Where to even start? FUCK ICE

Where is this world going? What even is this timeline?

My Dad fought in world war 2. He watched the rise of the Nazi's, he joined up under age. RAF. He did not enjoy his time during the war. He barely spoke about it. The most I ever heard him speak was when my boyfriend was excited he might be deployed during Desert Storm. Dad blew up at him. I've never seen him so angry. He described why war is not something to be taken lightly it, not something to be excited about. Killing people, even when the cause is right is never a good thing. 

I'll be damned if I will watch fascism rise again in silence.

The current US government is not just right wing. They are thugs. Leading an army of thugs. With petty people lapping up every bit of it because they enjoy watching the people they have othered hurt. I'm not using that word lightly. They ENJOY it. You can see it in the angry posts about why they see it as OK. You can see it in the faces of ICE agents as they thug their way through protesters who are just upholding their fundamental right to protest. 

I was in the US for the Million Women March. By accident really. We were travelling, my daughter and I, because I was very ill, didn't know that I would live ill. And we happened to be in Seattle for the march. There were so many people on the streets. And I felt safe.

My friend, David Farrier, is in the USA reporting as he can. He was on scene in Minneapolis  shortly after Alex Pretti was murdered. And I am terrified for him. 

Here is his piece... 

https://www.webworm.co/icekillsagain/

This was murder. Alex's gun was holstered. They removed it from his holster. He was on the ground. There were plenty of thugs there to subdue him. But they shot him multiple times. Watch the videos, there are multiple angles. There is never a weapon in Alex's hand. But only watch them if you can, I'm not asking anyone to view a cold blooded murder. It should be seen, but not at the expense of your sanity in this already insane world. 

This world is out of control. My own country, which I have always loved and never imagined would show so much hate has a government full of petty little bigots. I see many places leaning the same way. 

It has to stop. 

I'm left wing, but I am not anti-right-wing. It's good to see things through balance. I am vehemently anti extremism, in any form. When we lean to far in any direction things get messed up. We all fall. 

I believe we have reached a pivotal moment in history. If we go forward as is, this will become, in Star Trek terms, the mirror universe. It is time the world stood up, as it has before, to stop the madness. We all need to speak up whenever we see things gone this far astray. Before it is too late. 

I am my father's daughter. I don't have to like it but I do have to do it.

FIGHT FASCISM. FIGHT EXTREMISM. FIGHT HATE. 

Peace. Out. 

Not what I once was

So I've been a bit upset for the last week or so. A person very close to me apparently knows less about me than rando's who read my facebook drivel on the regular. I don't want this to turn into a whinge, it isn't that kind of... I don't know, disappointment? PLEASE FEEL FREE NOT TO READ THIS, not everything I write has to be your cup of tea!!

So there's a whole lot of things that I want to say just as disjointed bits of things that seem to have been *lost in translation*. Mostly from the time I was especially ill. Not just regular ill.

Regular ill for me is Fibromyalgia, mostly causing pain in the lower back (and to a lesser degree other places) and fatigue (a combination of lack of sleep and my brain not doing sleep right). A couple of Migraine complexes, fortunately, neither happens overly often. One is a bit all over the place, it probably averages once a month over time but really it's usually several months of nothing then a week or two of every other day. The other happens roughly every 18 months. Nerve pain, which may or may not have been caused by duff discs in my spine. The discs have been replaced but only a very little of the nerve pain and numbness have abated. I used to have Polycystic Ovaries but they took my ovaries out a couple of years back so I technically don't have that any more. Because I had cancer...

Breast cancer. Ductal carcinoma. A big-ass tumour. And here's where things get a bit weird. I wasn't at all closed-mouthed about talking about my illness. I felt like it was important for me to talk openly about my experience because I can and anything I can do to make the situation less awkward for the next person is something I should do. So how then does someone I consider very close to me, and most definitely connected to my facebook - which was my primary platform for talking about all the shit that was going on - manage to have spectacularly the wrong idea about... most of my illness experience.

I was VERY ill. As much as I didn't make a huge deal about it, my life was quite definitely on the line. When the early tests came back showing no signs of spreading the team (when you have a big ol' cancer you get a whole team) decided that we should treat it as if there had been spreading because it was so hard to believe that there wasn't any. My second round of chemo went so badly that we had to pull me off it even though it was a big risk to do so. Because chemo is poison. The idea is to poison the cancer faster than you poison yourself. The second round of chemicals was killing me too fast. So we pulled me the hell off that. But many of the problems associated with that round of chemo (and some that were related to the first round as well) like nausea hung around giving me grief for long months. I could barely eat. The only thing I could hold down regularly was Bundaberg Ginger Beer. Yes, it had to be Bundaberg. Every other brand I tried, NOPE. Lemonade? NOPE. Water? Oh hell no. I tried things I had previously found to be good with nausea, nothing else worked. So I was stuck with ginger beer whenever I couldn't eat. Which I guess probably worked out as about 5 days out of every seven. I'm pretty sure Bundaberg can thank me for a spike in their sales. That was a joke, no one can drink that much ginger beer. I was moved from taking codeine for pain up to morphine, because having cancer wound my stress up a lot. I still don't really have it back under control. Fibromyalgia is stress driven, so that's a thing.

Between treatments, very carefully worked out with my team, I took a holiday. I used a lump of my crisis cover insurance to take my daughter on a decent holiday, to Canada and the United States. Vancouver, Seattle & Los Angeles. I had a lot of reasons for taking that trip. The big one was DEATH WAS STILL ON THE TABLE. I wanted to take my daughter on a trip worth remembering in case we never got another chance. I lost my mother young. I know how awful it is. I wanted to make sure that her experience was the least terrible it could be. The other biggish one was, I really really needed some time and space to absorb everything that had happened to me. Being chronically ill, suddenly having a shitty extra bonus illness making me feel like spectacular garbage was physically, mentally and emotionally unbelievable. Crippling. Being able to pretend I was normalish for a couple of weeks was amazing, I wasn't normal at all. I was exhausted every day. The trip might have been nicer for me if I'd been able to leave it until later, until after I'd recovered to my normal (which is not at all normal) but you see the thing is if I waited for that I might have been trying to take a holiday in a funerary urn. Which doesn't sound like a great trip for my daughter.

During my chemo, surgery & radiation Triple Dip I was admitted to hospital several times. Each time it was because my immune system had collapsed. Each time I was put in an isolation suite because being around people who hadn't been vetted or forced to wear silly outfits (surgical mask and disposable scrubs) was dangerous for me. If it isn't clear yet I WAS REALLY SICK. I hated going to hospital, I hated staying in, I tried to be sensible about it though because I knew that taking risks with my immune system would be a really stupid thing to do. I had a special card for the hospital (It's stuck on my fridge now - memorabilia) that allowed me to jump the queue at the Emergency Department. Flashing that card (in theory, assuming there weren't muppets on duty) got me straight into the emergency departments isolation area, on a broad-spectrum antibiotic drip (without waiting for proof I needed it) with a big range of tests being run while they waited for someone from either Oncology or Immunology to come and play with me. S. I. C. K.

I am not all better. I have another three years of oral chemotherapy. I'm still highly fatigued, I can only do about twenty minutes worth of light *work* before I have to rest for considerably longer than twenty minutes. The more I try to do, the more I risk spending the next day or more in bed. So I have to be careful with my spoons. My daughter gets it, I really don't know what I would do without her sometimes. She picks up my slack without complaint, I couldn't love her more if I tried. And yet somehow tomorrow I will.

There are so many other things I could address but I don't really see a whole lot of point. The message is simple. I had reasons for every decision I made while I was really ill. I did nothing lightly - I HAD FUCKING CANCER, DOING THINGS LIGHTLY GOES PRETTY MUCH OUT THE WINDOW. I was much sicker than I think a number of people thought I was - probably not the people who are reading this because the vast majority of people who bother to read this drivel also read most of my other posts and had a pretty good handle on how fucked up I was. And how fucked up I still am. I'm getting there. I'm starting to lose the weight that all the extra meds put on me. I fit size 12 jeans again. There are other things I could address but I feel like it's simpler to just not give a fuck - I mean if the people this is aimed about give that few fucks how many fucks do I need to give? (I say this like I'm any good at stopping giving fucks about people... I'm fucking dreadful at stopping giving a fuck about someone I love. Once in my heart always in my heart. I mean my brother drives me stark raving insane but that doesn't stop me from loving him. It just makes liking him complicated. I've been let down many a time, several times I've tried to convince myself that giving up on them is the answer - but I know I can't. There's no point pretending. I'm a huge marshmallow. Screw it.

Peace. Out.

Still not sure what they want, but I am pretty sure they don't want us to be a part of the solution.

This sort of continues on from my last entry (the thrilling tale of trying to get assistance from Work and Income New Zealand (WINZ) to get us out of the unemployable and yet extremely capable hole we're in)... wherein I attempt to become part of the solution in the proposed *fixing* of the New Zealand Welfare system.

It begins with me emailing the Welfare Expert Advisory Group (WEAG) on October 23rd to offer my voice. I had been told about the Advisory Group by someone who had read my last blog - I had heard NOTHING about it prior to that.
 At around the same time, I Tweeted & Facebook'd a few things along the same lines, tagging the New Zealand Labour Party, the New Zealand Green Party and an assortment of MP's from both parties. I openly said I wasn't bothering to include other parties as I didn't feel like they would care. At all. I got no response to either the email to WEAG or to any of the posts (well no response from the people tagged into them, I got a fair few responses from people who have had similar experiences with WINZ.)

On Sunday the 4th of November I followed a link given to me on Facebook by a friend to a page the NZ Greens had put up for submissions to the WEAG, it auto-populates to the actual WEAG submission page I think. In this, I listed a number of things I felt need looking at, along with some suggestions for how they might be addressed. It was far from complete because I have put a lot of thought into what needs to be looked at in the welfare system over the years. This isn't the first time I have tried to make my voice heard.

On Monday the 5th of November, I decided that I felt like sufficient time had passed for me to be annoyed and composed an email to NZ Labour, NZ Greens, Prime Minister Ardern, Ministers Shaw, Sepuloni, Clark, Salesa, Henare & Genter and also WEAG. This one mentioned the lack of response and linked to a copy of my last blog entry, asked a few questions and again suggested that I am very willing to talk about the issues I see. I also mentioned that the submission process seems not the best way of communication if there is going to be no follow up from it - if you aren't talking to the person about what they wrote it's ridiculously easy to misinterpret the written word. I talked about my concerns that the WEAG was mainly populated with people who did not appear likely to have first-hand experience with the welfare support - I'm glad to note that apparently, they have one person on the board who is a current beneficiary, and another who has been on the benefit. However, I'm fairly sure that they missed a fair bit of my point there, since the people that have the biggest problems with WINZ tend to be the sort of people who are not likely to come forward and who have problems communicating full stop. They have apparently hosted forums in a number of places - I haven't found anyone yet who has actually attended one, but I'll keep trying. Again though, this system for communicating leaves out people who struggle with transport or who are not good at speaking in a crowd. It's also all pretty pointless if hardly anyone finds out about any of this until it's too late.

So I'm asking here, in the hopes that it gets spread around a bit - if you have been to a forum or made a submission I'd love to hear from you, even just briefly, so I can get an idea of how well used these systems were. At the same time, if you hadn't heard anything at all about the Welfare Expert Advisory Group I'd like to hear that too.

Anyway, back to the point. This second round of communication got a few responses. The office of James Shaw emailed to let me know that they had passed my email on to Jan Logie (Whom to date I have heard nothing from), the office of Carmel Sepuloni emailed to let me know that my email had been passed to the Minister (to date nothing from her either).
The Welfare Expert Advisory Group responded (this is a long story)... Firstly they called me, to briefly apologise for having missed my first email (it looks like they only got my second because one of the MP's forwarded it to them... there seems to be an issue with emails sent from Gmail accounts. Dubious.) They were busy with a forum right then so arranged to call me the following morning. Which they didn't. A few days later I got an email apologising for not calling when they had said they would and to set up a new time... which they also didn't manage. For better reason this time. They asked if they could call the next day - I told them my sister was in town and I would be spending the next 2 days with her but would be available from Friday onwards, to which the response was basically that it would need to be on Friday if any of our discussion was to be included in the submissions. So on Thursday evening after I'd finished with my family, I began taking notes from all the things people had said to me on social media so that I would be as ready as possible given that this was the last chance.

I contacted them in the morning to let them know that I had had a bad night with insomnia and was going to try to get a nap - they responded that they would wait until they heard back from me to call. At 1pm my phone rang, waking me up. I accidentally hit the big red button sending it straight to voicemail, but that's probably for the best as I was completely incoherent at that point. So I finished up my notes quickly, emailed them to let them know I was awake now (and included a copy of the notes) - this was probably less than 10 minutes after they called. 2 hours later, I was back to utterly exhausted so I emailed again to say not to call because I was virtually passing out and was going to try to go back to sleep. A few moments later an email came through saying they could call me right now if that was OK. I was annoyed enough and vague enough to think that replying would be a mistake.

Anyway, the TL/DR version of this is;
I don't think WEAG really grasp the concept of being chronically ill. Which is something of a shame since many of the problems that continue to plague the system are around the extra vulnerable.
I don't think our MP's are particularly interested in responding to mere mortals.
I don't think either the Government or WEAG are really particularly keen to hear what from anyone but themselves on the subject of the state of our Welfare System.

It would be nice to think that having asked for public input they might actually listen to it, but I've become jaded by a lack of this happening before so I will only believe it when I see it.

Peace. Out.

What do they want?

This piece is about an appointment I had with my daughter at WINZ today, looking for assistance with our startup business. If you aren't into the idea of Social Welfare as a way to help people get back into the workforce then now is probably a good time to stop reading. Because for a change I don't really want a discussion - though I'll accept comments as I always do - I want to tell my story. Sections of conversation are not verbatim, my memory is complete bullshit so I'm remembering as much on the basis of how it felt to me as I am actual word-for-word prose. IE: heavily paraphrased.

I'll just get into it, so there's some chance that I don't get boiling mad again before the end.

First our background. My daughter and I both have medical issues. I have several diagnosed issues (actually being in the WINZ office set one-off, because they use fluorescent tube lights and I developed a migraine while we were talking) the sum of these conditions leaves me extremely unlikely to ever enter the workforce again - I mean realistically, would you hire someone who is likely to have to call in sick every other day, goes home ill often, loses concentration easily, has a memory like a... metal thing with holes in it, and has the potential to collapse/scream/vomit all over the office without warning? I may be the only person willing to hire me. And that's only because I know the job I'm asking of myself is something I can do when I'm not feeling like garbage. When I'm not on so many meds I pass out. That I can do 20 minutes work and then sit down for 20 minutes and recover while things wait for me. That I can work at 2am when insomnia has me in its grip and then lie down most of the morning because I haven't slept. I won't talk about my daughter's problems, they are her story to tell. To the meat of the story. 

On Wednesday I had a phone interview with WINZ (Work and Income New Zealand - ie: the unemployment office), that I booked a couple of weeks ago. I wanted a face-to-face appointment but the online booking service offered me a phone interview as the first available option. So I took it. I talked to a pleasant enough sounding employee about our business, and why we are trying to set ourselves up for ourselves. They asked me a few questions mainly around the concept of how I could be going into business when I'm on a medical dispensation. I explained the idea that a normal job is rather a different thing from working in your own home at your own pace. And that my doctor thinks this is a good idea and a great compromise for the issue of my ongoing medical problems. They said they weren't sure what help was available but they would speak to someone with greater expertise and booked an appointment for the following day. 

So I printed out our business details. Packed up our information. Made sure I had ID. And traipsed my shitty broken body down to the closest WINZ office, which is in fact very close thankfully. We waited for our appointment, eventually were led to a cubicle to be immediately told that they had talked to the person with greater knowledge who had said there was no help for us. I questioned this because the MSD website shows significant options for assistance in starting a business. Turns out the person I was talking to had assumed we were looking for just a cash-in-hand payment to buy things. (the phrase *assume makes an ass out of u and me* leapt irresistibly to mind. But I held it down. I know someone call Guinness.) I explained that while we are also looking for that, what we were interested in was the potential weekly payment to help while we have increased expenses, and training assistance so that my daughter can do a small business course and I can refresh my accountancy skills. Which are both things that according to their own website are offered by them.

WINZ Working for yourself page

Once again we were questioned about how we were able to start a business while on medical dispensation. Once again I explained the concept. The interviewer excused themselves to go and get us some forms to fill in... which it turned out were nothing to do with what we were there to talk about but rather were the self-assessment work ability forms. Now I smell a rat. Or fish. Whichever. Clearly, this has turned into "prove you aren't ripping us off" rather than "let's see if there might be some way we can help you".

So I had dragged myself out of the house - which isn't actually something I'm very excited to do since there is always the possibility that I'll just crumble... and set up the day so that since we were already out we could get some other *out* things done... Only to be told that there was no help for US. And it really did sound like specifically for US. Because clearly we were being ridiculous - either we're well enough to work and should get a fucking job or we should crawl back to bed and die. No grey area.

So here's my question to WINZ, to the Ministry of Social Development & to our Government: Do you actually want people to get off the benefit or are you just all talk? Because time after time regardless of which Party is in power, what I see is ridiculous decisions that seem aimed at maintaining the status quo, handing out band-aids and very little actual constructive HELP.

Pushing people to take jobs they aren't suited for isn't helping. Limiting the options for training to things they fancy training in is only helping if the training is any use to a client. Forcing clients to do courses that are utterly unnecessary to their background is wasteful. Hiring utterly unsuitable groups to do training courses that underperform is not merely wasteful but demoralising. A system that doesn't want to improve its client situation is just as useless in Social Welfare as it is in in the business world.   

Because I am a chronic illness patient, I know quite a few other chronic illness patients. Some of whom can work a bit, some who manage to work full time. Some who work more than they should. But more who cannot work at all. Many of whom would much rather have something, other than binge-watching TV and lying down a lot, to do. But while WINZ will help with your medication costs and seeing your doctor (maintaining the status quo) there is very little they will do to actually help you improve your situation. I've tried. Years ago my doctor suggested swimming as a low impact way to help increase my strength and potentially improve my endurance. So I asked for assistance with that. Nope. I asked for a bike back when I had the strength to use one so that I could bike to anywhere I needed to go as exercise rather than busing. Nope. They'd pay for a bus pass but not a bicycle, even at a medical professional's advice, because I MIGHT JUST SELL THE BIKE. Or presumably not even buy it in the first place but just use the money on booze, drugs, and prostitutes. Because that is the kind of attitude that beneficiaries face every day. Smug faces telling us that we can't have this or that, suggesting that we must be ripping the system off if we want to look at doing more for ourselves. Underhanded accusations of drug use. Or bad parenting. Or whatever other bullshit the person who's only known you for five minutes deems acceptable to imply. And there lies a piece of the problem. I haven't seen the same person twice in forever. Even when I have technically had a caseworker assigned to me, they turn over staff so often that unless you are seeing them all the time your chances of seeing the same person twice, is slim to non-existent. And I feel bad for the staff. They work shitty jobs, sometimes facing shitty people, enforcing shitty policy and it must wear you down. No matter what a justice-loving caring person you might be when you start it isn't hard to imagine you being worn down to *sorry can't help, next please*. And I don't think a love of justice or a caring nature is actually what they look for as primary attributes at hiring time. Add to that most of the staff never having been in trying times like this themselves so not having an idea of how to empathise with the situations of people who found themselves in the gutter and just want a hand out of it. Not a handout. A hand up. 

There is the undercurrent of belief, among people who have never had to wonder where their next meal is coming from, that people on the benefit are mostly just idle scroungers. You don't have to live on a benefit for very long to know that that literally cannot be true. Because it's HARD WORK living on insufficient to live on. Constantly robbing Peter to pay Paul. Putting off important even vital things so that there is still food on the table. A table to put food on. A roof over your table. Blankets on your bed. Clothes on your back. No one stays on the benefit because it's easier than having a job. People who are bilking the system, and they do exist, actually put work into doing it. Because if you don't then you aren't going to get enough to actually live a life worth living. And I think that's the thing that people who say things like *idle scroungers* forget. That there is a basic standard of living that everyone requires to not be miserable. Depression is rife among beneficiaries, I wonder if you can figure out why. 

I really hoped that the change in government in New Zealand was going to make a significant difference to the way beneficiaries are treated in this country. But the message seems to only very slowly be dribbling its way down to the people on the front lines. They are still behaving as if the Status Quo is *keep the money away from the people as much as possible* which is a stupid concept that isn't helping anybody. I hope that the Welfare Expert Advisory Group* will make some good and clear recommendations that are taken on board. I have asked to be involved if at all possible because I believe they need to hear the voices of some of the people directly affected by these decisions. I hope the government will take action on those recommendations and that this sick welfare system can be repaired. Once it was a bastion of world decency, now it is a shadow of its former self. I hope New Zealand can show that it isn't going to fall down the rabbit hole of uncaring that so many other countries are already scraping the bottom of.  

Peace. Out.

*You can find the Welfare Expert Advisory Group here

UPDATE: The Welfare Expert Advisory Group released a fairly excellent paper on what changes they felt were necessary. Almost none of which has been done. Or is likely to be done. Yay. -.- 

Bad Mom Good Mom Same Same

Dear friends and usual readers... you probably don't want to read this one it's rather specific and kinda post-teen-wangsty.

My daughter and her best friend had a huge bust up. I was stuck in the middle of it because... well mostly because her bestie is virtually an extra kid of mine and her own parents are... probably fine but not brilliant at communicating. Plus the traditional issue of, all her biggest faults she has in common with her mother so they bounce off each other like bricks.

It's been a weird experience because I love them both and I don't want to see the relationship fall apart; I want to protect them both; and the trickiest part of all, as the rift between them grows how do I continue to make sure the Proto-Daughter is looked after without Daughter getting upset about the situation? (By relying on D being mature and understanding, that's how - I raised a very good one) For the last couple of weeks I've had some breathing room, because Daughter decided she couldn't look at Proto-Daughter's [let's call her PD from here on for ease... Daughter can be D] social media anymore without it making her either angry or sad so she unfollowed her and we were waiting to see what PD's reaction to that would be... and it was NOTHING.

Let's get the shortest version I can manage of the background out of the way.

PD had a boyfriend. Who is a massive raging sack full of syphilitic penises. This is not a reaction to my girl being hurt, he is objectively a horrible piece of crap. Their relationship was a disaster. They broke up and got back together, there was low-level violence & significant verbal abuse. And some other issues I shan't even bother getting into, that's quite enough. D was very concerned for her friends' safety and well-being and tried to communicate this to PD. But as we all know, people are not very good at hearing that their relationship is a steaming bucket full of diarrhoea while they are still on the inside. But it was increasingly hard for D to see her friend being hurt ALL THE TIME. And frustrating as hell seeing her break up, appear to *SEE THE LIGHT* then go right back to him as soon as he called. It reached a point were the best answer for D was to ask that the subject of the douchebag boyfriend be one that just wasn't brought up - the problem with that was that even with that caveat in place, the douchebag would still come up in really hard to ignore ways. He would text or call and PD would drop everything to answer him, she seemed frightened of not responding immediately. He would (in a way that looked manipulative to me) arrange to do things with PD at times he KNEW she already had things arranged with D. And again, PD seemed incapable of saying no to him. The more often it happened the more 2 things were happening at the other end. D was feeling rejected while at the same time she was also scared for her friend. And I mean really scared, as was I. I could see that the douchebag was a manipulative bastard and was already using verbal abuse techniques to control PD, he also has been known to lash out. So we were both scared of him hurting her physically as if emotionally wasn't enough. STUPID ASSHOLE.

Meanwhile D was having problems of her own. Health issues, and a boyfriend who seemed really lovely but turned out to be an asshole. The disappointing piece of shit. D's breakup left her raw, hurting from betrayal - I'm sure we can all relate to how much more it hurts when someone turns out to really really not be the person they appeared to be. I'd have punched him if the opportunity had arisen, and I don't really like to interfere in my daughter's social life - trying to fix this mess with PD is the big exception to the rule. It has been frustrating and terrible for us watching someone we both care about, keep going back to this asshole, knowing that he'll just hurt her again. Because he isn't capable of doing anything else, at least not with her. They just are not compatible. It's hard to accept that the person you think you're in love with is utterly unsuitable for you, so there was very little we could do to stop it - it's one of those things you need to be able to see for yourself before it will stick. So most of what we did was tell her she always had a place here if she needed it. No matter how sick of the situation we became that was always true. Even now, when D is about as hurt and as thoroughly wrapped in a cocoon of "I'm not letting you hurt me anymore" (getting to that) as she gets, she'd still take PD in in a heartbeat if she reached out in pain.

So the situation went like this... whenever PD was in a happy-ish place with the douchebag she would neglect her friendship with D. They'd make plans only to have PD *forget* or cancel, or try to reschedule into a time she knew wasn't good for D. (There is really only one time slot that totally doesn't work for D, the time she has lunch with her Dad.) Sometimes things would get *rescheduled* several times, before Kitty would just get angry with the BS and stop trying. The only times that PD would reliably turn up was when there had just been a break-up or when she wanted something. When a friendship becomes so obviously one-sided, no matter what the reasons are - it hurts. It hurts to feel like a person you love only wants to see you when they want something from you, that you're disposable the rest of the time. I watched D get more and more introverted the more her friendship became this. Not a friendship anymore at all, just a person using her and then discarding her when she wasn't useful anymore. It may not have been the intention (I don't believe it was) but it WAS and IS the result.
Friends fight sometimes. And in the pre-douchebag times, when they fought it was easily resolved. They would sort it out, they would both apologise. They would move on. But the longer the douchebag was around, the worse the situation became. Fights would not really be resolved they'd just be glossed over. So they festered. PD started taking everything said to her as a personal attack, which is hardly surprising because when your partner is an abusive manipulative bastard you get insecure. But it makes it really difficult to deal with any rifts. Neither of us could talk to PD about how the things she was doing (the breaking off plans, the lies, the douchebag...) were hurting D without PD getting defensive and assuming she was being attacked. I was often stepping in to speak for D because she was too upset to cope with it, or too ill. And I think maybe that made PD feel like she was being double-teamed when she wasn't.

Hell we all know I'm blunt, it's how I operate. I tell it like it is as much as possible to avoid the BS that comes about when you avoid saying it straight. That bluntness can be painful. But I did my level best to temper my bluntness with love. Because I do care, deeply for my Proto-Daughter. I don't want her to be hurt either. And I don't want her to be losing an important friend. But I can totally see D's point that she's taken enough pain already from this situation and that she's sick of her best friend putting no effort at all into fixing things. Or doing mind-meltingly stupid things while making a bare minimum effort to fix things. At the moment D is unsurprisingly struggling to see that PD sees any value at all in their friendship. So am I to be fair. I've given her the benefit of the doubt over and over again because I know the damage an abusive relationship can do to your ability to see things as they are and to communicate properly through troubled waters. But all of that is only a reason for things being bad, it isn't an excuse. When you can see that your behaviour is harmful you can't say sorry and then just keep on doing the harmful things. You aren't sorry until you work on stopping the harm. And you aren't a friend until you can put the other person at the front when their need is greater than yours.

As much as this may be a highly specific series of incidents, the basic idea is still multi-functional. Friendships are two-way streets, and no relationship that is all take and no give is a friendship. Or a thing that's worth having. Repair or discard. We got bored with waiting for reciprocation on the repair.

Maybe I should have just kept out of it all along. It would have disintegrated faster if nothing else. I caused it to be dragged out far longer than necessary by trying to repair it. If PD really was never going to try to fix things, then there wasn't much point in that. :/ My disappointment is betraying itself again. I love you both, and consequently, expect better from you both.

Peace. Out.

The most love.

As pretty much everyone knows, I was forced to put my darling cat Castiel to sleep recently. She gave me an enormous amount of love in her short life and I am finding things surprisingly difficult without her.

First person to say "she was just a cat" will earn the highest level of my wrath. Even if I'm pretty sure you're just trying to be funny.

I have had cats in my life since I was well pre-birth I guess. That may sound slightly mad to the less animal companion inclined people out there but I have the example of Ender ( my beloved silver Tabby) who was around for my pregnancy and through Kitty's early childhood. Ender used to curl up against my pregnant belly and purr. Kitty and Ender loved each other from the moment I brought Kitty home from the hospital. Ender looked after Kitty like a second Mother to her. I have story after story that I won't bore you with.

Cats have been a more reliable source of care to me than most humans. Even the bad-tempered cats in my life have been a greater source of consistency than almost any human. Chester was a bad-tempered piece of work but he was loyal as it is possible to be. And defended me physically on occasion. Lucy was named after the bitch in Charlie Brown, and she was as likely to growl as to purr. But she literally saved my life, and she slept on my bed more or less always. She'd get pissy if I disturbed her sleep, but she wouldn't leave.

I could talk about a dozen other cats, but it'll get tedious pretty quickly for people who didn't have personal experience of those animals. I've always wanted a dog too but never felt I was in a position to have one. I have a preference for cats, but I love pretty much all animals, except humans (present company probably excepted).

I've had a lot of cats that were pretty special animals. I've had all manner of different personalities from boisterous to timid, from love filled to grump monsters. The one thing they all had in common was loyalty. Earned loyalty. People talk about pets giving unconditional love, but I don't think that's true. Especially with cats. If you don't prove yourself worthy of your animal companions loyalty, you won't have it. Simple as that. Sometimes dogs are more willing to just love the shit out of their *master* no matter how much of a dick they are. Cats, not so much. Cats can look after themselves, they don't need to stay, they don't need to spend the majority of their time around you. They choose to. Cas spent so much time with us it was glorious. She was seldom far from my side, and if she was she was probably near Kitty. When I was at my illest she would be beside me offering me comfort. And I did the same for her in her illness.
I hated having to take the decision to take her on the long walk, but she was at best a couple of days from death (the tumour on her heart was either going to cause heart failure or she would slowly suffocate from being unable to oxygenate her blood sufficiently) it would have been a miserable death. So I held her on my lap while we let her take the shorter path.

Having been through all the shitty balls of cancer treatment (well most of the shitty balls, I managed to avoid some of the worst stuff) myself, I was not willing to put her through it, when the odds were well and thoroughly against her. Chemotherapy is horrible enough when it might actually cure you. When the best you can ask for is for it to prolong your life... well it begs the question, why are we so willing to show our beloved animal companions the door when we won't let our own kind CHOOSE the way out when it's the best available option? Of course, this wasn't the point of me writing this... it's just something that has annoyed me from both sides of the fence over the last couple of weeks. It's so easy for people to say "put her down" over an animal that I love pretty much as much as any person, but the same idea does not come easily to our lips over a human. And from the opposite side, people would have thought I was mad if I chose not to treat my own cancer. But most would have also thought it was batshit crazy to treat my cat with an almost identical protocol. Had her illness been something there were reasonable odds of curing (vs not making her utterly miserable) I wouldn't have hesitated. Had my odds been less good I would have said palliative care only. Cancer isn't something I take lightly. It's messed about with my life and the lives of people I love enough that I am well aware of the pros and cons of treatment.

Animal companions, in my opinion, are deserving of the same treatment in our lives as the humans in our lives. We are no less animal than any of our companion animals. And many of us are less human than our "pets". (I'm not a big fan of the term pet, these creatures are not belongings to me. They are friends. I choose to take them into my home and into my heart, but they never really belong to me. I love them, and I believe that they return that love. They can't tell me, but they show me every day.

Farewell Castiel, until we meet again - I hope that my Father has welcomed you into his garden with all the other cats of my past.

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.

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. 

But.

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.

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 the discussion of this scenario. Firstly it seems like people are willing to see her initial actions OVER her later words. There was 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 expectation 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 than 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 as a grey area, and the wrong things are being looked at. If sex was had and consent wasn't... rape happened. If unwanted intimacy happened, it was sexual assault. 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. People 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 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...

Bill is dead, LONG LIVE THE QUEEN

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.

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)

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.

I HAVE CANCER. FUCK CANCER.

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.

https://givealittle.co.nz/cause/helpdianabattlebreastcancer/donations