Monthly Archives: January 2015

Know your enemy…

As I sat having ‘date night’ as a patient on a 6-bed Ward last night, after an epidural ‘blood patch’ for complications arising from last week’s lumbar puncture, a random visitor decided to enter our (full) ward and engage a woman in conversation.

He was visiting a family member in the next room, but clearly decided he was some kind of self appointed ‘life coach’ and wanted to ‘cheer up’ random strangers in other parts of the Ward. He targeted a 91yo woman, who after patronisingly calling her a ‘young lady’ and commenting on her ‘pretty face’ asked her personal medical questions. After finding out she was to have a hip replacement the next day, then regaled her with stories about how he broke his leg once and that it all turned out fine. He then started wheeling out some fatuous positive affirmations, one gem of which was: ‘I’ve got a three letter word for you, N.O.W’ and the words ‘brave’ and ‘fight’ may have been used.

The nurse assigned to our ward was at my bed, doing my obs, when this man was subjecting the woman to his unsolicited bonhommie. We simultaneously *eye rolled* at his braying and I whispered to her, ‘Does he know her? What about respecting other people’s privacy?’ At that point, he introduced himself to the lone woman & the nurse immediately seized on his name and use it to politely (but firmly) dismiss him from the ward with a sentence. I was in awe of her efforts!

But it did cement something I had been pondering about my recent experiences going ‘public’ with my health issues. Previously (when healthy) and having been a cancer researcher, I was often discomforted by the ‘you have to fight this evil disease’ meme that often surrounds this condition. In fact, I disliked it so much, that given the first opportunity to return to the clear cut world of infectious diseases, I took it!

The ‘Us’ versus ‘Them’ narrative of infectious diseases is one that readily lends it’s self to the ‘battle’ and ‘fighting’ memes. A foreign agent has invaded the body and must be eradicated (with minimal damage to the host and the other ‘good’ guys). It’s an easy narrative to exploit for science communication especially with younger audiences.

However, the use of the ‘brave fighter’ in a ‘battle/war’ meme is used with cancer, autoimmune attack and [insert any non communicable disease with significant morbidity and/or mortality here] is not entirely appropriate. I concede that it may be just me that feels this way, and is probably born of a superior knowledge of the cellular mechanisms of disease and an interest in veracity in science communication. ‘Me’ versus ‘Myself’ maybe more accurate from a cellular perspective, but is not as clear cut as ‘Us’ versus ‘Them’. Fighting your own cellular mechanisms that have gone awry sometime seems a futile ‘battle’ and hence can be isolating for people who understand this.

But as the doyenne of cultural memes, Prof Deb Verhoeven (@bestqualitycrab) pointed out in a twitter conversation on such, the ‘brave fighter’ metaphor ‘implies agency and responsibility where none might exist’. She then pointed me to this book by Susan Sontag on the topic.

Others placing an expectation of ‘warrior’ status on a person trying to deal with a life limiting or life ending condition, for which there may be imperfect or incomplete medical interventions available, can be an extra burden. I have had much support for my recent issues, but if I had a crowd funding campaign attached to a ‘chronic illness bingo’ card and got $5 every time people have used the word ‘brave’ or ‘fighter’ in reference to my good self and my ability to ‘beat’ my issues, I’d be rich!

My training gives me added insight and abilities to make connections whilst reading relevant literature. However, even if I came up with a new treatment in the lab tomorrow, it would still take 20 years to develop into a drug used to treat people with my condition (which is still undetermined) even if it was shown to be safe and efficacious in clinical trials.

But until then, I’ll be focusing my ‘brave fight’ to the existing ‘battle’ to change the current state and federal laws to allow voluntary euthanasia…because I may need the option, sooner than I had originally anticipated.
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The Holly and the I.V.

As I sit here in the hospital, hooked up to an intravenous infusion…the last of five I have since the Monday before Christmas, I’m reflecting on my sudden change of status from ‘medical researcher’ to ‘patient’ with my dealings with sundry colleagues in my Dept (Med School) and the local collaborative Hospital.

The back story of this ‘sudden event’ in my life was I had a shunt from behind in my car at the end of Nov, just after my trips to the Gold Coast, to be a key note speaker at QUT IHBIinspires student conference, and to Canberra to participate in the AAS SAGE gender equality conference.

I had an instant headache, minor neck soreness…took 2 paracetamol & got over it. Within 30 hours, I had suffered acute demyelination of my optic nerves resulting in homonymous hemianopia (perhaps completely independent of minor head trauma from car accident). So spent my 40th birthday in early Dec semi blind…and not in a good way! After a couple of trips to the Ophthalmologist…who took 9 days to refer me for an MRI…as she didn’t have time to do the Vision field test at the first appt, I then had to wait 8 more days before they stuck me in the MRI tube…by which time my vision had returned 90% so I could drive myself to my scan.

On the day, I made gallows humour jokes with MRI techs about going in the tube for whiplash and coming out with a brain tumour. After they made me go back through with contrast…immediately, bumping their list, I knew something was up…(and was no longer laughing). I went to pay and the notes were marked ‘urgent’ and the admin lady didn’t know the code for what the MRI folk saw. I found out the next day (when I got results at the GPs) it was suspected tumefactive MS…she’d never seen it before, as too rare?

As they had sent me home from my MRI with my CD of 313 images the day before…and I had already seen the large lesion for myself on the on the contrast scans. Had sent the series that looked dodgy, via twitter DM to a mate who is a consultant specialist in Geelong (who offered to have a crack at rudimentary Dx). He called old MS lesion or scarring on the scary looking white patch on the scan. So…I was braced for impact when I got the full annotated MRI result from the GP the next day (Sunday before Christmas)

At 9 am Monday 22nd Dec, I emailed the referral letter directly to my chosen specialist….The head of the Clinical School at work, with whom I sit on several committees. He rang me that arvo, told me to get to the day unit immediately as he had arranged his Registrar to start mainlining a broad spectrum anti inflammatory (corticosteroid) into me as needed 3 days IV…and we had only 3 days left before Christmas. So I spent parts of the next 3 days, fielding shocked looks & urgent questions from my pharmacy & ID colleagues, who run the day unit. (No such thing as medical privacy when you work in a small regional Med School and collaborate with many clinicians at the Hospital!)

I managed to make the Med school end of year staff BBQ, with the IV line hanging out of my arm, to which one jolly japster (who shall remand nameless, to protect reputation) remarked, ‘Well, you’ll be able to mainline gin, now!’ << very tempting!

I didn't really sleep for a week over Xmas/New year….I've definitely had better festive seasons! I've spent a lot of time, talking my 3yo off the ledge, as she freaked out when I showed her the MRI pictures…she was convinced she didn't want a brain, as they appeared to be too much trouble (Epic SciComm fail there, Mummy!) My 7yo son thinks I really am Queen of the Zombies now, as I have empirical evidence for bits missing from my brain. I've also had IV iron x2 and IM B12 but my VitD levels are nearly double the recommended 50 units… 86! My proudest recent achievement…! Due to my love of (unhealthy) levels of sun exposure.

I was excited and humbled by the out pouring of support I received from my friends and followers on Twitter, many who came to support me 'in real life' over my time at home, adjusting to the prospect of having a condition (as yet to be fully diagnosed) that may be progressive, chronic and perhaps in time, send me functionally blind.

At the moment, I'm awaiting further tests: A lumbar puncture to confirm or deny presence of oligoclonal bands in CSF (15th Jan) and further (stronger) MRI (20th Jan) to see if IV & oral steroid (course finished 2nd Jan) has changed the lesion at all..and to check my whole spine for other lesions. These should then enable a step closer to a diagnosis, allowing for more nuanced anti inflammatory treatments, such as humanised monoclonal antibodies, that block the Individual inflammatory mediators (cytokines) or the molecules that T cells use ( alpha 4 integrin) to stop them crossing the blood brain barrier, to launch an cytotoxic autoimmune attack. But my serum also needs to make a trip to Germany, to check for John Cunningham Virus antibodies….and a positive result would rule out the use of the integrin blocker mAb…due to a nastier secondary side effect leading to other major immune defects.

But back to work on Monday, where I have to deliver a new unit for my course, that I was supposed to be writing in Dec/Jan/Feb…but I've lost 3 weeks of work time due to blindness. I'm hoping I can make a case for employing a casual academic to help me out in the next 6 months as I am unsure that I will be able to work at the same level of intensity as before. We shall see….!

(Thanks to @ad_mico for the idea for the title)

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