Wednesday, September 6, 2017

The Election looms...some thoughts.

Disclaimer: These are my opinions, you are not obliged to like them. I don't mind you arguing them as long as you remain civil. If you are a dick to any of my friends in comments, I will verbally eviscerate you.

EDIT: Well I'm part way through one topic.... this is clearly not a one off blog, but will have to be a series. Ranging through various areas of government purview.

I expect a shit tonne out of our new government, to achieve it all they'd need to find some money - there's a couple of very good places to get this money, but certain people are very reluctant to even consider either one. We'll get to that later.

A little bit of what I feel we need to do to make this country better than it has ever been before. As good as the *good old days* but without the raging misogyny & rampant racism.

Let's start with my major bugbear. Education.

-Teachers are not paid enough, and have to work far too many hours. We need a better student to teacher ratio in all schools and we need to find a way to make sure that ALL SCHOOLS PROVIDE EQUAL OPPORTUNITY to their students. I shouted about this. It matters. In our current situation, low decile schools are underfunded and the families of students cannot afford to make up the short fall.
-We need to provide food options in schools with students struggling with poverty, students who are not receiving sufficient nutrition cannot learn at the same rate as the properly fed.
-Schools need good fun programs as well as good learning programs. Music; Outdoor and Indoor sports; Something like a Wii system for the more gamer oriented for fitness and coordination, without the stigma of being crap at sport.
Subject material taught at all levels need to be re-examined. Primary school & Intermediate schools should be about learning basic life skills. Yes Math & Reading & Science, but also cooking, housework, basic DIY, gardening and last but definitely not least COMMUNICATION. All the things that prepare you for actual day to day life. I've probably missed some. Comment away. Then you hit Secondary School with basic skills to look after yourself and High School can focus on building your knowledge base. Hagley Community College is a great example of an excellent selection of learning possibilities. There young adults get a chance to take a look at a lot of options and maybe get a feel for what they want to become.
-Get rid of BLOODY NCEA. Or at least make it into something that works, but given how bollocks it appears to be scraping it altogether and building a better system seems the better way to go.
-NO MORE CHARTER SCHOOLS, and get rid of any currently operating ones that are not achieving at an acceptable level. Where acceptable is decided by actual education experts not twatty Ministers who KNOW NOTHING JON SNOW.
-Tertiary Education needs to be much cheaper or even free (there's a part of me that doesn't want to admit it but NZ First's idea "Introduce a universal living allowance, and a student debt write-off scheme that would give students free tertiary study by requiring them to work in NZ for the same as their length of study." is actually quite appealing to me. It encourages students to stay here using the skills they learned here for at least a while to get their debt written off. And therefore, discourages students getting their degree and disappearing overseas with their new skills, leaving us with a skill shortfall. This could also be addressed by doing something about the fairly shoddy entry level salaries. What's the point in staying here if you can nick off overseas and earn enough to pay off your student debt in short order and then be much better off?

Let me explain why I think we need to make these changes and why they matter so much to me. Because I believe (and suspect if I could be bothered looking there would be science to back me up - I'm so freaking lazy, and this is getting super long already) A high level of education across the population makes for a happier and healthier public. It lowers crime, and therefore prison populations. It allows people to be pickier about finding a job they actually WANT to do rather than just taking what they can get. When did we start thinking any old job would do? Why shouldn't we all have a reasonable shot at being happy in our work? Yes, in times of desperation, you take what you can get - but doesn't it feel to you like it's been that kind of desperation for a long time now. Nine years at least. *Zing*. There are so many areas that I very strongly suspect will be improved by higher levels of education across the population. Household economics. Of course poor people suck at budgeting (*not all poor people*) most of them haven't been taught how to budget properly, and their income is low enough that there is no buffer for unexpected situations. Mental Health, how many people in this country are depressed because they can't work / hate their job / are ill enough that certain work is awkward but with the RIGHT help would be able to find work and become productive again / because poverty is squeezing them tighter and tighter / because hospital waiting lists, even just to see a specialist for POTENTIAL diagnosis are ENTIRELY MAD/because they could be MORE than what they are and they know it?

Aside: If I really wanted to watch a few politicians go through the motions of pretending to see what it's like to be poor, forget this spending a night on the streets bollocks - the thing I would like to see is for them to actually stay in there normal home situation, but with only just enough to make it work, or even a bit under that. For let's say 8 weeks. That should give them the opportunity to see all the fun of robbing Peter to pay Paul and suddenly having a bill you don't have spare money for. Maybe sneak in and break their car so they have to have it serviced. Enough food budget for basic food for the number of people in the house. Because they learn nothing until they have to take away a need to pay another need. Until the kids are whining that they're bored with marmite sandwiches. And because they can't have whatever they want whenever they want. It's tiring, and depressing, saying no to your kids all the time. Saying, I'm sorry that's all we can afford. I can only hope the get a nasty cold or something so they can know the joy of feeling like total garbage but knowing that going to the doctor means half (sometimes more) of the weeks food budget gone. 
No more free lunches at work. Because seriously fuck all places provide any kind of free food to their workers. The best place I ever worked provided fresh fruit every day and sometimes some treatier things. It was not only wonderful it also quickly identified people who were struggling financially. But they are the exception to the rule, most workplaces don't give a rats ass if you ate lunch or not.
No more maid to clean the house. No pool boy or cook, if you're up to that level of wankery. No extras. Just you and your immediate family, with not quite enough money each week to get everything done.
Don't tell me I'm exaggerating - almost every beneficiary in the country is living like this, some in much worse situations. I just had to mess about moving money around and putting off payments to make sure the cats insurance payment went through. (Tell me I shouldn't have a cat then... she halves the amount of pain medication I need to take, and gives me unconditional love when I need it. I need a cat.)

That was WAY more than enough aside. This has been part one, in what at this rate may be an infinite series of, we can do better, political outbursts. No, I'm not telling you where the money is coming from yet. I'm sure some of you can figure out the 2 primary options without much difficulty.

Tomorrow: The Environment & Climate Change. Please be aware that suggesting climate change is not a thing may lead to mockery.

Peace. Out.

Thursday, July 13, 2017

Pick your battles

Someone said to me today. Pick your battles. But the interesting thing is: I was. 

I was very deliberately picking this battle, for many reasons.

A celebrity post on Instagram. It was a pretty cool video of a guy doing some form of dance-o-batics on the F train. 


There was a woman sitting on her own, minding her own business, trying to read her book. So intently trying to read her book that I suspect she was actively trying to avoid interacting with the dude and his cool dancing. Which even he seemed to get - there's a point were he knocks her book and she's forced to rearrange herself and looks up, and the dude apologies [I think, it's tricky to tell exactly what was going on]. 

But Jonny Lee Miller felt the need to tag this post [and another of the same guy straight afterward] suggesting that she needs to look up. 1st post Instagram Link #1 #jeezladywiththebooklookupforasecondthiskidsprettygood Yeah, the young man is pretty good, but does that actually create an obligation to watch?  No, no it doesn't. You don't know what her reasons are for not wanting to watch, so maybe assume she has some and leave it alone. 2nd post Instagram Link #2 #mustbethebestbookeverwritten 

Jonny, I love you dearly & yes Jonny I get that you were just messing about. But Jonny do you get that you have no idea what her situation might have been? Do you get that she has NO obligation to watch, appreciate, give any kind of a fuck, if she doesn't want to? 

This comes under the same heading of the several zillion guys every day who feel the need to tell women to smile [obligatory *not all men* to shut that irrelevant argument down before it starts]. [less obligatory but because I know the truth *yes, some women too*].

I said I picked this battle on purpose, I did. Because another poster also jumped in to defend the lady with the book. And Jonny for reasons I cannot fathom threw the sexism card at her.... Um what? All I can say is, she didn't seem like she was being sexist, but now you kinda do pal. I think he misconstrued what she said, I hope that was it - and that maybe this can be a learning experience. Maybe don't jump in with both boots 'til you're sure of what you're doing

Total strangers may be super entertaining, time may let me find out that they're the nicest guys in the world. But time has already told me that it's actually pretty tricky to tell the good ones from the bad, and that the bad ones can turn really really bad very quickly. It can turn from hey girl lift your head out of that book, to DO AS YOU'RE FUCKING TOLD, BITCH, in the blink of an eye. 

And guys who are standing up to say, hey he was only trying to be friendly are not helping. Maybe help with, hey dude - it's no big deal, maybe she's not in the mood for your act today. 

If I just want to be left alone, then insisting that I drop what I'm doing to salvage  your ego seems a bit self centred and sad.

I hate to blow a good joke, but maybe think about what the rest of the situation might be and realise that if the joke isn't funny for the person you're ragging on, then maybe it SHOULDN'T be funny for everyone else. Maybe just leave it out.

Peace. Out.

Monday, March 20, 2017

Unclear on the consent*

We discussed consent issues around a single example last night, example follows:

"Mary and Bob know each other from class, and they decide to go out together one evening. They go to a bar, and each consumes several drinks. Mary goes to the bathroom, and when she comes out she has her shirt untucked and her bra is off. She suggests they go back to her room and order dinner in. They eat dinner and lie next to each other on the floor. Bob caresses her face and kisses her. Mary enjoys it and kisses him back. Bob then carries Mary to the bed and kisses her again. Mary realizes what is happening and says, “No, I don’t want to do this.” Bob removes all of her clothes. Mary mumbles, “No,” very softly and then realizes that she will probably have to give in."

Now to me, this incident is fairly straightforward... Mary was interested in SOME sexual play, however, no conditions for boundaries had been established prior so they are in what I like to refer to the "Stop carrying out your intentions and watch for my signals" zone (it's a nautical flag, for those who wonder where that phrase came from). IE: don't assume you know where this is going, and pay attention to what your partner is doing/saying. Mary pretty clearly backs the fuck up to NO once it becomes obvious Bob wants sex. Mary never said one way or the other whether she did, but her NO removes any implicit consent there might have been. From here on out it is straight up rape.

Several interesting things came out of discussion of this scenario. Firstly it seems like people are willing to see her initial actions OVER her later words. There's a lot of 'the implicit consent in removing her bra' (if that's consent for something then I dare a man to wear an underwire all night without getting bored with it and stuffing it in his manbag).
A lot came back to she lead him on (variously, drinking with him in the first place, removing the bra, going back to her place... all of which don't actually involve consent at any point) setting aside what may and may not be consent.... who gives a shit, when things got heavier than she wanted SHE SAID NO. The end. Consent can be withdrawn at any time.

Honestly the conversation we were having felt a little like beating my head against a wall. Because *side b* kept bringing the debate back to metaphors to try to clear things up from his perspective, but without understanding that apples are not oranges. A driving situation will literally NEVER correlate to a sexual assault situation. Rather than discussing things that were already on the table, metaphor after metaphor was presented to show why the Mary and Bob story was unreasonable.

My personal unfavourite of these involved removing cake consent from a 5-year-old and expecting said 5-year-old not to chuck a fit. 

Five-year-olds are not grown-ups, the expectations on their ability to control themselves is a bar FAR lower than that of an adult. And most importantly HUMAN SEXUAL BOUNDARIES ARE NOT CAKE GODAMMIT. 

Consent should be an easy issue. When you have consent you may proceed. When you don't you may not. If you had consent but it is then removed you no longer have consent and need to stop (by all means feel free to discuss this at this point IF YOUR PARTNER IS COMFORTABLE TO, but remember that they have every right to change their mind about this and pleading, coercing and threatening ARE NOT THE SAME AS DISCUSSING. Anything that attempts to bend the will of the other person should be OFF THE TABLE RIGHT NOW.)

The TEA consent guide remains my favourite for establishing just how OBVIOUS consent rules should be. Here is the TEA consent guide 

I understand that a lot of people are very confused by the consent subject, probably not aided by the heavier end of the scale, which even to my eye feels rather like turning sexy fun times into a depressing checklist. 

There's literally NOTHING wrong with this checklist but it still feels more like going through the cleanup process after accidental radioactive contamination that a date. On the whole, I'd rather people learn about consent before consent ever becomes an issue, and then not be in a position to need a checklist because checking in with their partner has become second nature. This next one, however, is very important.

The subject of alcohol also came up... as an excuse for Bob's behaviour AND as a reason why Mary should have taken more care. Ask yourself... HOW DRUNK WOULD I HAVE TO BE TO NOT UNDERSTAND NO?

This argument always seems like willful ignorance to me. I didn't want to hear no so I was too drunk to hear no. "Drinking lowered my ability to see I was doing something wrong". It's the same ridiculous reasoning for people getting behind the wheel of a car drunk - and nobody thinks that makes any sense, so why should it with sexual assault? If I can be expected to remember not to drive a car because I'm too drunk why am I not similarly considered capable of keeping it in my pants? And when I get caught drunk driving I suffer the consequences, but when I'm caught drunk fucking suddenly it's all "how short was her skirt" & "how much had she had to drink". Does anyone ask if the car was too sexy to resist? Does anyone take seriously the "I needed to drive home because [insert reason of choice]" arguments? 

Sexual assault is far too often treated like a grey area, and the wrong things are being looked at. If sex was had and consent wasn't... rape happened. The grey area discussion can come AFTER that decision, because there are some things that may mitigate, but - and this may be the biggest but in the history of legal arguments - they don't mitigate the rape bit, they may mitigate the sentencing decision afterwards, but sex without consent should absolutely always be considered rape.

The last thing I want to deal with is the end of the example:

"...Bob then carries Mary to the bed and kisses her again. Mary realizes what is happening and says, “No, I don’t want to do this.” Bob removes all of her clothes. Mary mumbles, “No,” very softly and then realizes that she will probably have to give in."

Some people see this as implied consent. It is NOT consent on any level. Mary has said no. Twice. She has had her clothing removed without her consent and is about to be raped against her consent. Her resignation to the fact of this is NOT IN ANY WAY CONSENT. Not fighting back is not an argument for "she probably wanted it anyway" or "she didn't not want it *enough* to fight him off" or whatever bullshit. These situations turn aggressive really quickly. Maybe Mary felt that continuing to say no in the face of his obviously not taking it for an answer was going to lead to a beating, or worse. Women don't "give in" in these situations because we've changed our minds, we just know the futility of trying to stop you once you've stopped listening. 

Maybe think about this if you don't grasp the where the line is. If you're having sex purely for your benefit, with no regard for what the other person wants, or what enjoyment they are getting out of the experience, maybe reconsider your behaviour. Because I absolutely do not ever want to be having sex with someone who doesn't care whether I'm enjoying myself or not. And WTF is wrong with you if you're happy with getting your rocks off at someone else's expense?

Just a thought.

Peace. Out.

*old joke for people who remember the "Unclear on the concept" cartoons

Sunday, November 20, 2016


Not that I'm a Queen in any sense of the word. Bitch Queen possibly.

However, the news appears to be entirely true, the reports are in Bill (my tumour) is dead. Dead dead dead. Fuck you cancer. I have not read the reports yet myself, they will be posted to me. But my surgeons tone of disbelief as she read the contents of both reports was enough to convince me that they are probably correct. Since no one was expecting anything like the insane level of recovery that has happened, most reports are currently being read in tones from startlement to outright WTF?

Because the short version of the story goes: One day while lying in bed I was startled by a lump in my right breast... after an extremely hurried trip to my GP, followed by an equally hurried trip to Breastcare Canterbury, ONE HELL OF A TUMOUR was found. Like 7cm across big. That's a pretty big chunk of a boob. For some people that would be their whole nork. At the same time samples were taken of the nodes under my arms to check for spreading cancer cells. Because with a tumour that epic they expected there to be some. Two biopsies showed no sign of spread, but since both samples also showed no actual node tissue, and a couple of nodes were enlarged it was assumed that the spread was there and just managing to escape notice (in reality it turns out that against the odds there was almost certainly no spread - no cancer cells living or dead were found in the removed nodes - and it was just my dicky immune system [oh hai, fibromyalgia, thanks for being good for something for a change] causing the swelling in the nodes]. So after two rounds of chemo (second was stopped because it was doing truly horrible things to me), and an exciting double surgery (two teams working at once to remove the lump in my breast and my suspect ovaries - yay no more fucking ovaries)... there is now ZERO, yes I said ZERO sign of living cancer cells in my body. I still get to have the radiation and the prophylactic ongoing pills as a *precaution*, and because my odds of getting cancer for a second time are rather higher than for the first. Because fuck you cancer. 

Anyway the point of this entry is to thank an AWFUL LOT OF PEOPLE. Friends, you all know who you are - though I will thank one person in particular for having been there every step of the way, with jokes, gifs, a virtual handhold and all manner of things to take my mind off the impending doom of it all. Family, obviously. My daughter above all, who has stood beside me while I had all manner of things poked into me, has acted as nurse, therapist and confidant and of course offered me nothing but love through it all. Kitty you are the pride of my life, I have made nothing better than you. 

You guys have all been amazing from the little things to the big. The help when I couldn't do things for myself, the ongoing abuse Declan kept up no matter how bad things were - I love you bitch. The cleaning my house when The Girl could have been but was struggling with all the shit too (Carolyn that means you!) Mowing my lawn, and thus tolerating my douchenozzle neighbour. Marsden how you didn't lose it that first time you met him I have no idea. ALL THE TEA AND COLOURING IN BOOKS. 

Then this odd assortment of charming celebrities who have literally no reason to give any kind of a damn and yet provided small doses of support that helped in moments when I really needed it. Of these, two stand out: John Barrowman for aiding and abetting in this photo taken at Melbourne Comic Con...

... which has given me no end of amusement, and for generally being extremely lovely. 

And Samuel Anderson, who we met at Wellington Armageddon and then stalked over to Melbourne Comic Con, we went out on the piss in Wellington - and the rest of the story is redacted. No ones clothes came off as far as I am aware, that is all... 

Mr Pink. Samuel Anderson. 

There were others...
Natalia Tena bought us drinks

Lovely conversation with David Giuntoli
The utterly charming Rose McIver, who we also stalked from Wellington to Melbourne
Manu Bennett, who we actually met before my diagnosis - but his stories of his own battles were a source of strength for me.

And a special thanks to our own lovely John J Campbell, journalist and all around good guy - though we have never met, you have had so many kind words for me and shared hoorays for the All Blacks and the Black Caps, and wordplay, and just the joy of watching you stand up for the little guy so many times. You're a good bloke JC. 

That cleft chin though. Marvellous.
And now to the two people who have consistently been there when I needed a hand up. 
My dear Imaginary Friend, who I hope to make a bit less Imaginary as a part of our FUCK YOU CANCER tour of the Americas. Paul Blackthorne, Actor, Photographer, lover of alive animals. Whose matching sense of humour and kindness has been a terrific support to me. You are well and thoroughly imbedded in my heart now. More fool you. 

Quite clearly my kind of dickhead.
He has immaculate timing with his missives, always when I most needed a pick me up. Also he has excellent taste in terrible jokes.

And finally, but most of all, my endless gratitude to my dear and beloved Matt Davie, for keeping in touch all the time. For sending outstanding tea. For making me laugh. For being as misanthropic and cynical as I am. For holding my hand from far too far away. For making me go get my teeth repaired. You were right, it did make me feel better. For talking through all sorts of medical crap that I was thinking about... but didn't want to talk about... but needed to. For being mad about things on my behalf, saving me from having to be pissed off when I didn't have the energy. For understanding what an utter fucking muppet I am, and still liking me anyway. Just. Everything. You were always there when I needed you, I will always be there for you. Dick. 

Basically what I'm trying to say here is, I love all you nerds. And you have all helped to save my life. Victory is ours.

Peace. Out.

Saturday, March 5, 2016

PSA: I seem to be making a few of these.

So I have this fund being built to help me with the increased costs that are already starting to creep up on me #FUCKCANCER 

But there's a thing I want to make really really super clear - I don't want anyone to donate money if it's going to make their lives uncomfortable AT ALL. I am not yet at the HOLY HELL Y'ALL I'M GOING TO DIE WITHOUT [insert crazy expensive treatment here].

I don't even know yet how desperately expensive this is going to end up being. Obviously it's going to increase costs in all kinds of places, every day I think of more things I'm going to have to spend extra on just to stay alright-ish. I can't skimp on power this winter. I can't eat whatever's cheap. I can't let my phone run out of credit. All the things I could sort of get away with as a broke but only semi broken person. Well, not so much now. I can't walk instead of catching a bus even. It's too tiring. Excuse me I just have to go and be slightly miserable over in this corner for a minute. And make a cup of tea. 

Thanks for being a fantastic Imaginary Friend Paul

But in theory I can pull the crisis care from my life insurance, that'll cover quite a bit. I'll be able to pull my Kiwisaver fund (hahahahahaha, I'll let you all know how THAT goes - John Campbell, my precious, I have not forgotten to keep you posted on that - I'm still working on getting sufficient ID together for it. Headdesk.) 

At this point, this funding is to make sure I have enough up my sleeve UNTIL I can get those things organised. For random scans (I can't take the time for waiting lists, some things will have to be done privately) So I can get all my prescriptions (instead of playing the usual game of "what can I live without this month"). To make sure I'm eating properly (which I have not really been doing, because who can on a benefit, especially when you're trying to stretch one benefit across two people) & to make sure I can get all the little things that pile up on you and it turns out you can't ignore when you're sick. If it turns out I need *magic unfunded medicine* or *voodoo surgery* we'll cross that bridge when we get to it. 

So if sparing me a few dollars is going to mean missing out on something yourself, for the love of [insert what you hold dear] DON'T. 

And so that we remain upfront on money matters: A chunk of my crisis care is going to be used to take Kitty and I on a trip together. Assuming I am well enough to go when the time comes. This is because a) we haven't had a lot of holidays together & b) if the worst comes to the worst I'd like her parting memories of me to be of good times. I've been the kid who has few good memories of a lost parent, I really really really do not want to do that to her. 

I love everyone for wanting to give, I love everyone for wanting to help, but please for the sake of my sanity only give what you can. You love, your kindness, your presence is enough.

Peace. Out.

The fund is here, if you want to take a look (update: fund is now CLOSED, but you can still look)

Wednesday, March 2, 2016

The Once and Future Queen

Stuff happens in people's lives some of it good some of it less than good. I'll be talking about the bad stuff today, but I don't want people to think it's all doom and despair, I've had a plenty good road.

I was born, a tiny little thing, on Christmas Day in 1970. Since then quite a lot has happened to me. Many people have said an unreasonable amount of it was bad, but I think my daughter more than makes up for it - since she was born the scales are tipped forever in my favour.

The bad are a little series of stepping stones towards today.

When I was 9 my Mother died of cancer, after a horrible battle with it. FUCK CANCER.

When I was 14 my Dad had his first heart attack. It wasn't long after that that he had double bypass surgery. When I was about 20 he developed cancer, and against all odds (seriously his odds were terrible) he survived. FUCK CANCER. Then when I was 25 he died of nothing.

Kitty was born the following year in an emergency c-section. The whole experience sounds horrible. I only remember the good bits and the funny bits. We're both alive, that's pretty good under the circumstances.

Since I was about 20 I had a lot of random things wrong with me, they niggled at me but seemed to be unconnected and un-serious so I didn't worry too much about them. But over time they got more annoying & harder to ignore. And I started having trouble sleeping, which just wrecked me. Chronic sleeplessness is a total dog. The situation became steadily worse. Eventually, around age 30, I was diagnosed with Fibromyalgia. It's a pretty shit condition, if you don't know about it, look it up - you probably know someone who has it.

Roll forward a bit, because while the Fibro isn't going anywhere it's also super boring. A couple of years ago I started experiencing new symptoms. That while they COULD have been my Fibro being weird and throwing new things at me, I was absolutely convinced were not. It started with a cold. The cold definitely wasn't the Fibro :) 

I got a cold and it turned absolutely unbelievably vicious. It felt like someone was leaning on the left side of my chest. I could hardly breathe. Coughing was killing me. It went on for months, and it never entirely got better. Eventually the cold went away, but the left side of my chest still feels like someone is pressing on it. I've been incredibly careful not to catch any more colds. After the cold went away my doctor totally lost interest in it. "Probably just Fibro". Everything is, right? 

Shortly after that I started losing feeling in my left arm. My thumb, index and middle fingers are all pain, no feeling. I can't tell what they are up to, if I touch things, I feel the increased pressure as increased pain but I have no idea what other things might be going on. I can still use the hand, sort of. I'm typing with it right now - but I don't touch type with it anymore. The right hand is touch typing, the left is being watched and told where the keys are. I watch the finger lower to make sure it's in the right place. When I cook I have to be careful with blades and heat. Particularly heat, I don't notice it burning until it's far far too late. By looking, and going "shit, that's probably burning". 

The rest of my arm is slowly but surely disappearing. Figuratively and literally, as I'm experiencing tissue wasting too. 

It took a ridiculously long time for my GP to finally refer me to someone, and I'm fairly sure he only did because he was bored with me whining about it. Because it's "probably just Fibro". The first specialist was a Musculo-Skeletal guy. He was great. Full examination, TOTALLY NOT FIBROMYALGIA. He ordered an MRI, which was a bit inconclusive but confirmed his suspicion that something was going on in the Brachial Plexus region, with the C6 nerve. Not his department. So he moved me forward to Neurology. (Hilariously this is what I expected right from the beginning, but something something, pathways something, boring). 

The Neurologist is also great. He was very thorough in his note taking and going over my whole entire body looking for anything out of place. Anything else that might be a neurological symptom and narrow done the possibilities. He ordered a detailed MRI in the bigger, funkier machine at the main hospital. 

Some people are scared of the MRI machine, some people are just uncomfortable. If it wasn't so bloody noisy, I could fall asleep in there. The new MRI shows a *something* in the C6 nerve root, which we are calling a Nerve Sheath Neoplasm. Which is Doctor speak for something on the nerve that shouldn't be there. They'll find out what by taking it out most likely.

But now things get messy.

Because I was lying in bed, contemplating my shiney new appointment to see a Neurosurgical Consultant to talk about cutting me open when, my arm brushed my chest and it didn't feel right. So, shaking like a leaf I checked my boobs, Lefty is mysteriously fine, what with all the other left side bollocks going on. Righty. Righty is not fine. Righty has a FUCK OFF enormous lump. I freaked the fuck out, and (this is where you all laugh at me) checked the internet to see how much panic was required. Calmed down a bit. Because for the first time in the history of humans looking up health stuff on the internet, it was actually useful. Then called my clinic, where one of the lovely nurses said yes it was totally understandable that I wanted to be seen right the fuck now. And got me to come in immediately. Where I was duly felt up by several people. And a mammogram referral was sent away. Breast Care NZ called me the following day, because apparently there is a section of the public health service that can find it's ass with both hands. I went in for just a mammogram. I came out with a mammogram, an ultrasound which I am sadly talented enough to read (so I already knew it was *not good*) and an urgent biopsy. Urgent in front of biopsy is probably not a combination of words I need to hear ever again. The results were in very very fast indeed, and I have an Invasive Ductal Carcinoma. A big one. It only remains to play count the number of nodes that it's playing with (zero would be good) and see if any other organs are involved (no would be good) and see if I might be Hormone Receptor positive (yes would be good). So the tumour lottery is not yet over. But a lot of the good answers are out of the game. I HAVE CANCER. FUCK CANCER.

The doctor performing the biopsy, thinks the MRI's and also a ultrasound done on my thyroid a while back should be looked at again with this diagnosis in mind. This is not good. I would like them not to be connected in any way.

My GP is probably trying to find a way that it could be "just Fibro" he's certainly still trying to water down the potential seriousness. I'm ignoring the crap out of him and talking to the specialists instead. 

I called my clinic. To find out who I had been referred to, what other referrals might be needed and what else I needed to do. "I'll find out, and call you back. If I haven't called back by 2pm call us again".... 2.30pm I call them again. My nurse is on the phone to some other poor soul. There's nothing in my notes (surprise, my doctor is the worst note taker) so the other nurses can't even find out for me... never mind I say, just get her to call me when she's off the phone. Of course they will. NOPE. So the following morning I call again. I've been referred to surgical (apparently some special Breast Cancer department I was totally unaware of before exists for this kind of thing) but they don't need to refer me to Oncology yet, these super folk in the covert breast cancer department will if it comes to that. I am now picturing Breast Cancer nurses dressed in black suits, with bluetooth headsets and dark glasses. Because at 45 years of age I'm still pretty much 12. 

Later that morning, my GP calls, all full of apologies for not getting back to me earlier. I wasn't really expecting him too, I am aware of the combination of his slightly useless nature and well overbooked schedule. Turns out I'd probably rather he hadn't called anyway. Because he either hasn't properly read the information or thinks I'm an idiot (that's not fair, less clever than I am is probably more accurate - I am that level of obnoxiously clever that makes many people want to barf). He's trying to reassure me with platitudes and telling me things I know aren't accurate. Then he tells me if the hospital hasn't got back to me in a week I should call him back to get him to hurry them along. A WEEK. Are you fucking actual kidding me here?? A WEEK???? I am literally unable to say to him how ridiculous this is to me, and file it away under, don't bother I'll just hassle the hospital directly.

The hospital calls that evening. A very nice nurse explains that the consultant needs to look at the file and decide what needs to be done, that will happen this evening and she'll get back to me in the morning. I mention the cowboy'd up axilla biopsy and that it will probably need to be redone, and she puts that at the top of the list of things to check with the consultant. SHE JUST CALLED SO I WOULDN'T SPEND ANOTHER EVENING WORRYING THAT NOTHING WAS HAPPENING. 

She calls back in the morning, exactly like she said she would. This morning. She confirms that I was dead right and the first thing to do is get the axilla node biopsy repeated. So they have put a referral through to Breast Care NZ at St Georges to get that organised.

Rather than wait, I called Breast Care NZ to see if I could shake things up. They will call me the moment they have the referral on their desk (fucking hospital systems, referrals take forever to get where they are going - what even is that in this day and age??).

So back to waiting, but hopefully not for very long.

Then the discussion on how much of me we're going to need to cut off. There will be no discussion regarding boobs. Screw lumpectomy. Screw single mastectomy. CUT THEM BOTH OFF. JUST DO IT. I'M NOT KIDDING. 

The discussion will be around lymph nodes, and whether there has been further spread we need to twist our knickers over. My knickers are already pretty twisted frankly.


Peace. Out.

PS A friend has begun a fundraiser to help with medical costs, and perhaps some fun. If you have something to spare lovely, if not also fine.

Thursday, February 11, 2016

An Epic Meltdown of a Day

And it started so well (I'm not even a little bit joking that this bit of my day was super-awesome, it's not irony, I'm still laughing my head off about it) with Peter Dunne MP throwing a wee 2 year old tanty and blocking me. 

That was all the entertainment value that will be contained within this post. Think of it as me starting with a joke.

It was all downhill from there.

Because as if I don't have enough exciting medical related crap to worry about, this afternoon I found a lump on my right breast. A huge lump. How big? It isn't small. So in a fit of panic I blubbed for a while, then made a number of frustrated and pissy noises at the universe. Then I called the doctor. His nurse was very understanding and nice, because opposites attract, and told me to come on in and they'd squeeze me in somewhere. 

So in I went, and duly had my boobs poked and prodded, the upshot is given all the hardly any information, I'm probably not dying. But best to be on the safe side, so on the urgent list for a mammogram I go. Because FUCK MY LIFE. If I wasn't still in something resembling shock I'm pretty sure I'd be finding this hilarious. There's a part of my brain that's laughing hysterically anyway, but I'm pretty sure that's mania. 

So anyway. That's two lumps. Where will the next one show up? Who knows. It's like tumour lottery. I FUCKING DIDN'T BUY A TICKET. Are they connected? Who knows. Until someone has a look at at least one of them, NO FUCKING IDEA. The upshot of this section of this post is, I have no answers. More questions, no answers. Story of my life actually. 

On the way home in a fit of maudlin something or other, I decided that if the race to kill me become a reality, I am so fucking totally taking the crisis care part of my life insurance and going to go wherever I need to to meet Paul Blackthorne. Because if life gives you tumours, make travel plans. Or something like that. 

There is much anger in me at the moment. I'm going over to the dark side. TWO FUCKING LUMPS. OK both of them are "probably nothing" BUT MY PARENTS BOTH HAD CANCER, my equilibrium is a touch off right now. As in, spinning on the pavement like a lost hubcap. For the next couple of days, universe, I'm calling in insane. LOST THE PLOT ENTIRELY. I plan to hibernate, but can be reached via social media or email. ALL VIRTUAL HUGS GRATEFULLY ACCEPTED.

And now back to listening to The The, because it matches my mood

Peace. Out.