Motivations – Linda


For personal and practical reasons, Linda has decided that she may not continue as a patient partner


I don’t know. I mean, I’ve pulled back from almost everything else now except for the last big project I’m on, and I have actually said to people, this is my swansong for patient engagement. And one of the reasons I feel that, is both – is – one of the reasons is personal, the other one is more constructive. I think as I interact with people – other patients on these projects, I see, because I’m so far away from treatment, I can’t comment relevantly on a lot of the stuff that needs contributions from patients on. And one thing would be, for example, the treatment process of one-day, two-day chemo. Like you get your – you have your bloods, and your oncology appointment one day, and then you get your chemo the next day. I had everything on one day.

And so I can’t comment on pros or cons of that, because I can’t comment on the pros of the new system, or cons of the new system, but also just I feel like I’m getting too far away from being able to think about it in a sharp way. And so I think it is good to have people who are closer to the process. Then the other reason would be a personal one, in that… I feel like I’m shifting to a different stage of my life, and I almost feel like I’m hanging on in a way that’s not – I can’t articulate it very clearly – I just feel that… I’m shifting away from it, and it just – I don’t know, it’s kind of like when you’ve – you go back to where you used to work five/ten years after you used – you left the job, and say hi to everybody, and they’re kind of like, why are you here, and it’s like, why am I here?

And so I guess, yeah, I can’t articulate it better than that. It’s just, I feel after nine/ten years – and I think also because I’ll be coming up to ten years, I am done with all of my oncology appointments, and I feel it kind of marks a – marks something. And I may – and also, I’m not sure if this is a security blanket for me, if it’s a good or bad thing to stay part of CancerWorld, in a way. I need to think about it a bit more. What do I see for myself in terms of involvement? I’m not sure. I think it would depend on the project, the people asking me. I think it would depend.

I don’t think I’ll get involved in any more kind of smaller things, simply because I actually do think it’s better for people who are closer to the process to give that kind of input on the sort of focus groups I was involved in. But as for other things, that I’m not sure, and I would imagine for other patients, again, it would be based on their own personal experience with the projects, what it gives back to them, what they feel they’re contributing, what their life is presenting to them. Are they, you know, do they have small kids, and working full-time? Do they have time to do it? So I guess that will be very – more of an individual thing, hard to predict.

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