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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Tired

Tired. Being tired. Feeling tired.

This is still the hardest thing of all for me to deal with. Especially so because I can’t really see that much of an end to it coming up with any haste.

Being or feeling tired, is pretty much the physical equal of being or feeling depressed, mentally. In fact I think they are different ends of the same condition. I’m sure that every depressed person feels tired; I’m not sure if every tired person, who is tired from some other cause that is ongoing and continuous, feels depressed but I’m guessing the percentage that do feel depressed is pretty high.

Most of the stereotypes are exactly the same.

You know, all the old favourites: “you don’t look tired”, “you don’t seem tired”, “I bet if you pushed yourself you would find that you’re not that tired”, “if you just tried a bit harder I’m sure you’d be fine”, “exercise is good for people when they’re feeling tired”, “if you were really tired you’d be sleeping instead of just laying around”, “are you eating properly because if you were I’m sure you’d find you weren’t so tired”, “are you sure you’re not just being lazy”, “are you sure you wouldn’t feel better if you did something for the day instead of sitting/lying there”, “are you sure quitting is good for you? If you pushed yourself I think you could keep going”, “everyone gets tired, you just have to push through it”.

Yawn! Surely it can't be time to get up! bed

Yawn! Surely it can’t be time to get up!

Really?! So let me get this straight. It’s not bad enough that I’m suffering with tiredness, but now you get to judge me for the affliction which I would never have wished for, and condemn me for however I somehow manage my way through it. Hmmm. Yep that sounds reasonable.

Rant over; that’s not what this is about. But I will make a side point here before we move one. Every single time that you want to ask someone a question that subtly suggests they are being useless and not helping themselves, think about this.

If that person had cancer and was suffering from whatever-it-is, in this case let’s say tiredness since that’s the topic, would you still ask the question? Would you still hint that they could do better and be better?

If that fails, try, and I mean REALLY try, to empathise with the subject, in this case, let’s say me. How about, as a mental exrcise, you imagine you were me? You may be a friend who knows a little about me, family who knows a bit more about me, or a stranger unmet that knows only what’s written here…but try. And if you can’t imagine it, or have insufficient information to really get into my shoes, then maybe it would be appropriate for you to consider that you also have no right to comment.

And please don’t take this as a rudeness or a get-out-of-here sentence! It’s meant only as a demonstration because I’m certain that most people commenting on health and mental health these days are not the people who have an inside and intimate view of the various conditions that exist.

So; being tired.

Here is the 50 million dollar question: is it physical or mental?

Here is the 25 million dollar: does it matter?

And here’s the question that I want answered that I’m not sure there is even an answer to: what the ……. am I supposed to do about it??? Fill in the blank yourself.

I have no idea what to do about it. No clue.

Everyone else has a lot of ideas.

Who has the answer that is best for me?

So here’s my systematic approach.

Why am I tired?

First cab off the ranks: I have depression, bipolar depression that comes with lack of motivation, lack of energy, lack of stamina, lack of feeling. So there’s that.

Second idea: medications including quetiapine (Seroquel) which literally puts me to sleep at night and possible hangs over a bit the next day; lithium which is known to slow you down a bit, so there’s a bit more.

Third thing: I have underactive thyroid which was caused by lithium and we’re still working on getting the thyroxine (Oroxine) dose right. I started on half a tablet, now I’m on a full tablet of the lowest strength and we’re waiting the 6 weeks before we can take a blood test to check if we need to bump it up again. Also I’ve had iron deficiency anaemia over the last year and while my iron levels are finally okay, my iron stores are still low so I’m still getting that sorted out with iron tablets and I’m also enrolled in a clinical trial to help with iron levels. None of that helps.

Fourth: the weight gain thing. The last time I ran around and got excited about jumping up and down, I was 30kg lighter! Thirty kilograms. It should surprise no one that a person carrying a bag of 30kg moves slower than they used to! It’s logical maths.

So actually, when I see it all written out on paper in detail…I realise maybe I could be giving myself a break.

Hmm. That’s actually quite a lot of reasons to be going slow…maybe I need to go back to psychology basics and re-frame my life these days. Maybe what is desperately needed here is some of that self compassion that I blab about but forget to apply, and a new perspective.

The perspective that says, Danika, whatever you can get done today is excellent. Congratulate yourself for getting up out of bed, for having breakfast, for getting out of the house, for getting through a shift of work, for whatever activity you do.

Forget about wondering why you can’t this and that, why you used to be able to do this and can’t now, why it’s hard to get through what you want to get through.

Try being excited and satisfied and happy about whatever you can get done. Give yourself a break. Don’t just say it, give it! It’s not a theory, it needs to be a practice. Give yourself a break!

And remember that you have hope of improving in the future: the plan to eventually wean you off sleepy quetiapine, your intention to slow weight slowly but steadily, your commitment to your medication that should correct your thyroid function and anaemia.

RIght now, it doesn’t matter what the tiredness is; could be anything off the list. Just take each day as it comes, and try not to have excessive expectations of yourself in your current state. You aren’t last year, you aren’t later this year; you’re right now, so just handle what you can handle, and leave the rest to another day.

And seriously: take your own advice! Don’t just right these easy lines for someone else’s benefit; read them and believe them and check in on them again each day. Every day. I don’t want you getting into a state about this tiredness thing anymore; give yourself a break!