Evelyn Wakefield's Story
I found a lump in May 2014 and they did the standard scans to check the rest of my body and unfortunately within two weeks I was diagnosed with secondary cancer, meaning I was basically terminal. I was given a diagnosis and a timeline of two and a half years, so with two young children at the time, my children were nine and three, it was quite harrowing that I potentially wasn’t going to see them, maybe even see my daughter start school let alone see them finish school, graduate or whatever.
To be honest the day he mentioned palliative care, myself and my husband just started to cry because in our opinion palliative care was, kind of, end of life, and this was February 2016 which was kind of in our minds fitting into the timeline, oh God this two years is really kind of a possibility, maybe I’ve six months left. And within two weeks of my oncologist suggesting palliative care the palliative care nurse contacted me and my first reaction was, no don’t call, I don’t want to see you, because I just felt if I brought her in I was really facing death and I wasn’t quite ready for that. So she came out and we sat down and we talked. Yeah and I was kind of surprised because she had so many suggestions of how to give me back my quality of life and I was just surprised because I really was expecting it to end up that I was going to end up in my bed with the nurse basically with me 24/7 and I very quickly realised that’s not what palliative care was, that she was there to give me the best standard of life that I possibly could have. And we succeeded.
Now it took a lot of trial and error from the point of view, although she knew the drugs and she knew how well they’d work, every patient is different. And that surprised me because I was kind of half expecting her to come in and say, ‘right take this, this and this and then you’re sorted’, as it took a lot of tweaking, it took maybe about three months but all of a sudden one day I woke up and I had the most normal day I’d had maybe in a year and a half, where I could get up, I could look after my kids, I could take them to their activities, I was up all day and it just absolutely blew my mind how successful we were. We have recently now with palliative care introduced the social worker. With the social worker we’re working on memory books. What I’m going to leave behind for my kids, what memories I want to leave them, what I don’t want to leave them and again there’s something just really, really nice about doing that in your own home that it’s not a clinical setting, she comes to me, she comes when the children are away, there’s no time constraints and we can sit down and we can talk and like she’s there to support me through that journey. It’s not just, in, do a quick appointment and out the door kind of thing.
Now I realise, it’s much more, it’s about supporting you through your diagnosis, it’s about pain management, it’s about trying to get you to have the best quality of life you can. I absolutely thought it was end of life, they were going to be there for whatever three, six months and then I was going to be gone and they’d just disappear. But I have absolutely realised it’s more about giving me a quality of life, supporting me and supporting my family, it’s not just about the patient, and it is absolutely changed and it’s for that reason I have spoken to even friends and said, even when I say like ‘oh the palliative care nurse is coming today’ and the girls are like, ‘oh right’ and I said ‘no no no, she’s just coming to check my pain management’. So it’s even changed their opinions of what it is, because the perception is out there that palliative care means end of life, which it doesn’t, it means giving you the best quality of life for as long as we possibly can.