…is probably shown best in this picture.
a constant input-assessment-sensemaking loop
I am writing this down, on the off-chance that I can help another woman (or man, husband, friend, son, father) to be less panicky about breast cancer and the treatments involved, such as radiation therapy.
I had a DCIS* found in Dec 2018 (*explained below). I got operated right away, had all three high grade nodules completely removed. I healed during Jan/Feb. During Mar/April I have to go to hospital every weekday and receive 25 sessions of radiation treatment to my right upper chest. It started on the last day of Feb, and the wait towards it was the most stressful thing I can remember. I only ever had 3 panic attacks in my life, one was over a decade ago, the other two I had in February, waiting towards these sessions. I would wake up at night, sweat drenched, suffocating. My nerves were on edge, ready to jump anyone who dropped as much as a feather around me.
Now I am into my third week, I have received 7 treatments so far. My panic has subsided, and gave way to surrender. I stopped thinking about the side effects that were so meticulously repeated to me: scarring to the lung, brittling of the ribs, other cancers, the skin will come off, pain increasing and worsening after end of treatments, etc etc… I arranged for work to be part-time, go to work in the morning and get the sessions at St George late afternoon on my way home.
I come to the same machine, every day, and the same bunch of cheery nurses who tend to me during the ~15 minutes a session takes. There’s laughter and banter. What takes the most time is the set-up: I have to lay in the exact position, every single time. On day 0 they prepared a ‘cast mould’, and that is where I lie down in. Next is laser measuring with fancy green lights that cross where they must, and the nurses actually do a numberwang ; -D they call out numbers to each other (confirming the correct alignment). Then they leave the room, and the actual zapping takes ~ 3 x 10 seconds, from different angles.
The whole thing is doable, but now a 4th of the way in I can feel my skin giving up and the internal bruising increasing. I will see how see much more the effect will impact. I will come back next or so and write more about it. I use an (allowed) moisturiser from the pharmacy (Dermaveen, 100ml) to keep the skin from breaking up.
Update 21-03: I’m now halfway through the sessions. Today is day 15/25. I am still doing ok, but now the skin is sore, like a hefty allergy, and the bruising no longer ignoreable. I will continue to go to work, but will stop if I can’t. I get random pain in the area, like deep cuts, but not more than maybe ten times a day. But moving around I have to do slower than usual, so not to upset the whole thing. Two more weeks and then I’m done. I’ll report back next week or so…
Last update 06-04: It’s done, I had my last radiation treatment yesterday. I am quite sore, my skin is about as purple as the colour of the waiting room sign below, and very angry, inflamed, blisters and open sores, but altogether I am in good spirits, also because of the good care I received throughout the entire treatment. Plus the nurses were fantastic, lovely and caring and also funny, there was always giggles and good wishes. So next is now healing, which I was told will take a while. I’ll come back here and report how that went in a week or so.
But main fazit: Don’t be scared ladies, there’s good care out there xx
Final update 12-04: It’s now a full week without treatment, and my skin has recovered a lot. Not right away, the first few days (and nights) after the last session where the most ‘taxing’ (pain, heat, strong itch), but then the healing kicked in almost instantly. I add two photos just to give an idea of how I look now (not shown for obvs reasons are nipple & scar from the operation, which are the most angry & inflamed parts). I post this in the hope it takes the worry of someone’s mind, because from all that I had read before treatment started I had actually feared much worse than this, but could not find any depiction of what the effects might at least roughly be. (plus also posted in the hope not to scare anyone!). The inside is still sore and extremely pressure sensitive, and will take much longer to recover, but I could already go for a long walk, carry bags home etc. Life’s good again : -)
PS – Next steps: Follow up with clinic prof in 6 weeks (cells need ~28 days to rebuild). Then comes follow up with surgeon in July (6 mths after op). Then a full mammogram in Dec (1 yr after op). Surgeon & mammogram repeat 6-mthly for 5 years.
(the two lambs are just saying Hello and not to worry too much ;D xx)
The Stoics, much like Buddhist philosophy, thought humanity’s main problem was attachment. The more attached to external things – jobs, wealth, even loved ones – the more we suffer if we lose those them. Instead, they suggest we only be concerned with what we can control: our own personal virtue. For Stoics, we aren’t vulnerable because the only thing that matters can’t be taken away from us: our virtue & our values.
Enlightenment philosopher Immanuel Kant had similar thoughts. He believed the only thing that mattered for ethics was that we act with a good will. Whatever happened to us or around us, so long as we act with the intention of fulfilling our duties, we’re be in the clear, ethically speaking. It’s our rational nature – our ability to think – that defines us ethically. And thinking is completely within our control.
I go through life and see & value people through their actions, and their intend. What they say is “Schall und Rauch” to me. I strive to live fearless and without baggage. There is no other way if you want to be able to help others and yourself. Angst eats soul and makes your heart small. I have to thanks to my Ethics peeps for all their good food for thought <3.
This! Love liberates! <3 Maya Angelou
Starting in a new team tomorrow. All the panicky bells and whistles going, the familiar anxiety combo. But age & experience have their advantage in that it’s all not so overwhelming anymore. Instead the pressure’s rather distilling. Boiling the essence out of my ingredients. I have learnt that my main USP is persistence. I tend to not give up. I might not be as diplomatic or graceful as others, but I do make things work.
The thrust for that I get from a vast word-zoo in my head. Words are my shtick. In my mind, thoughts are roaming the wild like a bunch of liberated serengetians. For me, doing work and giving structure to a project is the side-noise that keeps me sane… and lets me ponder in the background.
Just was offered a new position. Let’s see what I can make from it.
War is political failure. Never, ever forget that
— Andrew Elder (@awelder) 11 November 2018
Just bumping this, as it is truer than ever <3
Brain science tells us there are three kinds of intuition: ordinary, expert, and strategic.
Ordinary intuition is just a feeling, a gut instinct.
Expert intuition is snap judgments, when you instantly recognize something familiar, the way a tennis pro knows where the ball will go from the arc and speed of the opponent’s racket.
Strategic intuition is a clear thought. It’s not a vague feeling, like ordinary intuition. And it’s not fast like expert intuition. It’s slow. That epiphany of insight you had last night might solve a problem that’s been on your mind for a month. And it doesn’t happen in familiar situations, like a tennis match. Strategic intuition works in new situations. That’s when you need it most.
This third kind of intuition is what I go by whenever I can. Strategic intuition is what guides the majority of my decision making. And while it is unpopular these days to request time for thinking, you have to take your stand and do it anyway, and allow for proper time to reflect. I have a 24 hrs ‘sleep it over’ rule.
Which compliments my other approach to life and everything, something that’s called the OODA loop (observe, orient, decide and act). This ‘rapid evaluation routine’ keeps running permanently on the back of my mind (or wherever my intuition-o-meter sits). Originally the OODA method was derived by pilots who apply the loop to make fast decisions and review them in a constant cognitive circle.
You have to swim fast when the water is cold…
The standard you walk past is the standard you accept.
– D. Morrison
Starting a new job on Monday. A reminder to self what matters…
On leave in my hometown hanging with fam and friends is the best thing ever 😀
U beaut ;-*) #Sydneytown
‘Every saint has a past, and every sinner has a future.’
– Oscar Wilde
found on the interwebs, by unknown author:
When you have depression it’s like it snows every day.
Some days it’s only a couple of inches. It’s a pain in the a**, but you still make it to work, the grocery store. Sure, maybe you skip the gym or your friend’s birthday party, but it IS still snowing and who knows how bad it might get tonight. Probably better to just head home.
Your friend notices, but probably just thinks you are flaky now, or kind of an a**hole.
Some days it snows a foot. You spend an hour shovelling out your driveway and are late to work. Your back and hands hurt from shovelling. You leave early because it’s really coming down out there. Your boss notices.
Some days it snows four feet. You shovel all morning but your street never gets ploughed.
You are not making it to work, or anywhere else for that matter. You are so sore and tired you just get back in the bed. By the time you wake up, all your shovelling has filled back in with snow. Looks like your phone rang; people are wondering where you are.
You don’t feel like calling them back, too tired from all the shovelling. Plus they don’t get this much snow at their house so they don’t understand why you’re still stuck at home. They just think you’re lazy or weak, although they rarely come out and say it.
Some weeks it’s a full-blown blizzard. When you open your door, it’s to a wall of snow. The power flickers, then goes out. It’s too cold to sit in the living room anymore, so you get back into bed with all your clothes on. The stove and microwave won’t work so you eat a cold Pop Tart and call that dinner. You haven’t taken a shower in three days, but how could you at this point? You’re too cold to do anything except sleep.
Sometimes people get snowed in for the winter. The cold seeps in. No communication in or out. The food runs out. What can you even do, tunnel out of a forty foot snow bank with your hands? How far away is help? Can you even get there in a blizzard? If you do, can they even help you at this point? Maybe it’s death to stay here, but it’s death to go out there too.
The thing is, when it snows all the time, you get worn all the way down. You get tired of being cold. You get tired of hurting all the time from shovelling, but if you don’t shovel on the light days, it builds up to something unmanageable on the heavy days. You resent the hell out of the snow, but it doesn’t care, it’s just a blind chemistry, an act of nature. It carries on regardless, unconcerned and unaware if it buries you or the whole world.
Also, the snow builds up in other areas, places you can’t shovel, sometimes places you can’t even see. Maybe it’s on the roof. Maybe it’s on the mountain behind the house. Sometimes, there’s an avalanche that blows the house right off its foundation and takes you with it. A veritable Act of God, nothing can be done. The neighbours say it’s a shame and they can’t understand it; he was doing so well with his shovelling.
I don’t know how it went down for Anthony Bourdain or Kate Spade. It seems like they got hit by the avalanche, but it could’ve been the long, slow winter. Maybe they were keeping up with their shovelling. Maybe they weren’t. Sometimes, shovelling isn’t enough anyway. It’s hard to tell from the outside, but it’s important to understand what it’s like from the inside.
I firmly believe that understanding and compassion have to be the base of effective action. It’s important to understand what depression is, how it feels, what it’s like to live with it, so you can help people both on an individual basis and a policy basis. I’m not putting heavy sh*t out here to make your morning suck. I know it feels gross to read it, and realistically it can be unpleasant to be around it, that’s why people pull away.
I don’t have a message for people with depression like “keep shovelling”. It’s asinine. Of course you’re going to keep shovelling the best you can, until you physically can’t, because who wants to freeze to death inside their own house? We know what the stakes are. My message is to everyone else. Grab a f***ing shovel and help your neighbour. Slap a mini snow plow on the front of your truck and plough your neighbourhood. Petition the city council to buy more salt trucks, so to speak.
Depression is blind chemistry and physics, like snow. And like the weather, it is a mindless process, powerful and unpredictable with great potential for harm. But like climate change, that doesn’t mean we are helpless. If we want to stop losing so many people to this disease, it will require action at every level.