The first days after a glioblastoma diagnosis can feel like standing in a fog. Julie Crawshay remembers that feeling well. After her husband Nic was diagnosed with GBM, she found herself searching for a clear, calm starting point — and when she could not find one, she eventually created The Neuro Farmacist to offer it to others. If you are at the very beginning of this journey, Julie Crawshay has gathered some grounding first steps.

Give yourself permission to pause

Julie Crawshay TCS Sydney Marathon 2024 finisher certificate
Julie Crawshay TCS Sydney Marathon 2024 finisher certificate

In the immediate aftermath of a diagnosis, it is natural to feel an urgent need to do everything at once. But the first and often most important step is simply to breathe. Most treatment decisions are made over days and weeks in partnership with your medical team, not in a single panicked afternoon of internet searching. Allowing yourself a moment to steady is not wasted time.

Build your medical team and ask questions

Early on, you will likely meet a neuro-oncologist and possibly a neurosurgeon and radiation oncologist. Having a clear team and knowing who to contact provides structure. Prepare questions in advance and bring someone with you to take notes. Our guide to questions to ask your neuro-oncologist can help you walk in feeling prepared rather than overwhelmed.

Organise the information

Diagnoses come with a flood of paperwork, scan results, and appointments. Creating a simple system — a folder, a notebook, or a document — to keep records, medication lists, and questions in one place can reduce stress enormously. Julie Crawshay designed the free GBM Caregiver's Resource Guide specifically to help families organise this information from the start.

Be selective about what you read

The internet contains both invaluable resources and frightening, outdated, or inaccurate material. Julie Crawshay encourages families to lean on trusted, evidence-aware sources and to bring anything alarming to their medical team rather than sitting with it alone. Curated education, like the explainers shared on Substack, can help you learn without spiralling.

Accept support

Caregiving is demanding, and you do not have to carry it alone. Letting friends and family help with meals, transport, or childcare frees your energy for what matters most. Asking the medical team about support services, including social work and symptom-focused palliative care, is a sign of thorough, thoughtful care.

There is no perfect way to navigate a new GBM diagnosis, and Julie Crawshay would never pretend otherwise. But taking these first steps — pausing, building your team, organising information, reading wisely, and accepting support — can help you move from overwhelmed to grounded. That steadier footing is exactly what The Neuro Farmacist was created to offer.

Disclaimer: This article is for general educational purposes only and is not medical advice. Always discuss your specific situation with your qualified medical team.