A sarcoma diagnosis lands on a whole household, not one person. If you are the partner, parent, child or friend doing the driving, the waiting and the worrying, this page is for you. The rest of this guide is written for the patient; everything in it may also be read by you — and it helps enormously when families understand the plan too.
At appointments
Come. Patients are encouraged to bring a family member or friend to every appointment. There is a great deal of information at each visit, and two sets of ears reliably catch more than one.
Practical things that help:
- Keep a notebook (or a phone note) of questions between visits, and bring it
- Write down what is said — especially names, dates and next steps
- Ask the team to explain anything again. Nobody minds. It is far better than going home unsure
- If English is not your family’s first language, ask for a healthcare interpreter — it is free, and the team can arrange it for any appointment
In hospital
Someone from the medical team sees the patient every day, and the consultant surgeon makes the decisions about care. If the family has concerns, a time can be arranged for the medical team to sit down and answer questions properly — ask the nurse looking after your person, the Nursing Unit Manager, or the clinical nurse consultant (CNC).
The CNC is the coordination point for the whole journey and is used to hearing from families, not just patients. For anything after hours, the RPA Virtual Hospital sarcoma support line (1800 463 918) is available 24/7 — explicitly for carers and family members as well as patients. In an emergency, always call 000.
The practical load
- Travel and accommodation. If you are coming from more than 100 km away, the IPTAAS scheme subsidises travel and accommodation for the patient and, in many cases, an escort. The social work team can help you apply. Nearby accommodation can be arranged — speak to the CNC or call the RPA Accommodation Officer on 0407 672 351.
- Parking concessions are available for carers of patients attending ongoing cancer treatment — see the hospital-stay page for how to have the form validated.
- Money and logistics. The social worker’s role explicitly includes helping families: financial support, transport, caregiver support and community services. You do not need to have everything worked out before asking.
Looking after yourself
Carers get tired, frightened and burnt out — usually while insisting they are fine. Support for you is part of the system, not an indulgence:
- Carer Gateway (Australian Government): carergateway.gov.au — practical services, counselling and respite
- Carers Association: 1800 242 636
- Cancer Council: 13 11 20 — support for families and friends, not only patients
- The hospital’s psychology service may also be able to support loved ones who are carrying their own emotional load through a family member’s treatment — ask the CNC
One sentence worth keeping: you cannot pour from an empty cup. Accept the offers of help, share the driving, and see your own GP if your sleep, mood or health starts to slip. The person you are caring for needs you well more than they need you selfless.