The Last Journal of a Glioblastoma Patient

29/04/2024

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

28/04/2024

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

09/04/2024

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.

09/04/2024

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

28/02/2024

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'!

26/02/2024

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.)

25/02/2024

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

23/02/2024

13/02/2024

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 :)