Fifteen years ago, I was a mum of four who was dying of a brain tumour. I was preparing for a future I did not expect to see. And now, somehow, I am in the middle of my PhD. open.substack.com/pub/julesrob... @drstevenhobbs.bsky.social @lissbee.bsky.social @liangrhea.bsky.social

When Stoicism becomes a liability in the emergency room open.substack.com/pub/julesrob...

We’re looking for a PhD student to join the social-ABI-lity research project in the @abicommlab.bsky.social! 👉 Focus areas: 🧠 Brain injury 📱 Social Media 🤝 Co-design 💡 Interested? Get in touch with me to find out more!

Neurosurgery has rejected my referral. This image was made in 2022. Following my recent trip to the USA, I am now living in a space where I feel like I will vomit from the pain. I have not managed to sleep a whole night in a long time My GP is livid and resubmitted the referral + paperwork

When I was preparing to fly to the USA, I had two friends in hospice. Today I received the news that one passed on December 20. The other I was with when he passed on December 27. While I mourn these losses, I appreciate that both had dignity and received pain management in their final days.

A week ago, my best friend of almost 20 years died. Yesterday I had my first tattoo to keep him with me for the rest of my life. @eveonline.com @drstevenhobbs.bsky.social @liangrhea.bsky.social

I have super heavy swollen legs after the flights home 😞

a molecule is a group of non-monogamous moles

Who will stop the Piano Man's reign of terror?!

The first leg of the trip home is almost completed. Soon we skip forward past Dec 31st to land in 2026

Thank you I love you Fly safe The cyno is lit

What was meant to be a routine appointment turned into an ambulance ride and CT scans. I wrote about what helped me stay calm when everything felt uncertain. For me, it was remembering past recovery. Read here: open.substack.com/pub/julesrob...

Screaming into the void

🚨New paper🚨 We identified how #carers & #HCP define & describe #BTSM #BrainTumour related personality & behaviour changes. They are nuanced & complex. Grief, isolation & safety concerns are experienced by carers. #Aggression is a major concern. There is work to do link.springer.com/10.1007/s005...

Read @POCOG1's post sharing a new study exploring #BrainTumour related personality and behaviour change in adults with #BTSM - it is not much talked about and carers and families are dealing with it as best they can. #SuppOnc #PsyOnc www.linkedin.com/posts/psycho...

🧠💪 Hard to Kill Club 💪🧠 Living more than 5 years with a brain tumour isn’t just survival. It’s defiance. These shirts represent each of us who’ve made it past that brutal milestone. They’re not merch. They’re a symbol. A statement. A story.

Time for publication cake Understanding Health Information Needs: An Evaluation of Co-Design Video-Assisted Education Journal of Cancer Education doi.org/10.1007/s131...

Are you in Australia, aged 20-70, with an increased risk of #BreastCancer via family history, prev ADH or LCIS on biopsy, or other reasons? Hurry to your GP for referral to this FREE, TELEHEALTH service recently started by Prof Kelly Anne Phillips to discuss medical prevention. #ASBD2025

The Disability Advocacy and Empowerment Society have decided to make a difference and fundraise for the Bake Sale for Brain Cancer to raise much-needed funds for Peace of Mind Foundation, an amazing cause that's close to my heart. bakeoffforbraincancer.gofundraise.com.au/page/Disabil...

Yall.

Until then, enjoy these from the same place

Next month will be 36 years since my sweet friend Annette was murdered. 36 years of not knowing what really happened, 36 years where nobody has been brought to justice.

Huntingtons disease is a devastating disease and this is absolutely extraordinary news!

Currently in the hospital. Making friends out of random objects. Hope to have some answers starting Monday about what is going on and where to from here. I made another new friend, The lovely gentleman next to me came and had a chat ♥️

🩺 Today was one of those days that reminds you just how strong you really are. I made it through surgery—unexpectedly awake for the whole thing. Not exactly what I had planned, but sometimes life throws curveballs that test your grit in real time. 1/2

Today was an eleven needle day. 17 if you count blood sugar levels and insulin injections. I have three bruises coming up on my face from three of the six that were stuck in there today. The other five went in my leg. Tomorrow will be another high needle count day.

9 years of Bus chats have come to an end. By the time I return to campus in September, the inter-campus bus, and my friend Danny, will be gone. I've had such a weird feeling today knowing that even though I will be gone for a couple of weeks, everything will have changed when I get back.

Preparation for Wednesdays surgery. Spot the burr hole from 2011

Yesterdey EDI meeting TEE Mentoring Panel with Year 9+ students—sharing lived experience, pro tips, and a whole lot of heart 💙 Then off to the EDGE Conference to join Sara Ardern, Enoli Tsitsi & Joo Kim for a powerful session on student partnerships. #GriffithUniversity

Confirmation of my PhD candidature passed! #PhDLife #PhDsky

Oh hi! It's me! The inaugural Co- Chair of the HDR Candidate Representative Consultative Committee (HDRCRCC) at Griffith University.

I've been sick since Monday. I am delighted to have failed these tests!

Idea from my currently flu addled brain - AirAbuela - people from the 'no kings' protests house swap with vulnerable members of their community to make it hard for them to be found and deported. I have visions of Americans with very euro/amercan names being found in raids around Abuelas table

I love where I "work"

#GoGrayInMay #BrainTumourAwareness

@neurosurgerynm.bsky.social @ailujnostrebor.bsky.social @samemerson.bsky.social @scurrier.bsky.social @clairesnyman.bsky.social @2ndchance2live.bsky.social @lisainnjusa.bsky.social @jbudhu.bsky.social @richardscolyer.bsky.social @gelarehzadeh.bsky.social @suvalab.bsky.social @gliomadoc.bsky.social

It was an incredible session this afternoon at the Trans Tasman Radiation Oncology Group Annual Scientific Meeting (TROG ASM) on 'Optimising Partnerships between Consumers and Researchers' It was fantastic to hear from our cousins across the Tasman Sea. 1/2

There is still more rain coming. The rain gauge is overflowing, the back yard had a water feature and the front door is still dry thanks to sandbagging prep. The birds were singing under the verandah today enjoying a dry spot. This evening the frogs are out croaking their joy and satisfaction.

Baxter the Badger is now on flood watch

While I am not panicking, I am feeling unsettled. I have noticed that the pressure changes with the approaching #TCAlfred , are messing with my brain. I am having some weird neurological stuff going on. Stay safe everyone. Be good to each other.

Baxter is keeping us up to date with the current cyclone information. This is my first cyclone and I am feeling unsettled but not panicked. I'm sure we will get through this. I hope everyone else in the path of Alfred stays safe through this experience. 1/2

Can't really tell there is a cyclone over there.... But it feels bloody ominous

Only 2 ninja stars to go 🤞🏻

The weather is getting wild over the next few days. Can't say I've seen a cyclone symbol on my local area forecast before. #TropicalCycloneAlfred

Baxter the Badger took over driving the Griffith University intercampus bus yesterday

An example of when benign is not fine. This is the type of brain tumour I had removed in 2011. I would have been dead before 2012 without surgery. As it is, I have atrophy and brain shift from the pressure caused by intermittent hydrocephalus. #NeuroSky youtu.be/ORlNYlQBA3M?...