Quotes from patients

Involvement

‘I did intelligent searches…I was confident and used to reading science papers…’ (P6)

‘I had read on the internet all about these different prognostic indexes and stuff…when I was told prognosis was 5 years…I already knew what prognosis meant’ (P34)

‘I’d be looking at Lancet type papers…PubMed’ (P24)

‘it turned out the free light chains had rocketed… so that ruled out a second stem cell transplant’ (P18)

‘it’s good to know statistics…I wanted to know about survival figures…I realised that I was looking at the population as a whole, but then I thought I’d look at younger people…’ (P3)

‘it’s challenging because you will reach the buffers at some point, when you think, that’s just a little too difficult to understand’ (P6)

‘you have to be reasonably assertive, which is maybe not my strength, but I force myself in those situations where I know how important it is’ (P3)

‘we knew the gold standard was treatment with Fludarabine, FCR as they call it, it really wasn’t recommended for people aged over 65, but nonetheless it was on offer to us…we actually then chose the Bendamustine route…the gentle one…which was a good alternative…we’d done our research, we made an intelligent decision’ (P6).

Disengagement

‘I don’t want to go into details of things…the people at the hospital are there to help me…I put my absolute trust in them’ (P10);

‘I went along with everything that I was asked to do because I have complete confidence in how they were handling the situation for me’ (P14).  

‘I’ve got a little tablet but I very rarely use it. I don’t like to, I’m not computer literate’ (P30)

‘the specialist at the hospital said, it’s only forty-four, which meant nothing to me, forty-four what? She didn’t say what and I never asked her.’ (P31)

‘sometimes they come out with all these big words and then you think, I’m not sure what that word is’ (P24)

‘I have glanced through it [booklet about myeloma] but it’s a bit too high a level…it needs to be basic’ (P21)

‘I saw this research about myeloma…and when I read the title I wasn’t sure whether it was going to be that helpful, because I didn’t understand what it was really…’ (P35)

‘psychologically, I brush it under the carpet a bit because I know it [chemotherapy] is not imminent’ (P5)

‘I’ve just gone back to being anxious again…it’s just horrible being in this position where you know it’s [paraprotein level] is creeping up’ (P35)

‘I am strong, you know, but it just becomes too much… I want somebody just to hold my hand and go, I’m going to sort that for you.’ (P33)

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