

And what, did they talk about you getting results, or not, about this?

No. That, that, that were another thing that I were disappointed about. You, you don’t get no results or, or anything about, you don’t, once you’ve given your blood and your tissue and everything else, you don’t get no comeback from it at all. And that’s what disappointed me as well. I were a bit disappointed about that.

You would ha-, so they didn’t say you might get results in a year or two years-

No.

-telling you-

No.

-about-?

That’s, I was a bit disappointed about that, you know. They didn’t say that I’d get any results from it at all. They didn’t say nothing about that. So I just understood that they took that for their research and it, and I weren’t gonna get nothing back from it. You know what I mean?

[mh-hm] Would you like to get a letter explaining?

Yeah, I would, yeah.

Okay.

I think most people would actually.

Okay. And that’s just for your own sort of xx?

For your own, yeah, that’s right.

Okay. Okay, so you have no results?

No, no information at all really.

Okay. And why would you like to have that information?

Well, I’d be interested to see what they’d used it for and what sort of things they were doing. You know what I mean?

Okay.

You know, I think most people who, who joined it would be interested to see what happens to their blood and, and their, their tissue, what it went for and what they did with it and-.

So you would like a kind of update on what they’re doing?

Yeah, yeah.

Okay.

I mean nothing, nothing too elaborate. Just basically know, you know, what they did with the, your blood and what they did, why your tissue went there and, you know, things like that, just general things really.

Okay. Just to send sort of a letter saying-

Yeah, that, you know-

-this is where we are at this moment?

Yeah, yeah.

Okay.

Because sort of you do all these things and then you’re just left dangling in the air sort of thing. You don’t know what they’ve done with your blood or anything. I mean they explain that it’s for research and things like that. Which you understand. But we’re just interested to know what they used it for.

Okay. So it’s not so much about personal results, it’s about the results of the research in the project?

Yeah, yeah, that’s my personal view. But I mean probably other people would like to know about the results or something, you know.

Okay.

Because, to be quite honest, my understanding is you’ve not joined it for a personal thing, you’re joining it for research more than anything. So-

Yeah, so the common good xx?

Yeah, that’s right, yeah.

If it’s just to say they’ve not found anything, I would perhaps want an appointment to see somebody so that I can then ask what, you know, what will happen then – do you just leave him, or? If it’s to say they’ve found something and it’s this, that or the other, then I think perhaps I’m happy with just a letter. Don’t think – yeah. Yeah. Don’t. Because if it’s, if it’s something – because if it is any further treatment, then we’ll obviously get an appointment anyway. If it’s just to say “Oh, it’s nothing to worry about.” A letter’s fine. But if they’ve not found anything, I would want to speak to somebody then.

So if they say “Well we found, we’ve found that it’s this.” Then you

I’m happy for a letter.

You’re happy for a letter? That’s really interesting.

Yeah. Yeah.

So you wouldn’t want to discuss it further, or?

No.

Why’s that?

I think because if it’s something I don’t want to hear, and I probably get a little bit upset, or agitated, or – I’d rather be at home, in my own comfort with my husband. But if it’s to say they’ve got no answers, or – I’d want, I’d want to ask what, what are you going to do next? Because if they just sent me a letter to say “Mrs [Name], we haven’t found anything.” I don’t want it to be left like that.

No I think, yes. I do want information, in a way. Although I said earlier, be careful what you ask for. But it is – you want to know really, don’t you. And also you know I have a brother, and I have children, and I have cousins, and if there is something genetic they need to know and be prepared.

Yeah.

Definitely, you know.

Yeah. So you would rather know, rather than not know, potentially?

Yeah. Yes I think so, yeah.

Yeah.

Yeah. But I think you need – you need advice when you get that information. You can’t just be given – this is whatever, what it’s going to be. But you can’t, you haven’t got the knowledge yourself to, to understand what that really means.

Yeah.

So I think you need some guidance then, I think.

And what sort of guidance would you want to see, or have with that?

Well you can talk to somebody – a doctor or a nurse or somebody – about these results, and say, “Well what does it mean for me in reality?”

Yes.

Because on paper it might be completely different to real life, isn’t it.

What were your expectations in terms of getting results back in terms of time frame and also what the, what you hoped the results would be able to tell you?

Ok. Again [sigh] we know it’s a long term thing. The, so and I guess our, my attitude is affected by the fact that RP there is no cure but it’s a degenerative condition but it’s a very, very, very slow degeneration. So I’ve got years and years of useful sight left. So therefore I’m not sort of, you know whilst I want to, the cells are dying in my eyes all the time but and you want to keep as much vision as possible if, if the answer is they find a condition that stops it. However, I know that, you know, I’ve got time if you like for. I would expect in terms of what I expect is they’ll come back with a, a full sequence of the DNA that identifies the faulty gene that is causing my specific condition.

Ok so when they have that full sequence what are your hopes and expectations for what they will do with that?

Well I expect they’d let me know but I think from and then it’s a link back to [Eye hospital] again where [Eye hospital] will. Because I think they’ve identified a number of genes. They may not have identified all of the genes that are defective that cause RP. And I think once we have established exactly what the issue is then hopefully in the future treatments evolve and those treatments will be likely, I think, to be specific to particular genes if you like. You know, so a condition will be established for one of these multi, you know, one of these multitude of conditions and you will be identified as a potential patient from what your, you know, what your genes are like and, you know, which gene is faulty.

More like a tailor-made treatment?

Well it not, they. So a, a faulty gene will cause 10,000 people to have a particular condition. So when they find a treatment it will be a case of fall back condition, bang, you know, we can do that. But in order for you to be definitely having that particular variant of RP then that’s something which will be identified from what the problem is you’ve got with your , with your genes if that makes sense.

Yes. So

So it’s not, it’s not personal to me, it’s personal, it’s sort of, it’s specific to the condition.

I was quite shocked when I found out I’d got a cancer because within our family we, we weren’t prone to cancer. So it, and I’d had problems with my heart for quite a few years and I actually expected to go out with a heart attack. So it kind of shook me but my brother had already had cancer of the throat as well but that had been remedied. He was fine and fit and dandy. So that was quite good. And I just thought we’ve got to get to the bottom of why I’ve now got kidney cancer haven’t we or cancer on my kidney.

But it was quite interesting looking at how different members of the family had died.

Ok. And the type of illness?

And the type of illnesses that they’ve had. Yeah my great grandmother, my grandma and one of my aunties had had pernicious anaemia. And my mum and one of her brothers had had horrific, no, one and a sister had had horrific leg ulcers so I, I wondered what the connection was. And I did wonder if this Genome Project might, you know, look into all those sorts of things or come up with what different genetics are there that don’t work properly, you know. And they might be what causes these cancers. We don’t know do we?

I don’t think I get any results. I don’t know if I get any. See, I haven’t read any more correspondence since, and it’s quite possible I’ve got a letter at home that I haven’t read. I just thought ‘yeah, there you go, have that out of my arm – have that other stuff out of the operating theatre. All I had to do when I was there, when I was having my operation, I had to keep telling them – because what sometimes happens is, the internal mechanisms in the hospital are such that you’ve signed all the forms, and you go for your operation, and nobody knows, so nothing happens. So I was engaging with it then, saying “Oh, you’ve got to this – I’m in this project.” But since then, I’ve never given it a second thought at all. Never. I mean, I could phone them up, and they – they might write to me. But I just can’t remember.

And do you know that they took the samples?

I’ve no idea. Not the faintest clue.

But when you told them you were in the project, did they respond to you?

Oh, yeah. Fine, yeah [laughing]. No, I didn’t ever ask. I don’t know [laughing]. That’s them now, I’ve done my bit, haven’t I. I’m not going to be dissecting them myself, am I [laughing].

So if you get results, would you like to receive them by letter, by email, in an appointment?

Ooh. If I got an appointment, I would immediately be completely panic-stricken, because I think they’d be about to tell me that my cancer had come back. If I got a letter, I’d want the first line to say, ‘your cancer is definitely not come back, do not think that. I’d like them to say that on the outside of the envelope. I wouldn’t want it by email, because I probably would ignore the email anyway. So, however they do it, they have to do it in such a way that doesn’t alarm. Because as soon as you’ve got something like this, you’re really hypersensitive to anything that says – although they’ve said oh, it’s all gone – you know – if I got a letter out of the blue, I’d immediately think it was going to say ‘oh no, we’ve changed our minds. So, sensitively. Probably by letter. I mean, I wouldn’t want to go for an appointment, because it’s – you know – I’ve got to go to work, and do other things. I don’t want to sit in a hospital to be told all about it, at all. Because I’m really quite busy [laughing]. I’ve got other things to do now.

Just discussed, you know, saying “Before we send the samples off, this is what we hope it’ll be. What did you think?” You know, “What are you – basically, what are you expecting?” And the information that come through did say, you know, you will get something back. But like I say, of course we want that. We want the feedback. But we also knew that it’s not been done before, so there were every chance that actually we might not get anything.

do you have sort of like any anticipation that the genomes, the sort of sequencing of the genomes will help, particularly?

Do I have my hopes pinned on it? Is that what you mean, or? Do I think

Do you hope at all?

I suppose as time’s gone on – I did initially when we joined it think that they’ll find something on the DNA, and they’ll recognise it and they’ll say “This is what it is, and this is what’ll happen.” But we’re not hearing anything, and seeing things change for [daughter], I now do have a reservation that if they do find it and say “Well we don’t actually know what this is, and we’re just going to have to wait and see.” I won’t wish I didn’t – I won’t wish that I shouldn’t have done it or anything. But I think I probably will think maybe not knowing was better.

So in terms of results what did they sort of tell you about the results of the project?

They said the results will take about twelve months to come through. That the Hundred Thousand samples have to be processed. It does take a period of time to do each sample. So we’sre aware that it will take quite some time to process all them samples. And they did say they would let you know if you were predisposed to any condition that they have treatments for. If there isn’st any treatment, ethically they are not able to do that. Personally, even there, I would prefer to know. You can make – again, you can make informed decisions.

Oh, that’s interesting. So they said if there wasn’st a treatment for

A particular condition. They’sre not able to tell you. Because ethically it’s not – you’sre giving somebody a worry that you can’st do anything about. But personally I’sd, even in that situation, I would rather know.

But I mean I’sve got three daughters. So I think that that was one of the reasons that it would be a good thing for me to take part in, if it was going to be something that would help the, in the future. If you know, if any of them happen to get this. I don’st know whether it’s a hereditary thing, I don’st think so, but. I don’st know, so.

Yeah, I mean when I, agreed to it I didn’st obviously know all what was, what was in it. But , no I think helping my daughters and helping anyone else that’s you know, going through this thing would be a – obviously it’s all cancers, isn’st it, it’s not just my one, it’s all the others as well. I think anything that can help with cancer, because it’s such a big killer of people.

Yes. Yes, yes I mean. I don’st think that in the – if I got results, what would I do with them, really? [Laughing].

And I suppose if, if it came to that it was a genetic thing – you know – then maybe that would be useful for the, the girls. I don’st know whether that would just give them something to worry about, that they don’st necessarily [laugh] – I don’st know about that.