Filling each section of the hard-core type dosette box (4 sections for each day of the week, with braille, should you need it!!) has become a Sunday evening ritual. Populating each section is not only quite satisfying but also helpful in thinking about the week ahead. What’s on – day by day, section by section.
Brain surgery, chemotherapy and radiotherapy don’t make you a very reliable friend.
You read the messages but you forget to reply. Sometimes you don’t answer your phone. You might be napping or at physio.
There’s a lot of stuff. Stuff to remember, and do. There’s appointments, seizures, exercises, and amongst all of this, there’s life too.
Seasons 1 – 7 of Mad Men to re-watch, getting into The Good Wife (from the beginning of course). Rediscovering painting and the odd lunch with colleagues and family.
There’s building a substantial collection of walking sticks. Simply serving an important purpose isn’t good enough – you want your walking stick game to be strong!
Days when you just can’t get up. Difficult conversations, and tears.
So many people being there if you need.
You are grateful. But some friends have fallen through the cracks. They bump into other friends and ask questions. Surgery was when? I didn’t even know….and what, chemo? When was that?
Even if you follow my blog religiously you might be confused about exactly what happened, when.
I haven’t been posting chronologically – that would make far too much sense, and having started this in January (three months after my diagnosis) there really wasn’t any going back then.
So, on a Sunday evening – let’s start at the beginning and map it all out. Section by section.
(if you already know all the details you may want to skim)
Pre-diagnosis (Aug – Sept 2016)
21/08/2016 – first tonic-clonic seizure
Sept 2016 – see a neurologist, have first MRI scan
Diagnosis and planning for brain surgery (Oct – Dec 2016)
07/10/2016 – diagnosed with ‘presumed low-grade glioma’. Start taking anti-seizure drugs for symptomatic epilepsy
Oct 2016 – further MRI scans (perfusion, spectroscopy)
08/11/2016 – agree to undergo awake craniotomy with functional mapping for resection
08/12/2016 – finish work prior to surgery. Expect to be off for approx. 8 weeks
09/12/2016 – functional MRI scan (fMRI)
16/12/2016 – awake craniotomy (surgery eventually abandoned due to positive mapping throughout. A small biopsy obtained.
Recovery – 3 weeks in hospital due to severe left side weakness
05/01/2017 – biopsy results & next steps: Grade II Diffuse Astrocytoma, IDH1 Negative, no evidence of 1P/19q codeletion (now considered inoperable)
06/01/2017 – discharged from hospital
Jan 2017 – fertility preservation (post to come soon about this)
Treatment phase one (Feb – March 2017)
06/02/2017 – concurrent chemoradiotherapy (42 days oral chemo/33 sessions of radiotherapy)
Treatment phase two (April – Sept 2017)
20/04/2017 – start cycle 1/6 of oral chemotherapy
16/05/2017 – MRI scan
17/05/2017 – scan results
18/05/2017 – start cycle 2/6 of oral chemotherapy