Written by Wendy Ashton – Hospice Social Worker, Eden Valley Hospice & Jigsaw, Cumbria’s Children’s Hospice – Carlisle.
In September 2018 I suddenly found myself on ‘the other side’ of palliative care.
My sister called to let me know that the ‘gallstones’/’kidney stones’ was actually bowel cancer with liver and lung mets. She also appeared to develop Tourette’s syndrome during our conversation. “It’s not curative” she informed me. But with my experience of working in palliative care for over eight years I sort of knew that already.
It was hard trying to listen to her explain the treatment options without saying to her ‘but it’s just a matter of time, sis’. My head went into overdrive. The mets were causing the pain, not the bowel cancer. Was she constipated? Had she thought about quality of life? She was always the ‘pathetic one’ who couldn’t watch Casualty with me or stand to have injections. She could never have worked in the health sector like me. For goodness sake she’d only got her ears pierced the once because it hurt.
My heart was in my boots and tears were flowing down my cheeks, but you can’t see down phones can you? I stayed calm and agreed with her that life is cruel and hers will be probably shorter than mine. But hey – any of us could be run over by a bus or drop down dead at any time. Oddly that scenario didn’t help.
The plan following her oncology appt was to have some chemotherapy at the Hospital that had diagnosed the cancer. She could have gone to a Cancer Care Specialist Centre in the neighbouring city as that was actually her catchment hospital. I talked to her – probably as a professional – about how this is a great unit and they do all sorts of wonderful stuff. As a sister I thought, “you have to go for the best because I don’t want you to die just yet”. However, her trust was in the diagnosing unit so I respected this and shut up.
I tried really hard over the next few months to be her sister and not let my knowledge and experience intervene. It is so, so hard……
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