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.

 

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!