My Diagnosis Story - Part 1

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People often ask what symptoms did I have and, was I aware that I had cancer before my diagnosis. Well, here is the story of my diagnosis in as much detail as I can accurately remember. It's a long read so grab a coffee and get comfortable. 

Note - although the cumulative symptoms may add up to something, at the time it wasn’t obvious.   

You won't  be surprised to hear that this period was a bit of a blur so details may not be accurate...   And this story of my diagnosis ended up far longer than intended so I’ll break it up. This first part covers up to the hospital admission and part 2 covers my admission to the start of active treatment. Part 3 will discuss some unexpected mental health issues following the initial discharge home, issues that undoubtedly disturbed my life more than the initial cancer diagnosis had. 

Some important context is that in the lead up to my diagnosis I was working from home, like many across Australia, with the explosion of COVID-19 bringing an end to my work trips to Canberra, and not long after sending us home from the Brisbane office as well. This is probably important as it gave me some easy justifications for symptoms I probably should have jumped on sooner – hand writing, memory and concentration, all of which I put down to the changed workstyles of working from home.   

The Month Prior to Diagnosis - April 2020 

I was still in full marathon training a few weeks out from my diagnosis but I had started to notice that I was a bit unsteady on my feet and lacked confidence in my foot placement. I didn’t think too much of it though and pushed on. In the few weeks before my diagnosis my driving was impacted, but I’ve never been a great driver (as some will undoubtedly attest) due to my limited eyesight in the left eye so, again, I passed this off as lack of driving with being stuck at home.   

What I was noticing was more regular simple mistakes -  taking wrong turns on short driving trips and roads that I knew well, opening the wrong roller door on the shed, missing my mouth with food, dropping things. So although I wasn’t too concerned, I had definitely started to realise something wasn’t right. But I never, ever expected cancer. I did not have the stereotypical headaches, except for the final day and everything else seemed minor and unconnected. 

In mid-April I had some numbness in my hand and little finger but after consultation with the GP I was reassured it was a nerve issue and probably related to my sleeping position. Ulnar never entrapment was the diagnosis - easy enough to rectify with some ibuprofen and a modified sleeping style - and it went away, so I din't give it much more thought. 

One Week Prior - Saturday, 23 May 2020-Sunday, 24 May 2020 

A week out from diagnosis and I’m running 70km a week in full training. I start the weekend with a glycogen depletion half marathon (2 hours of running intentionally without fuel) on the Saturday, a 15km cold morning run with Andrew on the Sunday and then joined a small group for a Sunday afternoon 14km trail run where I proceeded to struggle, wandered off into the bush randomly at one point and was just not myself. I was asked if I’d had enough fuel, so I took a gel and sat for some rest.  I recovered enough to make it home, somehow.    My strava description from that day explains it well – “I have zero confidence in my footing on the trails now so am slow slow slow. And my focus this week is being on time after being late for 3/3 group runs this weekend 😬🙄”  

I’ve never been someone consistently late – never early, but always on time. My awareness of time and my short term memory was sloppy and it started to show in my work too, but I’ll get to that shortly.   

Monday 25 May 2020 

Following that weekend of running I had a headache but nothing too serious. I put it down to electrolytes and salts, advice from my good Doctor friend was ibuprofen, electrolytes, rest and rehydration. That worked so similar to the ulnar never issues, I felt comfortable again, but still had a nagging feeling things weren’t quite right.   

Back at work and I was struggling with task focus and forgetting to do things. I’ve never been a  list person and relied on my working memory which was now struggling. I put this down to work from home and different systems to working in the office.   Then one day as I was writing notes I completely, and I mean completely, forgot how to write the letter ‘r’. Just nothing. Blank. I’d been making more errors in writing and was getting frustrated with the iPhone keyboard but nothing too sinister.   Ok, maybe this is just a practice thing and I wrote out the alphabet. No issues. Ok, it’s just a work from home thing I again convinced myself. It’ll pass when we get back to normal, but deep down I was now expecting I had some sort of demyelination condition – the memory, the ulnar nerve entrapment, what I now knew was called dysgraphia (difficulty with writing and letters). Without any obvious trauma events or obvious stroke symptoms my mind anticipated something like MS but for some reason I was completely calm with this self-diagnosis. No problems?  

Friday, 29 May 2020  

I finally accept that I need some tests and head off to the GP during my work lunch break in between COVID-19 conference calls. I’m fully expecting I’ll be off to the neurologist soon but am still calm with this and more concerned with which neurologists do I know. Why I wasn’t overly concerned I’ll never know. The GP doesn’t baulk at my explanations and request for tests – he gets me to do a hand writing test, writes out a referral for a head MRI and a panel of bloods. The next available MRI slot is booked for the following Wednesday and I fast overnight for the morning bloods.    

Saturday, 30 May 2020

The Day the Earth Stopped Spinning Briefly

 8am blood tests 

I head up to the pathology clinic and feel unwell. I’m never queasy about blood tests but today feels awful.  Before leaving home I have some ibuprofen for a small headache but it’s nothing unusual. At the clinic and as the blood is taken  suddenly a cracking headache kicks in. I’m physically ill in the shopping centre bathrooms, but other than a mouthful of water and the ibuprofen there is nothing to bring up.   I make it home but now the headache is insane. I ask Amy to call and get me an urgent MRI as I can’t wait for Wednesday anymore, I need to know what’s going on. Amy gets an 11am MRI slot at Greenslopes and we head into the hospital.    

11am MRI 

I’m into the machine and the scan is underway. Nervous, anxious, concerned? Definitely a bit of all of the above. Midway through the radiographer gets my consent for the contrast and asks if my GP works Saturdays as it "would be good to see them today". Never a good sign as the radiographer is usually tight lipped until the radiologist's report is written.  Amy calls and asks about the GP, my GP will have left but someone will be there to see me. 

1pm - back at the GP Clinic 

We make it back to the GP and as I’m waiting to see her I get a phone call – “Hi Jason, this is the radiologist who did your scan today and I want to confirm you are seeing your GP today”. Another less than good sign.  “And do you have some contact details as I’m having trouble getting in touch” – well, how about I hand my phone to her as she’s right in front of me…  GP and radiologist have phone consultation and it’s obviously not positive news but that has been obvious since 8am this morning in reality.   

A visibly shaken GP composes herself and with as much objectivity delivers some memorable lines – “you’ve probably worked out it’s not good news” and “do you have health and income protection insurance?” The doctor hands over the faxed radiology report and you don’t need a medical degree to interpret the results. 

 Side note - sorry to ruin the movie expectations, but there was no lightbox with multiple images of my brain, no white coated doctor pointing to a clear round mass that is my tumour and no modernist designed doctors room. I'm in a suburban GP clinic, my doctor is in civvies and I'm given a printed copy of a faxed radiology report (I can access the 1000+ images from my MRI on the app, but interpreting them isn't my forte so the words will be it). 

Two lines stand out – “The findings overall are most in keeping with a high grade glioma/glioblastoma” and “urgent neurosurgical referral suggested”. Shit, and double shit. To be fair stronger phrases were uttered but there was no one there taking notes so I'll let you imagine the words uttered. 

The world stops spinning briefly as it hits. Then the head starts working and thinking.   The doctor delivers, as best she can words very close to “go home, get your affairs in order. By that I mean grab your will, power of attorney, insurance details, pack a bag and head into hospital. Which hospital would you like to go to?” 

I don’t expect this sort of news is a routine part of General Practice in Yarrabilba where the average household is more likely to be in their 20s and going through pregnancy, the flu or some sort of infection rather than cancer. It’s blunt, but is there any way to deliver that news that isn’t like a sledgehammer?   

I’ve worked in healthcare and hospital improvement long enough to know I’m not seeing a neurosurgeon in a public hospital on a Saturday or Sunday – so I request Greenslopes as the largest private hospital in Australia seems my best chance to see a specialist anytime soon. I send a photo of my report to my good doctor mate (and at the time my boss), Gog with the message “well, I’m stuffed (maybe stronger language was used)”, call my parents and bluntly dump the news (I deliver this news bluntly many times in the weeks ahead without properly managing the directness to people simply asking how I am) and we head home to tearfully tell the kids that Dad has something in his head that needs an operation.   

We can't for the life of things find our wills. So after tearing the study apart we focus on the practical stuff and pack a bag before driving back to the hospital we'd been at hours earlier for the MRI for my admission. 

For what happens next head to Part 2.