I'm working in partnership with a team rather than being passive patient if you like and feeling, feeling that you can only have things done to you, rather than being part of the decision making process and full, fully informed, which we did very much feel when I went and had the liver section.
So it's all a waiting game, you have to wait again for scan tomorrow and then the results and, you know, it could well be that you get recurrences, that have moved on anyway without knowing, but we've gone, jumped from sort of 3% survival at 5 years up to 40% survival at 5 years, and you know, it's a it's taught me that it's not so much what is said today about your condition, there are things happening all the time, there are developments going on all the time and things change all the time and it's keeping yourself abreast of those developments and making, making choices based on your information.
Information is power and I mean it can be that, you're asking yourself to do those sort of things, find out those sort of things at your most vulnerable and most weakest time in your life and a time that you're sort of absolutely strung out in fear and foreboding but it can help so much I think because you know it does give you a feeling of, of autonomy to some degree and it's making those choices. I know that's not possible for everybody and I think that's what this sort of project is so valuable for, cause it is important to have [laughs]. |
