Quotes from patients

Disease trajectory

Diagnosis

‘we were floored…[by diagnosis]…it hit us out of the blue…you can’t think of questions in that short space of time…we were speechless…we just sat there in shock…you hear the word cancer…’’ (P32)

‘it was a shock when he mentioned the word cancer…it just sort of shut me down…he was willing to give me information but at that time, I just couldn’t process it’ (P4)

Treatment after Wait & Watch

‘It was a fait accompli really’ (P15)

‘I was told that I had to have chemotherapy, 6 chemotherapies…one every 3 weeks and radiotherapy after that’ (P8)

‘I was very worried and scared and thought I might choose not to have the treatment…because I felt physically very well…why subject myself to being ill’ (P1)

‘[consultant said] “I must tell you that even though you don’t want to go on chemo….my recommendation is that you do”’ (P9).

Urgent treatment

There weren’t really any options…it was a case of this is what is best for you… I didn’t have time to think about it… it [the cancer] was so advanced…they decided… I don’t think I was really involved in that…I wanted them to guide me and make the decisions’ (P19)

‘it was a very unusual type of lymphoma…there was a huge team involved in it all and even throughout their decision making they changed from what were originally going to do, which was radiotherapy...they were just going to blitz it, but my kidney would have been in the way, so they then decided to go down the avenue of chemotherapy and the monoclonal…’ (P24)

‘they [doctors] decided on stem cell transplant straightaway’ (P21)

Difficult decisions

‘Honestly, my head is exploding with all this…it’s just like a big crushing thing to me…I think I am quite strong but this is doing me in’ (P35)

‘the big one [decision] was the second stem cell transplant…I was really struggling to make the decision as to whether I wanted to go for it’ (P18)

‘they [doctors] sort of said, well the average remission after the stem cell transplant is, I think either 12-24 months, or 18-24 months, something like that, and there was I thinking, right I’m going for the 10-year option, so that was quite a shock’ (P18)

‘Myeloma is a very individual disease. You get the same treatment, same, same this, same that but you have different outcomes and things.’ (P28)

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