People who have experienced palliative care have generously shared their stories with us. While every cancer journey is different, these personal insights highlight how palliative care can improve quality of life for people with advanced cancer.
I was first diagnosed with bowel cancer two years ago. I had a year of intensive treatment and thought I was in remission, but then a PET scan revealed advanced cancer.
The oncologist recommended another seven months of chemotherapy treatment. I faced the medicalisation of my life again. The treatment is palliative – it is trying to stop the cancer spreading further.
My main worry was transport: “How will I get to hospital for all these appointments?” My husband is 89 and can drive only in the local area. Our children are all working and I wanted to lessen the impact on them.
The local community care service put me in touch with a volunteer palliative care group. The volunteers are marvellous. They drive me to all my appointments, but also offer mentoring, succour and friendship.
Cancer Council arranged house cleaning and many other services, which have taken such a burden off me and my husband. You try to soldier on, but the chemotherapy drugs have side effects. My hands get so swollen and tender that I can’t even peel vegetables. My elderly husband has become the de facto house frau doing all the domestic chores. He has his own health issues so it’s hard on him.
I’ve used many of the hospital services as well. My oncologist arranged a meeting with the counsellor, who helped enormously when I felt overwhelmed. The social worker gave me practical advice, and the occupational therapist modified our home to suit my illness. My spiritual needs are met by the chaplain, and I know the palliative care coordinator will be there to help me.
With all these different palliative care services, I feel that I’m in control and have a window of time to get my house in order. I want my transition to be easy for my family. I’ve taught my children how to live, and now I’m teaching them how to die. Strangely, it’s an experience I wouldn’t have missed – it’s brought so many beautiful people into my life and renewed my faith that kindness and love are at the core of all humanity.
I’d like people with advanced cancer to know that there are a myriad of services. You only have to ask; you are not alone.
My husband, Brian, was diagnosed with a brain tumour when he was 41. He was operated on five days after the diagnosis, and some weeks later, began a course of radiation and chemotherapy.
When the nurses suggested we call in the palliative care team, my first reaction was, “But we don’t need palliation.” I feared what this meant. But they took the time to explain that it was much more than just nursing a dying person. It was about holistic support and understanding, ensuring that Brian could still ‘live’ as best he could in the time he had left.
Brian was able to enjoy the services offered while he was still well enough to appreciate it. He was able to join us at our daughter’s debutante ball. A nurse helped bathe and dress Brian and escorted him to the reception centre. She returned later to collect him, and stayed with him until I returned home. It will be a memory that will be forever with us. And the photos we have of that night, we treasure enormously.
The nurses gave Brian love and dignity to the end. These ‘angels’ visited, medicated and reassured. Brian also enjoyed the massage therapy offered until his death.
The social worker helped Brian and me talk about difficult and confronting issues, and she helped the children understand what was happening. The respite care was also a welcome relief and helped me remain strong.
Palliative care gave us so much. The team gave Brian the care he needed. They gave the rest of us the strength to see it through. They became a part of our family – they were like angels who would appear, see things right and then leave us to be a family again.
Cancer Council NSW thanks Palliative Care Australia for permission to adapt and reproduce parts of ‘Brian’s Story’ from A Journey Lived – a collection of personal stories from carers (2005).