#98 Stopping chemotherapy: Treatment, hope and time with Louisa Nicoll, wife of John

In this episode I talk with Louisa Nicoll, wife of John and palliative care nurse. Louisa generously shares their family experience following John's sudden and life changing diagnosis of cancer. 

We talk about what it felt like for John to receive chemotherapy and the decision to stop palliative chemotherapy. We also explore what the word treatment means and the changing nature of hope.

Key messages from our discussion

• Louisa shares her early career and her interest in Palliative and End of life care

• Louisa shares how her husband John was diagnosed withI osteosarcoma in 2015 and their shock at the sudden diagnosis

• Communication skills and breaking unwanted news is explored

• The impact of receiving chemotherapy for John is shared by Louisa, John found the experience of chemotherapy more traumatic than surgery

• In 2019 lung secondaries were found for which John had a thoracotomy

• John requested an idea of time frame and prognosis, hearing that palliative chemotherapy would potentially  extend his life from 12 months to 18 months

• After initially consenting from palliative chemotherapy John shared he felt he had no choice in receiving treatment and the family discussions that followed focussing on What Matters Most to John

• Together they made a choice to stop chemotherapy knowing the focus would be on quality of life

• We explore the meaning behind the word treatment

• We also discuss the changing experience of hope throughout an illness journey

• There is a real sense of joy and quality of living in the last months and weeks of John’s life

• Louisa shares the he practical elements of Advance Care Planning that were completed by John, including a “things to make you smile” autobiography for his family

• John’s message: you can live when faced with dying

Resource

• Find out more about sarcoma through Sarcoma UK 

• Watch a video on breaking bad news by the Irish Hospice Foundation Delivering Bad News 

• Read What matters most’: why John decided against palliative chemotherapy published by Hospice UK

• Find out about Realistic conversations: shared decision making in practice using the BRAN model

• BRAN are questions to help patients make an informed choice about their test and treatment options.

  • The questions are:

    • What are the Benefits?

    • What are the Risks?

    • What are the Alternatives?

    • What if I do Nothing

• Access information from SARCOMA UK 

• Read about Louisa’s role with Sarcoma UK Louisa brings both professional and personal experience to Sarcoma UK’s Board of Trustees.

• Find out about about grief and bereavement support available from The Good Grief Trust

• Connect with Louisa on Twitter at: @LouisaNicoll

Bio: 

Louisa qualified as a Registered General Nurse at the Wolfson School of Nursing,Westminster in 1991. She has worked in a variety of roles in hospital and community settings, but found her passion working in Palliative Care. In 2016, whilst working as a Ward Manager at a Sue Ryder Hospice in Oxfordshire her husband, John was diagnosed with osteosarcoma. Despite over 4 years of aggressive treatment John died at home in August 2020.

Following John's death Louisa made the decision to have a break from nursing to support their children. Over the past 4 years she has been involved in many organisations and charities to use their family’s experience to highlight the impact of communication on patient, and relative experience. These include Expert by Experience at Buckingham New University supporting the SpecialistPractitioner Qualification in District Nursing, Ambassador Sarcoma UK, member of Lived Experience Group Marie Curie, member of GP surgery Patient Participation Group and a volunteer at The Good Grief Trust.