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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Written by Hilary Wilson – Macmillan Family Support Worker and APCSW member,
In June 2002 I was persuaded by some Palliative Care Nurses with whom I worked in my role as the Social Worker for the cancer ward at Ipswich Hospital, to apply for the position of the newly created role of Family Support Worker for their team. I wasn’t looking for a change of job, or even full time work, but the job description appealed. It felt like it had been written for me, making use of all my life and work experiences, and all the parts of those that I loved the most!
I was fortunate, I got the job! And then I had to set up the service. A new job, a mandate to work with the Palliative Care teams in the hospital and the community and to support families in whatever way was needed who were known to those teams.
14 years later I am retiring, but what a time I have had! Working in the NHS and in front line cancer services has been challenging. Setting up a service that didn’t duplicate other services already out there and that looked at the needs of the family as a whole felt like going back into the Social Work that I was trained to do in the 1970’s. Being a one man band also had its challenges, but also its benefits. Finding that actually it was often the children and young people who were the ones who needed support most fitted my love of working with that particular group. Working with many highly skilled practitioners from all sorts of different backgrounds, and then being able to develop good working relationships with schools. Setting up training for staff here at the hospital and also in schools. Being available for patients and families at the point of diagnosis and sometimes supporting them throughout their cancer journey, regardless of outcome. Supporting families in their grief, and helping schools to provide the best support too. Learning just what an impact cancer can have and the difficulties and stress of having to live with it, sometimes for many years, but without cure. The privilege of sharing some of the most difficult times of people’s lives not because I wanted too, but because they wanted or needed something that they felt I could offer.
I discovered the APCSW soon after starting the job and joined up. Whilst not the most regular attender at regional meetings – being a lone worker with no admin back-up had real challenges when it came to being out of the office for the day, to say nothing of annual leave – I loved all that is has provided. There are 2 particular highlights….
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