kjemohjerne

Chemo brain status, 2023

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I’ve long since lost count of which year I got cancer and it doesn’t really matter one bit.

This might get long so you really need to listen to Host because I am madly, totally, completely, lovingly hung up on that album. I even did a review of “IX” cos I started writing reviews for puls.no at some point. Host is Nick Holmes and Greg Mackintosh from Paradise Lost and you should really check them out. “Draconian Times” has been stuck in my car for months and months but that’s not what I was going to write about.

Digressions are good.

One of the very last things I did before I decided cancer was a smart move, was participate in a medical study about “Biological predictors in memory” which was SO much fun. We’re talking mere days prior to finding the tumour. Day one was doing easy exercises in an MR machine, basically looking at loads of clip art drawings, part one was answering “Can you eat it?” or “Can you lift it?” and part two was “Have you seen this image before? Do you remember what you were asked if you could do? Were you asked if you could eat or lift it?”

Day two was loads of different tasks. Remembering series of numbers. Repeating them backwards. Remembering loads of items in two different lists, than classifying them and repeating them several times. Weird word pairs to remember. Complex drawing. That kinda stuff. Weight measurements (I think I was a whopping 132 kg then).  

Since then chemo brain has been a massive part of my life but some of the fog has lifted slightly so when I was invited to do a follow up, I jumped at the chance! I figured that my brain is functioning ever so slightly more but this would be a good opportunity to see which parts are still completely non-functioning.

MR was a blast. Full score (except I pushed the wrong button a couple times, but I did that last time, too). Day two: 88 kgs (that’s 44 kgs down). Bp 129/82 which is still really good.

Darn! That’s a third of what I weighed at the time!

Remembering numbers: kindaish, but five digits backwards nope. Long list of different items: first try was a bust, second try slightly better, third try even better, so it seems if I push I can find long lost albeit very fresh memories.

Still not functioning at all: memorising weird word pairs from a screen. I was presented with 36 word pairs (concert fur), was given a piece of paper with one of the words and was supposed to remember the second one. Ladifknhootidah. First round I remembered one pair. Second round, three. Had to draw a complex drawing (I can’t draw for shit) which was fair enough when I had the thingy to look at. Fifteen minutes later, “Please draw it from memory” yup nope, that’s not happening. I got most of the main form and then my mind was blank.

Mimi is really sweet, she’s from Canterbury and she’s going to be massive one day. Remember, you read about it here first!

Anyways. Conclusion from this medical study (and hopefully they’ll let me participate in three years’ time for another follow-up) is that I do well with images. There’s nothing wrong with my eyes or my perception of images. If I saw the image a second time, I always remembered what I’d answered.

Hand-eye coordination when drawing a mirrored image – as expected. Quite normal.

Doing computer games where the object was to remember if the image you were presented with was the same as one you had seen previously, either the last, second last or third last one. That worked, too! Most of the time. I think my “score” was about the same as last time.

Remembering a list of items that I heard – decent. Improved when I heard the list a second time and even better the third time. 

Managing to remember words I read – that’s a big, fat zilch. And I kinda knew that. Reading is still pretty hopeless most days. Good for me is that I don’t need to read and remember to proof read scientific articles and I don’t need to be able to read to write articles!

Conclusion: don’t give me books and expect me to read them. I love looking at the pictures, though!

Biological predictors in memory

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One of the last things I did before I got cancer was be part of a study that looked at biological predictors in memory.

I loved it! I was in an MR machine doing tests and then had a memory thingy and what I remember best was that the person doing the memory tests – remembering a set of numbers – was all “I have nothing further for you. Your memory is excellent!”

Since then I’ve been struggling with chemo brain and memory and shit what did I eat today? Did I eat at all?

Then I got an email. “Since you were part of this project we’re inviting you to a follow-up…”

So of course I said YES! I WANT TO JOIN! I WANT TO SEE WHAT BIOLOGICAL DIFFERENCES YOU’VE FOUND!

It took me about a week to find the old emails and realise that I was last tested when the tumour was tiny. It had just started growing. It was minute. It hadn’t figured out what to do yet. So basically, my last shot at this project was days before I found that tumour.

Am I massively excited to be a part of this project and get a chance to see if chemo brain is physical?

YES!!! TOTALLY!!!

And although they’re not looking at this specifically – this might be really interesting since my brain frazzled just after this.

No. I don’t think the testing gave me cancer.

Am I massively stoked for what they might find? That my brain might actually be working better than I think? Or not?

Or that they might actually find something physiological?

OMG this is going to be so much fun!!!

AND I have a new favourite album. Host: “IX”

Do Soundtracks matter?

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Five years since I started this journey.

Entering my fifth year with chemo brain, and there is zilch progress so I’m pretty sure I’ll have it forever…

So I still can’t read books or articles or do stuff that requires that I actually use brain power cos it isn’t there. Gone. Useless.

Same applies for listening to audio books or podcasts or radio cos I tend to zone out completely, too much hard work to listen and pay attention and actually enjoy it.

Not that I don’t try, you never know, today might be the day that brain actually pretends to work for more than a zeptosecond at a time.

I was on a road trip with a friend, and he says “Let’s listen to Thomas Seltzer’s podcast” and I thought OK, I can try that, so we turned on the program about 80s music and woohoo! Started off with New Order’s Blue Monday and it took me all of forever to remember who and what it was (tbf I was kinda sure it was New Order but had to search the lyrics to be sure)…

It was a decent show (unfortunately in Norwegian only) and there was plenty of great music – yes, I quite agree, this is a lovely video!

But then he goes on about Michael McDonald and I was thinking I don’t recognise that name, and he plays this:

Not ten minutes before, we’d been talking about the difference between soundtracks then and now. How in the “old days” music was written specifically for a scene or feeling in a specific movie, and if it’s good, it’s perfect and that music will forever bring you back to that scene and that movie.

I’m pretty certain I haven’t heard Sweet Freedom since the 80s. However, it took me probably ten seconds to think “Shit! Movie!” and then everything stopped, except I kept thinking Gregory Hines for some reason (another person I haven’t thought about since the 80s) and suddenly I was thinking about White Nights (1985) which I loved but it didn’t make sense, so I was kinda stuck there so I had to imdb it – and I was just one year wrong. It was used in Running Scared (1986).

I’m impressed. I can’t remember what day it is nor what I had for lunch half an hour ago, I forget names and faces and just about everything – but that one song sent me straight back into a long lost era. I think maybe The Matrix (1999) was the last film where songs can trigger my neurals into happy memories about films. I miss the time when the film industry was all about quality rather than quantity.

Just for the record, since this post is about movies, music and amazing dancers, I’ll finish with this. One can simply never watch it enough.

Three year (end of) chemo long term side effects update.

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Whew! What a mouthful!

But it’s October, which means it’s pink ribbon and breast cancer awareness month, and we’re almost at the three year anniversary of my last chemo (please let me know if it isn’t three years; quite honestly, I have absolutely no idea).

Long term side effects update. Cos yes, I have plenty, and no, there isn’t enough information about them.

Chemo brain

No change. Some days are better, some are worse, at least people are so used to me not finding words or saying the wrong thing or stopping mid sentence and having absolutely NO idea what I was talking about, so it’s not really a problem. And I have no shame – I’ll tell new people that I’m not stupid, honest, just have severe cognitive damage.

Lea is still a really helpful secretary cat, so sometimes if what I write ends up pure gibberish, I can still blame her.

F(l)atigue

Still an issue. Not as bad as it was, but I can’t really plan two things in one day – cos sometimes something as simple as going to my physical therapist exhausts me completely and I spend the rest of the day in bed.

Blood work

My blood has never been better. So yay chemo! It worked! It actually fucking worked!!!

Physiology

Body is behaving nicely. Thanks to physical therapist #2, my knees are functioning, my legs and thighs no longer feel like logs and I can run up and down the Potemkin stairs. Or up and down a mountain. Go me!

Which also means I can drive again, without pain in my knees and thighs, and Billy is The Best Car Ever. Or Guglielmo which is his fancy Italian name, since he’s Italian and all.

He needed a check up this August (PKK – periodic roadworthiness test). 16 years old (yes, he had a birthday party) and 212′ km under his belt – and all I needed to fix was replace the brake wires. He’s such a darling!

And the Tamoxifen which I have to take for the next 7 years or so – I love it. It is fucking awesome. Ya know my hormones that have been quirky and insane all my life? Tamoxifen gives me an extra boost of testosterone and progesterone and it’s doing wonders for my muscles and joints and everything else. 

Heart rate is – constant. It’ll probably never be as good as it once was, but by running up and down hills in the forest I keep it under control. It’s stopped racing like mad just cos I’m thinking of doing something.

Mental stuff

Still kinda inhibition free which is amazing. Chicago in December was fantastic and there is no way old Siri had made it there. Making new friends is fun. Compromises? Still not very good at that, but at least I’ve learned how to write formal FU letters.

Insomnia

Can be useful, too. No jet lag. You can drive through the night without needing sleep. 

More importantly, you get used to it. You get used to all sorts of bad stuff, to be fair.

Is there no bad shit?

Of course there is. There is always shit. In my case, the WORST long term side effect is that I have become The Most Attractive Being in the forest for all insects and arachnids. Flies, mosquitoes, ticks, wasps, deer keds, blackflies, they’re all SO attracted to me and love me and can’t stay away. Which is bloody annoying when I’m in the forest. Something happened to my blood and I’ve gone from dull and uninteresting to the number one target.

I have an eating disorder. Chemo threw my olfactory senses out the window and I more often than not struggle to eat properly. It’s difficult to explain. I’ll want something in the store, buy it, get home – and can’t eat it. Just thinking about eating it makes me queasy. All I want is beer, wine and chocolate.

Bad shit is mostly about how you take it. If you let shit overrun you, then it will. If you decide that you’re going to find the good stuff in bad shit, then you’ll find it. Tomatoes grown in sheep shit are the best, after all.

No tits

Seriously? No one notices… 🙂

I used to be good at this shit.

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I used to be able to write awesome reviews with no effort at all.

Didn’t cost me a calorie.

Now I’m struggling with the first sentence of three different concert reviews, two of which I have written but f*ck knows where they are. I think they’re stuck in some kind of kittycyberspace. I must admit that writing in Norwegian might be one reason my creative juices are stagnant but it’s a crap excuse cos it’s supposed to be my mother tongue… right.

Listening to old Laibach to see if that will help. And I do mean old stuff. Enjoy!

Chemo brain is fun

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Not.

But it’s very interesting.

I read about it, and thought it was pretty weird and insane that people could get it up to four months before they actually had their first chemo.

The problem with chemo is that you don’t realise that it’s gripped you in its talons until you’re so dazed and confused that you hardly know what month it is. In hind sight, it probably hit me around June – two months before I started? And it’s still got me gripped – hard.

Chemo brain can’t be explained to someone who hasn’t been there. It’s not just about being forgetful. It’s about your mind turning into a great big void, a giant vacuum, and there is nothing there. Your thoughts are the frailest of whisps, and if you’re lucky you might catch one for a milli second but probably not long enough for you to actually complete or comprehend that thought.

Explaining it to others is useless. Best case you get the condescending “Oh, I’m like that sometimes, it’s an age thing”.

No, this is not an age thing. It’s not something that happens sometimes. It happens all the time, every single fucking day. There is no rest or respite from it.

Giving me books is not only stupid, it’s a fucking insult after having had this for almost three years. When I say that I can’t read books, it means just that. I can’t read books. My brain is unable to do all the complex functions that reading books demands.

Asking me “Do you remember…?” is also a fucking insult. No, I don’t remember. I can answer that before you finish your sentence. I don’t remember squat. I’m happy if I wake up and know what month it is.I might have told you something yesterday and I’ll have forgotten.

If you ask me a favour, and I ask you to remind me, it’s not to be rude, it’s because there is no way in hell I will remember our conversation three seconds later. It will be gone into that vast void which might be interesting to explore at some point but I doubt it.

Oh, and if you add insomnia into the game, it all adds up to social anxiety in addition to the rest of the fun long term side effects I have.

At least I’ve found some words again. They eluded me for so long, I felt deaf and dumb and mute hence the long lapse in blogging.

Running on fumes

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I’ve been quiet for a while. Not because I haven’t had any words, but it’s been too hard a struggle.

Going through cancer treatment sucks, but it’s nothing compared to the void after.

You’re not cancer-free. You’ll never be cancer-free. Your body is shit and will never work properly again.

Your mind is fucked-up and if you’re lucky – it may start working again in a few months. Or a decade. Or never. It’s called chemo brain and there’s nothing that can be done to fix it.

So your life sucks. And your friends are gone, cos who wants to hang with a cancer patient. The few good ones stay – cos they’ll always be there – but most of them are gone. And maybe you got some new ones, or revitalised old friendships, cos hey – some people actually are there for you when shit happens.

I see you. I know who’s been there. You know who you are. You’ve kept me alive.

So you walk out the other side of cancer treatment with a couple of new friends and you’ve lost many more. And maybe you realise that family and blood and shit – it’s just a goddamned lie. They can talk about blood all they want but fuck it – I have scars that prove the opposite.

So thank you to those who actually care and keep me alive. The rest can just go to hell. I’m too tired to be polite any more. I have so many battle scars I’m not sure how I stay upright.

Oh yeah, I know.

There are so many people who would dance on my grave, and fuck it if I’ll get them that satisfaction. I’ll be their guilty conscience.

I just wish I had a bit of energy, but fuck it, I’ve been running on fumes for so long that who gives a fuck. I will survive cos FUCK YOU. I have worth. I am a fucking awesome person. I used to be interesting but these days you’ll be lucky if I know which month it is.

And I have music. Thank you Trent Reznor for being the psychotherapist every crazy-ass person needs. Thanks to Al Jourgenson for noize. Thanks to Gary Numan for suddenly being there and being my soundtrack.

So – going to London in June to see NIN at the Royal Albert Hall cos fuck it, I need something good to look forward to. And Gary Numan at Rockefeller in December. Certainly can’t afford NIN but my mind needs it.

And the irony of it all? I don’t think any of my blood relatives actually can be fucked to read this blog.

My name is ruin, my name is vengeance
My name is no one, no one is calling
My name is ruin, my name is heartbreak
My name is loving, but sorrows and darkness
My name is ruin, my name is evil
My name’s a war song, I sing you a new one

Chemo brain

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Chemo brain is the complete lack of cognitive function that sets in to just about every person who has chemotherapy.

It’s actually a medical diagnosis. Unlike most other diagnoses it’s name is simple and understandable, so that we who suffer from it actually stand a chance of remembering the word itself. Loganamnosis is, ironically enough, the term for forgetting words.

Doctors and researchers call chemo brain many things, such as cancer treatment-related cognitive impairment, cancer-therapy associated cognitive change, or post-chemotherapy cognitive impairment. Most define it as a decrease in mental “sharpness” – being unable to remember certain things and having trouble finishing tasks or learning new skills. (ACS)

Docs don’t really know why, but it can appear as early as 3-4 months before the patient has chemo and can last for a decade. Mine went crazy bad after the surgery.

You know how sometimes you’ll walk in to a room and forget why? Then you have to retrace your steps and you figure it out?

Chemo brain is getting up halfway and forgetting why you got up. Nothing around you gives any hint as to what you were doing. You might make it into the room that was your intended destination, but you’ll most certainly not have the faintest clue why.

Or starting on one sentence and forgetting what you just said. Not just the words, mind you, but the whole shebang. Your mind has absolutely no memory of whether you were talking about love, war, the weather or the Olympics. Worst case you start on one sentence and finish it about something completely different.

“Did you watch the news, in Syria it’s really bad, it’s -20C with three meters of snow and a nice Beaujolais would be nice with that for dinner”

Chemo brain means your entire life turns into a gazillion conundrums for the people around you.

But you’re not crazy – welcome to your life.

TBH I have no idea which day it is. I live through my cell phone. It has a calendar. Programming all appointments into it is second nature to me, I don’t have to think, I just have to double-check once or twice. Then I set the alarm – if it’s within the next fortnight, I set the alarm the day before just in case. If it’s weeks away – I’ll settle for an alarm on the first of that month, just to remind myself.

Just remember: there is no such thing as a ‘smart place’ to put anything, cos ‘smart places’ tend to be vortexes into some other dimension.

If you need to order a ticket or hotel, double check that you’re booking the right year, month, and correct departure station. Then get someone to control it for you.

And because reading and stuff is really difficult, here are some links in Norwegian:

Cellegift kan ramme hukommelsen
Tåkeleggingen er reell
Mia er alt annet enn A4

Loganamnosis

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LOGANAMNOSIS is the obsession with finding a specific word you’ve forgotten.

I keep learning all these fancy new words, every side effect I’ve experienced has a fancy medical term.

Unfortunately I forget most of these words before I’ve learned them because of chemo brain. Not getting any better and I’m not really expecting much progress for the next year or so.

But I am quite happy that this is also an actual thing. When half the words you want to say are “on the tip of your tongue” … I’ve become quite good at making up words and using sign language, but that doesn’t really help when you’re talking on the phone.

Or blogging. I’m writing and looking for a word, a specific word, but I can’t remember what it is neither in English nor Norwegian. I can’t even describe it in either language. I actually forget, whilst trying to find that darned word, what I meant to write – cos it’s all gone.

I even forgot about finishing this. It’s been sat as a draft since February 18th, 2018 – and my loganamnosis sure as shit isn’t getting any better…  but there years on, most people I surround myself with are so used to it that I can make noises and hand signals and they understand me perfectly. Sometimes they’ll laugh at me, mostly cos I laugh at myself, too.

Laughter sure as shit is still the best medicine, right?

Oh, and remember the lemons!!!

Soundtrack this month is Tear down the walls.

27 bands joined forces to pay tribute to Pink Floyd’s rock opera, The Wall, and raise money for Doctors Without Borders. The benefit compilation pays homage to the original album while giving it a modern feel and the rougher edge only industrial bands can successfully deliver. Several legends of the industrial music genre lent their talents to this project, but it also includes the up and coming bands of industrial music.

Spring is coming! I have made good with the ents!