Raymond

Age at interview: 58

Age at diagnosis: 57

Brief Outline:

Raymond was diagnosed with prostate cancer and opted for surgery. A nurse invited him to participate in the 100,000 Genomes Project and he agreed because he wanted to help others.

Background:

Raymond is married with two children aged 35 and 33. He works full-time in the construction industry.

More about me...

In early 2017 Raymond was diagnosed with prostate cancer and opted for surgery but his recovery has been slow and he has experienced several health problems. He feels that he didn’t receive all the necessary information about how to look after himself following his surgery. He says that he was supposed to have a pre-op appointment with the physiotherapist to find out about exercises and general post-surgery care but that it didn’t happen until after his surgery. For instance, he didn’t know he was not supposed to drink coffee or tea for some time following the operation. It has taken him several months to get better and only recently he has been able to go back to work.

He was invited to take part in the 100,000 Genomes Project and had an appointment with a nurse who briefed him and gave him information leaflets which explained the details of the project. He remembers reading through it, but just quickly. Raymond signed the consent form without any hesitation because he wants to support cancer research and “if it just helps somebody later on, it’s a good thing isn’t it?”. Taking part in the project involved donating blood and tissue samples, which was taken during his operation.

Raymond said there was a lot to read and it took him half a day.

Do you remember much about what information you were given about the project?

Not really I barely. I had enough paperwork to read. Once I had the operation I just put it all away anyway but it takes a lot of reading you know what I mean. Part or half day I spent what I was supposed to read through [ha]. I’m not the fastest reader as you can see [ha].

And did you read the information?

I read all of it yes, all of it.

You know what I mean. I didn’t really read through all that.

Ok

I sort of really read a bit, missed a bit and read a bit. You know what I mean.

Ok. It’s quite a 

Yeah it’s - isn’t it.

It’s quite a wordy type of. 

Yes.

Raymond wanted to contribute to medical research about cancer as he says it’s “one of the diseases they just can’t seem to get on top of it?”

Have you participated in medical research before?

No nothing wrong with me before so [ha].

So this came about because you, you were diagnosed?

Well yeah, I was aware so this cancer is one of the diseases they just can’t seem to get on top of it can they really. So the more help they get I suppose to have somebody else to help them.

Ok so you felt strongly about it?

Yeah, yeah it’s about, that’s why I’ve done it. You know what I mean.

So it was because of the cancer?

Yeah just cancer.

Raymond was told about the project just before an operation for prostate cancer. He signed for “that much stuff” he can hardly remember, but says he was happy to sign if it would help someone else.

And regarding the Genome Project did you find the information they gave you helpful about what this trial was all about?

Well no to be honest with you I only signed it at the hospital. I read through it as quick as anything. I didn’t really sort of take a lot of notice but I could say reading it being a booklet that was given me and yeah it. 

What, because it must have been a period in which a lot of things were happening. You had just been diagnosed with prostate cancer. You were invited to take part in the Genome Project.

Yeah no as I say there was not only that one, there was another ones there, I signed that, so I signed for. You know what I mean.

Ok

So they can take the prostate away and other have, other have some of it, not all or will have some of it, whatever and as I say I signed for that much stuff I can’t really remember. I know… they just wanted to take blood out of me, to be honest [laugh].

Oh ok. So you knew that a bit of the tissue sample was to be collected?

Yeah, yeah, well yeah.

To keep and to investigate. Ok. Did you need at that time any more information about this project?

No, no basically I forgot all about it I would have signed for it anyway. You know what I mean.

Ok. Was it a difficult decision to make to take part in this project?

No, no as I explained if it can help somebody out at a later day they’ve done a lot… haven’t they. You know what I mean.

Raymond said it didn’t cost him anything, so why worry about it.

Do you have any messages for people who are invited to take part in the Genome Project? What would you say to them? I mean.

Oh I would say it’s their own choice isn’t it? I mean the reason I did it was like I say to help someone a bit further down the line, a bit of tissue that they’ve taken from me, blood whatever they might find something there that, you know, may like trigger something off a bit further. You know what I mean. You don’t know do you? I don’t know. It hasn’t cost me anything so why worry about it. You know what I mean.