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.

 

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Victory Part One

[Written 20th June 2015]

Victory is mine blog post

Okay that’s not going to be my title, way too grand and pompous for my usual style. But today was a victory and I want to talk about.

I was meant to restart work sometime last week. It was always a vague plan of sometime after the Queen’s birthday public holiday. From the time I took back my authorization to get a police check and stat dec to say that I wasn’t an awful criminal the suggestion was it would take the HR department about two weeks to prepare the contracts. Oh, and by the way, the hospital executive have just put a halt on recruitment until the end of the financial year! We may sneak in, we may not.

So it didn’t happen last week, and it wasn’t looking super likely for this week either. So my plan? Bike ride as much as possible until I go back to work! It is still amazing to me that I, in the dead of winter, in shall we say frigid conditions with rain and bleak outlooks and low teens temperatures, would be keen to get out there and get cold and exert effort! Crazy! Yet it turns out that my week is built around it! I would NEVER have thought that this would actually come to be in my life!

I mean, yeah, they said exercise was good for you and helped your mood and did wonders. I got started at the gym after moving back to Melbourne when I was beginning to put on weight in a vain attempt to keep that at bay. I did enjoy the classes, another women’s only special, and afterwards I loved that I’d been able to do it. My post-gym face made it into a couple of my ‘100 happy days’ posts. I made an effort to get to my classes after work, which was a tight squeeze, and then when I wasn’t working anymore I tried to get there and do the solos workouts my friendly coach had designed for me. But the cardio stuff sucked! I’ve always been good at weights and they are my preference. But right then, with the weight I’d put on and as the sedation overcame me, cardio was just a punishment! So I put the gym on hold, and it stayed there. My psychiatrist agreed that I shouldn’t be pushing myself with the gym and suggested walking each day.

Walking. Okay, seriously! I have a green, leafy park that I can get to, walking, in less than two minutes. It’s one of the awesome conveniences of where I live. Theoretically. There’s a beautiful walking loop made from perfectly poured, on camber concrete with an inner spongy lane perfect for running. It has marked distances and revolves around a pretty little lake with ducks and a foot bridge, a community exercise area always in use and a children’s playground. Perfect.

Two minutes to the park. Five minutes to the hospital, twelves minutes to the train station and supermarket. That’s my house.

But I don’t like walking anymore!

I used to walk up hill to the train station to get to work every day, from October 2013 to March 2014, and I just did it without thinking. Then I walked around the hospital all day often clocking up half my daily step count and a couple of kilometres. I’d often take a walk for 20 minutes under the Moreton Bay fig trees to chill out at lunchtime which was lovely, travelling from Commercial Road to Toorak Road and back, then walk back down the hill again to get home. My Fitbit got to 10,000 steps every single day and often quite a bit more. I was doing great physically and was in the shape of the last 10 years! I’d just spent more than 18 months up to August 2013 exercising and dieting my way to 78kg which was a 15kg effort that I was very proud of, and got me within a few kilos of my ideal weight! So I was enjoying my hard work.

But as I got sicker, my motivation and energy flagged and I started putting on some weight, and that morning uphill walk was taking me longer and was getting harder. I started to dread it! My breathing was way harder than before, my heart felt like it was about to hit the absolute red line or die altogether, my legs rubbed and chafed and turned to jelly mush, and I just didn’t want to do it anymore. Besides I had to conserve energy; I had the whole day still ahead of me!! I didn’t want to walk; I wanted to catch the bus. Once I did, there was no turning back. I would wait 15 minutes at the bus stop for a 7 minute bus ride that was full to overflowing where I sweated up a storm in the crush of body heat, rather than walk 10 minutes home, even though it was downhill. At that point, it didn’t matter whether it was uphill, downhill or neutral; I hated it!

I’m working on this. I wear shorts or leggings, I take my time, I breathe it out, I remember that my heart is actually a surprisingly resilient muscle and no one has ever yet died from it jumping through their throat into the open air and flying away! That last one is difficult and takes a lot of mantra-like chanting inside my brain! I will not die, I will not die, and I will not die.

We did an impromptu walk with friends a couple of months back. It was described as an easy walk, but that was their opinion not mine. They set a cracking pace over difficult terrain and I wished I was dead! Halfway through the caring mother figure asked me quite seriously if I was going to have a heart attack!! I was so red in the face I probably looked like I would in fact explode, I was dripping sweat, my feet and legs hurt…la, la, la; it wasn’t that much fun, apart from the scenery.

Cue the bicycle. It came to me, I now realise, at the perfect moment in my journey. I’d seen an ad for She Rides earlier and instantly dismissed it. The fact that when it came back around on Facebook, or email, or something else, I actually considered it, showed that I was in a place in my recovery where I was starting to open my very closed mind to the idea and possibility that starting gently into some exercise could really be something I could a) do, and b) maybe, somehow, I don’t know but people assure me I could, actually enjoy! So I tentatively put out some feelers. I’m not a committing person! I have to do a lot of thought before I jump in, and even then it’s more of a slow trip and fall that accidentally turns into a jump!

Ask my husband: we went out for 7 years before I “jumped” in! At least we got through the whole itch thing first. In that last year when it was blindingly apparent that of course we’d be together forever, and no sinister cosmic plan was floating through the universe waiting to hit us with its deadly and devastating bolts, or anything along that drastic and dramatic plane of thought, I gave my husband a model snail. I told him please wait, I’m getting there, I’m coming; it’s just taking me a while! That’s how I am, but I’m working on it. I can impulse buy now, not that I’m sure that’s a good thing! There are shops in Shepparton where I grew up probably sick of the sight of me, coming back for the third time to try on the same pair of shoes “just to see” if they were any different from every other time! Procrastination is what it’s really called, and it has gotten the upper hand of me in a lot of my life, but I’m working hard to crush it!

On Wednesday I got excited…

[Author’s note: written two weeks ago]

The last three weeks have been a bit tedious, and boring, and uninteresting, and flat, and sleepy, and just hard to enjoy!

On the 19th May, after 5 days in the manic sphere having a fabulous super productive and energetic time, I collapsed! Literally collapsed into bed, fell into a coma (*exaggeration*) and hardly got up for week (*not an exaggeration*)! I left the house 3 times – Thursday, Friday and Sunday. A friend’s birthday lunch, a mother’s club that I nearly cancelled on, and the gospel meeting. I showered once. It was rough!

The last week of May was slightly better, I got out of bed every day and left the house a couple more times. I did next to nothing but I ate most meals and had a couple of laughs.

The first week of June I had a couple of ordinary days, an intermediate day that I thought might crossover into mania but didn’t (thank goodness!! Can’t take another huge mood swing!), and a couple days that felt like regular good days 🙂 I’ve had a bit more energy and for the first time in three weeks I actually feel like I could hit the gym! I’m even almost excited to go; to run, and jump, and lift weights, and be part of my fitness group again. This is great!

I mean I felt like it, I didn’t actually go; but I felt like it. So that counts, right?

So Wednesday. June 4th. Not a great day; an intermediate day. I left the house because I had an appointment with my psychologist/counsellor. Probably wouldn’t have left it otherwise. Got up late, showered – sad that this is noteworthy! I started well with a good breakfast, then had another good breakfast, then a couple of mandarins and it was starting down a slippery slope of sour straps and peanut butter that luckily got interrupted cos I had to leave for my appointment!

Getting out of the house makes a HUGE difference to how much I eat. This is something to always keep in mind. Having something productive or useful or purposeful to do in the day significantly reduces how much I eat. Mainly because I’m distracted from sitting and staring at food, and actively doing something else like driving or catching public transport or using my brain!

So off I go to the psychologist. Trying to think of something to talk about, and coming up with nothing! Nothing had happened in the week since I saw her last; no improvement, no gains. My brain is not getting exercised and can’t think of anything that we can work on. Luckily, she is a psychologist and counsellor and her job is to know these things.

So we got chatting about the week that had been, and things that had happened and how everything was going. Then about strategies to improve the days, to give me something purposeful to achieve, to help fill in the gaping hours. And it kick-started something in my brain. It jogged my memory again. It gave me flash backs of useful and interesting things that I had done, and plans I had had for other things that I hadn’t done yet, and which my mind hadn’t been able to access for the last few weeks.

It is amazing and fascinating that in down times I really can’t use my brain as well as in better times. There’s actually evidence to show that the pathways to creative and imaginative parts of the brain are diminished and much harder to get to when a person is in the midst of depression. The absolute opposite is the case with mania; the pathways are much easier to access and the creative brain is firing on all cylinders.

I started to get excited. I remembered my knitting, my drawing, my bird watching, my photography. I remembered how I’d been planning to join a choir, that there were pharmacy continuing education sessions I could go to during the day, that I had meant to go back to the zoo, to do a bush walk, have a bike ride, visit some gardens. It came to mind that I could call the pharmacy counselling number and have a chat to another pharmacist about where I’m up to and how I can proceed from here, that I could visit friends, finish my half-done quilt, sort some boxes from the shed, get involved in life again.

And I guess that’s why they pay psychologists the big bucks. This is why I definitely need my psychologist sessions. Just someone professional looking at how I’m going and offering a different perspective and some guidance on how to proceed.

I went into this session unable to think of anything to talk about, to discuss, and unable to see how I could be helped.

I came out of the session inspired with a long list of things that I could do if I wanted; interests re-remembered, hobbies re-energised and feeling more optimistic about the days ahead of me. I had things I could do, I had reason to get up in the morning, I had plans for spending the days. I had hopes and ideas and inspiration.

For that, I owe great thanks to my lovely psychologist. What would I do without her?

“Are you…?”

Today it happened.

Someone patted my stomach, raised their eyebrows, smiled suggestively and asked, “so, are you…?”

“Oh no”, I laughed, “it’s all fat”.

“Oh, too bad, I had my fingers crossed”.

Well it is too bad, too bad that I give the impression of a fairly pregnant lady! My husband told me so last week, and I know it. I’ve known it for a while.

In my life up until a few years ago any weight I put on was fairly evenly distributed over my body so that I never got the fat belly look, but maybe I’ve filled up all the other spaces because now it seems to go onto my belly really easily!

As a kid I could always eat as much as I liked and not put on weight. As a teenager and adult it took me a while to work out that this system no longer worked!

I’ve put on a lot of weight over the last while. There’s a few factors to blame but of course at the end of the day the only real cause to be found is food entering the body in excessive quantities. Something that I’m good at!

I love food. I’ve always loved food. I love looking at food, touching food, eating food. I love buying food, cooking food and I sometimes dream about food! I am a food person. A foodie.

I’ve always been this way, apparently right back to when I was a toddler and was easy to feed because I just liked food. As a little prep student, when the other kids were ordering 2 or 3 party pies for lunch on lunch order days (Mondays and Thursdays) I would order two full size pies and eat the lot.

But it’s more than just liking to eat and liking food.

I have a bit of a ‘thing’ about food. When we were little there was no “junk food” in our house. No lollies, chips, soft drinks, salty sugary high energy low nutrition lovely tasty food. We would have takeaway sometimes, KFC, charcoal chicken, fish and chips on a Friday night. I loved takeaway nights and hoed right in with gusto! Had to make the most of it.

We would go to the local agricultural show every year and get a show bag, the “quality” Search and Rescue for-a-good-cause type not the junky ones with lots of lollies. Still they had a few lollies and usually a Whiz Fizz. I would go home and immediately eat everything out of my bag til it was all gone.

I remember a school friend’s 7th birthday party clearly. There were Cheezels, chips, snakes and sausage rolls. I always got right in close by the table and ate as much as I could; you never know when you’re going to see Cheezels and snakes again! So I would eat mouthful after mouthful enjoying the luxury treats. Then a game was organised and everyone ran off to the next room to start it; but I stayed to cram in a few more mouthfuls so I made the most of it!

I  remember eating calf milk powder because it tasted like skim milk powder. I would take a cup full into the garden and eat it dry by the teaspoon, so it would form thick slabs on the roof of my mouth.

Then there’s my Uncle’s 30th birthday. Instead of hanging out with my cousins I hung out by the table glorying in the rare and amazing foods: cheese, fruits, lollies, chips, and one fabulous honeycomb! I stayed and ate and ate and ate. That night we drove back to the hotel where we were staying and on the way I started to have stomach pains. Stabbing, burning, hard hot pains. I had gorged myself til my stomach was literally stretching to bursting point! I rolled in agony for a couple of hours before enough food passed out of my belly to release the pressure and ease the pain. Not a great moment.

I remember stealing sweets at home on the occasion that they made in into the house. The art of finding the hidden stash, removing some of the loot and rearranging the rest of the food (dehydrated apples or apricots, fruit cakes, fruit chew bars, chocolate etc) to look as though nothing has been removed.

I remember eating frozen pastry sheets, sneaking cups of ice cream after work and eating them with a teaspoon; I loved teaspoons! Making soy and sweet chilli stir fries after work. Eating cups of cranberries and white choc chips.

Next vivid food memory: moving out of home. Getting my licence, a car and living a couple of minutes from the local supermarket. A quick drive, park and browse. I had my own money from scholarships and school holiday work and a whole supermarket. I developed some favourites and tried some new things. Twiggy sticks, brie, Shapes, Cadbury chocolate, sour straps, other lollies, chocolates, chips and drinks. And I could buy what I liked! No rules! No forbidden food. I could just go nuts!!

One favourite was Cadbury’s Peppermint Chip flavour, sadly no longer available. A fabulous combination of milky sweet chocolate with the crisp menthol tang in crunchy mini-chips. Ahhh. I would smuggle these past my chef of a Grandma and eat them in secret seclusion in my room where no one knew and no one could tell me no. Then, when tea was announced, I of course was already full but made myself eat the meal so I wouldn’t have to tell anyone that I’d already eaten, and also as a punishment for eating “naughty” food. A weird system.

So it’s been a battle of the “junk food” ever since. I read this week that 1 million Australians have an eating disorder. And I don’t think it’s only anorexia and bulimia; I think there are many over-eating disorders as well. But over-eating disorders are easily blamed on a person, calling them lazy or greedy. I’m not saying that I have an eating disorder, but I do have a certain amount of disordered thinking and eating  about food.

So that’s one factor, kind of a big one.

Second: anxiety/depression/bipolar. Lack of motivation, feeling down, feeling strung out, no energy, unable to enjoy anything. Comfort eating, eating to get energy, binge eating so that my body feels as bad as my mind, eating to enjoy at least one thing when I can’t get enjoyment out of anything. Many reasons and combined with absolutely no motivation to improve myself or keep fit at the time, make a fateful combination. Plus boredom eating.

So here I am.

9 months after I finished a 10kg weight loss over 12 months to get down to 76.7kg, my lowest weight since high school, I have put on 16kg!! I have a weekly weigh-in which is a non-negotiable thing; the theory being that at least I keep track of my weight. Yeah, that’s working! But it all happened pretty fast, with the binge eating, the medicines and the sitting/laying around the house.

So my current weight is 93.2kg. The heaviest I’ve ever been. Actually, not true – the heaviest I’ve ever been was last week, 93.75kg. Yes, I have lost 500g over the last week. It’s a good start. And I’m determined: right now I have energy, motiviation, I can get up in the morning and so it’s on!! Watching my food and exercising, here we go!!

I’ve always loved using the MyFitnessPal calorie counter. It used to work really well for me. It was a challenge, and I loved it. But now, as soon as I see the calories go into the red I just bust and go nuts! It’s not giving me the right psychology right now.

I used to love training myself. I did a three month Madison magazine fitness program where I watched my food, did 3 couch-to-5km training sessions per week, 3 strength training exercises per week and 3 stretch sessions per week. I lost weight, learned to jog and run and it was awesome. But now I just don’t have the motivation and energy. So now I need the gym – and I have an awesome trainer and a great bunch of girls at Urban Fitness doing the fab Fit Chicks program. I’ve just gotta get myself up and going and get there and it’s all on!

Third: medication. Both my antidepressant and mood stabilisers change my hunger sensors so that half an hour after a meal I can be salivating and my stomach can be rumbling even though I KNOW that I’m not hungry. Annoying, but something I can manage if I have the motivation and mental energy. Which I do now, but didn’t before.

So despite being confused for being halfway through a pregnancy, I’m pretty positive. In fact, I’m gunna go hit the gym now!! I’m psyched, I’m pumped and I love it!! I feel like a regular girl 🙂 I feel like I’m back to my old self 🙂 It’s awesome!!