long-term symptoms

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”

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!

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.

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.

Hormonal bitch, anyone?

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I’ve always had hormonal issues, which is why my GP put me on Diane/Dianette som 20-odd years ago. It’s an estrogen emitter which has somewhat alleviated my androgen hormonal issues.

But even taking estradiol on a daily basis, my estradiol levels have always been extremely low. Looking at my blood work for the past decade I’ve always had 0.1-0.2 when my levels should have been >1.0.

According to Dr. A-hole (more of him in a blog to come) my tumour was probably mostly progesterone sensitive rather than feeding on estrogen, which makes sense – why would I get a humongous tumour that feeds off a hormone I hardly produce?

I’m taking tamoxifen now, and will be taking it for the next ten years. Tamoxifen (if you read those older posts) inhibits the production of estrogen thereby reducing the risk of a new estrogen-sensitive tumour, which is great! If your tumour fed off of estrogen to start off with.

In men, tamoxifen can be used against infertility and increases testosterone production.

Women treated with tamoxifen have been found to develop primary tumours elsewhere in their body (though a link has not been found – though I doubt if anyone has done much to look for it).

After starting on tamoxifen in December, I’ve been growing a beard. That hair is growing much faster and better than anywhere else on my body. Stressing as I was after talking to Dr. A-hole, I asked my nurse about this. She checked with an oncologist and could tell me that this was a perfectly normal side effect of tamoxifen.

So basically, my hormonally crazy body which has always produced too many androgenous hormones (progesterone and testosterone) is now producing even more of them.

Guess what. “However, PR action in breast cancer is grossly understudied and remains controversial.” (PR: progesterone receptors). “women with high testosterone serum levels appear to be at a significantly increased risk to have or to develop breast cancer within a few years”

“Premenopausal concentrations of testosterone and free testosterone are associated with breast cancer risk.”

Am I scaring you yet? I’m certainly scaring myself here.

Basically, I had a hormone-sensitive tumour which most likely wasn’t estrogen-sensitive but rather androgen-sensitive because my stupid body has always produced loads more androgen hormones. I am currently on a medication (that I am to take for the next ten years) that decreases estrogen production (a virtually non-existent production to start off with) and increases androgen production (if hirsutism is a common side effect, then increased production of androgens is the cause and therefore another side effect).

I am on a medication that is increasing the hormone imbalance in my body, the very same imbalance that gave me the darned cancer to start off with.

I’m no doctor, but that sounds more like they’re increasing the probability of me getting breast cancer again – or cervical cancer (which is a well-known side effect of tamoxifen).

I have my first set of check-ups in June. Unless I freak out completely before that and demand a full blood screen and appointment long before. At least I have sufficient grounds to demand a mastectomy of my so-called healthy breast. I don’t believe for one second that it is, or that I won’t find a tumour there in a year or two…

Stress levels and heart rate rising – AGAIN – here’s some stress-relieving, comfort music:

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.