A Birmingham mum who has been battling lung disease for ten years has spoken out about the hospice staff who gave her a new lease of life. Tracey O’Rourke was diagnosed with chronic obstructive pulmonary disease (COPD) aged 39. She developed anxiety issues which made breathing even more difficult and came to rely more and more on her non-invasive ventilation (NIV) mask.
“I’d start coughing and all I could do was reach for my mask. And then it got to the point where I couldn’t take it off at all,” said Tracey, now aged 48. In November 2014 she was moved to John Taylor Hospice, arriving by ambulance. She’d been told she had just days to live.
“I didn’t think it was possible to feel that scared and helpless. It was like someone had turned out the lights,” she said. “The last thought I had as they wheeled me in was that fresh air is wonderful. Would I ever breathe it again? And then all I could think about was my children – who would look after them? They wouldn’t have anyone.”
Tracey’s children Callum, 22, and Rachel, 21, visited her at the hospice. It was a difficult time for the O’Rourke family. “I’ll never forget the pain in their eyes,” said Tracey. “I was desperate to live, at the point of begging. More than anything, I wanted to stay alive until Rachel turned 21 – her birthday was just before Christmas on December 22.”
Tracey, who lives in Erdington, was cared for by staff at the hospice’s In-Patient Unit. “They promised that they’d make me comfortable, and they did. I was treated like one of their own,” she said.
In case she needed help, Tracey had a button that she could press to alert hospice staff. “I was never scared to press it,” she said. “Even in the middle of the night, I knew they’d come. If they were ever the slightest bit tired, it never showed. They’d sit with me, they’d cry with me. Compared to being in hospital, it’s a different world.”
Tracey was visited by a hospice counsellor and together they talked about death. But seven months on, Tracey is living at home and gaining strength. “Every time I went to sleep, I thought that would be it. But the thing is, I kept waking up. They didn’t give up on me and every day I felt better,” said Tracey.
Tracey was discharged from the hospice on December 22 2014 – her daughter’s birthday. In disbelief, Tracey prepared to return home in time for Christmas. “It was surreal – I thought I was dreaming at first when they told me I was recovering,” she said. “It felt wonderful but also I was scared. All I’d hoped for had come true but I’d lost a lot of confidence. I knew I’d never be the same.”
This week Tracey has been staying at John Taylor Hospice, receiving respite care. “It’s wonderful being back,” she said. “Nothing is too much trouble for them – the care is just fantastic here. “If something is important to me, I just need to say it once and they remember. No matter how small it may seem, they make it happen as if it’s the only thing that matters. They make my day, every day.”
Being back at John Taylor Hospice has given Tracey confidence again. “I’d slipped back into the habit of wearing my mask every day but after a few days here I was wearing it less and less, and today I haven’t put it on at all,” she said.
Tracey has just finished her respite stay and is heading back home, where she will continue to receive care from the hospice staff as and when she needs it. “I still feel anxious and it is a struggle being at home on my own but I know that I can call on the hospice staff when I need them,” she said.
“I’ll be sad to leave. I’d book a permanent room here if I could. This is where I want to be in my final days. It’s like home but better. It feels right.” Now that she is getting back on her feet, Tracey is starting to feel like herself again and is thinking about how she is going to spend the rest of her summer. “It feels strange thinking about the future. I’d love to come back to John Taylor Hospice for another respite break soon. It’s like being on a little holiday.”
Tracey still wears her NIV mask at night and her mobility is limited but she enjoys spending time with friends more than ever. “I just feel this overwhelming sense of gratitude to the hospice for not giving up on me,” she said.
