Chemo brain

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!

My silver anniversary was spent offline…

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In October I had a silver anniversary.

Internet and I have been connected more or less full time for 25 years.

That’s a long time.

It all started with sb13@ukc.ac.uk, has been through numerous email accounts (including several anons in Finland), a dozen computers/terminals and most OSes. I started my online career with mail, cat, jove, vi, irc, tetris, text-based rpgs and vms.

I’ve agonized over slow modems and trying to get the TCP/IP adjustments correct. Plug and play did not exist in those days. I can remember the very first days of Netscape and playing Doom on the office intranet.

In other words, I was at one time at the peak of technology.

My N95s, from left to right: 2008-14 and is used for charging as the screen is kinda wonky 2014-? is my current phone The last one is for when the current phone dies…

No longer. I am now very happy to have my faithful N95, and although it was first generation smart phones, it now has very limited options: I can make calls, send messages, take awesome pictures, and play on facebook.

That’s it. So what with neuropathy, flatigue, muscular pain, acute tendonitis in both arms, a resting bpm over 120 and loose nails on both fingers and toes, I have been more or less offline since the end of September.

Which is probably the longest time I’ve spent offline even through the early 90s (I was allowed to sneak in to UiOs servers and log on to my anon email accounts).

Apologies to all who have sent me emails or awaited updates here, there are a gazillion blogs coming but they are not pubishable from my N95.

And no, I can’t use a touchscreen thingamajig cos my tendonitis flares up.

Soooo…. I’m afraid you’ll have to stay patient a while longer. My finger nails are threatening to fall off. Sorry.

 

The downward spiral

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1

Day 27 after last chemo.

27 days of complete and utter flatigue and an insane heart rate.

Every time I have made a movement, my body has perceived it as having finished a marathon. My entire body has gone all wobbly, heart rate has sky rocketed, and I’ve collapsed onto the closest chair-like object. Regaining control of my body has generally taken shorter time than decreasing my heart rate to something that can vaguely be called ‘normal’.

Life for the past 27 days has mostly been dragging myself from bed to the sofa, watching ancient reruns of Bones, Friends, NCIS and Master Chef (Junior). It’s also been numerous crappy reality shows (pawn shows, designer competitions etc) and Border Security: Australia’s Front Line which is actually kinda interesting/entertaining.

I can’t say how annoyed I was when I – last Sunday, ie day 20 – remembered that I have the dvd box sets of both Buffy and Angel. Coulda binged on them for three weeks instead of crappy daytime tv. At least I now have something fun to watch, as it doesn’t seem as if this flatigue is leaving anytime soon.

My concern has been my heart. An increased HR after exercise is normal – but this has been as far from normal as can be. I yawned and my HR spiked past 140 and stayed there for ten minutes. My normal HR at the hospital has been ca 65. The good thing is that once it passes 130, you don’t actually need to search for a pulse to check – cos your entire body is pounding with blood so you can sit still, close your eyes and just count. Dead easy.

The tricky part is falling asleep when you can feel your heart beating, hard, rhythmically, wondering if this is ever going to end. After a couple of hours of 120+ one tends to give in and take a sleeping pill. It’s weird how the rhythmical noise in a MRI/CT machine sends me to sleep, but my heart making the same kind of noise doesn’t – maybe because something in me is worried for chronic heart problems?

The irony in my mother dying of heart failure when she was 49 – and me now having massive heart problems at 44 – has not escaped me.

The skin on my feet is disintegrating so I got an electric foot file. I can actually pull off large pieces of 3-4 mm thick skin that has just loosened – I know, sounds disgusting – but between removing dead skin, filing, and lathering in massive amounts of lotion, we’re hopefully soon back to something resembling normal.

At least my nails haven’t loosened yet but my eyes are still running.

Massi is back on the road (yay!) so we had an enjoyable trip to the hospital for my next scheduled chemo. I can drive. It’s just the walking to and from car, getting in and out of car, and all that stuff that sends my ticker into a frenzy. At the moment I have three options for getting to the hospital: drive myself, take public transport (out of the question for my immunocompromised body), or be at the mercy of Pasientreiser. Seeing as the early shift take great pleasure in changing orders and sending out cars an hour early, that is no longer an option.

It was when I could shower & get ready in ten minutes. I now need an hour just for showering. So – we drive. The fact that it’s a good 300 m walk from the car park to the hospital should be interesting. Seeing as I normally can manage 10-15 m before collapsing, this will not only be a marathon for me, it’ll be an ultramarathon.

Speaking of which. Chemo brain has run out of power even if heart is pounding on at 130. I love my fake-life. tbc…