Our Domain Lodge meeting on the 5th of July showed the usual camaraderie and information sharing that people affected by head and neck cancer are good at. We talked about the deep thirst and discomfort experienced by patients having reconstructive surgery. About how important nursing care is. About the sharp throat pain caused by chemoradiation which one patient described as trying to  swallow a “red hot pizza”. About the difficulty one patient had getting across the road from Domain Lodge to Oncology. The treatment had exhausted her so much by the last two weeks. 

We had six patients in attendance, a specialist nurse and an Auckland University exercise scientist, Hana van Waart.  Below is a description of her current research.

“We are currently looking at the period between diagnosis and surgery, dubbed prehabilitation, to improve overall functioning to better withstand upcoming treatments. It is a holistic suite that can encompass for example exercise, nutrition optimization, smoking cessation, and psychological interventions. It is likely that benefits of prehabilitation are optimized by being tailored to the needs of specific communities.

We are therefore undertaking participatory research, which consists of three phases:

1) Focus groups: To gain insight into the needs and wants of patients with cancer in the prehabilitation period between diagnosis and surgery with an a priori focus on Māori patients.

2) Co-design prehabilitation interventions: a collaboration between patients, researchers and healthcare professionals.

3) Pilot test the developed prehabilitation interventions, which will inform any potential randomized controlled trials.

We have invited Hana to our Facebook group and hope she can use some of us as a focus group.

World Head and Neck Cancer Day is on July 27. So far Auckland ORL has organised a stall on Level 5 – we will be there from just after 9 am to just before 1 pm to raise awareness. The Cancer Society will be there too. A new development for us is working with the Sexually Transmitted Infections Educational Foundation (STIEF) and the Head and Neck Cancer Foundation Aotearoa to conduct a campaign to promote the HPV vaccine which helps prevent throat cancer as well as five other cancers.