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What is cancer really like?

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This is not a pity post, and once again, if you leave me any sad messages I will unfriend you 🙂 I write this so that people will know what it is really like as I often get asked what it’s really like. Also, because I still get people who come to me and ask “are you not being a bit too positive about this all?” My answer is a solid no. I don’t live with the unicorns, I know very well that stage three cancer can kill me. I ask you; what will moping around bring me? How will that serve me? Life really is like a set of Lego, just as in the first Lego movie. It comes in a box with a picture of what it should look like and a specific set of pieces and you get all excited and then your 5 year old goes and builds something completely different. And you do sometimes feel like glueing the pieces together so the set can be, well the set it was meant to be! But what would be the fun in that? And where would be the learnings?

Hospital Conversations
A while ago I ended up in hospital for neutropenic sepsis, long boring story. And the conversation below started off the back of an enormous backache I had (off the back of backache…see what I did there?). Anyway, this pain was from my bone marrow trying to make white blood cells. I had this (insert your own word here) conversation with a nurse:
Me: “please can I get some medicine for pain? I can hardly open my eyes and I don’t know how to sit or lie my back is so sore”.
Nurse: let me just take your blood pressure. (To preserve this gem of a conversation I dictated it to myself right after it happened. What my phone heard this sentence to be was ‘let me just take your baby’ The irony kills me as it was nearly on the same level in the really really bad department).

Nurse leaves room and 20 minutes later I ring the bell. Another nurse appears. I repeat my plea for pain meds (my phone originally heard bayonet instead of ‘pain meds’. A bayonet would have been more appropriate). “Oh” she says, “let me just take your blood pressure (baby) to see if you’re allowed to have medicine”.
Another 20 to 40 minutes pass and another nurse appears and again I ask for drugs and again I’m told that they’ll need to take my blood pressure which at this point surely must be very fucking high. I whispered ‘what the actual fuck’ into my phone.
I never did get that medicine and I have all my babies and no bayonet to attack people with. But when the oncologist did her rounds the following day around midday the following happened (some of it may have happened in my head but sadly it’s mostly true):
The oncologist: “bla bla clever medical stuff and then “I’m prescribing you something proper for pain.” (I may have added the word proper here myself). “The injection we gave you to boost your white blood cells affects your bone marrow and this can cause severe discomfort and pain.”
Me: (feeling like unicorns pooping golden glitter and ice cream twirls with chubby little babies laughing as they slide down multicoloured rainbows). Finally someone who gets it. But three hours later there is still no meds and the small point of progress I’ve clawed myself to disappears from sight as I take 20 steps back.

While I wait for the line of communication between nursing staff and the pharmacy to get their shit together I was either going to die or develop a whole new infection. An infection that would take a whole new day to be diagnosed and another half a day to get meds for, it’s like technology – you just can’t stay ahead.

At 3pm ish that day I’m lying in the foetal position, rocking my bum in the air in an attempt to manage the pain.
Nurse: (knocking) “Can I come in?”
Me: “no, I just pressed that button for fun because I’m so bored”. (This in my head of course). “Yes, please can you follow up with the oncologist regarding the meds she prescribed?
Nurse: “let’s just take your BP? How do you feel?”
Me: (muttering from under the covers, still rocking with my bum in the air): “well, my bone marrow feels like it’s a small child labourer in a factory deep in China and it’s being completely overworked. It’s bloody sore. My head feels like I’ve partied at a loud techno vibe type place and took loads of drugs and like no amount of water or painkillers could ever help. I sweat and then I shiver. I’m starting to think that explaining religion to my kids would be easier than this.”

30 minutes later the button gets pressed again the way you would press for the elevator to arrive when you’re running late for something. On a rational level you know that multiple pressing will get you nowhere but your reptile brain just won’t let go.

Me: (gritted teeth) “The oncologist said she was going to prescribe some meds. That was a few hours ago. I’m happy to call her myself to follow up?” This seems to spark some action. Snail action, but still.
Another nurse appears: “Dr ordered a Voltaren injection for you honey.”
Me: ”Oh thank goodness, can I kiss you? Any idea how long it will take to get here? Having to come all the way from downstairs on its own and stuff.” She either really does not appreciate my attempt at a joke or she hates sarcasm on principle.
Nurse: ”I can’t say, it has been ordered. But first let me take your BP”

30 mins later I press that button on the downswing of my rhythmic anti-pain rocking: “There was going to be a Voltaren injection?” Nurse takes my BP. Nurse disappears. Luckily I stopped holding my breath or I would have passed out.

At 4:30 pm the medicine arrive! The nurse profusely apologizes for the painful injection which is sweet of her but kind of like comparing a torn finger nail with childbirth.

If ever you don’t know the answer to anything, just ask if you can take their BP. It will properly confuse or impress your audience and nobody will ever know that you never in fact, knew the answer.

Needles
Endless is all I can say, in the stomach, in the bottom, in the leg (5 minute long injections dude). Bloods before every chemo, bloods in between. Veins that blow and get hard and can’t be used. Sadly, this part does not get easier, but rather, and strangely, harder every time.

Kindness of Strangers
I’ve gone on and on about the kindness and care of friends, and I will never stop going on about that. But then there is the kindness of strangers that totally restores ones faith in humanity. My vet for example…

Beast has this erm…issue, where he has to have his anal sacks squeezed every couple of weeks. It is a disgusting process where I (I always seem to end up taking this one for the Jackson team), hold Beast’s head in a vice grip while the vet slaps on some elastic gloves and then proceeds, with his head dangerously close to Beast’s butt hole, to squeeze those glands. I can never explain the smell. Ever. And after the first visit of this sort, this kind vet looked at my lack of hair and said ‘you must be going through a rough time’, and then he gave us a huge sympathy discount. Discount. For doing a job that is on par with cleaning toilets and washing corpses. He is not a sexy man, but as a close friend said, that alone makes him sexy. Kindness is very attractive indeed and it makes my heart warm.

Until I then bumped into said vet at Woolworths with a trolley full of groceries and felt really guilty and small for accepting the discount. My head hung low that day.

Side Effects
Kai asked me the other day what the Afrikaans word for side effects is and ‘Kant Konte’ spontaneously came to mind. Of course I did not say this out loud. Instead I said “oh look, there’s a lion” and cleverly distracted him. I’ll make this quick as it’s nasty. It’s like the side effects are constantly trying to steal the show away from the actual cancer. Assholes do that. Please don’t feel sorry for me, if you are a parent who takes your kids shopping you probably go through worse every time you enter the seventh circle of hell (aka the check-out queue at most supermarkets and stores).

If any of you are musically inclined then please turn the below into a rap song.

Vomiting in the Neighbour’s yard
Brain like a piece of lard
Digestive hassles of every extreme kind
Sometimes the cortisone makes me go blind
A small truckload of meds
They’ve become like pets
Metallic mouth, I can’t eat anything
I’m so swollen I can’t wear bling
Steroid rage,
really on chemo days I should be locked in a cage
No hair, zero surprise there
Thin skin that tears in weird places
When I go shopping I can see pity on people’s faces
Tongue sores, mouth sores, lying on floors
I can draw my eyebrows any shape I want
If I want I can look like a scary ***
Tingling in my hands and feet
For 5 years now I don’t eat meat
Veins that blow and misbehave
All I do is smile and wave
Everything tastes like old metal
Let me lick this rose petal
Restless leg syndrome
Every aching bone
Nose bleeds like the Stranger Things chick
But without the superpowers, just sick
One day when I’m old I’ll sit with Kev on our porch
Because fuck you George!

 

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2 Comments »

  1. Dear Karen, we haven’t met but i worked with Kevin in 2010 at World Cup. I don’t know much about what you are going through (this is not a sad post!) other than you so well manage to put words on some things that my sister went through some years ago (different story but bad too) that make me laugh, cry and remind me of what she said at the time. So big shout from Switzerland and Fuck You George in every single language I can think of! Xx

    Like

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