Tuesday, August 11, 2015

An Open Letter to Doctors from a Scared Patient in Scared Times.The Best Doctors I've had. And the Worst.

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Being a patient isn't easy. Especially when you're in hospital in an emergency situation, as I was last week... For those who didn't know - I presented to emergency last week, midway through chemo, with shortness of breath and they ended up finding a new cancer on my fourth rib on the right. Don't worry though - I'm fine! 

They removed the lesion that was there and the worst case scenario - a relapse of my very aggressive original disease - Acute Myeloid Leukaemia - in the bone has been essentially ruled out and being localised (there are no other areas of my body with this kind of look on scans), whatever the tumour is, that'll likely be all that's required in terms of treatment. 

During that tumultuous week, my first where I'd gotten major surgery come to think of it, I probably met as many doctors as I had since being diagnosed 4 years ago. I definitely would have if you took out med students, interns and residents from the equation and just left the specialists. I met 12 anesthetists alone. By the time you're reading this... I'd probably have met 14.

And over this last pressure-filled week, I've had some of the best and worst experiences with my doctors. 

But let's save the best for last... 

I'd like to say first that these doctors I've been under - I don't believe are bad doctors. Skill and knowledge wise, they're far from deficient. Indeed, one is apparently one of the best in his field; one of three who even performs the surgery I needed last week in my nation. And they're not horrible people either - I've come across worse, more abrasive doctors in my time, heard of many more horrible experiences, circumstances, rebukes from doctors and regular people to young cancer patients in particular - I probably came across these guys at bad times, in time-constrained circumstances or something of the like. 

But that still doesn't ease the pain, or worry I felt because of them...

Luckily, I'm a person who can cope with that anxiety well. But not everyone can. So at the very least... for those doctors, future doctors, nurses or other healthcare staff reading on - this can serve as a lesson. 

When I was told I had a lesion on my fourth rib - one that may be cancerous, as you can imagine, I wanted to see exactly what it was. Or at least learn more about it. 

I was admitted to hospital on Tuesday morning, and found out about this lesion that afternoon. Immediately on hearing this, and learning that there was a spot in that same area last year - I wanted to see the scans or reports myself. I struggled (I was still cramping and short of breath) and limped my way to the nurses and doctors station and demanded to see my reports or my doctors as soon as possible. 

After a while, the resident on my medical team walked in and told me the bad news. He confirmed that there was some kind of lesion, but when it came time to seeing the report... he couldn't give it, as "Only a specialist could give such reports to patients, according to New South Wales Policy." I was pissed. Angry,,, beyond words... They were my scans... my reports... about my body. Why was I not allowed to see them, and someone else was in the first place? Shouldn't it be the other way around?

But I guess it wasn't his fault. And I guess I could see a potential reason for such a policy. You wouldn't want a patient to worry themselves too much, or be disclosed information without knowledgeable guidance.... Fair enough. 

"Could you call or page my specialist so I could see them?" 

No. That was for some reason or the other impossible too... He was probably scared of bothering him for this tiny thing. The systemic bullying, and even sexual harassment that came with the doctor hierarchy may have had something to do with this. If the consultant on call was such a bully, he may have had to cop a huge tongue-lashing from him, at the very least. Perhaps the laws were extremely restrictive. In any case, it wasn't him I was angry at. I got where he was coming from, and saw that he had no power to change things here. So I tried everything; calling my own specialist on his line (he wasn't in the office and couldn't answer), calling my GP (who's amazing and has helped me often in crisis situations in the past) and even calling and asking other doctors, including specialists at other hospitals, to see if there was something I could do. 

Eventually, I resigned myself to waiting 'til tomorrow, for my consultants' usual Wednesday "Grand Round", where he and those under him would review all patients under their care for the report. 

And the next morning, I got an absolute 'Yes. Of course you can see your reports" from him. 

Great, right?!

That's when I met annoying doctor number 1. The senior registrar (the level just under consultant) under my consultant was busy. I could understand that. She may have had a few long cases, or emergencies under her belt. 

But for two whole days, two painstaking days of me asking her, the residents under her, my nurses, my doctors and my consultant again on the phone again and again, I didn't get to see that report. I didn't know for 2 days how large the lesion was. What caused them to suspect what they suspected it was. How much of my body would be deformed; cut away in this surgery that was being planned there for it! 

All I had to work off in this time were off remarks from my haematologist about a "lesion on the anterolateral aspect of the fourth rib" that radiologists suspected was a "chondrosarcoma" that the orthopedists (bone surgeons) recommended required me to go straight to "a rib resection" rather than a biopsy first. Words I could luckily grasp and understand, with my medical knowledge, but ones that would have left most other already anxious, suffering patients even more distressed. 

When we asked her why the reports hadn't been disclosed thus far, by anyone else, including the anaesthetists, orthopedists or the pain team who'd all been by by that point on her own rounds (which can happen at anytime in the day by the way - they often catch you when you least expect it, one after the other) later that day, she responded, brashly, dismissively even, to my obviously anxious mother, that "It's because we're the haem team." before brushing on to the next question, failing to even acknowledge our plight.

 After a rushed consultation (we were her last patient of the day, and we'd seen her laughing alongside colleagues later on; so she wasn't rushed by other patients), a non-commital "Yeah, we'll get on to it," and a "hmph" and a small turn, she was out of the room, leaving us even more confused than when she entered.

The next day, early, before 7am (breakfast is served at absurdly early hours at St Vincent's), we had more of the same. And it was only after cornering my haematology consultant onthe phone that we finally had the original resident, who'd initially been the one to refuse our seeing the reports, come in, show and explain the results of that CT scan to us. A mere hour before 5am Friday, the hour at which hospitals, for all intents and purposes, close. 

Now I understand that doctors are busy. I understand that they don't always have time, that they may have emergency situations and that they have a LOT of work to do. I understand that some patients are placed on higher priorities than others; indeed, rather than get angry, I'm a patient who's grateful if he's seen last, as that means I'm probably most well off, medically.

But though these things may seem like little, pestering requests peppering your busy schedules as doctors, they mean EVERYTHING to a patient going through tough times. Especially those newer to hospital experiences. But as you can probably gather... veterans like me get scared and anxious too. 

The sad thing is, teams often have these informal priority lists assigned to patients to get procedures and scans during in-patient stays done, but the little requests, and sometimes even the less likely, yet all-too-possibly correct tests aren't done. Because in addition to my not getting these reports, my echocardiogram (an ultrasound of the heart) was put to the back of the list so often, after they ruled out most of my major causes of shortness of breath, that it wasn't even done until I specifically reminded the team about it. They'd simply forgotten. 
The chances of there being a pericardial effusion causing that (they ultimately ended up pinning that initial shortness of breath that brought me in to my cramping as all the other tests came back negative) initial haggard breathing was unlikely, the chances of it being severe minimal considering my lack of the Beck's triad of dangerous clinical signs. But it was still something that could have played a part in my initial presentation. Something that could have blown up in my face considering the fact I was getting major surgery in the chest later that week. 

I understand there may not be time to answer everyone's tiny little questions, or to grant every little request. I understand that there are days where you may be overwhelmed, where the concerns of a pushy family whose child has what's likely a slightly cold seem irrelevant next to your failure to resuscitate a young man after an accident. I know you're human, and can't do everything...

But you don't need to. Delegating the less necessary concerns, the less-likely-to-be-severe complaints of patients and their requests, to those below you in the medical team, those secretaries or clerks assigned to you, or to a colleague with more time on his hands is one way you can make the lives of both you and your patient better without impacting your own. If it does require a little effort on your behalf, then do document those "less urgent" concerns somewhere - maybe even design a symbol or mark to distinguish them from the rest of your notes - and try to get back to them later when you get a chance because believe me - it's not just your patients who benefit from this - it's you too. The small things can make the biggest difference to a patient going through what's often the worst days of their lives, and if you can resolve those problems for people every ordinary day of your life... then your own life will be the richest of anyone's in the world. 

Making your job your profession as a doctor is vital not just for job satisfaction, it could have huge mental and physical impacts on YOUR life too. 

I've dished out a lot of dirt now... and this is just annoying Doctor #1. I could go into Doctor Annoying Number 2 into extravagent detail; and some of the words, some of the things I've faced from doctors in the past, I could go on for pages about; but I feel I've done enough of that for now. Suffice to say the phrase "typical Surgeon" could do Annoying #2 justice... you may just hear the goss on him later if he happens to do something else very alarming today.... but I understand how he can be very busy too. 

But though I've had many bad experiences with doctors at various stages, in various circumstances, in the past, I've been lucky enough to have most of my experiences with doctors positive in nature. 

The words that changed my life were uttered from my first haematology doctor's mouth, the conversations we've had over things ranging from life-and-death decisions, the future of medicine and treatments, to exchanges of fishing tales and adventures tantalisingly human in nature. The confidence my transplant specialist had in me to choose the medication that's kept me alive today and then fight for my right to get it completely subsidized came down to an email exchange between him and I that he was happy to facilitate in his own time. 

I've been blessed with not only the best parents, siblings, nurses, staff and friends in the word, but also some of the best doctors too. 

But by far the most human of these has been my opthalmologist; my eye doctor, and my first doctor, who'll always have a special place in my heart. 

That ophthalmologist though, she showed just how amazing she was in this last tumultuous week too. 

My eyes, as most of you regular readers would know, have gone through a lot in the last half year or so. I've lost almost all my vision in my left eye permanently to a "central retinal venous occlusion", whose cause we still don't know and then, just over 3 months after that, almost lost my right eye as well to the same reason

My reflections... my feelings as I went through what I felt may well have been the last time I saw anything.

During this second time in particular, as I was rushed to the hospital, experiencing the same things as I did the first time, seeing the same results from the same tests coming back, I was in one of the most sullen moods of my life. I knew what was coming. And I knew that there wasn't must we could do to change the results of it. All I could do was sit there and wait for what could have been the last flashes of lights I'd ever see go by in this alien, dreary waiting room. 

Yet when I called Claire during that time... she showed nothing but concern and care for my welfare. Me. Just one of who knows how many patients she had she showed love and concern for where she had every right to be peeved, pissed off and even violated for being called up at 5am with information of this going on. 

During that crisis itself, and in the weeks following up, she was her usual amazing self. Luckily, the vein blockage that caused my left eye to go blind had cleared for some unknown reason and I hadn't lost both my eyes. And in the weeks following, she was happy to see me every week during this time, and even offered and decided to see me for free in this period. 

Every appointment, as usual, we'd discuss the findings as she saw them, and she did more than explain the goings-ons of my eye to me as the details emerged on the screen, she made sure mum and I both could see the differences; the changes in the scans, actively involving us in the process and making us feel like we had control of the situation. Something many, if not most patients, wish they had in their interactions with doctors. Something that's indeed, been linked with better outcomes and survival times in diseases ranging from colds to kidney failure to advanced cancers

We couldn't thank her enough for what she'd done for us in those last few weeks/months. She'd transformed this tragedy that would have stayed with me for life into one of the most inspirational experiences of my life. And we thanked her in kind by giving her a pair of gold bauble-style ear-rings; a wedding present to her (she'd recently been engaged we found out from another patient of hers), as during her eye examinations, she always had me look at her earrings, and I always made sure to point out the style she'd chosen to wear on the day (she always picked quirky and extravagent ones to "give her patients something to look at). 

We gave that to her a month ago, looking forward to my next 6 weekly appointment. 

But somehow, during the crisis that was last week, she got wind that I had yet another cancer. And when I saw her face in my window the day I'd gotten my bone scans (indeed, she was the one who deciphered them for me, and let me know that they confirmed it was another cancer I had), I was shocked. I couldn't believe it at first. But there she was, the earrings we'd gotten her glimmering in the light, smile bright as ever, beaming at me, with flowers in hand. 

"How come you're here? How did you know what was up?"

"I'd heard about this happen, and I wasn't far away. I live right in the middle of Sydney, really, so it wasn't that hard to pop in." she exclaimed cheerily, handing me a set of fake flowers and then taking them from my hands, still limp from disbelief and organising them on my noticeboard of cards and encouragement with my similarly awed mother. 

I was astounded. I know personally the amount my doctors, my two haematologists leading my treatment, cared for me, as they cared for any of their patients from deep conversations with them about treatment and just life. But even THEY hadn't gone this far to show their concern. Now that I think of it though... I do remember my first doctor, the one who'd told me those words, "The Good news is you're 17 and you have leukaemia, but the bad news is... you're 17... and you have leukaemia," walking in shyly to see me and wish me well before one of my procedures at a completely different hospital, on his day off, one day. He played it off cool... but he was there to specifically see and talk to me...

The generousity of these souls... their sheer care for the people who'd been thrust into their hands damaged and sick and their nurturing huamnity to bring us back to health... was just staggering. 
That sort of care these 2 amazing souls had didn't just extend to me though. My first Haematologist told me his code one day in a candid moment. He treats "Every single person as if they're his father, brother, son, or uncle". And the way he treats them backs this up. He goes to every extent, doesn't care if he steps on toes or upsets people; he's renowned for giving tongue-lashings to clerical staff who wouldn't budge on red tape, and every time you're in serious trouble, you're glad to have him there because, if you needed it most, he'd ensure you got that CT scan, MRI or procedure done, no matter what others would say. 

People call him eccentric, difficult to work with, rude even. But my Dad saw him immediately for what he really is. "The other day, before your first chemo, I came across him in the hallway and asked 'Doing anything this weekend, doctor?' attempting to make small talk. He just stared off into the distance and walked off the other way. And I wasn't offended at all." 
"Why," I asked. I'd only just met him for the first time the other week, he'd only just told me those words that were going to change my life and I hadn't processed them for their real meaning yet. To me, he was an eccentric, off-putting doctor who had, in my own words, "No people skills."
"Because I know that the reason he did that was because he was busy thinking about a problem he had with another patient. And that patient in his mind may have well been you. With that in mind... Who do you want treating you?" 

Claire, my opthalmologist, displays the same level of compassion and care for ALL of her patients too, I know, through this enlightening chat we had with another of her patients at during last visit. She was carrying a bunch of flowers, the same variety, I'm realising now, as the one's hanging on my noticeboard in this room, and my father made a remark on the arrangement. 

"Yes, they are pretty aren't they?" the old lady smiled. "Claire got them for me, bless her. My son had died this month 20 years ago, and I mentioned that I was planning on visiting his grave to her during my last check-up last year. The dear soul remembered... Bless her." she sighed, wiping off a tear...

It's no wonder she always talks about being blessed and having the most adorable patients ever, "a veritable gang of second grandmas" as she puts it... 

The humanity of that action... the sheer compassion and thought it showed... goddamnit... 

THAT'S the kind of doctor I wanna be. 
Hell... that's the kind of HUMAN I want to be!

Random acts of kindness have the power to change lives. I've said it many times before... but these guys transcend that and make every action as good as possible. It's bloody amazing, and I'm honoured to be affiliated with souls like this, and one day, aspire to be someone just like this.

I know it's hard to display this level of care and compassion everyday, for everyone during every circumstance too. But I know one thing as well... it's bloody worth it. And I'll definitely try to be as good a person, as well as a doctor, as I can be for everyone... forever. 

But for you doctors, medical professionals; just ANYONE reading this, you don't have to feel the pain, or the worry of getting a cancer to understand this. You don't have to experience it first hand, as many doctors, such as these, end up doing before they themselves decide to write an inspiring article and change the way they practice. Hopefully reading this will make sure you don't have to do that one at the very least... You don't have to examine or read through textbooks and journal articles to find out how you should deal with your patients. All you've gotta do is Just Be Human. Just be nice... And if you can spread that humanity in a place, at a time at someone's life where there doesn't seem to be much going around - you WILL Change Lives. You WILL make a difference. And if you're ever struggling to find meaning in your life - be you a doctor or not - these acts will change YOUR life too.


  1. As a final year medical student about to become a real doctor, this entry really touched me. Because we've all been there...we've all come into med school all bright-eyed and wanting to be compassionate to every patient we see...until we become jaded by the realities of endless paperwork, menial tasks and bureaucracy in hospitals. It pains me that patients who were once complex human beings who would rattle off a long social history gradually became just a list of tasks to do for the day. And I HATE it when this happens. Thank you for giving me perspective. Peace out.

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