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!

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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.

 

Safety Net

I hope you don’t think this is me crying poor, because I know how lucky I am in so many respects. In fact, I often use the types of figures below to show my patients how financially lucky we are to be treated in the Australian healthcare system, and not in a user pays system like the United States of America.

We stay in a public hospital and never know anything about the $2000 per day that it costs the Government to enable you in that bed to have access to whatever you might require. You have blood test after blood test, and you don’t pay for it. Your meals come free, and you don’t have to pay the doctor, the nurse, the nurse’s aide, the ward clerk, the person who takes your blood, the physiotherapist, the occupational therapist, the social worker, the pharmacist and so on. You may have to pay a small fee for the podiatrist, and the TV, and your discharge medications when you leave.

When compared to the tens of thousands that Americans or their health insurance providers have to pay it’s nothing at all!

But at the end of the day, poor health does comes at a financial cost. That cost may not be anywhere near what it could be, and might not compare to someone else’s cost, but it’s a cost regardless and this is just my example.

I take 8 different oral medicines, be they tablets or capsules or dissolving tablets. I take all of these every day, and some of them a couple of times a day. I think I do an alright job of keeping up with it all, and I’m a pharmacist. I can tell you that my respect for patients who manage their own medications has sky rocketed this year!

An 80 year old lady tells me off that top of her head that she takes these 6 in the morning (and she names them by name!) and these two in the evening, and she is meant to take this one but she’s getting this side effect and so she talked to her doctor and now she only takes it every second day, and her insulin has just been changed and now it’s 8 units in the morning but if her blood sugar level is over 10 she takes 12 units, and if she has to go out in the morning she doesn’t take her fluid tablet til she gets back etc!

It’s exhausting to listen to, and I always congratulate them because they do an amazing job! With all of my medicine specific education I am still not doing as good a job as that! All the things that patients have said over the years are coming home to roost.

“I can’t tell you off the top of my head, but if I had my list I could tell you. You should be able to find my list in my history; I gave it to them in ED”

At which I inwardly groan, knowing that in 99 cases out of 100 the list will be nowhere to be found and no one will know anything about it, and the patient is now a useless reference, with their knowledge locked firmly in their brain, and no release key to be found. It’s so unfortunate. I recommend every patient to create their own medication list, or I do it for them when they are being discharged home but whoever borrows it first in the hospital seems to put it with the odd socks and off it goes into the ether.

So I’m always thrilled to have an A type personality carer who have neatly run off 10 copies of the medication list; one for every medical professional who asks for it! Of course I’m less thrilled when they start going all A type on me because Mother’s glucosamine is being given once a day instead of twice, and her cholesterol tablet is meant to be night not morning, and when will someone attend to her rash; it’s not itchy or sore but someone needs to do something about it, right now!

“I’m sorry, I just can’t seem to remember. If you tell me the names I’d remember. If I had the box in front of me I could tell you how I fill it, and I’d remember the tablets. If only I had my tablets with me!”

Another inward groan. This patient from home alone with no next of kin to go to the house and collect the box, so again, knowledge locked inside. And no I’m not going to sit beside you firing off common medication brands in the off chance that one will trigger a memory. I have better ways around that.

But I do then find myself unable to give a full list without at least once or ten times referring to my written list or to the dosette box I make up. It’s a hard job!

And that’s just managing the meds themselves. Then there’re the scripts, the doctors appointments, Medicare, PBS, etc.

So these are my figures. At the 12th October 2015 I had officially spent $1,526.13 on my medications. That’s 8 medications, every day, over the course of the calendar year since January 1st. It sure creeps up on you!

Any patient with a Medicare card and no concessions on 8 medications, or less or more depending on the actual cost of each script, this could apply to you.

It also applies if you are on a pension card, but because pension holders have their prescription costs capped at $6.10 (or whatever it is capped to in each calendar year) you are eligible for the safety net when you reach a certain NUMBER of prescriptions, rather than a certain cost. For example once you have had 62 scripts dispensed, then you’re eligible for the safety net.

Every year the government sets an amount of money which if you spend that amount of money on PBS prescriptions, you will be eligible for the safety net. For 2015 the amount of money is $1,453.90. If you spend this amount of money on your scripts between January and December, you are eliglible for the PBS Safety Net.

How do I know if I’m eligible? Simple mathematics, my friends. Which is simple if you go to the same pharmacy every time like a sensible person would, so that said pharmacy had all of your records and could give you the best care. However being young and mobile I have gone to pharmacies far and wide across the country. And now I have to track them all down! I did have some idea of this coming, so the good thing is I had receipts from every script and every pharmacy; now to track them down!

Macleod Pharmacy

Chemist Warehouse Box Hill

My Chemist Box Hill

Surrey Hills Chemmart

Pharmacy 517

Tathra Pharmacy

Chemist Warehouse Shepparton

Nunawading Amcal Pharmacy

Amcal Max Doncaster East

Seeto and Dodd Merimbula Pharmacy

Duh!!

Now I remember why I should always go out of my way to go to the same pharmacy every time!

Instead I chose convenience at the time, and now I’ll have to traipse all over the city, and do some interstate sweet talking to have stuff posted, to get everything together in one place.

Bring on Australia-wide electronic records where every script I have had dispensed is automatically recorded and when I reach the PBS safety net a card is automatically posted to me, and I get a SMS alerting me to my status and card number! Sounds much easier and less time consuming to me.

There are proper forms so that each time you get a script dispensed the safety net stick can be attached, and you gradually build up…but of course that was too logical for me this year as a newbie to the scheme as a patient. Next year I’ll be all over it!

So 1300 words so far, what’s the point of all this?

Well, the safety net does this. Instead of paying some amount of money up to the $37.70 capped price for each prescription that I get dispensed, I will now only pay up to $6.10, the pensioner price!

Can you imagine? The average cost of one of my scripts up til now has been between $15 to $25 usually, with some actually capped at $37.70. So already by living in this lovely nation I’ve been saved a fair bit of cost through this genius Pharmaceutical Benefits Scheme (PBS). And now I’ll be saved a heap more! And if I were already on the pensioner price and reached the safety net?? Zero dollars for the rest of the year for PBS items. I make this disclaimer because even on the safety net, if you are prescribed an item that isn’t covered then of course you still have to pay what anyone else pays.

So this is a major saving to the individual! And I’ve never been so excited about maths, as when I thought to myself that I might be close to the safety net, and found out that I was over!!

Of course now I have to go and line up at Medicare to get a refund for this difference…………………………………………………………………………………yeh.

But it’ll be worth it, won’t it? $6.10 for the rest of the year; I’m getting that tempting sensation to do what all the oldies do and queue down the street to get all of their scripts dispensed on December 31st! Will I, won’t I? We’ll have to wait and see. But the sales junkie inside of me is stirring…

Departure lounge

This week was always going to be a week of goodbyes.

After my sister’s wedding last week (photos to follow!!) my cousin, one of the bridesmaids, flew out to France for an open dated holiday in her favourite country on earth. Having been there before and having good French language skills, she is planning to spend this holiday off the beaten track. We’ll miss her at our weekly gathering point, Grandma’s fabulous Sunday lunch roast and dessert! More for us!

Then of course, my newlywed baby sister and her hubby are flying back to Latvia today! I say back because that’s where he was born and grew up. Their plan is to be there for 4 years because they are both planning to start and finish their undergraduate degrees there. So It’s a big goodbye!

I don’t think that any one of us has grasped it yet, especially Dad who wonders why everyone is asking him if he’s sad to see her go! Not much to wonder at, but he’s fixed himself in the mindset that its exciting and happy to see her marry her love and move off into their new life. We’ll see how long that lasts once she has actually gotten on the plane for 4 years!

Of course the two students may scrape together enough money to come back to Australia, and most of us are planning a visit at some point but it’s still a long time. Mum and Dad and her have been the only ones at home since my brother moved to Melbourne for uni 3.5 years ago, so I think they’ll really notice her absence around the house.

Then my teacher brother-in-law is flying to England for a year on Thursday! How’s that, sister and brother-in-law, plus brother-in-law, flying out in the same week! It makes more sense when you know that the school year starts on the 1st September across the UK and Europe. So for a teacher, and two students, it makes sense to move with a few weeks grace to get settled into accommodation etc. A year isn’t so bad, there’s an end point to look forward to. But it’s so hard to imagine his Mum and Dad without him. He’s also the youngest and it’s been the three of them since his older brother moved away to do his apprenticeship YEARS ago. Not sure how many, but it could be eight or so years. They’ll definitely be looking for him around the house!

So those are the scheduled departures. We’ve had the goodbye parties, given them advice, wished them farewell. Everything according to plan and tradition, and everyone has had their part in it.

I want to add one more departure to the list.

This was not a scheduled departure. There was no celebration beforehand where people got together with the person leaving and shook their hand and talked and laughed and got their fill of the person departing that would tide them over til they next met. No advice was given about the next step of the journey about to be traveled by the departing and how to traverse it.

I think that most people involved felt that this was a tragic departure, in the literary sense that tragic means inevitable.

I want to wish my own farewell to RT who departed his life this week. You know when someone starts a sentence and they haven’t finished yet, in fact they’re only in the middle but you know the end is going to be something you don’t like? That’s how I heard about it. There is no other way to hear it, other than someone telling you but the hearing of it is never easy.

Many months of a terrible depression preceded this departure, I heard. A mighty, mighty battle has taken place. That battle involved good friends doing their best, multiple inpatient psychiatric admissions, previous suicide attempts, medications, and more that I don’t know about.

In fact I don’t know this person, only in passing. I would recognise him on the street, we’ve maybe exchanged a dozen words in total in our lifetimes. Every year while I was growing up we would spend 3 Saturdays in October at a farm where our annual Christian convention was held, getting it all ready. Our family was always there, he and his wife were always there. They were the cool, young couple that girls growing up through their teens can admire. That was the full extent of “knowing” him.

But there is this phenomenon I’ve heard spoken about where people can experience grief for someone they don’t know, or have barely met, or celebrities etc that is disproportionate to their relationship with that person. Sometimes it can be as profound and take as emotional a toll as the death of a family member. Like when the news of Elvis having left the building descended on the world. Tears and sobbing from people who “knew” him from a concert, a tape, magazines. It’s valid.

I don’t think that’s what is happening here. I think what is happening is several months ago a mutual acquaintance described to me the suffering this person was experiencing as a result of depression. And it resonated with me very strongly because of my experience with depression. I had amazing support and all the help that I could possible require and there were days when I didn’t think I could survive.

As far as I heard, this person had no one at home, some friends around town and family nowhere near by. I could totally connect with his deep need for support and love and care, and the absence of these needs being met. No amount of psychiatric care can compensate for having a partner, family member, very close friend who “gets” you, who understands your suffering, who can be there for you to help you keep safe, who feeds you with love and care and hope, and reminds you again and again that you can fight this war to a victory and they will help you all the way.

His story just made me want to reach out and say, I feel for you, I’ve been where you’ve been and I know how awful and hard and dark and hopeless it is, and I want you to know that I came through and it is worth the fight. Or something like that.

That’s what I wanted to say. But after his wife left, his whole world crumbled, he had nothing to live for on this earth. Because I think kind honesty is the best way to support someone, I don’t know that I would have been able to say convincingly that it’s all worth it in the end, keep fighting, one day this will be all behind you and be a distant bad dream and you’ll be glad that you fought and won.

When you have nothing to live for on earth, it’s a very hard situation. I had everything to live for, and it was a hard, uphill, difficult road, and still may be in the future. But with nothing to live for, why would you try? Why would you fight for, scrabble for grip to, desperately cling to, and give your all to hang onto life? What for? Giving everything to hold onto life that doesn’t feel worth living, that holds searing pain, awful agony, sorrow, struggle, being alone, without love etc. All that terribly difficult effort while drowning in molasses, and what for? That’s what being suicidal is like.

And so he left us. It was inevitable. It’s sad, because nothing more could be done to hold him here on earth, because he couldn’t find enough to hold him to life. But I strongly feel that now he has peace and rest from so much awfulness. And how blissful will that peace and rest be, after so much difficulty on earth.

I have more thing to say. I believe in God, in Jesus, in eternal life. I’ll write about this point more one day. God’s commandments in the Old Testament were, thou shalt not kill. And I think that would have included ourselves. But the New Testament came in Jesus who has showed his great love and mercy. I believe that although we would want to help someone not to end their ow life, when someone is hurting so much that they can’t handle it anymore, Jesus understands and forgives. He knows what we have gone through and why we have reached such a point of desperation. He offers his help and grace in our lifetime, which is promised to be sufficient for us, but in our agony we can’t see much beyond our hurting self.

I feel that our mental health and our spiritual health are two disparate things. But they get confused. We don’t confuse our physical health with religion. We don’t expect our faith to help our gout. But our mental health has foggier borders. Our religion can be a help to us in all situations, but it’s not a cure for any illness, and depression isn’t a religious issue; it’s a medical issue.

I say this just to make the point that when someone we know hits the threshold of what they can possibly bear and can no longer suffer their daily life, let’s recognise that they have succumbed to a medical condition that was unable to be sufficiently treated with the medications and therapy that we have available these days. Let us never consider that their faith wasn’t enough, or they lost their religion, or they somehow should have found a way to survive. Suicide isn’t a comment on the sufferers ability, but the disease’s severity.

Farewell, fierce fighter. I recognise how much you fought, and I’m sorry that the disease was too strong for you. You will be missed. But I will remember your story. I won’t forget your bravery.

To all of you in this post, til we meet again.