Canberra Days 57 to 63

[Day 46 OR Day 57 – Monday November 7th to Day 52 OR 63 – Sunday November 13th]

…okay I’m calling it, Day 57 to 63…our time here won’t be shorter here minus the NZ trip…you can’t take back days, so there we have it

To kept this moving, and because my week was pretty uneventful anyway, I’m going to give you another ‘one week snapshot’ and then we’ll be approaching up to date. Not my original plan, but rolling with the punches, and here we go!

Monday November 7th – first day home from holidays, a day spent processing holiday photos and cross checking them with my new bird book, doing a couple of loads of washing and not much else, feeling a bit dull and flat and tired. Then to get me going hubby suggested an after work bike ride around the city: ANU, Commonwealth Park, the lake, the Carillon, defense department, Lonsdale street. I believe this had the secondary purpose of making me change my front bike tube already from before we went on holidays! I just lost confidence that I could still do it so I put off doing it, missing out on some ride opportunities because of this, but as soon as I started there it was! Back again! I’m really down on myself lately; I’ve got to stop! Then tea at the food truck park from ’10 inch custom pizzeria’. Watching the skilled girl flipping dough into bases was lots of fun! Haloumi and potato wood fired pizza; winning! And rolling home again feeling excellent.

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Tuesday November 8th – a new friend kindly invited me out to morning tea at her friend’s house out at Bungendore. I arrived to a table set up down the back garden under fruit trees with chocolate cake and fizzy drink; so lovely! Got a cuddle with another friend’s little bubba who is growing fast and just adorable, and a lovely few hours chatting and getting to know the other friends. Then a drive around town taking in all the historic buildings, an awesome hot dog and the drive home. I discovered Sparrow Hill and Kowen Park for future birding, photographed the awesome Dickson street art and then home for a well deserved, and very satisfying nap. A load of washing and that’s a pretty good day.

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Wednesday November 9th – not much of anything today. A load of washing, lots of sitting on the couch, lots of rain and this fleeting rainbow as seen from my couch. Bit of a blergh day. I did get my scripts dispensed and my awful tax debt sorted with my accountant…no wonder I’m flat! So it was good that hubby called at lunchtime for me to ride down to Dickson and meet him for lunch at Alara’s turkish place. At least that got me kickstarted.

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Thursday November 10th – I took a while to get going today again. I had my plan of what to do but just couldn’t really get started. Instead of riding out to Mount Majura as planned I drove, and actually I was pretty glad cos I wouldn’t have done half as much walking if I’d been thinking about the ride home. So a late afternoon walk around Mount Majura from the Federal Highway entry birding which was interesting mostly for one fact. A Brown Falcon was hovering overhead which was brilliant in itself because it was pretty low down and I got some fabulous photos! But this always upsets all the other birds. All the little birds had completely vanished, and the big birds were all making an absolute fuss and racket! What was particularly fascinating was the behaviour of the ravens. There were between 15 and 20 ravens in the air also hovering, spaced evenly over the whole area that the falcon would be interested in and it was like they were creating a blanket of protection to prevent the falcon from getting down and attacking other birds. This was so interesting, I’ve never seen such teamwork from ravens before. Anytime the falcon got too near one of the hovering ravens there would be a scuffle and the falcon would move on. I didn’t watch the falcon the whole time, but I don’t think in two hours that it got down to the ground. Once I got further up the hill away from the falcon’s area there was a sudden explosion of little birds which was excellent. I’m really pleased that I got myself out to do this walk. Apart from all this the bush flowers and butterflies and dragonflies were also excellent.

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One Brown Falcon soaring above Mount Majura and every other bird goes crazy!

Friday November 11th – Remembrance Day at the National War Memorial. What can I say? I am so glad that I attended! I rode down on my bike. I’m getting quite used to just jumping on my bike in whatever I happen to be wearing and going. Before I would procrastinate about having to change my clothes, and maybe take a nicer change with me, and change again…and of course I never got started. But a different mindset about just going regardless makes it much easier to get out the bike and down a flight of stairs! Oy the stairs! Anyway, at least its only one flight. You have to book to attend Remembrance Day. You don’t have to pay, just book, and I can see why; it’s one classy event! From the Army, Navy and Air Force representatives marching onto the parade ground, to the Royal Military College (RMC) Duntroon band playing absolutely beautifully, to the Australian Rugby Choir of veterans singing so wonderfullly, to that chilling minute of silence of a few hundred people, to the traditions of formal arrival of the Prime Minister and Govenor General and partner in town cars, to the outstanding speech given by Beyond Blue ambassador Jeff Kennett on veterans mental health and our responsibility to care for them once they are home, to the laying of wreaths by all the embassies…wow, what an hour and a half!! Just fabulous. The hymns played by the band…there were 5 that I recognised and weren’t they played to perfection?! I’m going to hear the band again in December, and I’m very excited! On another note, did you know that I do a weekly weigh in? And somehow despite all that we ate and drank in New Zealand…I lost a tiny bit of weight. It’s nothing conclusive, but still. Every little win is something. Another win was going laptop shopping and buying a laptop after only an hour of so of looking! MAJOR win, I hate looking at specs! Despite shopping at JB, we had an excellent saleman who was super helpful. I ended up getting a super dooper deal buying the last computer in my model, and YAY! I finally have a laptop that can connect to the internet, can process photos without dying, has a CD drive and once we get the extra storage, doesn’t flash ‘no more storage’ every time I try to upload photos! I’m really happy. I got my handbag repaired at the same time, had yummy tacos for dinner. And had a catch after NZ chat with grandma. What a day!

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The Navy, Army and Air Force backed up by the Royal Military College Duntroon band and the Australian Rugby Choir

Saturday November 12th – A big sleep in and slow day for both of us, hubby a bit under the weather and me the usual. Not a very eventful day, we canned our plans cos we just didn’t feel up for anything, not even bike riding or birding! Feeling that the day had been too sluggish hubby got a burst of energy to do the vacuuming, clean up the kitchen, do some washing and get some groceries in the late afternoon. We had Japanese for dinner at Bon Kura in Dickson with rainbow rolls which was excellent!

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Sunday November 13th – hubby under the weather again so had to cancel our lunch plans which was a big shame! As always a beautiful drive down south for fellowship. So Macca’s for lunch as a poor substitute. Afternoon naps all round, and not much more to it than that!

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Actually, that was pretty eventful! I’ve gotta stop telling myself that I am less, I do less, I’m worth less because I don’t work, I don’t volunteer, and I do different stuff to what other people are doing. Do I sometimes go back to bed at 11am? Yes. Do I sometimes lie in all morning? Yes. But do I always try to make my day something new and special? Yes. Do I nap every day? Yep, you betcha! But I’m doing my best to live the best life that I can right now and I am making gains in physical stamina and mental strength. You probably know all this without me having to explain it. But it seems that I need to explain it to myself rather often, so it may as well be written down for posterity!

Canberra Day Twenty Four

Tuesday 4th October, 2016

Aaahh! Another satisfying day. A bit of a different day today. I wanted to do the early bird walk around Floriade with the Heart Foundation. It’s a free thing where you get early entry into Floriade at 8am for a group brisk walk around the gardens while they’re free of all the other tourists. Photos optional, to be taken after the walk; it’s meant to be a heart healthy exercise not just gawping. The weather was meant to be windy but dry so it seemed like a good plan. I’m trying to get back into my routine of early morning starts so this was going to be good. I just forgot to plan for it! No alarm, no wakey wakey! Luckily hubby got back from his 5am bike ride in time to wake me up, but obviously you need to get there early because when I turned up at 8.02am there was no sign of them!

Hubby had said go for a walk anyway, good plan, but it was feeling very early to me so instead I headed home and went back to bed for a couple of hours. Felt brilliant when I woke up! So off I went to the other walk that I’ve had in the back of my mind for a week or so: Mulligan’s Flat. A very deceptive name; it’s not very flat and no one seems to know exactly who Mulligan is! But anyway, they have a fabulous nature reserve, some of it contained in kangaroo fencing and so I’d planned to have a look around. I wanted to do a walk for myself and to please hubby, and I wanted to see some exciting birds, but I was feeling sluggish. But after 500m or so I perked up when I entered the gate and picked up my bird walk map from the mailbox and off I went. I did realise it was 6km from the map, and didn’t really think I’d do it all, but I did! It turned out that it was a loop so after a certain point you kind of have to keep on going! I was dressed for it which helped, and the birds were fantastic! And the echidnas, and the kangaroos, and the landscapes, and the numbered points along the track describing different birds and habitats and interesting facts! All of that kept me going but still it was 4.5hours later when I stumbled back to the car!! Far out, that has to be a record!! I don’t think I’ll be able to move tomorrow! But it’s all very exciting because the last time hubby and I inadvertently did 7km it was very difficult. Of course at different points I wanted to sit down, stop for a bit etc but I got through it well, the incessant wind, the rain showers becoming plain rain at the end, the huge big male red kangaroo standing guard, and the flooded pathways requiring shoes and socks to come off and bare feet to tackle the inundated mud, grass, gravel paths under an ankle to mid calf height of water. I did it all! I really am going well, and its so satisfying!!!

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Today I got 3 lifers [5th October: correction 4 maybe 5 lifers!!!] (birds that I’ve never seen before in my life)!!! Rufous Whistler, Superb Parrot, Speckled Warbler!!! Amazing! This is what I hoped for when we came to Canberra; new species of birds in new types of habitat. And I’m getting it, fantastic! I realise that this may not be half as interesting to you as it is for me, but try to supplement whatever excites you in place of my birds.

Then I went and got a large Coke and slurped the whole thing, went back to my current house and after trying to remain awake, gave up and went and had another nap before dinner. A delicious dinner of chicken parmas with mash and vegies, looking through my 700 photos of the day and finally this! After midnight. How’s tomorrow’s early bird walk looking?

Canberra Day Seventeen

Tuesday, 27th September, 2016

A bit of a nothing day really. Woke late, didn’t stay up long before going back to bed for a midday nap. Lunch was drive through, afternoon snack was drive through, liquid of the day was lemonade; not a high moment. Did not a lot of anything until I finally got myself out of the house to do some exploring/bird watching in the beautiful sunshine. Had to do something or it’d feel like a total waste of the day! I’ve always got a list of what to do next, and this one was very local which helped. A nice walk through the Goorooyarroo reserve turned a bit annoying when I was harassed by magpies for the first time in a long time! So harassed that I changed my entire route home to avoid them; they just wouldn’t give up! I can’t help that they built their nest right next to the walking track when they have a nature reserve that goes for literally miles! Took a gazillion photos and got two birds that I’ve never seen before!! YAY! And countless kangaroos, and a swamp wallaby, and a few rabbits. Nature reserve indeed. I ended up taking the route less travelled tracking down a bird call, and ended up making life hard for myself by having to haul myself up an enormous hill. I feel like this is some kind of metaphor, me taking 10 times longer than it should take to get anywhere because of having to drag myself uphill! So it’s my photo of the day.img_6469

The day actually got better and better from then on. Hubby came home and we had one of the best nights together that we’ve had in ages! Just good fun and easy company doing the groceries then having dinner out to fill his laksa craving, then a good honest chat about a few things that have been getting fudged about or glazed over or beaten around in the bush about. It’s given me inspiration to be more upfront in my relationship about the things that I’m struggling with, instead of hiding them away. I always think I’m a stigma fighter, but here I am encouraging stigma by hiding what is plainly obvious. I have issues with food these days. I mean, you don’t get to be my size on Vegemite sandwiches! But I try to squirrel away the fact of what I’m actually eating, as though there is any point to that. But it takes a hero to help you come out of yourself enough to be able to admit what you most dislike about yourself. I’m a lucky lucky woman to have just such a hero!!

Canberra Day Eighteen

Wednesday 28th September, 2016….yesterday still to come.

Well this is all out of order but I’m struggling a bit to keep things together. I took my tablets, and went to bed by 10pm last night to give myself the best chance for today. Slept okay I think, hard to remember, thought I was too drowsy and hungover when hubby was going off to work and tried to psych myself up, but he was actually getting up for his 5.30am morning bike ride!! So…back to sleep, and it’s always a struggle waking up from that second morning sleep. When my 9am alarm went off I just couldn’t feel like it was time for the day, and rolled over. Actually can’t remember now what time it was that I got up, somewhere around 10 or 10.30am. Had brekky around 11.30am, hubby reminded me to have lunch around 2 so at 2.30pm I finally got started on that.

Hubby is being my hero, yesterday and today. Not that he isn’t always; he is. But I really need a helper right now, and he’s being that. The photo of the day is his reminder to me of what I could eat for lunch. I have NO imagination for lunch, I’ve always eaten leftovers and when there aren’t any leftovers, I just stare at the pantry, in the fridge and I can’t think! So I default to drive-through which obviously isn’t ideal, but it’s so close to home, a quick drive away. You may have noticed that weight is a bit of an issue for me. Speaking mildly. It’s become a bit of a thing though, buying drive-through, and even when I don’t really want it, that’s what I do because I know what’s there, and it’s always there, and it’s no bother, and it’s just easy and doesn’t require thought or planning. Sad, you probably think. So do I, often. The rest of the time I’m just pleased that that’s lunch sorted for another day. Plus it tastes good sometimes; not all the time.

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I’m sure that hubby thinks its sad too, so I hide it. That’s become a thing, too. Not quite admitting to what I’ve eaten during the day. Burying the evidence at the bottom of the rubbish bin, or in the bin bag that’s on my side of the bed and only taking it out when I’m taking the bins out to the road, or worst comes the worst putting it in someone else’s bins. And that is not the way to have an honest relationship, which I’ve surprisingly taken a long time to figure out! It just puts up a little wall, stone by stone until you realise that there’s a barrier in the way of the two of you really connecting. Somehow it took an honest conversation last night about me hiding my food habits to start taking down some stones and building a bridge. It’s horrible to think we would have something between us! I’ve hated it lately. We have always been best friends and partners with no lies, no hiding, no buried pasts, full openness and honesty; and this is no time to change any of that!!! It’s hard enough keeping an equal relationship with mental illness on one side. It wasn’t intentional; I was doing the self-protection thing. Which does boil down more or less to selfishness, really. Where to avoid an uncomfortable discussion of my obesity, and eating food that can only contribute to more weight gain, and spending money of unhealthy food and so on, I’d hide anything to do with it: receipts, food scraps and packaging, and even pay cash so it doesn’t show on our credit card statement! It’s all become a sad rigmarole, embarrassing, and many other things; I’m sure you can fill in some of gaps.

But, we’ve opened the door, so here’s the new thing: planned lunches. So far today, so good. A nice toasted sandwich with prosciutto, cheese and tomato. Yum! I’ve got pies to cook with frozen veg, some bacon and cheese topped rolls, and a bit more confidence that I can do this! I can eat regular lunches like regular people and go back to the times before when the day manager at KFC knew me and greeted me with a smile every time I drove through, and had a joke with me! She’s a really lovely girl, is it beyond tragic to say I miss her? So much for new city, new habits!!

Well, that was a lot of spewing of internal bile that I hadn’t really planned on sharing today! But there we are.

All I can say about today is my planned ride and bird watching didn’t eventuate. Owing to the fact that it took me 20 minutes and a few sit downs to get dressed for the ride after a phone call to hubby for an inspirational speech, and after procrastinating all day! It didn’t seem like I could throw a leg over a bike! My main achievement was sitting around on the couch deleting a few MB of photos from my computer so I can fill it up again with the 800 or so photos that I took yesterday!!! Eventually I’m going to need my own server! And that was my day! So…not the greatest. Not one to remember. Quite frustrating really watching the brilliant sunshine and blue cloudless skies go by, knowing its the last fine day of the week! If only…but no, as hubby says, it wasn’t my day. Maybe tomorrow I’ll be firing on all cylinders just in time to watch an inch of rain pour down from the skies! Who knows? There doesn’t seem to be a rhyme or reason to me as to how I’m going to be each day. I am missing the routine of getting up early to take hubby to work, I think, but I doubt I’d actually have been up for it today and yesterday. I wasn’t up for it last Thursday; needed a sleep in. And he rode to work on Friday. Maybe this was coming all along and was just inevitable; after all I did surprisingly well for the first 10 days. It’s just annoying, because I can’t say one way or another. Am I just having a bad couple of days like anyone could? Or am I having a down swing with my moods that I should monitor and that might need some intervention? And on and on, my mind is just going round and round and round, on a slight downward trajectory. Things that don’t usually bother me are getting in my craw, so to speak. I’m thinking too much. A good nap has helped a bit, but in total that means that I slept from 10pm last night to 10am this morning, then for another 2 hours from 4.30 to 6.30pm. 14 hours a day isn’t really sustainable. I don’t know whether having a job would have helped or hindered today. Would having to get up have worked, or would it have been another sick day? I wouldn’t have been the best customer service! Enough! No more thinking for now. Off I go at snail’s pace to potter around about dinner. Hubby’s late, poor him. So here we go, off I go. Off I go…

Canberra Day Twelve

I had such a wonderful surprise on Tuesday! I was idly wandering around Facebook when I saw a post from some old friends that I grew up with from about 3 or 4 years old which showed their location as Canberra! I thought, really? So I messaged them and yep we had managed to coincide in a city that neither of us had really been to before! So we organised to catch up for dinner and it was the best night! All the years and events that have passed since I left home 10 years ago haven’t changed a thing and it was a fabulous evening of yummy Thai food and chatting about everything under the sun.

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So the cake, what’s that about? Well, while this family have been on Victorian school holidays visiting Canberra, the youngest girl had her birthday and this was the cake she had. It was huge, tall and sugary with the fakest colours available, a horror to some of the family who wouldn’t choose this kind of thing ordinarily, and only half eaten. They’re moving on Saturday and really can’t take the cake with them. So a condition of our catch up was coming back to the hotel to eat cake! Not the worst thing in the world hey…and the absolute delight of hubby who will eat anything colourful! Fruit loops, smartie smiley face cookies, sprinkles, cakes of exactly this description etc. It was delicious, but I didn’t get through it; turned out it was pretty sweet after all! But what a lovely way to end the day: old friends and familiar faces in an unfamiliar city. Bliss!

Otherwise the day was washing, drying, folding, making phone calls I’ve been putting off for ages, writing emails I’ve been putting off for ages, organising a catch up, trying to decide on accomodation for a long weekend coming up, and watching for rain so I could decide when to do a bike ride. Turns out that I watched for rain all day and it never rained. But then it was the end of the day. And I didn’t get to ride. I wonder where I went wrong? In my defense it poured the entire previous day. So. Also, I realise as I’m writing this down what a social day I had; quite unusual for me generally. I must be going pretty well at the moment. I guess I already knew that, but it’s nice to have proof.

 

A bad day

**Usually I write in a very controlled way. I write on my good days, and although I access sadness and badness and evil, I do it in a way that I can manage easily without things getting out of control. Yesterday things were out of control. I was having a bad day and a bad moment of despair and crying into my pillow and thoughts just exploding all over the room and I thought, you know what? I need to write this down. If I can’t write down the darkness and disorganised-ness what am I really showing you of the “real” diseased me? So this is raw and I apologise if it’s too much of anything. By the time I am writing this, things have been sorted out and we’re back on track. There’s still the diet thing, I’ll get to that another day, but for now here is the thoughts as they spilled out of my head in my crying despair**

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I’m the Monster. The one under your bed. The one that jumps out and scares small children and large adults alike. The obese monster, morbidly obese by the books. The one who side on, at a glance, could be confused with a large tree trunk or concrete pylon! Who has been asked TWICE this week if she’s too far into her pregnancy to fly! And another two times in that same week if she’s pregnant, once before a massage and once before a dress fitting. Cos that’s relaxing!

I’m the Destroyer. I start with memory foam beds and crush the memory and the foam out of them. I move onto brand new leather couches and triple my husband’s imprint in the first 3 months. Time to change sides! Then I grind the life out of said husband until he doesn’t care, or hurts so much from caring that he leaves. Well that’s my mental image of how this goes, in any case, and I’ve had a couple physical images to assist with the mental image; that’s the extent of his distress.

I break laptops, drop mobile phones, spill anything remotely liquid, trip over power cords ruining plug connections, slip down inclines, fall over pebbles, draw ink on bedspreads, stretch clothes in the wash,  wrench roof racks and bikes off the car roof bending the metal and stripping paint off bikes and car alike!

I’m fat, so fat, so very very fat and it’s ruining everything. I’m told. It’s hard to see from the inside. I’m ruining my marriage by being fat. I lost my job from the consequences of being fat. I’m slow, I’m too slow, I need to lose weight, I need to speed up, I need to change, change, change change, stop being me, be someone else. Someone not fat and not slow who isn’t ruining everything.

My husband is fed up. And why wouldn’t he be? 3 years of me being sick, 16months of being off work before, 9 months in a job and here we are, back at the beginning. And if I just lost weight it would fix everything. I wouldn’t be ruining the couch, wrecking the bed, sitting at home doing nothing. If only I would lose weight. Because it’s difficult for him, me being fat. Every day it’s hard for him, me being fat, he tells me. It’s hard on him. I’m fat and it’s hard. He says we can’t do things, be things because of it. It’s fair for him to ask me to lose weight, because he has to deal with it too. And me not losing weight makes him think I’m not trying, I’m not trying for us. Can’t I do it for him? Can’t I lose weight for him? If I won’t do it for myself. It’s been 6 weeks. 6 weeks since I saw the dietician and starting a food diary. And I haven’t lose any weight. Why? Because I’ve been snacking. Why? Because I eat in emotional situations. So instead I’m meant to be dealing with my emotion. Here you are, here is my emotion. I’m dealing with it.

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I hate to cry. Crying is weak. I know, I know; I shouldn’t say that. Especially me, advocating for mental health. But to me it’s weak, I hate it, and I avoid it. But here it comes, crying, because of my diet. If I cry, I don’t store and if I don’t store, I don’t eat because of the store. Apparently. So I’ve cried twice since starting my diet.

I want to see that you’re putting in an effort. But you won’t see it; change is gradual and you don’t see weight loss for a while, a good long while. So what do you want to see? It’s such a lot of pressure, proving something. Proving you did, defending that you didn’t; proof. I’m trying. But I want to see that you’re trying. Well I am trying. Well how can I see that you’re trying? It goes round and round.

And now, one in the bed and the other one said I can’t stand this anymore. Is it cold? How cold? Who cares, I’m storming out. And I’m crying my tears because I have to put in an effort and one can’t bear it and the other can’t wear it, and it’s a mess. Royally a mess. What to a fix? I promise sincerely I will truly really do what I’m told, and I will make the numbers go down, and I will make them keep going down. And then we will live happily ever after because I’ll be able to energetically walk everywhere that I’m asked to walk, and I’ll enjoy physical activity and my fatness won’t slow me down and make me sluggish and I’ll be fixed. And if my condition and cures continue to prevent that from ever being realized? Well at least I’ll be skinny. Life is better when you’re skinny. Time for my daily walk and my diet jelly. Adieu.

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.