Author: Siri

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!

Life with a tech savvy kitty

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This is Lea.

Lea is my rescue cat who was hit by a car twice, survived against all odds, and is now the weirdest and cuddliest cat ever. But just to me. She hates just about everyone else.

Lea can take off for weeks at a time, but when she’s home, she prefers being on my lap at all times. Which can be rather challenging if I’m working on my computer and she’s all I WANT CUDDLES. Sometimes she’ll be satisfied with just lying here. If I go somewhere, I have to remember to turn off my computer otherwise she’ll happily chat with anyone listening or update my status on Facebook (best case) or make system changes that aren’t always easy to fix (vertical screen is one of them).

She’s also a kitty with a mind of her own, especially when it comes to music.

As I am now dipping my toes into music journalism again, it means that I have to listen to a lot of different music from my computer. Editing concert photos and listening to new music is a form of multi tasking that kinda works for me.

I’m just not sure how to read her actions on these?

Lea snoring while I edit photos from Ministry @ Vulkan arena last June, listening to Wandering Stars. Or rather, snoring but twitching her tail.

I’ve been tipped off about an interesting Norwegian band called Sølvkre, which kinda reminds me of Nine Inch Nails’ instrumental work. This is Lea’s response to Ghosts.

I left Ghosts on and this is what I came back to. Culprit had hidden.

I am slightly concerned that she’s getting ever closer to cracking the code of net shopping. When I get a parcel in the post, I never know what I’ll find when I pick it up (also because I sometimes order stuff and chemo brain blocks it out so I get surprised by someone sending me a pressie!!!!).

Does your cat order stuff? Is the whole Paypal one touch thingy a really bad idea?

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

Bad wig choices

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Just because I have a perfect skull shape (it looks good even completely bald – at least there’s one good thing about this stupid body) it doesn’t mean that all wigs look good on me.

This is the “OMG the wigs that I should never have even considered buying”-blog.

They probably would have looked better if I had taken the time to brush and style them, but I’m a plug-and-play kinda gal. And I doubt if any amount of styling would have made these look good one me!!!

Red curly looks like someone butchered a sheep, let the blood infuse into the wool, and threw some of it on my scalp.

This is the only wig that was quite different from the photos in the ad… what happened to the colour???

All new and shiny. I don’t think the Marilyn-look is for me…

I don’t really have a lot to say about them. If you want one or more of them, I’m giving them away for p&p!

Norske kreftstudier

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Som tidligere nevnt finnes det til enhver tid mange studier/forsøk man som pasient kan være med på. Her finner du oversikten over godkjente kliniske studier i Norge.

Om du er bekymret for kvaliteten på behandlingen da, er norsk lov veldig klar: som studiepasient skal du ha minst like god behandling som konvensjonell. Dersom du ikke responderer tilstrekkelig på forsøksregimet skal du tilbake på konvensjonell behandling. Om du på noe tidspunkt føler at du ikke har god nok behandling, kan du avslutte din rolle i studien.

Lurer du på hvordan utprøving av medisiner faktisk skjer? Det er fire hovedstadier, som beskrives enkelt og greit her. Generelle forskningsetiske retningslinjer er også ganske forståelige.

Forskrift om klinisk utprøving av legemidler til mennesker sier:

En klinisk utprøving kan bare igangsettes dersom “det kjente nytte- og risikoforholdet er veiet i forhold til den antatte gevinsten for den enkelte forsøksperson og for andre nåværende og fremtidige pasienter”

Lov om medisinsk og helsefaglig forskning (helseforskningsloven) sier:

Forskning på mennesker kan bare finne sted dersom det ikke finnes alternative metoder som er tilnærmet like effektive.

Før forskning på mennesker gjennomføres skal det gjøres en grundig vurdering av risiko og belastning for deltakerne. Disse må stå i forhold til påregnelige fordeler for forskningsdeltakeren selv eller for andre mennesker.

Forskningen skal stanses dersom det viser seg at risikoen er større enn mulige fordeler, eller dersom det foreligger tilstrekkelige holdepunkter for positive og fordelaktige resultater.

Her er en liste over brystkreftstudier som foregår for tiden og er åpne for rekruttering:

Vi har alle hørt en eller annen skrekkhistorie om pasienter som får langvarige skader og smerter etter å ha deltatt i en studie. Selv med all verdens beste etiske retningslinjer så kan man ikke sikre seg 100% mot at noe går galt. Sånn er det dessverre når man tar tradisjonell/konvensjonell medisin også. Vi som har kreft vet at uansett hvor god behandling vi får, er det en mulighet for at vi får faenskapet på nytt – enten fordi kroppen vår er genetisk feilkoda eller som bivirkning av behandlingen (fjernspredning, underlivskreft av tamoxifen eller hudkreft av stråling er velkjente bivirkninger).
Det som (for meg) er viktig å huske, er at det er kvinner som har gått foran meg og vært med på utprøving av all behandlingen jeg får. Det er kvinner som har sagt “jeg vil være med og bringe brystkreftbehandling videre for at flest mulig skal bli friske”. Kvinner som jeg har den største respekt og er evig takknemlig for.
Deltagelse i en klinisk studie er, for meg, litt som å donere blod. Vi er fryktelig mange som ikke kan donere (for egen del – fordi jeg “tilbragte mer enn 12 måneder i Storbritannia totalt mellom 1980 og 1995”) og det er mange som er livredde nåler og blod og som ikke donerer av den grunn. Det er ingen som har noe med hvorfor man ikke donerer – og om du velger å delta i en studie eller ei er også helt og holdent din avgjørelse.

Edie Sedgwig

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The one thing that ‘everyone’ knows is that if you get breast cancer, you get chemotherapy that leads to alopecia. If you don’t know anything else about side effects then you do know that. I was never worried about that part of it and thought it would be a fun way to “reboot” my hair!

Shortly after I told my closest friends and family that I had cancer, I got the most amazing purple wig in the post from Kay. I love my darling sister! It was absolutely perfect and really made my day! Purple goddess, that’s me. And I love it! Such an amazing colour and matches my nail varnishes, too.

Lucky are we who live in Norway and have chemotherapy that leads to alopecia. We get a requisition for “headwear and wigs” so that we can cover our bald heads with something nice, without having to pay for it ourselves. I made an appointment to visit Jalvad parykker in Oslo. Great service and we found the perfect wig for me.

Wigsafari with June. First time at Starbucks (OMG I know!!!!!) and fancy new hair. Photo: June Ø.

The fun thing about having had every single hair colour and do possible is that no matter what kind of wig, people are always going to think that this is your real hair because it probably has looked that way at some time or other. This one was nice and short, had a good snug fit and looked good. And I’ve had that hair colour and style on at least one occasion!

Not that I used it much. I rarely used any wigs at home. Far too hot! But at least I learned that wigs are basically all the same size so I could safely order some from overseas.

I went a bit nuts at Rosegal and have a number of wigs from them. I’ve since read several complaints about their web store, but I’ve always received the items I ordered within an “acceptable time period”. I do live in Norway, after all. And I absolutely love my fake hair! It doesn’t even look fake! I know that some women are worried that ‘everyone’s going to see it’s fake’ if they get a synthetic wig, but it’s not like that at all. Just don’t sit too close to an open fire – and don’t open the oven door – and stay well clear of candles.

Cos it’ll, you know, melt.

I used my “proper wig” a few times and then I got Edie. I’ve been a fan of Warhol since forever – after all, without him there would have been no Velvet Underground. I found this silver one and I just had to have it. So this is Edie Sedgwig. If you don’t know who Edie Sedgwick was, you’ve missed out on important cultural history! She was one of Andy’s superstars in the Factory.

Edie was fun. Edie made me feel colourful. Edie gave me OAP ticket prices on the bus. I even got an extra Edie so I can make an even more fluffy version!

The problem with wigs is that you have to wash them, just like ordinary hair. It’s fairly easy – at least for normal people it’s fairly easy. One bowl with shampoo & water – gently wash – leave for 15 minutes. Rinse. Bowl with balsam water. Hang to dry.

The only problem is that when you’re crippled with neuropathy and fatigue, there is no way you are able to stand let alone actually do anything.

I did the only smart thing: changed wigs. Which was great fun!

I got this really nice steering wheel cover from Sverre for my birthday. It’s lovely, nice and warm in this freezing cold winter, in a lovely black and pink floral pattern. And it matches Melanie perfectly! Melanie Martinez appeared on some talent show and sings, and is famous for her two-toned hair.

Personally I prefer Venus the chimera cat. But you already knew that, didn’t you?

Ten half-inch nails

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Did you know that the only difference between nail varnish and nail polish is your geographical location? Varnish in Europe, Polish in the US.

Whilst waiting for my nails to grow long enough (at least the healthy bits) so that I can start using some fun colours instead of nails that look sick and infected (which is why I can’t lacquer them regardless of word – I need to keep an eye on their growth and health) I decided to sort these small bottles of heaven. The non-onycholised parts of my nails are approximately half an inch but the healthy bits are half that…

I love my purples. I honestly didn’t think I had that many. On the other hand, ten bottles, ten nails, that should be fun to try out sometime!!! Both colour and quality. Hopefully I should be able to brighten up my day in a couple of weeks.

I am getting slightly impatient here. Impatient is never good.

Four blacks. The Barry M is actually an effect varnish. I love Barry M, British label, cruelty free since 1982, awesome varnishes! It makes a nice crackled effect. The other three I bought mostly because I was preparing for onycholisis. There are several things one can do to try to prevent it – whether they actually work (or why) is a completely different matter. Using nail strengthener, dark varnishes, ice baths whilst getting chemo are common suggestions. I didn’t try the ice bath (mostly cos I didn’t hear about it until it was too late) but I used nail strengthener, black as base coat, and a multitude of colours on top. Why be dull!

But I bought three because I’d forgotten I’d already bought one, and besides I’d put it in a really smart place so two of them vortexed into a different ‘verse. They resurfaced a couple of days ago.Barry M’s crackle varnish isn’t the only effect varnish available. Metallic and holographic lacquers are readily available and make your nails sparkle in the sun! You can even get lacquers with bits of sparkly confetti. My two issues with these is that the ratio varnish:sparkles is so off that you need at least 10 coats to make a difference – and those sparkly bits seem to be super-glued to your nails for eternity.Reds and pinks – I have several of these, too. Not that I use them a lot but sometimes one needs to think pink.

I haven’t forgotten about the gorgeous blueish fuchsia that I won from Tone Lise Akademiet‘s advent calendar! This is one I am truly looking forward to testing. It’s perfect for my gorgeous fuchsia wig!

These are the last of the lot. These are more for special occasions rather than fix your nails for the coming fortnight!

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