What Dawn had thought was back pain turned out to be secondary breast cancer. Feeling lost and as though no one knew what they were doing, she had to take her illness into her own hands.
It took months to get a formal diagnosis
It began with back pain. I had a slipped disc on my right side, and thought perhaps I’d lifted something I shouldn’t have. After five visits to the osteopath it still wasn’t getting any better. One day I moved off the settee, got up, and suddenly my back went and I couldn’t move.
I was crawling around on the floor, trying to understand why my back hadn’t been fixed by the osteopath as it had in the past. I knew there was something wrong, something the osteopath couldn’t help with, so I told her I was going to see a private doctor, a back specialist.
The doctor immediately saw that I wasn’t responding as he expected. ‘I’ve noticed that you’ve had breast cancer, primary breast cancer,' he said. 'Just to be on the safe side, I’d like you to go and have a scan.’
So off I went for the scan. That’s when I was told it was secondary breast cancer, which is not curable. I just fell through the floor. I just completely went to bits.
I got home, cried my eyes out and thought ‘Oh my God, is it really incurable? My God, I’m gonna die.’
The waiting around was hell
As soon as I received my diagnosis, I was told to contact the hospital and get my GP involved. That’s when the real waiting began.
The wait was hell. From talking to the hospital to organising a scan, to more scans because they 'couldn’t quite understand the extent of this'.
It was just push, push, push all the time, and I was just about hanging on. I ended up having a scan at 8 o’ clock at night after calling and being put straight through to the radiology department. I needed the scan and I needed the results, I needed to know ‘Have I got it? Is it a problem?’
My secondary care felt so uncertain
When I had primary breast cancer the process I went through seemed so much more connected. It felt as though there was a process in place - everybody knows what they’re doing and what you’re going through. You have your operation, you have radiotherapy; things flow. Yes, you still have to chase for appointments, but it felt as though someone was in control, giving you confidence.
After my secondary diagnosis everything felt so disconnected. I had no real confidence in the doctors because they didn’t have confidence in what they were doing themselves. I started looking at redoing my Will, I started clearing my house out, all because I had the feeling that I was going to die really quickly. There was no one to say 'Look, this is the situation, this is the process.' I realised that I'd have to manage this illness myself.
They’ll give me this drug and hope it works. You never see the same person twice. You’re told one thing and then you get there and it’s different. Recently I arrived at an appointment only to be told, ‘Oh no, we don’t need to do scans. Just go along and see how you feel for six months.’ I was enraged. How will they know if it’s progressing or not? Are the drugs working? Are they not? What’s going on with my body now?
I’m living with an uncertain future
The uncertainty is really painful because you just don’t know. I can’t plan because I don’t know if I’m going to be alive next year. Do I spend all my money now and screw tomorrow? I’ve always had a plan and set myself goals. Now, I look at my wheel of life and think, ‘Well, what do I put on it now?’ And the bucket list I had - I’ve been told I really shouldn’t be doing those things because they’re 'high risk'.
It feels like I have to live in the moment, which is great in some ways. But I also think about everything I need to do so that nobody is left with the mess when I die, as well as all the people I need to visit. I wonder whether I’ll be able to cram it all in. My friends are everything to me, and I want to spend as much time with them as possible.
What is the future? There isn’t one really. I’m not really thinking about the future. I’m thinking about the here and now.
Why the campaign matters
While there’s a lot of focus and support for primary breast cancer treatment, with secondary you end up feeling like you’re on a production line, not treated as an individual. It’s as though you don’t matter, because you’re going to die anyway.
Two out of three hospitals aren’t collecting data on women with secondary breast cancer. This means there isn’t enough understanding around the care that women like me need, leaving us on our own and without answers.
Make your voice heard
We've launched a survey to capture the experience of women with secondary breast cancer. If you've been effected, this is your chance to have your voice heard. Together, we can push for better care for everyone.