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25 with a grade 4 brain cancer diagnosis

  • Diagnosis and treatment plan.

      26 July 2022
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    Made the trip to Dunedin hospital yesterday and met my oncologist for the first time.

    Finally got my diagnosis and treatment plan so feeling some relief to have some answers!!

    The name of my tumour type is Glioblastoma which is basically an extremely aggressive brain cancer that is classed as a ‘grade 4’. This pretty much means it grows very quickly and there is no way to completely clear it from the brain.

    My treatment will begin on the 15th of August at Dunedin hospital.

    I had my crazy face mask made yesterday, it’s basically a plastic mesh mask that fits to every contour of my face and during treatments is bolted down to the bed and radiation machine so doctors can be super precise and I cant move and screw it all up!

    Treatment will begin with 6 weeks of radiation and chemotherapy.

    Radiation will be 5 days a week, 30 treatments in total, roughly 1 hour a day at Dunedin hospital.

    I will also be taking oral chemotherapy at a low dose this whole time (Temozomide)

    This treatment is likely to have some pretty intense side effects but we have to remember that the benefits out-way the negatives as with this type of cancer the tumour would eventually have the same (and worse) effects as it grows and destroys brain tissue.

    After this 6 weeks I will have a 4 week break giving my brain and body a chance to heal and recover before further treatment starts.

    Then we continue the chemotherapy process. It will be the same drug but at a dose roughly 2.5x higher.

    This treatment could last up to 12 months.

    I will have my next MRI in January, at this point we will see what effects the treatments have had and my doctors will factor in my physical health and decide if I continue the next 6 months of chemo or if further surgeries will be required.

    So basically for the next 3 weeks until treatment starts you’ll catch me out having fun and loving life! Obviously still recovering from surgery so still taking it easy but definitely making the most of life!!

    Thanks to everyone for all the love and support, it definitely doesn’t go unnoticed and it really appreciated by myself and my whole support team!!

    You’ll find my Facebook and Instagram links here somewhere on this page, I’m posting semi regular videos and updates there. I’m also happy to answer any questions but just remember I’m still limiting screen time so you might not get a quick answer!

    Photo attached is the current state of my scar, it’s healing so so well 😊

    Thanks again, I’m endlessly grateful ❤️❤️

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  • Latest Details

      14 July 2022

    At this point we are still waiting on exact details from the oncology department about treatment and when that will go ahead. I was told on 05/11/22 that I would be contacted within 10 days so hopefully will have an update with certain details very soon!!

    At this point I am still heavily reliant on pain relief due to the craniotomy that was performed and the extra muscles that needed cut in my head/jaw. Basically I have a pretty constant decent head ache as well as severe jaw pain and very intense muscle spasms.

    Still have very limited energy and concentration.

    I nap 2-3 times a day plus needing to very closely monitor how much screen time and mental stimulation I have going on.

    There is significant swelling in my brain causing pressure through my head effecting my ears, my ears feel very blocked and I’m very sensitive to sound!! Light can also be over stimulating and thinking/talking/ processing is definitely taking a lot more energy!!

    Basically I get very tired very quickly and when I get tired the pain increases so it’s a balancing game as I also try to rehabilitate my jaw/head muscles, function as a human and deal with pain levels.

    Taking it all day by day, finding the positives and focusing on the future.

    Will update with further information as it comes :)

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