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
			

	
		
	


				
					


	
	

		
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!


https://www.youtube.com/watch?v=LeBTFjSUNMM


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.



			

	
		
	


				
					


	
	

		
The good things about chemo brain are…


				

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Have I written this before? I might have. Knowing me, I probably have.


Who cares? I certainly don’t! My blog, my writings, I don’t make people read, I write cos I feel like it.


This is last year’s sunflower cos it’s COLD and there’s SNOW and it’s ICY and WINTER out. I needed some proper colour!


Anyways… it’s World Cancer Day, so I figured I’d do a blog on a positive post-cancer thing.


CHEMO BRAIN!


Some of you have experienced a close-ish relative: Corona brain.


Chemo brain is mostly shit but as this is meant to be a positive blog post, here’s the fun stuff!


    

  1. You’ll be the best at keeping secrets!
    
Mostly because you’ll forget everything anyone says to you within seconds.
    
This means that if I’ve forgotten something you told me, it’s not because I find it uninteresting; at the same time, if I actually REMEMBER something I’ve told you – take it as a compliment. It means that my attempts at remembering shit have worked.
    2. 

  2. You can read all the spoilers you want from your favourite TV show!
    
You’ll forget everything, it all disappears into the same vacuum, and you can be quite certain that even if you read that your favourite character dies a horrific death, you can watch it ten minutes later and be SHOCKED by it!!!
    3. 

  3. Ummm… I’ve forgotten…
    4. 



In memory of the people we’ve lost so far this year, here’s Ym:stammen.



			

	
		
	


				
					


	
	

		
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.

			

	
		
	


				
					


	
	

		
The lemons


				

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Know your lemons, ladies, and men too.


I found a dimple in my right breast on my birthday, December 21st, 2016. It was suddenly there when I bent over to rinse my hair in the shower. It wasn’t there when I stood up. Bend over, a dimple, stand up straight, nothing.


So I started checking my breasts to see if I could find anything. I couldn’t.


Day one, nothing.


Day two, nothing.


Day three, nothing.


Day eight – a motherfucking mass, the size of a golf ball.


I called my doc.


Christmas holidays so no appointment until January. He sent me straight to the oncologist at Ahus and they found a solid mass, 5 cm across. A week later it had doubled in size. The guy who did the first biopsy said “this doesn’t look good” and I thought no shit, Sherlock.


So…


Even if you no longer like your tits, and think they’re droopy and not as perky as they used to be – know what they feel and look like cos it might save your life.


My right breast became a really lovely perky tit – a tumour the size of a 10 cm unripe orange will do that to you.


So – know your lemons. It’s a pretty awesome site, too.

			

	
		
	


				
					


	
	

		
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!