The Last Journal of a Glioblastoma Patient

Sunday plans sorted!

Join us this weekend at Regatta Point for the Canberra & Region Visitors Centre Market Day ☀️

There will be:
🛒 Market Stalls
🎷 Music
🤸‍♀️ Games
🏆 Prizes
🦎 Canberra Reptile Zoo
🦙 Blackwattle Alpaca Farm - Murrumbateman
🏈 ACT Brumbies
🏉 Canberra Raiders

& loads more!

Stop by our tent and grab a delicious Lindbeck's Butchery snag!

All proceeds from our BBQ help us to support locals with the costs associated with their cancer diagnosis 💜

Visit Canberra ACT Government

When Jenny Hynson from The Royal Children's Hospital, Melbourne was a young doctor, she saw the need for formalised paediatric palliative care. Then she helped to make it a reality.

“The difference I see when families have good care is they don’t have regrets. That can really impact on how they grieve," she says.

More in our People of Palliative Care series ➡️ https://ow.ly/qoqN50RoHyi

Exciting news for Palliative Care!

The palliative care community is really happy that Stephen K Amos has chosen palliative care as his nominated cause on the reality show, "I'm a Celebrity, Get Me Out of Here!"

There are many remarkable palliative care providers serving communities across the world, dedicated to offering medical expertise, compassion, support, and dignity to those living with life-limiting illness. Stephen's support shines a much-needed spotlight on the invaluable benefits that palliative care providers bring to the lives of people who are arguably, at their most vulnerable, every day.

A huge THANK YOU to Stephen for acknowledging the essential role of palliative care in our community. Vote for him on "I'm a Celebrity, Get Me Out of Here!" and let’s keep the conversations about palliative care, happening.

Quick update, not the MRI news I wanted. They couldn’t take all of the last tumour, in the last surgery (Aug 2023), because of its location.

It seems to be growing and it is not in a place they can do another surgery.

So hopefully chemo starts working.

Going to move home to be spoilt by Mum 😉

Glioblastoma Australia

Watching people go for early morning runs, whilst I eat some toast and have a coffee. I would of felt guilty before, for not starting my day like that.

Not now, I just finished 8 hours of work! Got to get it in when I feel in the 'groove'!

I got a reprieve from chemo today as my white blood cell count is too low so unsafe for treatment. I was told to go home, rest up, eat well and do some exercise (walking around the block is enough they said), until the 4th March.

(When your white blood cell count is too low for chemotherapy treatment, this condition is known as neutropenia. Neutropenia is a decrease in neutrophils, a type of white blood cell that plays a crucial role in fighting off infections. When the neutrophil level is too low, it increases the risk of infections, making it unsafe to proceed with treatments like chemotherapy that can further suppress the immune system.)

When paying for items using PayPal, if you see our Charity, please consider donating an additional $1…… It all adds up!

Last MRI was clear and I am so happy.

I am getting a lot of questions about if I am in remission.

Short answer is NO.

There is no remission for this disease, I am currently considered ‘stable’ and still have my six weeks of chemo, with a one week break, for the foreseeable future.

This disease is kind of like the ‘whack a mole’. A tumour arises, they attempt to remove it all, do treatment (standard of care is 6 weeks radiation and chemo combined), then do maintenance chemo, until you can’t take it anymore.

Regular MRIs and when a new tumour comes up, repeat above, until a tumour comes up in an area they are unable to do surgery.

Having a clear MRI means things are working and ensures more time for me to have with family and friends :)

Donating blood is one of the many simple ways you can support almost 1 in 2 people in Australia who will be diagnosed with cancer by the time they turn 85. https://donateblood.page.link/tc24

Shorter treatment wait times possible with installation of new cancer radiotherapy machine | Riotact The ACT is operating with four specialist radiation machines for the first time since 2018. The new linear accelerator (LINAC)…

Lifeblood x Cancer Council Stand up to cancer (while sitting down).

My book available for pre-order now! (Release date 6/11)

Pre-order here: https://www.hospicenursejulie.com/book?fbclid=PAAaZaxW3ACR2-yB171LmElM46t4fQ7-bRhn612HXK9OQELcY2EDTAR3EhKVs_aem_AZjCr7BrfukMvN4VxhAzCX4nELvWkUkJe7TqDAGhBY0Vh0kw1BXsFrJo4ocmvlj4Qx8

Happy birthday to the head of the ‘Support Squid’, Rebecca Rogers x

FYI - I am alive 🙂 just have not been posting much x

🥳

We have officially smashed our initial Giving Day target! 🥳

We have raised over $200,000 just in 24 Hours! 💪

Thank you for your support of the South Pole trek and helping to raise much needed funds to help support the expansion of GBM AGILE.

GBM AGILE is a revolutionary adaptive brain cancer clinical trial platform and together we are supporting the most innovative brain cancer research and facilitating potentially life-saving breakthroughs.

None of our work is possible without our generous community! 💜

You can have a look 🤩 at exactly how our giving day turned out here: https://hopefortheholidays.raisely.com/

Join Me in the Race Against Glioblastoma!

Hi everyone! This year, I'm lacing up my running shoes for a cause very close to my heart – Glioblastoma research.

As some of you may know, Glioblastoma is a relentless brain cancer with limited treatment options. That's why tomorrow (Tuesday 10th Dec), I'll be running/walking/hobbling/rolling the Honolulu Marathon to raise funds for Glioblastoma Australia, a charity dedicated to advancing research and supporting those affected by this disease.

Every stride I take will be in honor of the warriors who have faced this challenge, the survivors who inspire us daily, and in memory of those we've sadly lost.

🌟 Here’s How You Can Help:
- Donate: Every dollar brings us closer to a breakthrough. You can donate through my fundraising page https://www.paypal.com/donate/?

- Spread the Word: Share this post and help raise awareness about Glioblastoma.

Together, we can make a difference in the fight against Glioblastoma. Let’s cross this finish line with hope and determination! 🏁💪

Glioblastoma Australia

www.paypal.com Transfer money online in seconds with PayPal money transfer. All you need is an email address.

Death itself is not painful. Diseases we die from can be- but the actual process of dying is not- we are built to do it biologically.

Death feels scary because of the unknown.

Education, conversation, and understanding will decrease your fear. 💗💗

Eight days is enough training for the Honolulu Marathon, right? 😬😬😬