I found my voice through treatment. I found my voice because it was solicited and respected and valued and deemed important. Because others thought my voice was important I came to believe it to be so.
I'm told I had a rough time through treatment but with nothing to compare it to what would I know. I am here, I am alive and now having a tougher time surviving. I don't really know why, I did not know what to expect, I have nothing to compare it to....................except that I do to a degree as we do get all those stories about the inspiring women who have gone through treatment and are back into their careers as if nothing has happened (I thinking Kylie mostly) Don't get me wrong, i don't begrudge her a moment and she is a great role model for what is possible but I'm left with questions like how come her voice hasn't changed? Mine has been permanently effected by the treatments!
Speaking of voice, my physical voice has changed and my capacity to speak and be heard is changing and it feels like now nearly five years out I have to fight to be heard.
Example, I'm in a new area, with a new pain that will not go away, wakes me up at night, is not controlled by regular pain killers and it has taken over six weeks to get the GP to even refer me to the oncologists with a view to getting a bone scan.
One survivorship website I came across said we have to become our own advocates. I am more and more coming to the conclusion this is right. So I will get informed and I will advocate for myself.
It just seems a shame there is no survivorship plan in place, clinics that would provide the big picture joined up thinking that would see a late effect not a new symptom, a side effect not an age related normality, fatigue not depression. Bring on that day.
