flatigue

Three year (end of) chemo long term side effects update.

Posted by

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… 🙂

My silver anniversary was spent offline…

Posted by

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.

 

The downward spiral

Posted by

1

Day 27 after last chemo.

27 days of complete and utter flatigue and an insane heart rate.

Every time I have made a movement, my body has perceived it as having finished a marathon. My entire body has gone all wobbly, heart rate has sky rocketed, and I’ve collapsed onto the closest chair-like object. Regaining control of my body has generally taken shorter time than decreasing my heart rate to something that can vaguely be called ‘normal’.

Life for the past 27 days has mostly been dragging myself from bed to the sofa, watching ancient reruns of Bones, Friends, NCIS and Master Chef (Junior). It’s also been numerous crappy reality shows (pawn shows, designer competitions etc) and Border Security: Australia’s Front Line which is actually kinda interesting/entertaining.

I can’t say how annoyed I was when I – last Sunday, ie day 20 – remembered that I have the dvd box sets of both Buffy and Angel. Coulda binged on them for three weeks instead of crappy daytime tv. At least I now have something fun to watch, as it doesn’t seem as if this flatigue is leaving anytime soon.

My concern has been my heart. An increased HR after exercise is normal – but this has been as far from normal as can be. I yawned and my HR spiked past 140 and stayed there for ten minutes. My normal HR at the hospital has been ca 65. The good thing is that once it passes 130, you don’t actually need to search for a pulse to check – cos your entire body is pounding with blood so you can sit still, close your eyes and just count. Dead easy.

The tricky part is falling asleep when you can feel your heart beating, hard, rhythmically, wondering if this is ever going to end. After a couple of hours of 120+ one tends to give in and take a sleeping pill. It’s weird how the rhythmical noise in a MRI/CT machine sends me to sleep, but my heart making the same kind of noise doesn’t – maybe because something in me is worried for chronic heart problems?

The irony in my mother dying of heart failure when she was 49 – and me now having massive heart problems at 44 – has not escaped me.

The skin on my feet is disintegrating so I got an electric foot file. I can actually pull off large pieces of 3-4 mm thick skin that has just loosened – I know, sounds disgusting – but between removing dead skin, filing, and lathering in massive amounts of lotion, we’re hopefully soon back to something resembling normal.

At least my nails haven’t loosened yet but my eyes are still running.

Massi is back on the road (yay!) so we had an enjoyable trip to the hospital for my next scheduled chemo. I can drive. It’s just the walking to and from car, getting in and out of car, and all that stuff that sends my ticker into a frenzy. At the moment I have three options for getting to the hospital: drive myself, take public transport (out of the question for my immunocompromised body), or be at the mercy of Pasientreiser. Seeing as the early shift take great pleasure in changing orders and sending out cars an hour early, that is no longer an option.

It was when I could shower & get ready in ten minutes. I now need an hour just for showering. So – we drive. The fact that it’s a good 300 m walk from the car park to the hospital should be interesting. Seeing as I normally can manage 10-15 m before collapsing, this will not only be a marathon for me, it’ll be an ultramarathon.

Speaking of which. Chemo brain has run out of power even if heart is pounding on at 130. I love my fake-life. tbc…

Round 5 – running out of steam

Posted by

It’s been a week since my last chemo and if it wasn’t so exhausting, I would want to quit.

Cumulative sucks.

Onset of fatigue on the evening of chemo. Flatigue set in good and hard on Wednesday. There was no effect of the corticosteroids (apart from night sweats). Heart palpitations en masse (pulse: 115-130) repeatedly throughout the day. Fungal infection but this time I was ready for it – after 6 days of Nystimex, the worst was over.

For some reason, very light neuropathy (just tingling in my finger tips) which is a relief. Or maybe I’m just so flatigued that I’m not registering any pain? I am certainly not complaining.

There are a couple of blogs in the pipeline – if I can just get enough strength to sit at the computer for more than ten minutes at a time.

But yes, still hanging in there, still enjoying the sun through the window.