Non-compliant

There’s a funny thing that you see over and over and over in healthcare: people who ignore their doctor’s advice, be it their GP or specialist, then come to the emergency department for help when they reach crisis. I guess there’s something human in us all that makes us think we’re above taking advice, even when the person giving advice has a level of expertise that we don’t. But when a complaining patient is only in ED through their own actions it can be hard to feel terrible for them. They still get the appropriate treatment, don’t get me wrong there, but when you’re done and dusted dealing with them you might share a roll of the eyes with their nurse or doctor over their behaviour.

You didn’t pay any attention to your doctor before when you were told how best to manage your condition, so why would you listen to us now? More to the point, are you going to listen now? Or maybe you will listen right now because you’ve scared yourself with how sick you’ve gotten, but how about next week, or next month? Will it be back to old habits? You got yourself into this, and now you think we would help you, because…? Of course, ethically we have to help you, even if we think you’re a dodo who has made their own bed and should possibly have to lie in it, but we spend a lot of time shaking our heads. There are a lot of sincerely needy patients: fractures, cancer patients, appendicitis, infections, many patients who have illnesses out of their own control. And when those patient’s beds are full of patients who could have avoided being there…well it grates on a few nerves is all. But we’re all only human, so we try to understand you, and anyway we’re health professionals so it’s our job to give you our best assistance regardless of our personal opinion. A professor at uni once gave this quotable quote:

“professionalism is a cloak for our personal problems”.

Compliance is the word of choice adopted by health professionals to discuss, at least in pharmacy terms, how well a patient manages to comply with the regimen of medications given to them. Do they take the medications prescribed, do they take them at the time/s prescribed, with or without food as prescribed, separate in time to other medications as prescribed, for the duration prescribed and so on? If so then they are described as compliant, if not then they are said to be non-compliant. There’s a bit of political correctness around which word you use because of the effect it might have on the patient if you “label” them. Adherence is another option, concurrence is almost never used and there’s one that I can’t think of that’s been ruled out. It applies in medicine terms as well as in other fields.

So a patient arrives at the emergency department. The presenting problem, that one main issue that has caused them to come to us right now? They have severe pain, 8/10 on the usual pain scale. And why? Well they have a chronic pain condition, whatever that is, and we know that they can relapse from time to time, but actually the reason for this relapse is that the patient stopped their pain meds. Okay, so you’ve come to the  emergency department for help: what exactly do you think we’re doing to do, other than restart your pain meds? Surely you could have worked that one out. I get that pain meds have a lot of side effects that can be hard to deal with. But wouldn’t it have been better to sit down with a doctor and work out a management plan instead of just stopping something yourself? Now, instead, you’re in worse shape than ever and we have to pour MORE pain meds into you just to get you back to where you were, not to mention the time that will take, time that you’re writhing in agony. It doesn’t make sense to me. If anyone knows how tedious and frustrating the side effects of medications are, I do. Seriously. I put on 20kg, was sedated for 4 years, couldn’t work for 2 and I sweat all. the. time!! And that’s just 1/3 of the list. But you don’t just stop your meds because you don’t like them. You go back to your doctor, talk about the problems, work with them to adjust your meds and try again. That’s my experience. And when people come to us having not been bothered to put in that work and short cutting the process, then screaming that they’re in pain which is the obvious outcome, it just doesn’t make sense. They have a lifelong pain problem, surely taking the effort of one doctor’s appointment isn’t too big an investment to make? This especially bugs me for people on insurance and worker’s compensation because those establishments will do anything to help get people back on their feet (and back to work, of course) including paying for doctor’s visits, therapy like physiotherapy, and medications. You just have to be willing to work with them. People do “get over” their condition and the ramifications of it, I get that; so do I! But you’re kind of stuck with it so sometimes you have to dig in and just work through it. Going off course just isn’t going to make it any better.

Another common presentation is asthma attack. That’s not so shocking, except when its because you didn’t bother to take your asthma preventer inhaler for the last 3 months; you “thought you didn’t need it”. What are you thinking now? Are you going to go home and take it now? Did you ever think that maybe you never had an asthma attack BECAUSE you were taking your asthma preventer, rather than that you didn’t have asthma and didn’t need it? Did you ask your GP to review your asthma and maybe check your respiratory function tests again before making changes? No, you thought you knew better. And if you start giving me that big pharma conspiracy rubbish about how GPs diagnose people with asthma and prescribe them asthma preventers to get kickbacks from some drug company, I’ll scream. They did it to save your life; asthma kills! Have you heard of the tragic thunderstorm asthma event of 2011? And that’s just what people hear about. People die all the time of asthma. It’s not just some kids disease, or a disease that doesn’t really matter, or one that can be treated every time it flares up if its been under poor control. That cough you get walking up the stairs? That’s your asthma. That tightness in your chest on a cold morning? That’s your asthma. You don’t have to have an audible wheeze to have symptoms of asthma. Take your preventer, get reviewed regularly by a doctor and you can control your disease. But take it seriously please. And FYI, when the label says take TWICE daily, that means two times, as in morning and night, not once a day. If you use your preventer once a day, it will only be in effect for 12 hours; the other half you are on your own. And if you use your Ventolin/Asmol inhaler more than twice/three times each week? Your asthma is NOT under control!

One of the worst examples of non-compliance is patients saying pure and simply “I didn’t take them”, especially antibiotics. Why did you bother to see a doctor if you then went ahead and ignored their advice? It’s kind of rude. And self-jeopardising. And for those patients who DO go ahead and take the antibiotics, did you know that almost no one actually takes their antibiotics as prescribed? If its prescribed three times a day they take less. If its prescribed for 7 days they take less. And YET, every time antibiotics are dispensed, patients are told how to take their antibiotics, and for how long, and to complete the course. It really is just up to them to take them. There are apps (e.g. NPS Medicine Wise) where you can enter your dose, and duration of antibiotic, and the app will send you a reminder each time you are due for a dose. You can use the alarm clock on your phone to remind you when your dose are due. You can have your pharmacy add the antibiotics to your Webster pack, or you can add them to your dosette box. Really there are a lot of different strategies you can use. But know that when you come into hospital, your pharmacist, and probably your doctor, and maybe the triage nurse will note the date you were prescribed your antibiotics, COUNT how many antibiotics you have left and do the math; it’s what we went to uni for! And non-compliant will be written on your chart. Just take them. Why go from a slight upper respiratory tract infection or small wound, to a full blown lower chest infection and disgusting weeping sore when you could have prevented it? Sometimes conditions progress anyway, but do your part at least. Plus incompletely taking a course of antibiotics, not killing off the bug fully, leads to it learning resistance to that antibiotic so that next time you take that antibiotic it won’t work as well as it should. If you spread that bug that has resistance to someone else, you’re spreading resistance. You really don’t want to be that person. Take them, take them as prescribed, and take all of your antibiotics.

Or there’s that person who hasn’t been bothering to take their cholesterol lowering tablet and is admitted with a myocardial infarction (heart attack) and has to have 3 main vessels in their heart unclogged! All because they thought their cholesterol level was “fine” and they didn’t need it. Did you ask your doctor about that before you committed to that course of action, triple bypass guy?

Or hasn’t been bothering with their blood pressure medication and their systolic blood pressure at the bedside is over 190 when it should be at least under 140 and ideally around 120. They insist that they have white coat hypertension which is where patient’s get nervous before their blood pressure is taken, or around doctors, and it causes their blood pressure to rise. Except it doesn’t ever cause it to rise that much, in-denial lady. Take your blood pressure tablets unless your blood pressure falls below 120, and even then keep taking it unless your doctor advises you not to. Yes your own blood pressure machine might tell you ONCE A DAY that your blood pressure is okay when you’re sitting around relaxed at home. But why did your doctor diagnose you and prescribe you tablets in the first place? So many people are so reluctant to take blood pressure tablets and I don’t know why. In most cases its one tablet once a day and the side effects are usually mild, it’s really not a big deal. And again, its not a big pharma conspiracy to get you to take tablets, it’s a lifesaving prevention strategy to stop you having a heart attack, killing your kidneys or bleeding your brain out…why not take your tablet??

Just take it, or talk to your doctor. Those are the main concepts here. Confusing?

Edit: I’m not perfect. No one is perfectly compliant with their medications. I know that. I miss doses of my tablets, in fact I missed last night’s meds cos I broke my routine. But one thing I don’t do is miss them on purpose. All I’m asking if for people to try to carry out their doctor’s directions, for their own good. I read a quote yesterday,

“No one is perfect. But if we aim for perfect, we might reach wonderful.”

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Private hospital 101

I work at a private hospital, in the emergency department (ED). Prior to starting this job in August last year, I had spent all of my career, apart from the obvious gaps when I was sick, in public hospitals. The change has been quite interesting from several financial prespectives.

  1. Funding private hospital ED

In a public hospital emergency department, as long as you have a Medicare card, everything is free. To you, I mean; obviously the cost has to go somewhere, so it goes to the government because they believe in free access to healthcare for all Australians through their funded hospitals. It’s actually one of THE most amazing, and EXTREMELY underappreciated benefits to living in Australia. Whatever you think of any government down under, you absolutely SHOULD respect and appreciate this benefit of life here. If you had any idea how much money you rack up in one long wait in ED for nursing care, medical care, tests and scans, medications, interventions and so on, I think you would be shocked! We are talking hundreds if not thousands of dollars over several hours, and that’s just in ED. Try to think of healthcare, and paying your taxes, from this perspective; maybe you’ll be calmer in the ED, and more resigned to all that money you fork over to the government.

To access the emergency department where I work, you pay $300 upfront before you walk in the door which is an out of pocket fee, not rebatable by your health insurance, paid on the spot before anything else happens. Basically it’s a general fee against the types of costs you rack up, such as medications, blood tests, Xrays and CT scans. If you end up accumulating costs above this payment, they may be charged to you. At the beginning of working here I thought this wasn’t great, or fair, as far as healthcare equity goes . But now I think about it differently. We are one private hospital. In the city of Melbourne there are 3 major public hospitals: Royal Melbourne Hospital, St Vincent’s public hospital, and The Alfred, as well as specialized public hospitals: Victorian Comprehensive Cancer Care, Royal Children’s hospital, The Women’s, Eye and Ear hospital. That’s plenty of public health to go around, and its just in Melbourne city; not the suburbs. There are other private hospitals as well, and I’ve come around to accepting that there’s a valid place for both. We are only trying to recuperate costs outlaid because the government doesn’t fund our patients, we do, at least in the outpatient setting. That’s what category the ED technically falls into, outpatient; in fact sometimes you hear it referred to as outpatients. Private health insurance, check the small print, only covers the INPATIENT stay once the patient is admitted to the ward so if we don’t get some money somehow for what we do in ED, we are totally out of pocket ourselves, and as a private enterprise, we wouldn’t be able to continue to offer healthcare, which would be bad for everyone, not least of all me whose whole day is spent in ED which I love!! So yes, I do now see the virtue. Yet somehow, when I see someone on a stretcher with a vomit bag being asked to sign waiver forms for their $300, it still generates an ick factor!! Weird, huh?!?

I would add, because it is relevant, that the $300 fee does also serve a function of natural selection where those who can afford it come into our ED, and those who can’t afford it, don’t. That’s not to say that they are just turned away, not at all. We always ensure they are transferred to a public hospital that can care for them without the money burden. And all patients coming in by ambulance are informed before arriving that the fee applies to them, so that they can choose to go to a public hospital should they not want to pay. So, would you pay?

Revolt

*WARNING (and spoiler alert): contains self-induced vomiting*

12th April, 2017

From one drama to the next! Honestly! Did I learn nothing from yesterday? The whole phone thing? Nothing about being careful and deliberate in my actions?

See, I have this system. Yeah right! A system is useless unless you stick to the system. Which I mostly do, but mostly isn’t really enough when there’s a system involved. You stick to the system, or you don’t.

This system involves my medications. I’ve probably been over this but I have a nice purple medicine box with 4 rows. One row for my morning tablets, one empty row, one row of 3 valproate tablets for each night still in their original foil because they go smooshy when exposed to air, and the final row for the rest of my night tablets. The valproate for the evening doesn’t fit with the other tablets, hence its own row, but the morning single valproate tablet fits it, hence the empty row. I have carefully marked the morning tablets, and the night tablets so that I can’t get confused. Plus there’s the fact that I unwrap one valproate tablet in the morning and three valproate tablets in the evening. The morning row has red and pink capsules of venlafaxine and 3 little white tablets; the evening row has a dark red iron tablet, a little pink cholesterol reducing tablet, and three chunky quetiapine tablets, apart from the lithium that is in both morning and evening. They are different, the morning and the night tablets; clearly distinguishable. They are not the same. If you take the time to notice, which I periodically don’t! Theoretically, I check all the tablets lying in my palm, to make sure every one is present and accounted for before swallowing them down. I have a list written on the back of the box telling me exactly what should and shouldn’t be there, for reference. But I’ve been on this same combination of tablets for well over 6 months now, and I’m very careful when I pack the box, supposed to be anyway, so sometimes I just pop the tablets and scull them down, get it over with!

Like yesterday. Before I knew what I was doing I had opened 3 valproate tablets, shaken out the dark red and pink tablets, noticed subconsciously the big chunky tablets, and sculled the lot! Even though it should have been obvious that I was taking the wrong tablets: wrong compartment, wrong colours, wrong amount. It took about 20 seconds to get that same shot through the gut as I had yesterday when I realised that I’d lost my phone. I knew then, consciously, that I’d really stuffed this one up!! It has happened before, once I think, but seriously! What was I thinking? And here’s the thing, I wasn’t. I was on auto pilot, distracted and that’s how it all blows up in your face. What’s the big deal? Those 3 valproate tablets, plus the 3 quetiapine tablets, they’s the big deal. They are basically my sleeping tablets, and here I’ve taken them 10 o’clock in the morning! They aren’t actually prescribed for sleeping, they are mood stabilisers but this is their major side effect. Any other day I’d just resign myself to going back to bed and sleeping them off, but not today.

Because there’s something else that I haven’t told you. I’ve got a job!!

I was going to save the excitement for my official start date on 29th April, however this happened, and on the first day that I’m going in to do the official orientation and get all of my paperwork sorted! I have a 4 hour shift starting in an hour and I’ve just taken my sleeping pills by accident/carelessness!! You can see the problem here. First impressions and all that, I don’t want to call in sick for my very first shift; I’m determined to be there and on time and get this job off to a good start. I don’t want to have to go home sick part way through the shift because I can’t keep my eyes open. I definitely don’t want anyone to think I’m under the influence, or unfit for work! That would be extremely unfortunate! Not just for this job, but for my career; the pharmacy board frowns heavily on pharmacists using any substance while on duty, oddly enough. So, what to do? I think you can see where we’re going now.

The ONLY way to try to prevent the sleepy pills doing what sleepy pills do is to get them out of my stomach before they are released from my stomach to my intestines, and absorbed into my bloodstream, making their insidious way to my poor brain. The only way to get them out of my stomach is to induce vomiting!! Honestly, I cannot think of a more revolting, horrifying task to have on ones hands than this. I don’t think I have ever made myself vomit before. I recognise now how compelling a disease bulimia is to convince you that this is a way to live. To me it is extremely repugnant. But what are my options here? It took a lot of psyching myself up for it, and a couple of false starts, don’t ask me how, but we got going. Here’s the killer: I ended up throwing up my entire breakfast which I’d had an hour and a half ago, yet there wasn’t a sign of the tablets and orange juice from 10 minutes ago. Here is the cleverness of your stomach. It knows that its job is to break down food into smaller pieces so that your intestines can do their job. But there’s nothing to break down in fluids, so your stomach lets them right past. In that 10 minute period, my stomach had already released all the fluid/orange juice, and the tablets with it, and they were gone. That whole disgusting, humiliating, distressing episode, for nothing!!

What next? Well, its time to go to work. Fingers crossed that I can handle this and get through what I need to get through.

Here’s the odd things about my sleepy pills. When I first started taking them I would be dead to the world within 30 minutes, or less. Honestly, I would take them and immediately get upstairs to bed because within 10 minutes all of the muscles in my legs would be jelly and I couldn’t step up a stair if I was being chased by an axe wielding madman! My arms would be equally useless. A couple of times I got into bed and then needed to go to the toilet. I would bounce off the wall, my bed, the dresser, my bed, the wardrobe, the bedroom door, the bathroom door and back again! I’m sure it looked completely hilarious from my husband’s point of view but I couldn’t even see straight, let alone have control of my legs. My eyes would go evil vampire red because of how much the medicine dried them out. Basically I was gone for the night. And I got the best sleep! I was drugged out really. And of course as my dose went up the effect continued.

But over time, as the dose has steadied out, I’ve become more tolerant. I don’t get that drugged out feeling now, and I can stay up sometimes for a couple of hours after taking my night tablets. On occasion it does make me drowsy enough to start blinking heavily, struggling a bit to keep my eyes open, but if I really want to I can keep them open; it doesn’t overpower me like it did before. It still helps to give me a good nights sleep, and without it I sleep pretty lightly and spasmodically. As I experienced last night, because after taking my night dose in the morning, I had to take my morning dose of valproate at night to keep the balance, and one tablet isn’t enough to sedate me; plus I had no quetiapine in my system.

So, I took the wrong dose, and didn’t manage to catch it before it got into my system. And now I have to go to work. Well this should be fun! Here’s hoping I can fight the effects for more than a couple of hours.

Okay, next strategy: a large Coke, no ice from Maccas. Hopefully the caffeine will do something!! I drove all the way to work (I was questioning whether that was a great plan, but I felt fine at this stage) feeling okay, until the last 5 minutes when that warm, fuzzy, about to go to bed for the night feeling settled in. I got a little lightheaded on standing, slightly dizzy if I turned my head quickly, and just plain drowsy. My eyes wanted to shut and go to sleep, my thoughts got a bit thicker, I was trying not to speak slower. I hope to goodness I managed to pull off looking as enthusiastic and committed as I wanted to. But there was a big challenge waiting for me. Most of the 4 hour shift involved sitting at a bench reading policies and procedures and signing off on them, and doing orientation quizzes on the computer!! I mean, seriously! Of all the days in the world, I really needed a stimulating day today, and I got reading of less than riveting material!! I think I pulled it off, I mean I got it all done, but I have no way of knowing whether I was doing it way slower than usual, a bit slower than usual, or how many micro sleeps I had sitting there at that bench! Luckily the chair was very uncomfortable so that keep a bit of an edge on my alertness, and after 2 hours when my supervisor went for lunch, I went out and got an iced coffee with plenty of sugar! I think that did help a bit to keep me going for another couple of hours! Plus the fresh air was good.

Yikes!! What a day! But I did survive, somehow, by some miracle, and I’m going back on Tuesday after the Easter break. To be continued.

Did I come home and go straight to bed? Yep, you betcha! A couple of hours sleep did wonders. Usually I can go straight back to sleep at night after an afternoon sleep because of my night tablets so I did struggle a bit getting to, and staying asleep without them. But I didn’t struggle catastrophically. I think I actually had a pretty good night’s sleep in the end, although I was awake from 5am on the dot this morning, Thursday 13th April.

I can’t double up once I’ve taken the tablets, even if they were the wrong tablets. So what’s the plan to get back on track from here? Most of my tablets can only be take once in 24 hours meaning I can’t take night tablets again today. So I’ll take my morning ones tonight, then my morning ones in the morning (the morning doses are smaller so it won’t be such a big deal taking them back to back) and my night ones tomorrow night; then I’ll be back on track. Until then I’m sniffing my head off because of the longer gap in between doses of quetiapine, from morning one day to evening the next. It usually dries me out so sniffing is unusual and annoying! Apart from that, and the obvious drowsiness there shouldn’t be any consequences from stuffing this up, luckily. When you take the same medication all the time, a one off dose mix up doesn’t tend to affect your overall medication levels enough for issues to arise.

And here it is 7am and I’ve written this blog and I’m ready for breakfast, bright and early. I could possibly be very productive without those night tablets, but it wouldn’t be worth it for my mood. Ah the catch 22’s in mental health treatment! 

So, have I learnt my lesson in being more careful? I’d like to hope so, but I find the lesson only lasts as long as my memory of it, and that’s a whole other story!

Canberra Day 94

[Wednesday 14th December]

Well today was a terrible day career-wise, nothing fatal but nothing fun, so it’s a good thing that I’m in Canberra with a licence to explore and enjoy new experiences.

I’m having some issues with the Australian Health Practitioner Regulation Agency (AHPRA) that manages the registration of 14 different health professionals, including pharmacists. Previously we had our own pharmacy board, but in 2010 several boards were amalgamated and now we are managed jointly. This new organisation, AHPRA, manages our annual registration including our compulsory continuing professional development (CPD) requirements, whilst another organisation manages the regulation of pharmacies and pharmacy departments. All very boring and tedious, until your annual registration comes up against a problem. In my case a CPD problem. Each year between October 1st and September 30th, every registered pharmacist in Australia now has to achieve 40 hours of CPD to qualify to be re-registered. After the amalgamation the amount of CPD to be achieved began as 20 hours and increased over a couple of years. Its pretty standard now, and pretty achievable if you’re working, which is the point; to keep you up to date.

I first went on sick leave in March 2014 and stayed on sick leave for several months before I dragged my reluctant body back to work only part time for 6 weeks in September/October that year to complete my contract at the Alfred, in the vain hope that I would build up professional fitness quick enough to convince my workplace that I was fit and well to work and be re-hired. I was desperately hoping to stay on because I loved that job. It was a joke looking at it now; there was no way I was even fit for the very part time work I was doing then let alone more. But the point being, between October 1st 2013 and September 30th 2014, the annual CPD year, I worked 6 months and work generates CPD as does starting a new job as does changing positions within a job all of which applied to me. So even at the 6 month mark when I got sick I had oodles of CPD numbering probably around 50 or 60 hours. So I finished my feeble 6 weeks in dispensary, ended my contract and went back to bed.

By the time I got going again and went back to work, it was July of 2015. Already up to 9 out of 12 months of the CPD year, and to be honest, to this point CPD hadn’t even crossed my mind! A little teensy nervous breakdown and the associated issues had occupied the major part of my brain for months on end and work had just gone away. Even now returning to work I was conscious of the need to get up to date with the many new drugs and devices that had hit the market in the last year and a bit, but I hadn’t thought particularly of my CPD requirements with respect to my registration. I did all the required new job CPD, I did study on things that were relevant, I recorded it all and never really thought of whether I was making the 40 hour amount. Which is unfortunate, because I didn’t make it! I got 25 hours, not 40.

And there is no clause for people on sick leave. Or for people not working. You’re either practising or not practising. So, in November 2015 when I was re-registering as a pharmacist and got to the compulsory question about whether I had completed 40 hours in the previous year, I had to answer in the negative as in I did NOT meet the CPD requirements. And I won’t say that all hell broke loose, but all kinds of official pharmacy correspondence started flying around the web and through the postal service, and today is just another step in the painful process that is rectifying the situation! I’m not complaining about having to fix this up; I should have to. I’m a health professional and patients need to be sure of me being up to date and on top of the latest drugs and professional practice. I’m just complaining about the amazing bureaucracy that prevails in these matters! It is not easy to show that you have done your best to fix it, that you’ve learnt your lesson, and that you’ll do better in the future. Especially if you’re out of work again, because things just don’t come up when you’re not dispensing and reviewing medications on a daily basis. You have to actively look for things, and it’s just harder. But it’s part of my commitment and I have to just get on with it. So I’m off to send yet another email, which will probably get yet another “out of office” reply, followed by an actual reply sometime in the next two weeks or so telling me that there’s yet another technicality that I haven’t met because I was never told about it, followed by another email from me phrased very conservatively despite my inner rage and so on. You get the drill!

So there’s that, and following that the awful words “we’re terminating you”!! Seriously?! I went back to work officially in June 2015 with a fixed term 9 month contract. I guess I always assumed that there would be a possibility for extension at the end, assuming they liked me and my work was up to scratch etc. But no, despite putting me through two traditional interviews and a non traditional observation of practice interview I was never successful in getting an extension. So I was told I would be put on the casual list and they’d call me, which they never have but that suited me lately being in Canberra and all. So now out of the blue I get a call to say sorry, it’s just a HR thing but because you haven’t worked for us in 3 months we have to terminate you!! I’m sorry, what?! I’m costing you zip, I’m (usually) a resource available at short notice a 4 minute walk away, and if this was always a HR thing, why didn’t you just say goodbye at the end of my contract, instead of giving me an impression that I’d be called up to work?? So when I get back I have to return my keys and it’s all over. Well what a wake up!! Could this day get worse for my career?

Luckily I have good things planned so let’s off to the High Court to observe other people getting the rough end of the stick, potentially. I won’t pretend to understand the case that was being argued but the solemnity and the ceremony of it all was very impressive and the two counsels arguing were humorous in their own way, especially one who referred to “my learned friend” at the beginning or end of every sentence! I’m pretty sure even the 5 judges were smiling under their wigs. A bit of light relief, and I’m glad that becoming a lawyer was never on my list. I took my fill then left, remembering to pause and bow to the judges on my way out!

And now to really flush all that career mess out of my system!! I’ve been looking forward to this christmas concert by Igitur Nos at the National Library for a couple of weeks now. Turns out it wasn’t quite what I was expecting…more classical music, Latin and high brow Christmas songs than your typical carols. But it was pretty nice. Then a drive by a few places of interest: the historical and very pink Calthorpes House, and a few embassies.

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Lucky I have a lovely catch up with a friend after lunch. Nothing so soothing as hanging out with a friendly face and chatting away the afternoon. A super cute little baby helps just a little bit too! Happy day…in the end.

Finding the light

Hello friends,

I’m back. Sorry about missing the blog last week! I tried. I came up with one draft, then discovered it was totally over-dramatic and not what I wanted to say. I did another one, but when I read it back over it just didn’t really seem like much of anything! So, here I am with two discarded drafts, no post for last week, overdue for this week and next week is coming around fast! A bit frustrated!

Why am I so stuck? Why am I spinning my wheels? I want to write about suicide, but this time it’s real, somebody that I used to know. And despite however much distance you’d think “used to know” would put between me and this event, it has gotten under my skin.

For people who suffer with mental illness, hearing about another person’s experiences can be a trigger for a worsening of your own condition. We’re so susceptible to worsening when we’re unwell. It’s different when we’re doing well; we’re resilient and strong. This is especially true abut suicide. Talking about suicide, hearing about suicide, reading about suicide can be a trigger for someone who is unwell to start thinking in circles, over and over about suicide. That’s not to say that someone can cause another person’s suicide. But to a person on the edge metaphorically, it only takes a tiny bump to over-balance.

I’m not suicidal. I’ll clear that up now, and relieve any worried minds. I’m actually doing quite well, but this event has given me pause to think about not being well. It’s quite a long time since I have been suicidal. I have been very fortunate that suicidal thoughts have only been a small part of what I’ve experienced over the last 3 years. I tend towards grey days, nothing dramatic. But still, hearing about someone I’ve known, someone who was one of my first childhood friends, someone who I grew up with ending their life creates a moment of questioning of the situation and myself.

Of course there’re so many questions that come with any death by suicide. Thankfully in this case some of those were answered before the last day. The family were well aware of the mental illness and very supportive of their son, including providing a flexible workplace. Relationships were good, things had seemed to be going well. But there was no questioning why he died because the answer was clear: mental illness. Of course there was the question of could we have done more? But the answer is no: medications, counselling, support all given in full. Just an overwhelming sense of wishing it hadn’t ended this way this soon, but feeling that maybe it couldn’t have gone any other way.

Could something have stopped it happening that day? Yes. Would that have stopped it ever happening? No. Could we the long lost friends have done more, kept in touch? Yes. Would it have changed anything? No. Because it’s not about us, the friends and family. It’s about the mental illness battle ground in a person’s head. However much we love someone and want to help them, we can’t climb inside their head and fight the fight for them. We can only do what we can do from the outside.

Someone with mental illness has different questions that are all for themselves. This person had depression, I have depression; he ended his life, so where does that leave me? If it took xyz for my friend to take his life, what would it take for me to get to that point? They took their life this way, could I do that; if not, what would I do? It’s like being inactively suicidal and contemplating ideas and theoretical points of view, but you have no plan to carry them out; no active suicidality (the medical term for being suicidal). It’s like ruminating on whether I’ll get to go on holidays this year, and if I do where will I go, and what luggage will I need to pack? When patients are actively suicidal they will often have their will written, letters completed to their family, plans for handing over the business and literally will have signed themselves out of their life having hoarded enough poison, collected enough rope, built up the nerve to jump in front of the train etc. Then again sometimes it’s pure impulse on a background of ongoing suicidal thoughts that are just eating away at your will to live. A tipping point is reached, and that’s that.

So I’ve had a period of questioning myself: how am I? Am I doing okay? Are things still under control like they were before I heard the news? I run through my “on the edge” symptom check but there are no tell tales signs; maybe I’m a bit more shaky in my left hand, maybe I’m a touch more anxious, a bit more fixated on anything changing. But after giving myself a few days to take the impact of the news, attend the funeral and debrief, things are okay. I’ve gotten through a potential trigger okay.

Which is bully for me! For the family, the friends grieving now and for a good while to come, where is the light? Where are they to look to find something good out of this? One place that I’ve found comfort is to see the men and boys in my old friends life passing the okay sign around on Facebook in a campaign to vow to listen to each other, to talk about mental illness and suicide, and to try to prevent this from happening again. This has to be one of the best ways to commemorate a death by suicide; a pledge to fight it’s influence and talk about it openly.

I know that its difficult for people to talk about this awful thing that’s happening in their heads. And it’s hard for others to hear what they have to say about it! But we have to be brave; be strong and talk about it. Bringing it out into the daylight is the only way to make it less scary, and to take away its power over us. Talk, talk, talk, talk, talk. And remember the souls who couldn’t fight it’s power anymore. It wasn’t their fault, they didn’t mean it or even want it, but they were overpowered. Remember that. They were fighting the battle and lost, through no fault of their own. Remember them. Talk about them. Share their story. There is someone out there that you can help if you talk about suicide.

Check out Conversations Matter for videos, fact sheets and resources for talking about suicide.

Use one of the umpteen helpline services that are available in this country. You don’t have to have a mental illness to call. You can call to talk about a friend, someone you knew who died, or just to learn more about mental health. So many people are reluctant to call, so go ahead and buck the trend! Call! Ask questions, learn things, talk to someone on the end of the line anonymously before you talk to a friend. Whatever you do, do something to improve awareness of suicide and prevent it occurring again.

beyondblue 1300 22 4636

SANE 1800 18 7263

Lifeline 13 11 14 (crisis support and suicide prevention service)

Suicide Call Back Service 1300 659 467 (free service for people who are suicidal, caring for someone who is suicidal, bereaved by suicide)

Kids Help Line 1800 55 1800 (5 to 25 years old)

Victorian State Suicide Help Line 1300 651 251

Mensline 1300 78 9978

Veterans and veterans families counselling service 1800 011 046

Qlife 1800 184 527 (lesbian, gay, bisexual, transgender and intersex communities)

Carers Australia 1800 242 636

Many more helpful phone numbers and web sites can be found at Mental Health Commission’s Get help page

I did a bad thing…

I did a bad thing.

I got sick, and then I started getting better, then I stopped. I didn’t get better. I just stopped.

I’m in illness limbo. I’m much better than I was when I was severely unwell, but much worse than I was “before”, before I ever got sick. Well okay, maybe not much worse, but worse. I’m not going forwards, I’m not going back. I’m not bad enough to complain to my doctors, but I’m not where I thought I’d be, back to “normal”.

It’s been a long time now since I got sick, and I’m definitely well over the acute phase of crippling anxiety, black depression and the odd weirdly happy and effective days of mania.

I was just commenting yesterday that I never have dysfunctional anxiety anymore; just regular, everyday person anxieties that are reasonable and well founded and manageable. But I was wrong. At that very moment it was sneaking up on me again and bam! it got me!! But only a bit dysfunctional. I don’t have the darkness and hopelessness of depression, just the sluggishness and lack of motivation and tiredness…but even that waxes and wanes giving me better days and worse days due to no particular reason. Mania continues to be a little brightness on the horizon that breaks through any residual depressive effects and gives me a little happy and useful and wish-I-was-like-this-all-the-time day or so, here or there!

I’m medicated like you wouldn’t believe, and a recent experiment my psychiatrist and I tried of reducing my meds has shown me very clearly that without these meds, I’d be right back in the thick of my acutely unwell stage!! It’s not like they aren’t working; they are, they really are! My moods have been a very difficult case to crack and it has taken 4 medications for mood and months to years of appointments to get on top of the main symptoms. And they work. I can, somewhat distantly now cos it’s been a while for some, remember how I was before and after starting each one, which may just be my saving grace down the track when I, like every bipolar patient, get to the stage where I think I might just be better off not taking my meds. One request of you, friend: don’t be the person who suggests I should go off my meds. The consequences of taking on that responsibility may well be more than you can bear. You take my life in your hands if you suggest any such thing. For all I complain about where I am, I always know very clearly that I would be so much worse off without my meds. No question. Ever. Life isn’t perfect but taking away the crutch holding me up isn’t going to help. So save it, keep it, sit on it, hold it in, swallow it; you are not helping anyone, almost ever, by making any such suggestion. You are warned.

But here we are. I’m not sick, but I’m not as well as I thought I’d be. As I hoped I’d be, planned I’d be, “knew” I’d be. Isn’t this the dilemma of every patient with a chronic illness? I go to the doctor with my illness, the doctor says okay I’ll treat your illness, I hear “I’ll get you back to normal”, and go on my way happily ever after. I think I’m presenting the doctor with a chest infection that he can fix, and then return me to my previous health. But this is not a curable disease. The treatment works, the doctor says I’ve treated your illness, I look forward to getting back to being me, my old self, and then, as the Goons would say…suddenly, nothing happened!! Yes the treatment worked. Yes the doctor has done his job. But this illness doesn’t go away. Because that’s not how it works. The illness stays. The treatment stays. The illness has just been put back to bed for a while. But there are some residual effects that haven’t been buried and they remain and irritate me. Because that’s how it works. I don’t know what it would take to get every last little bit of it under the surface…I don’t think I want to know because it either isn’t possible, or the trade off would be too severe.

I’m starting to think “normal” isn’t a reality that I’ll ever reach again. I’m starting to think that my life has been permanently changed. I’m starting to think I’m stuck here.

I don’t know.

All I know is I’m here, and everyone seems to want me to get fitter, healthier, stronger, slimmer or shall we shall less large (keeping it to reachable goals), more energetic, more involved in my own life, more something or other. And don’t mistake me, I want that too. I want it all. It’s just that I can’t see how. I can’t see how to get there. Some people say, well you made it this far through, I’m sure you can do it. But my little/big secret is, all I did so far was hang on. Through all of it, I didn’t really do anything that active; I just hung on. Now the goals require something more active and I don’t know if I can do it. I’m not sure that I can do what’s required. I guess that’s why I’ve stalled here. The next step possibly requires more than I can give.

Aaaaahhhh. Sigh. I did something bad. I stopped getting better. Can I start again?

The end

A medication order comes to the dispensary late in the day. It’s from the adult psychiatric ward, who only have an attending clinical pharmacist for half of the day, and a pager service for the rest of the day. Because the order is up to the 7th day and the bottom of the page is initialed by ward pharmacists from 3 different days that show they have reviewed the whole chart, it seems straight forward to supply with no need to page the busy ward pharmacist. Especially as the last initial was from the day prior. This shows me that all of the  work has been done to make sure the order is safe, appropriate, avoids their allergies, is monitored as necessary and is okay with all of the other medications. Not a lot of people see the work that pharmacists do to keep them safe while they’re in hospital, but those 2 letters at the bottom of the medication chart mean a great deal!

I go to dispense the medication in our software, and it comes up that the patient is in the oncology ward! Confusing, since the order clearly has the psych ward written on it. So I ask the oncology pharmacist and get a story like no other that I’ve heard yet!

This patient has met SCLC. That’s medical shorthand for advanced lung cancer that was possibly incurable from the the start, most likely caused by smoking, which has spread from the lungs throughout the body via the blood stream and deposited in the usual place that lung cancer goes to: the brain. Isn’t medical terminology amazing? 7 letters that tell me all of that!!

When a cancer spreads the medical term is that it metastasises. The cancer clumps that have spread away from the primary, or first discovered/diagnosed cancer are known as metastases, shortened to mets. This patient has brain mets. The cancer has spread from the lungs into the bloodstream and traveled around the body before settling in the brain and growing there. This is now a secondary cancer because it has come from the primary cancer. We can prove this by taking samples of both cancers; they will have the same histology or cell type, and the same structure and growth pattern. Each type of cancer has a typical pattern of where the mets will appear. Patients with lung cancer will be screened for brain mets. Breast cancer patients will be scanned for bone mets and etc.

I sometimes hear or read of people saying that a person has breast cancer and bone cancer and brain cancer, as though they were 3 different types. The odds of that are really absurb; it’s a once in a lifetime patient sort of odds. Much more likely, it’s breast cancer which has spread to the bone and then the brain. That’s nothing to do with the anything, just something that I’d like people to know.

SO getting back to the story! Our patient has advanced, likely to be life-ending lung cancer that has spread throughout the body and has established in the brain. At this point they cannot be cured of their cancer without very extensive surgery to remove the cancerous lung and brain tissue, and severe chemotherapy and radiation therapy…and even then it’s doubtful! And its a very high cost to pay, especially removing part or all of the lung/s and part of the brain!! Brain and lung surgery? And possible transplant to replace them? for no guarantee? It would be a very brave doctor to recommend that course of treament, unless the patient were very young and fit…which is unlikely given this cancer is caused by smoking.

So at this point we offer palliative care, or end-of-life care, or comfort care. Or try to.

Usually we try to get the patient back home with the appropriate supports of doctors visits to the home or at their usual clinic, nursing care in the home if the patient can’t do for themselves, plenty of medications and basically whatever it is that they’d most like to fill their final days or weeks or months with. If they can’t be sent home we at least give them a private room, unlimited family visits, their little dog/cat coming in, vases for flowers, unobtrusive nursing care and medications, comforting doctors rounds, limiting anything not fully essential like blood tests or blood pressure checks, and again, basically whatever they want that is feasible.

Once we had a wedding, in the patient’s garden around the side with the couples children and close family then day leave and permission for one alcoholic beverage. She died 3 days later at 40 something. Everyone cried about the wedding, either at it, or thinking about it, or seeing her come in from home in her wedding dress on oxygen holding her kids hands.

I’ve seen patients is deep distress changing completely when their little dog is brought in. They coo and talk to it, cuddle it, put their face next to it, and just relax so much. It’s such a tear jerking experience! The change in them, that peace, all that matters is they’ve seen their little dog and it’s going to be okay, and all is okay with the patient somehow.

But in this case, that isn’t going to be an option as such. In this unfortunate patient, the cancerous growth of the brain mets has set off a full blown psychosis! The pressure of  the extra growth onto the brain stretching the brain sac, the location of the mets pushing on certain areas of the brain, physical and chemical changes etc can cause different symptoms like confusion, delerium but I’ve never heard of this before. Think hallucinations, delusions, aggression and violence…such that the oncology ward wasn’t able to deal with the patient anymore and they’ve been sent to the psych ward! That’s not the place for comfort care, for a nice big room with flowers and family spending quality time at the end of life. Instead it’ll be sedation, anti-psychotics, possibly restraints, surrounded by other disturbed patients in an environment that’s hardly welcoming.

And that’s how little control we have over the end of our lives.

Medical conditions eventually get us all, one way or another. I think we should recognise that. We will all die of a medical condition, and can I add, or mental health condition. And we don’t have a lot of control over any of it!

Now it’s full psychosis as a result of lung cancer as a result of smoking.

It might be kidney failure and second daily dialysis as a result of diabetes as a result of a fatty diet.

It might be suicide as a result of desperation as a result of depression.

Where is the control?

So wouldn’t it be nice if we thought of them all the same?

I would love to live in a world where no one ever described death by suicide as selfish.

Because if we can call suicide selfish, what on earth would we call the death due to smoking or a bad diet?? We feel very emotional about the unfairness and randomness of cancer, but is that really in line with how we think about suicide? Depression can be very random and is never fair. It distresses us to see patients on dialysis and in the inevitable spiral to death that comes with kidney disease, but isn’t that just exactly how we could describe the progress of an unwell patient with insufficiently treated depression?

I’d prefer there be no blame on anyone.

As a fatty who is struggling to exercise and diet through her medication haze and bipolar up and down blips, am I really going to say I told you so to diabetes, high cholesterol, and all the consequences thereof, stroke, heart attack, high blood pressure, kidney failure to name a few?

As a depressive who has spent 3 years trying, trying, trying through all the low mood, low motivation, low energy, low self esteem, low interest, low care and everything that comes in that huge big black box, I certainly can never blame anyone who just couldn’t take it anymore, and doesn’t know how else to escape but through death.

The smoking one I’m still in debate with myself over. I guess because I’ve never smoked and I’ve never had to quit, I can much more easily see why it’s a bad idea. However, my judgement is reserved for those who didn’t know it was bad when they took up the habit. People who grew up in my era (can I call it an era yet?) know it’s bad, and took it up anywhere. But again, because my mind sees all angles, I realise that there could still be a lot of factors as to why they did take it up: parents who smoked, peer pressure left over from the 90s, depression/anxiety, and a bunch more. Point being, I don’t think you should smoke but I do know it can be incredibly hard to stop, just like the gym is something I should do and find hard to!

My aim for us all: let’s work together to realise that in the end, we quit, we exercise, we try, but that’s not a guarantee, just a higher likelihood of control.