Friday, 31 October 2014

Expecto Patronum

Last week I had a bit of a whinge about chemo blues. I'd gone in to my 4th chemo last Wednesday (my first of a drug called Docetaxel, or Tax) with the incredible news that my CT scan was clear - no cancer beyond the first lymph node. I came out completely and utterly miserable. I asked others in the Younger Breast Cancer Network group about this and immediately discovered I was far from alone. Tax is generous in dishing out misery, blues, anxiety, oversensitivity, self esteem attacks, tears. The YBCN experts explained why this is. After Tax chemo the Dementors come for you, sucking away your hope and your happiness.

So I've spent the last week commanding "EXPECTO PATRONUM!" over and over again, accompanied by masterful flourishes of my arm.... but still no Patronum.

I'm no fool. I know exactly what the problem is.  Remus was very clear about this. For Expecto Patronum to work, you have to be concentrating with all your might on a single, very happy memory.

How can I concentrate on a single very happy memory when my mind is overflowing with countless very miserable shit? This applies as much when I am asleep right now as it does when I'm awake. I'm seriously getting on my own nerves. I keep finding myself moaning and complaining to people. Every time I try and sit down to write about something positive or purposeful (there's a bunch of good stuff I want to write about), I go off on increasingly negative tangents. Delete, delete, delete. I said a while ago how writing is cathartic. So I've decided that instead of repeatedly trying to be positive, and repeatedly spoiling it by blurting out woes, as if I've got some Annoying Miserable Whinger form of Tourette's, I'm going to do a massive offloading here of everything that's upsetting me. Think of it as a projectile vomit of all the nasties that are making me emotionally ill, into the expansive toilet that is the internet. Clicking on "Publish" at the end of this = "Flush".

Before I get going though, there's one rule, and I mean it. If you read this (and to be honest, maybe you shouldn't, this is just a self-indulgent moanfest with no other purpose than me letting off steam. But if you do...) you're not allowed to aim any sympathy or anything like that in my direction. I'm permitting myself to go full on negative beyond this paragraph because just for now, I need to, but the truth is for everything I moan about own situation, plenty of people have it far worse than me. I'm lucky and I've got loads to be happy about, I just need to have a rant so that I can get back to feeling like that. So, read on if you want, but no response required.

Here goes.

This isn't me trying to stick with a Harry Potter theme throughout this entire post, it just happens that this is my current reality. When I look in the mirror now, this is who I see:

Except my eyebrows aren't so good. Fucking chemo, killing my hair follicles. Fucking cold cap, not working on the top of my head. Without a wig and makeup, I now look like a cancer patient who is trying to look like a balding man who can't accept his hair loss. Great. Makes me feel just fucking great. Might as well just go and hide in a dark cave for the next few months.

I'm sick of being ill. I'm especially fed up because every time I get better, I inevitably immediately get ill again. And I have no choice. I've been horrendously physically sick. Half the veins in my arms have become hardened, inflamed, weak and burst. I've passed out several times. I've had a cold and cough that lasted a month. I've got oral thrush in the back of my mouth and throat which fucking hurts, a LOT, and has given me a new cough to boot. I've bled from places I shouldn't bleed from. I've had hardcore indigestion. Fuck knows when I last had a decent night sleep. I've had endless days where my skin hurts. Endless days where my bones hurt. I'm tired. I'm sick of being ill. And I have to put myself through this twice more. And that's before I go in to hospital and let a surgeon spend 12 hours on me with a knife.

I'm sick of having nightmares about my mom. I can hazard a good guess as to why this has kicked off. It's almost 2 years since she died, so I guess it's on my mind. The week she died was a week from absolute hell. I fucking hate cancer, and I hate what it did to her. After 6 years of fighting cancer and suffering through the endless bullshit that is cancer "treatment" this is what happened. 3rd November she came round to my house with a headache. 5th November she was admitted to hospital and had a brain scan. Late that evening I was told that her cancer had spread to the lining of her brain and that she'd have maybe 3-4 months to live. 6th November she was unconscious all day - she'd had some seizures in the night and was knocked out on anti-seizure medication. 7th November I spent the day with her in hospital, pretending everything was ok because her oncologist wasn't at that hospital that day to talk to her and explain. So 8th November is when she was told herself that the cancer had spread to the lining of the brain. She wanted to be left alone, and went to sleep. 9th November she died. That's it in a nutshell, but the full version of that story includes a lot more horror (like being stood outside her hospital room talking to a nurse, to hear the nurse who was in with my mom call for help and set off loud alarms which had about 10 other nurses and doctors race in there, while I am sent away to the "quiet room").

Unfortunately, if I dream about my mom it's never nice. It never gets to be a nice dream, where something nice happens. It's always weird and stressful. And I've been dreaming about her every night. This morning I woke up at 4.44am. I spent a couple of hours lying awake, too unhappy to get back to sleep, too ill to get out of bed. When I finally did manage to get to sleep, it was for a staggering half an hour, where I had a dream that my mom had humiliated me in front of my friends, and I woke up crying. Just fucking great.

I'm sick of cancer and chemo taking over my life, and me. I don't want to be a cancer patient. I want to be me. I want to be the best version of me. I want the freedom to be able to show me at my best. But all I've got to offer is me at my worst. I don't even like myself right now. And I feel like an idiot. I'm normally good at reading social cues but I dread to think how many times over the last few months I've misread them. Can't distinguish sympathy and kindness from anything else any more. I'm an idiot. I'm annoying. I'm weak. I'm sorry for every time I've been an irritating nightmare. Every time I've been a fucking burden. Every time I've embarrassed myself. Every time I've been too self absorbed to pay attention to others. Every time I've not been able to get a grip.

I need to go away now, have a massive cry, and then rebuild myself. Start again.

(Remember the rule now.)



  1. You are allowed to feel all of those things hunni. It will end I promise you. I am on the young group too and today its a year since my last chemo. In some ways it feels like yesterday and in others it feels like another life. Look to the new year and the start of rebuilding yourself and finding out who you are post cancer. Big hugs xxx

  2. Thank you Gill and thank you to all my lush friends who ignored my rule and went ahead and spoiled me with kindness today.
    I think!

  3. I wish I could take all this away from you! I wish you felt better! Tell us everything you need to. I would rather have authentic, where you are right now Sarah, than positive thinking bs! I am with you in my heart and mind, by your side, holding your hand.

  4. Thank you Cindy! I'm good now. A big rant helped, followed by getting dressed up and going out and being looked after big time by my fantastic friends from work. Just goes to show you can handle anything when you are surrounded by amazing people.
    Lots of love xox

  5. Sarah, I'm so sorry that you are going through cancer hell. It's so damn difficult to be a cancer patient. I'm sending you virtual hugs.

  6. Hi Beth - thank you so much!
    I'm over that meltdown now (although I'm sure there'll be another one at some point!)
    2 more chemo to go - once that's done, as far as I'm concerned, the worst of it's over. NOTHING can be as bad as chemo!