I had decreed this decade (my forties) were to be my healthiest. I must have forgotten to pass that message on to someone.
10 April 2014 – Notes from my handwritten journal
Waiting in the Neurosurgical outpatient clinic, I see Marguerite Harding, my Neurosurgeon approach. She calls someone else’s name and I am relieved. This appointment is the reason I am in Adelaide, to review the state of my brain structures, review the aneurysms that lurk there like unwelcome intruders.
Doctor Harding is not always immediately recognisable to me – I only see her once a year. In the end, I recognise her by the way she carries herself. Petite and immaculately dressed, wearing a suit, she has an air of professional detachment yet I have found her to also be kind and approachable, direct to the point of scary at times. She told me at my very first appointment, “If the aneurysm were to bleed, the result for you would be catastrophic”. Doctors tend not to exaggerate so the use of the word catastrophic got my attention.
I feel safe in her care because she has kept me close, having annual reviews, insisting my CAT Scan Angiogram is done at the Royal Adelaide Hospital (after Alice Springs Hospital stuffed it up) and Doctor Harding always consults with her colleagues when she needs to. She has contacted me on a weekend to discuss issues further, has made me understand my condition despite me desperately wanting to bury my head in the sand and ignore it. She has made sure I know what symptoms to look out for in case of complications and is honest with me when something concerns her. Practical, skilled, protective, up front and confident – this is what I need from a specialist and in Marguerite Harding, I have it.
Soon enough Dr Harding reappears and calls my name. I gather up my bags, hastily shoving my Oliver Sacks book away (what can I say, I appreciate irony).
Oliver Sacks is an acclaimed and well-published Neurologist http://www.oliversacks.com/books/leg-to-stand-on/
I follow her to her consulting room. She asks how I am, I respond with “Fine, thanks”. As we sit, she again asks how I have been and I respond “Really well’. She then tips her hand by reminding me that at previous appointments I said I wasn’t keen on having any type of brain surgery and I realise, with dark foreboding, that all is not well. I reply in the affirmative and offered feebly that brain surgery is not at the top of my ‘Things I Want to Do List’. With a tight smile she turns the computer monitor around so I can see the images of my brain from the scan I had two days ago and an earlier one for comparison. She proceeds to tell me that one of the aneurysms appears to have grown larger. I feel the news like a physical blow to the stomach but from many years of practice, I take a deep breath and tell myself to focus (it’s ok, you can scream, rant and cry later, just do what you need to now, to get the most from this consult).
As Doctor Harding sets about measuring and documenting the size difference, I begin trying to frame sensible questions in my head. Which aneurysm is it? How big is it now? Is it at a size where we need to intervene? The measuring is done and it’s gone from 1.5mm to 2.7mm. While still really small that seems a big increase to me. Before we get into the nitty-gritty of what’s next, Doctor Harding suggests getting the Radiologist in to have a look and disappears out the door. Sensing she has just dropped a bombshell on me and run away, she reappears fleetingly to tell me she’ll be right back.
I find myself oddly calm. I look around the room. I shift my weight on the chair and it creaks noisily. It does this with even the slightest movement and I suddenly become completely intolerant of this distraction – I need to be focused here, I have to be able to take in everything I’m told in this room so I can relay it to Jason and make decisions based on what I am told. Just as I hear the doctor explaining my case to a colleague in the hall, I jump up and swap my chair with another beside me. I hastily transfer my bags from one to the other and resume my seat just as she returns. Perfect I think to myself in a sad, self-satisfied way.
The Radiologist comes in with Doctor Harding and after a quick introduction they review the scan of my aneurysm and agree that a cerebral angiogram is the next step; it is considered the ‘gold standard’ for investigating aneurysms. She leaves and Marguerite and I discuss what’s involved with the angiogram. I have to say that from the get-go, I don’t like the sound of the damn thing. This is my description of it – they jag a bloody needle into the carotid artery in your groin, feed a catheter up this artery all the way to your brain and inject contrast (die) whilst taking x-ray pictures of your head. Awesome, sign me up – I never said.
If you want a medically approved description Google it or go here: http://www.webmd.com/stroke/angiogram-of-the-head-and-neck
OK, perhaps I’m being a sook but I don’t like the idea of anyone going into my brain, full stop. The problem though, I have to trust my specialist. She’s the one with all the expertise, I’m just the one who has to go through it.
I ask how soon this is likely to occur and she says perhaps in a month. She writes up an order for the test and I say goodbye. I return to the waiting room and approach Sarah the Neurosurgical Outpatients Administration Officer. I hand over the paper from Doctor Harding and she looks at me it seems in a slightly different manner and she is kind with her words telling me to take care before I leave. It could be my imagination but I guess she understands when a patient’s condition changes, depending on what they hand her after meeting with the doctor.
I stay on in Adelaide a few more days for other appointments related to my stroke recovery and whilst I feel anxious and sad about the growing aneurysm, I am lucky now to have a couple of friends in town who help me process things by talking about it and distracting me with visits to the gallery and zoo. This makes being down in Adelaide on my own bearable.