Table 3.

Subthemes and Quotations From Theme 2: Knowing What I Need and Fighting for It

Subtheme	Quotations
Knowing how and when to seek out information	“Knowledge is power, some of it you can handle and some of it you just can’t.” “They’re going to put me on this new inhibitor program and I’m reading more about it; I got all the details on it.” “You just want to be reassured all the time. ‘Nope, nothing in there…. Your numbers are good.’ I just needed that assurance. And now I don’t need that anymore.”
Being proactive to manage the healthcare team	“Any health issues, I get up there right away whether it’s a pain in my back, or you know, something with my eyes or whatever, you just [say] ‘Okay, here’s what we’re going to do, here’s what we’re not going to do,’ and that’s just it. And … I weigh options, of course.” “You don’t have to be the most intelligent person in the room but you have to know what’s best for you, and you have to find medical staff that’s going to understand that and relate to that.”
Taking advantage of support networks	“It’s like you’re part of a club now that you don’t want to be in, but you’re there so you might as well help each other as much as you can.” “Early on, you need people around you saying ‘this is what you should do’.” “Quite honestly, what has helped me more than anything is when I stop focusing on me and I start focusing on somebody else.”