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.
Read about these people’s experience with palliative care:
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. 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, comfort and friendship. I also got some help with house cleaning, which has taken such a burden off me and my husband.
I’ve used many of the hospital services as well. My oncologist arranged a meeting with the counsellor. 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 palliative care services, I feel like I 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 had been having treatment for lung cancer for around eight months when he got very ill, very quickly.
When the oncologist and nurses started talking about palliative care I was terrified…I wasn’t ready for my husband to die.
It is so important that someone knowledgeable about palliative care explains what it is. Our cancer care team sat with us and talked about how palliative care could make my husband’s life easier and more meaningful.
We received support in many different ways, from palliative chemotherapy in hospital, to help with modifying our home so that my husband could remain as independent as possible.
The palliative care team provided me with education on medicines, nutrition and so on, so that my husband improved and we did the one thing he wanted to do – go on a family holiday with our two boys. If I hadn’t had this support, we wouldn’t have got there.
Often it was the little practical suggestions that were the most helpful – such as getting extra prescriptions and a letter from my doctor to explain why I was travelling with so many strong medicines, or getting a foam wedge to help my husband sleep.
I found it so useful to have someone talk to me about what was going to happen, and to know that help was available when I needed it.
I hadn’t realised that people could go in and out of palliative care as they needed it. We used palliative care services for around six months. Sometimes this was in hospital and sometimes it was at home with support from a community-based palliative care service, but there were times we didn’t need it. It was only in the last days of care that we moved into the end-of-life stage.
Palliative care gave us time for my husband to talk to family and friends. I now think of palliative care as quality of life care for someone with a terminal illness.