Month: October 2020

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… 🙂