Month: February 2018

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

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.

Sometimes, my brain screams

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Especially now. It screams at night and it screams in the daytime and it feels like it’s trying to take over my brain.

Not all the time, of course. Just every once in a while it starts shrieking and will not STFU. And it’s a bit like the very first time you wrote a computer program with LOOP in it – at least once you would forget to write END and it would keep going until you shut it down. Sometimes you could even get it to do an exponential core dump (probably the wrong terminology but those of you who’ve played with UNIX know what I mean and the rest of you would have to have it explained) and everything would just screech to a halt veeeeeeeeeeeeeeery slowly and you’d need a complete system reboot.

I think we managed to anger a few sys.admins in the old days.

But I haven’t got a sys.admin to reboot my brain. Sometimes I just need to drown the noise and although it’s much more fun doing it with alcohol, music works just as well.

Noise, pure and simple. Real noise. Sometimes you’ll find the perfect album which won’t leave the cd player for weeks. And sometimes you’ll find that perfect song and let it go on repeat for hours on end.

You weren’t really expecting some major surprise here, were you? These two together – damn. Not often two such greats make each other even better.

Play it LOUD. Drown in the music. Just be. Feel the core dump dissolving. Play it again until your mind feels more at ease. Then play it again cos this is such an awesome piece of music.

Sirius café

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I’d heard rumours about the waffles and coffee served to radiation patients at Radiumhospitalet which is the only cancer-specific hospital in Norway. I had my radiation at Ullevål sykehus and apart from the first day, they managed to set up all my 15 appointments between 4 pm and 7 pm which was great for driving but both the café and Vardesenteret. Vardesentre (varde = cairn) are run by the Norwegian Cancer Society and are meant to be a space for cancer patients and their dependents. There are Vardesentre in the largest seven hospitals in Norway and they offer a hand to hold, a shoulder to cry on, ears that have heard the same stories, and coffee.

I need my coffee.

But at Ullevål the Vardesenter closes at 3 pm as does the café, so I had to bring my own.

So when I had my post radiation check-up at Radiumhospitalet I decided that I was going to find this coffee and waffle heaven!

Sirius kafé is run by the Odd Fellow Society of Norway and offer food, waffles and tea/coffee for radiation patients at Radiumhospitalet.

The waffles are donated by Prior and were seriously delicious, especially with blueberry jam! Loads of blueberry jam. And raspberry jam.

Last medical appointment for now. Check-ups in summer and still waiting for cardio, but I felt as if these lights were guiding me into the next part of my life.

Or an alien landing strip.

Especially seeing as Sirius used to be ‘my’ star – Siri (and) us! The dog star, the brightest star in the sky.

Bad hair days are back again

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Chemo gives a wide range of side effects, most of which are highly unpleasant and there is nothing on this planet that can make them fun and there is nothing positive in them.

Strike that. All but one are unpleasant and negative. And I’m one of the few people who probably regards even that one as positive.

But for me, alopecia has never been an issue. I have been looking forward to it. It gave me an excuse to chop my long hair off and colour it bright pink, and I doubt if it’s been bleached this often since I was at UKC and changed my hair colour every week or so. I loved that barber shop downtown and with easy access to Directions hair dyes I had a blast!

I bought a whole bunch of wigs in different colours, lengths and styles and have been having fun wearing them all winter. After all, what’s the point of having wigs if you can’t use them? Wearing a wig means never having a bad hair day, after all. And seeing as people are used to my changing colours and hair styles on a regular basis (at least I used to) some haven’t really noticed that they’re wigs!

My hair has started growing back and I am constantly having bad hair days. Not just because I’m a heavy sleeper but it’s winter so I have to wear hats. My scalp has been fuzzy for weeks – not cute kitten kinda soft fuzz, but fortnight old lambs. The hairs have been growing at 1 mm per month rate. But now they’ve gone all anarchistic on me, so some are growing a lot faster.

And I mean a LOT faster.

Some hairs are several inches long whilst most of it is short. I’ve given up hope that my “cancer hair” will be rainbow coloured and there is no glitter in sight. Nor is there any sign of curls.

It’s just grey on grey on grey.

And bad hair days.

And because it’s growing at different rates and I’m having those hot flashes again, I can’t wear my wigs for long periods cos I get all sweaty and itchy (no, the wig doesn’t itch but having sweaty hair that bends different ways itches).

The big question now isn’t whether I will colour my hair again, it’s how long I can stand this grey-on-grey and/or if I get the hair trimmer out first. If I do, it’ll probably grow at the same rate but it will take a long time before I can colour it – but I might grow completely bonkers looking like this.

Look good, feel better aka grown-up make up!!!

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I’ve never learnt how to do my make up. Not properly. Words like foundation, blush, rouge, day/night cream, brow liner, lip liner scare me. I’ve always made do with lipstick, mascara, eye liner and eye shadow. That’s it. No mess, no fuss.

But when oncology has a quarterly make up course for breast cancer patients and you know you’re probably going to lose eye lashes and brow, of course you sign up for it! It’ll be fun, of course it will, and you might actually learn how to do proper grown-up make up.

Look good feel better is a non-medical, brand-neutral public service program that teaches beauty techniques to people with cancer to help them manage the appearance-related side effects of cancer treatment. The program includes lessons on skin and nail care, cosmetics, wigs and turbans, accessories and styling, helping people with cancer to find some normalcy in a life that is by no means normal.

There are affiliates in 25 countries and in Norway, there are make up courses quarterly at the 7 largest hospitals. If you are a female cancer patient at any of these hospitals I would highly recommend attending one of these courses!

We were a dozen or so women of all ages and make up levels, and the only thing we had in common was our lack of hair. We all got an amazing goodie bag filled with stuff I have never ever owned before in my entire life, which was fun, and we got a great step-by-step demonstration on how to do facials and keep the skin hydrated and look good even when cancer makes you all pasty and bloated and white.

I discovered that my upper lashes have mostly stayed put whilst my lower ones were kinda missing. I can see that my brows are sorely lacking in colour and mass so good to learn the curvature of the brow so one can pencil them in!

 

The goodies are from a variety of companies, thank you to KLF (The Norwegian Cosmetics Association) for make up and thank you to the volunteers who make it possible!

Unfortunately no pics of me made up, cos my flatigue was pretty bad and I didn’t really think about it, but I truly enjoyed myself. I think we all did – in the midst of hardcore treatment and a horrific illness, these little snippets of joy are what keep us going!