mental health

Just another health scare?

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In June I found a small lump in my groin cos it hurt.

I didn’t want to deal with it, attributed it to walking into a tree or falling on my arse or bumping into something stupid and tried to forget about it.

Couldn’t forget about it in September when it started hurting and had grown – massively – and kept growing.

A fun side effect of cancer is that you’re more prone to getting cancer again, and the lovely Tamoxifen that I’m on has cervical cancer as a probably side effect. Fuck, not cancer again???

Couldn’t get hold of my GP so went to the ER and got an ultrasound (I know the drill by now) and tech/doctor says “You need to be referred to oncology”

Still couldn’t get hold of GP so called another doc and said “I need a referral, that’s all I need from you, send me to onco and I’ll be out of your life”

Had a lovely holiday in Lo Pagán, Spain, apart from the fact that I got some kind of weird sun rash – it wasn’t red, didn’t itch, wasn’t a sun burn, just weird blisters which disappeared after 24 hours but came back if I didn’t use sun block.

Got home to a nice visit at haemotology at Ahus. “We’re gonna do some bloodwork and a biopsy and a CT and see where we send you next”

Biopsy first. Fkn stupid surgeon. “I can only see pus, are you sure it isn’t an ingrown hair and sebacous gland?” YES we did an ultrasound so do your work and stop being a fkn twat “ok I’ll see if I can find something”

Date with a doctor at Infectious diseases was nice. “So, we’re pretty sure this isn’t lymphoma but the CT was kinda weird so we’re referring you to a gynecologist also sending off tests to Sweden for Bartonella cos I never get to do that cos it’s expensive but you’ve got the syptoms and we’re also testing you for tularemia because of your tick bites”

She called me last week. I have tularemia – rabbit fever – hare plague (harepest) in Norwegian – from a stupid fkn tick (who are all over me since chemo cos apparently I’m now irresistable). Mortality rate is pretty high in the US but not that bad here in Norway.

“We’re still awaiting some test results but at least we have a cure for that!” so she puts me on ciproflaxin which is a new antibiotic for me and the nice lady at the chemist told me that it could be pretty hard on the stomach so important I eat and take the pills twelve hours apart – as on the dot as possible – and I should really read the instructions.

Most of the instructions are “If you have this side effect, contact a doctor IMMEDIATELY, do not pass GO, do not wait an hour, get your ass to the ER ASAP”

"Ciprofloxacin is a fluoroquinolone (flor-o-KWIN-o-lone) antibiotic, it is used to treat different types of bacterial infections. It is also used to treat people who have been exposed to anthrax or certain types of plague. Ciprofloxacin extended-release is only approved for use in adults.

Fluoroquinolone antibiotics can cause serious or disabling side effects that may not be reversible.

Ciprofloxacin should be used only for infections that cannot be treated with a safer antibiotic.”










Turns out, this is top notch bad shit fucking horrible side effects. Anorexia is a new one for me but it’s actually kinda nice to not eat and not be hungry and not want to eat apart from the whole “you must eat before you take the pills”. I shouldn’t drink coffee (that’s not happening) and insomnia is kinda wild – again – ffs





The worst side effect though is probably the “your mood might turn a bit negative”. Fuck that. These pills are fucking screwing with my head in the worst ways possible. “A bit negative” doesn’t work when you’re as fkd up as I am. My mind is never in any kind of state where it can tolerate “a bit negative” cos I crash completely. If you think I’m ignoring you, I probably am. Not in a good head state right now. Actually in a pretty shitty one. Wrote this yesterday. It’s not pretty so don’t read if you don’t want to.





It’ll pass. It always does. My 80 hour Marshalls are on most of the day cos  I relly need to drown out my screaming brain but Nick Holmes is with me and keeping me kinda sane. Thank fuck for Paradise Lost. 





Gynecologist was a bit “It doesn’t look right but I’ll take some tests and let you know” so still waiting for results from a few tests. Fuckit.

			

	
		
	


				
					


		

		
					
	

	
	

		
So, how the fuck are you?


				

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No one asks me that. Ever. A couple people say it but don’t really mean it




I think it’s cos they don’t want to hear “I’m not going driving today cos tunnel walls are too tempting”




They don’t want to hear “I’m exhausted with dragging my ass out of the bottom of hell yet again”




They don’t know that as long as certain people are still breathing, I will continue fighting




Like a fkn cockroach


Prepared to survive armageddon




Again


“May cause mood swings”


Fuck that


“This all is in my head”




Self medication FTW




Paradise Lost/Host are fucking great for surviving that kinda shit
			

	
		
	


				
					


	
	

		
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”



			

	
		
	


				
					


	
	

		
Words


				

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I know, it’s a cheesy song and video, but… hey, my blog, right?


So – words. When you have cancer, or have survived cancer, (and know someone who died from cancer), you notice what people say. Which words they use. Which words they don’t use.


“I heard about this miracle diet which kills cancer!”


No thanks. I’m not interested in trying to treat cancer with wheat grass or kale or ginger or garlic or cumin or honey or lemon or a cat’s fart. If there was an easy way to treat cancer, without all the side effects – short or long term – don’t you think doctors would use that, instead of almost killing the patient in the process of killing the cancer cells?


This is my favourite cancer meme. https://xkcd.com/1217/
This is my favourite cancer meme. https://xkcd.com/1217/


“S/he lost the battle”


You know what? That’s pretty condescending. People die from cancer. It’s not because they didn’t fight – it’s because cancer is a killer, and for any given reason, medicine is unable to stop it from killing you. It was discovered too late. It was a form that’s kinda untreatable. It had spread to some really necessary organ. You had wheat grass instead of chemo.


No cancer patient decides “Hey, I’m just going to let this alien kill me”. No matter what shape, form or type of cancer, we ALL want to survive it. Saying that someone “lost the battle” as if they didn’t fight hard enough? That’s bullshit. It’s rude. It’s disrespectful. It’s mean. If I die from cancer, and I’d wanted a proper grave, I would have wanted my stone to read “She brought a knife to a gun fight”. Except I don’t want a grave. I want my ashes spread in my forest.


Not asking questions directly


Okay, so I might be a bit more open about my cancer history than others. I talk. I write. It’s one of the reasons I survived this mess. I don’t mind talking about it. I don’t mind being asked questions about it. Hey, if you want to see my scars, feel free to ask me! You can ask me anything and I’ll answer. If I don’t know, I’ll tell you. I’ll probably google it and let you know immediately.


But don’t waste my time being passive-aggressive and expecting me to figure out what information you’re after. I don’t do that.


Feel free to trust me with secrets


One of the good things about chemo brain is that I forget what people tell me – and I forget who tells me what – so I don’t share what I’ve heard with others. Your secrets are safe with me. Mostly cos I forget what you’ve told me three seconds after you tell me. But I do try to remember the important stuff. I do my best to remember the stuff that matters to you, because I know you’re only telling it because you trust me. So… if I forget, it’s not because it doesn’t matter, and if I remember, it’s a compliment. Kinda.


“I have (had) cancer but it’s a secret”


I respect your wish for privacy, but what?


I don’t understand people who keep their diagnosis a secret, at least not breast cancer. I’m sorry. I don’t get it. At some point, it’ll be common knowledge – either because you get the shitty curls from hell (I am SO glad my hair is back to normal and no longer looks like my gran’s perm from the 80s) or because your wig gives it away or because chemo ruins your life and you need months to get back to normal. If you ever get back to normal.


It’s not as if we chose to get cancer. It’s not a life style cancer (unlike lung, stomach, anal or others), and although producing a brood of children early on and breast feeding them for ages might make you less susceptible, there’s no guarantee.


I have a new take on statistics 


Cos guess what? 1 in 7-10 of all women will get breast cancer. Let’s do this easy – and say that 10% of all women get breast cancer. It doesn’t mean squat. It doesn’t mean that there’s a 10% chance of you getting cancer. It means that if you do get breast cancer, you’re part of the unlucky 10%. That – for me as a statistician – is a massive difference.


A friend of mine recently said “You know a lot of people with cancer” and I’ve thought it through – a lot – I can’t remember who said it, but it doesn’t matter. The correct term should have been “You know a lot of people who are honest with you about their diagnosis”. I probably don’t know more people with cancer than you do, but because I’m so open about my diagnosis, some people might feel more comfortable telling me about theirs.


I don’t know.


I just know that you need to check your lemons. <3


“…”


If you don’t know what to say – say that. “I don’t know what to say”. It works just as well with cancer as with death and fire and all kinds of bad stuff happening. “Hey, I heard you got cancer, I have no idea how to respond” IS a response. Silence isn’t. “I have no words” followed by silence isn’t. “Shit babe, I’ve no idea what to say but here’s a crappy meme” is.


Thing is – we all have bad shit happen to us. No-one’s life is perfect, even if it might appear to be so.


And I know you probably haven’t read this far, cos there are so many words… which don’t come easy… but I hope you know that if shit does happen to you, you can trust me.

			

	
		
	


				
					


	
	

		
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… 🙂

			

	
		
	


				
					


	
	

		
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! 

			

	
		
	


				
					


	
	

		
Cancer isn’t just a physical disease.


				

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Cancer may be a physical disease, but psychological problems follow in its wake. Anxiety, depression, fear of the future, insomnia, these are all considered “normal side effects” of the diagnosis.


There are a plethora of meds that can relieve these symptoms. We have good meds for almost all the potential side effects of cancer drugs. Yet for some insane reason, taking antiepileptica for neuropathy (even with the warning red triangle ) is fine whilst taking benzodiazepines for your anxiety isn’t.


One of the ironic things about flatigue is that you’re so exhausted you can’t fall asleep. A resting heart rate of 120 didn’t exactly make things better. So to get at least a few hours’ decent sleep, I took a Stilnoct. Every single night. Weaning myself off them hasn’t been easy, but now my insomnia is back to normal and I last took one two weeks ago.


In cancer support groups, if someone asks for advice in regards to neuropathy the answer is always “Neurontin or Lyrica”. No-one would dream of suggesting anything else cos these are the only two meds that may work and there are no other known effective treatments. If you suffer from insomnia a couple might suggest warm milk with honey but most responses are for Imovane or Stilnoct or some other hypnotic. But if someone asks for advice on meds for anxiety issues, you can be certain that 90% will respond “try yoga or counselling cos drugs are addictive”.


You know what else is addictive? Life.


Life without cancer, without pain, life that feels good because you’re alive and well.


A life where you aren’t stuck in your tiny bedroom because you’re so afraid of the world outside the duvet that you’re terrified to stick your nose outside the door.


A life where you can have normal conversations with normal people because your brain can actually formulate sentences that don’t start with “I AM TERRIFIED” and end with “OF DYING/CANCER/PEOPLE/GOING OUTSIDE/BUYING GROCERIES”.


A life where you can go watch a movie with friends, a comedy even, and laugh so hard that the sugary soda you’re drinking squirts out your nose because you aren’t afraid of drinking sugar, or having a laugh amidst the terror of cancer, or hanging out with friends and enjoying yourself.


A life where you get treated for cancer and end up in remission, because you’re not so terrified of your own shadow that you don’t go to your GP when you find a lump and if you do, you don’t take the offered treatment cos needles and meds and stuff are a fate worse than dying in pain.


If you need a pill (or ten) to do all those things, does it really make a difference if that pill is to soothe the neuropathy in your feet so you can walk or soothe your nerves so that you can face the outside world?


Most people who suffer from mental health issues (regardless of the cause) have gone a long and cruel path before they ask a doctor for help. Sometimes the path leads them over the cliff before they see a doc. I doubt if anyone woke up one morning, cowered under the duvet for a few minutes, and decided that they were going to get a prescription that afternoon.


So if someone you know has cancer asks for advice about anxiolytics or hypnotics or psycholeptics – have the decency and respect to either make a suggestion or stfu. If all you have to contribute is yoga, wheat grass and incense then you need to rethink your priorities and pray that you never ever need any kind of psychiatric drugs.


Oh, and if you know someone who has other mental health issues, don’t be condescending, don’t pretend you know how they’re feeling, don’t suggest your stupid zumba class because chances are, they’ve already tried every single shitty idea you bring, and the reason you know that they’re having mental health issues is because they’ve finally found something that works so that they are strong enough and brave enough to tell you.


Be respectful, because their telling you is cos they respect you and think you’ll treat them decently. Do the same in return.