My Diagnosis - Part 2

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4pm Saturday 30 May 2020 

Greenslopes Emergency and Admission

Painfully, even with an MRI showing a major tumour, a 9mm shift in my brain due to the swelling and a referral letter I’m headed to the Emergency Centre to pay some $$ to be assessed and admitted. 

Thankfully it’s not a long process and shortly after I’m in a bed on a ward. COVID rules are activated in hospitals at this point of the oubtreak so unfortunately the kids can’t visit the hospital, I'm limited in both visitors per day and hours per day, and it’s only a few days out from Bronte’s birthday and a few weeks until Elka’s. Damn that’s bad timing but I’m not waiting to have this thing investigated and, hopefully, removed.   

I’m told I may see the neurosurgeon tonight or it may be tomorrow. At this point I haven’t made any enquiries with my network and am trusting that if the College of Surgeons has qualified my surgeon and he’s credentialed at Greenslopes then that’s enough.    I try to sleep and after a pretty tiring day it actually isn’t that hard.   

Sunday, 31 May 2020 

As the morning develops I’m waiting to see the neurosurgeon and get an update on what he wants to do. Suddenly someone reminiscent of Dr Doogie Howser is in my room – definitely in his 30s  (when I search the medical registration system I discover he completed his MBBS in 2006 and FRACS in 2017 so I’m thinking he’s actually about my age) and he's wearing ripped jeans, an Endless Summer T-shirt and peroxide blonde hair - almost as if straight from a Saturday night in the Valley to Sunday morning rounds at the hospital.   He is definitely not the balding, middle-aged neurosurgeon in a suit I was expecting but after considering all of the younger exceptional surgeons I've worked with recently and realising youth has advantages for anything technical (hand tremors and brain surgery don't mix) I'm more relaxed. 

He explains he wants to do surgery on Tuesday and will aim to remove as much as possible. With the massive swelling and impacts on my brain I’m placed onto a high dose of dexamethasone to reduce the pressure and undo some of the current impacts.   

The scans indicate a smaller tumour that is likely to be more aggressive, and a larger more diffuse tumour. The plan is to take as much of the smaller one as possible and see how the other looks but it'll probably be chemo and radiation for the bigger one. 

Monday, 1 June 2020 

I’m prepared for the surgery with another MRI to assist with the placement of the guides for the stereotactic brain surgery the following day.  I end up looking like Norman Gunston with stereotactic dots all over my head and I’m appreciative that despite the COVID restrictions that the hospital bosses allow the kids a chance to visit that night before my surgery on the Tuesday,  it's also the night before Bronte’s 10th Birthday.   

Tuesday, 2 June 2020 

Fasted for surgery and as I wait for the transfer to the theatre I find some time and muster the courage to record some video messages for the girls on Gog’s advice that I need to think about some legacy videos and messages sooner than later in the chance cognition goes sooner than later.  

Until you’ve faced this sort of moment you can’t comprehend the gravity or appreciate the emotions. I always thought that I could empathise with friends or family going through this sort of thing, but nothing prepared me for sitting on that hospital bed and recording videos for daughters aged 10 and 11, contemplating the life moments I may miss if surgery went badly or if this damn cancer played out in the most likely way (if you’re not aware, the prognosis for a Glioblastoma is not promising at all).    

It’s at this point I make the first declaration to myself that this illness will not be the end of me and I won’t miss seeing my kids grow up. Maybe not doing the legacy videos will bite me, but I don’t want to accept that outcome and don’t continue with it.   

As I continue to prepare for surgery I find myself frantically trying to tidy up my financial affairs. I know Amy won’t know where to start with the share portfolio so I’m selling it down and closing the trading account. Fortunately, with COVID it’s not a terrible time to be selling and this urgent fire sale doesn’t end up too bad. I laugh at my predicament as I frantically compose emails to Amy to outline the financial arrangements, and sell the remaining shares as the orderly wheels my bed to the theatre complex.   I wonder how many brain surgery patients are trading shares as they are wheeled into theatre?

I hand over the phone, meet the anaesthetist and laugh that I’m sure to have sent him a few emails in the past (he has the same name as my old boss so his Queensland Health email is very similar and often incorrectly used).  

Before I know it I’m waking up in recovery and finding the recovery nurse’s jokes far too funny. I’m on 15 minute observations and answering the Glasgow Coma Score (GCS) questions continuously for the next few days.  My only trouble is the “current Prime Minister” and “Prime Minister before that” questions… Given I was in surgery for a while who knows in Australian politics!   But within the next 48 hours I can answer the questions before they are asked and focus on getting a perfect 15/15 for the GCS assessment, which really only says you're conscious and responsive so is no marker of success!!

Wednesday 3 June 2020 

Upon fully waking from the surgery and getting a bearing on what has happened I’m informed that surgical removal wasn’t feasible without causing too many issues to my personality, cognition and eyesight. The best that could be done was a spiral biopsy and now we wait for the pathology results. From the images and the visual inspection of the tumour the best guess is a Glioblastoma (GBM) and after asking for a prognosis I’m told if the treatment goes well I can expect 5-6 months. Holy shitballs, that’s not good. Some friends let me know of good evidence to show a Keto diet has a big impact on GBM survival and I switch to keto once I check the research myself.   

Thursday 4th June 2020 

Head bundle is removed and I can’t believe I’m allowed to walk around the hospital including to the café.   I get a look at the head staples - wow, not bad. 

Saturday 6 June 2020 

I’m starting to plan my trip to the 2021 Berlin Marathon and decide it’s time to get moving. So, on day 4 post brain surgery I decide to do some laps of the hospital grounds. I manage 2km of walking in around 58 minutes around the roads surrounding the hospital but don't leave the campus.    

Sunday 7 June 2020 

In a deluded attempt to, as Garmin says ,#beatyesterday I head out for a walk and decide the small hospital grounds won’t allow me to get past the 2km mark from Saturday. After a wrong turn somewhere early on I’m completely confused and end up at the ‘Stones Corner’ sign and realise I’m in a spot of bother. After 4km and 1h40 of walking I’m struggling to read google maps and orient myself and my slow walking across roads is surely a danger, but at least so far I’m in one piece. I call Amy to explain my predicament and somehow manage to organise an Uber back to the hospital to be met by security and the nurses. It turns out to be my last trip for a while as I’m banned from leaving the ward unattended, get a wanderer ankle bracelet alarm and can no longer even go to the foyer coffee shop. Damn, that was stupid.   

10 June 2020 

I’m explaining to my parents the 5-6 month prognosis when my oncologist enters the room and explains that the cancer genomics have been returned and instead of a GBM my cancer is a 1p/19q co-deleted anaplastic oligodendroglioma and it should respond well to the combined chemotherapy and radiation therapy regimen. My prognosis is upgraded from 5-6 months to 6-10 years.   Now, if I’d been told 6-10 years initially I probably would have been disappointed, but I can say that after sitting with an expectancy of, all going well, 5-6 months for a week, the news of 6-10 years is like a second chance at life. There’s still the ensuing 6 weeks of radiation and chemotherapy but that doesn’t seem so bad anymore.   Treatment commences and I'm focused on beating this thing. 

I spend a week as an inpatient getting radiation therapy and starting my chemotherapy regime. Unfortunately, I push for discharge after that first week of treatment due to the pain of the twice daily heparin injections (I end up with large haematomas in both quads), frustrutations waiting for chemotherapy drugs to be provided on time (I'm manicly focused on the accurate timing) and the inconvience of the hospital food.  

This discharge doesn't go well after all (including leaving hospital without key drugs) and the mania of the high dose setorids really takes a toll with major sleep deprivation and confusion as to my complicated drug regimen.  Only a week later my cancer treatment is taking a back seat to pscyhosis, deliriunm and a forced mental health admission back into hospital.  But that's another story for another day.