NHS MRI

Been a long time since I've made a peep here.

I've been back in the UK for months now. And, at last, the NHS and I seem to be learning to get along (knock on wood immediately). I managed to get an MRI scan recently, and last week I received the all clear. The inimitable Mme Borthwick accompanied, and we celebrated afterwards with visits to the local charity shops, followed by an appalling responsible amount of alcoholic beverages.

That's the report for now. 

Don't forget it's Canada's Brain Tumour Awareness Month right now. And for the occasion The Brain Tumour Foundation of Canada has compiled a list of 10 facts about brain tumours, which for the most part are interesting and informative (the facts, that is) (although I guess the tumours themselves are probably just as interesting and informative: mine tells me fascinating stories all the time). But then there's the useless, utterly obvious, and totally banal understatement called Fact no. 5: 

"Brain tumours drastically affect physical and cognitive abilities and quality of life."

Really? No shit.

Meanwhile, at their Merchandise Store: 

Bobblehead pen, The. 

They're made of bio-degradable corn plastic. 

I want twenty of them so I can stand them in a row and just look at them.

$6,949 is The Grand Total!

 

It's taken me almost a month to post this, and I must apologise.

Because it's such a horrible photo.

Actually, almost every photograph taken on the day of the event was rather dire, and this is the next best one - after the one I used for my Thank You cards - that shows evidence of my presence at the event. It also captures my general state of elation at having to wear The special Blue T-Shirt that Survivors get. I'm happy to single myself out in the crowd as a Survivor in The Blue T-Shirt, but I must confess that it's not my favourite colour, and it fits horribly over the already-excessive layers of clothing I had on beneath it. It was a chilly morning, what can I say.

You may notice that the box beneath the words 'My hope for the future is..." is not filled in. What was I expected to write in that box? "A cure"? "To live"? "To eat the ice cream I know is waiting at the finish line"? I still don't know what belongs in that box that isn't coated in the dark response that came to mind when I first saw it: "Nothing". Is it okay to not have hopes for the future? It saves on a whole lot of disappointment, perhaps. Or maybe there are just so many that they'd never fit, so why try to scribble them all into such a tiny frame.

There were other photos we took in which I am smiling and looking proud and happy and deeply moved by the support of so many people. I really was. I just can't put them up because they have been vetoed by the other family members whose faces are in it. So all you get to see is me looking a bit skeptical and unimpressed in The Blue T-Shirt.

But really. I do extend deep gratitude to everyone who helped out on any level. It's a pretty big deal and means so much to me. Thank you.

Score!

I HAVE REACHED AND EXCEEDED MY FUNDRAISING GOAL OF $ 5,000.

I am so thrilled by this that I can't even think of anything clever to say. Absolutely gobsmacked. Not only have family and friends contributed, but my mother's co-workers went out of their way with incredibly generous donations - in the name of her pierogi! Gratitude.

And of course, the food wouldn't have materialized without the assistance of Team Pierogi: Julia Kruk, Mary Kruk, Zofia Kruk, Teresa Kulisz, Ella Sudak and her sister Hania. And Robert Kruk, official taste-tester. 

Fabryka Pierogów

Emergency pop-up pierogi factory at the Kruk household. 800 pierogi in an afternoon. Dzięki dziewczyny!

Each robotnik has a specific job (that's right: division of labour. GASP.) One is on dough duty, mixing and rolling and cutting. (Potato mixes prepped ahead of time). Three are busy scooping and folding and frill-edging and dusting; one is supervising the pots of water and draining/browned-buttering them and tossing them on trays. The final robotnik in the mix shuffles the trays, runs them in and out of the kitchen to cool and arranges them in big plastic bins. And takes photos. It went on for hours. And there will be more.

This evening: tag-team baking with my mother. Well, sort of. I made two different ganaches for truffles, which was actually pretty easy. In the same amount of time it took me to melt the bloody chocolate, she baked four different bundt cakes. Hmmm. And I just kept eating bits of it all. Can I make it any clearer that there's just no way I'll be able to run very far next Sunday, cuz all I'm doing is eating?

I would like to say I'm stunned and humbled by the amount of generous donations that have poured in so quickly from friends, including many of whom I do not know but who believe in the power of pierogi in the fight against brain cancer. And the fact that my mother came up with the workplace luncheon plan in the first place, that she has rounded up her co-workers and got all of them so excited about the whole thing in what was probably only the span of a few hours.....it's quite magical that all those people have jumped on board. I'll be going over to the office to extend special thanks.

As for my own lovelies here and abroad: Grandiose xoxoxo to you.

Blues

The difficulty with quagmires is that they are quagmires.

I am frustrated and sad. Not good for getting motivated to train. I haven't really been running at all. I reach the end of the driveway and turn back to the house. That's been my life for a while. 

But I'm going to try again, despite having given formal notice of non-attendance. And I felt so bad when they offered to mail me my special "Survivor!" T-shirt anyway! So, pulling myself together again, albeit temporarily:

"Hi. I'm fundrasing for the Brain Tumour Foundation of Canada!

The Spring Sprint is their annual walk/run/shuffle to raise money for research and patient support services.

My mum is making perogies for her workplace on Tuesday 4 June. Pay what you will!

We're having an Open House (more perogies! and then some) on the evening of Friday 7 June. Pay what you will!

And on Sunday 9 June I'll go walk/run/shuffle along in the park for the Spring Sprint."

And I'll be truly grateful, I really will.

Yeeeeeearrrrgh! Dig deep, folks!!!

And please note: If you are outside of Canada, make sure you select your country from the drop-down menu at my donation page before you enter any other info. That way you don't have to enter a Canadian province!

Change

Hi.

I'm out of the game for the Spring Sprint. Why? I feel like shit and can't be bothered.

Feel free to donate to the Brain Tumour Foundation of Canada all the same.

My page there is still up for now, or you can always just visit their website and donate directly.

Cheers.

Shoe Time (nerdy pun gleefully intended)

Running again. Or walking maybe. At the Brain Tumour Foundation of Canada's annual Sprint Sprint. In Calgary. This is the link to the donation page. Back with proper updates and changes to blog soon. Because I am exhausted and confused. Whole process and a long day before that. Somehow something something too much and a weird Facebook app that is a copy of my donation page but without the text formatting and and and it seems that it might harass people. Which is a concern. Because I like to have control over how often I harass people. I'm unsure about having let the Spring Sprint/Facebook auto-connection happen.

Pretty Sick

 

Following the cupcake rant I had at the end of the post below (a rant which cheered me up a bit), I proceeded to type "i fucking hate cupcakes" into The Google, and lo and behold, I found THIS. Excellent. I am not alone. Thanks, Lucy, whoever thou art, for Hating not only cupcakes, but everything.

Aware as Ever

Pathological (human) charitable causes and their representations go through shifts in public taste. Which diseases are most fashionable. Glamourous. The most horrendous, or the most widespread. How many children children children.

I wear grey ribbons on the lapels of (most of) my jackets and coats, and only a couple of people in the last five years have actually bothered to ask what they are for. They've become passé, invisible, there are too many causes and too many colours and people don't even really wear them anymore. Even those revolting, tacky rubber wristbands are, thankfully, on their way out. The only vaguely ribbon-like awareness accessories are now in the form of one of two types of very recognizable gigantic bumper stickers: pink for breast cancer, or yellow for troop support. Notably the latter is not a biological disease, but everybody knows all about it. 

UK Brain Tumour Awareness Month is now. I think there's some kind of bandana project that happened on the 1st of March. Why only one day? And why was I not prepared with my own (obviously superior) bandanas or scarves or trinkets, or perhaps even some decent greeting cards (because eeeeeewwwwww look at these, obviously not even made by brain tumour patients) to give away, or maybe sell and give proceeds directly to researchers or neuro units at hospitals, or something along those lines. I guess I've been a bit preoccupied, to say the least. I forgot. There's my own degree of awareness.

If you followed the link above, you may have noticed that Brain Tumour UK has also just merged (again - the second time in approximately a year and a half?) with a few other charities, which is good and bad. It's now The Brain Tumour Charity. I don't want to say much, especially considering that I never have much to say that isn't a lot of insipid whinging. But. It's just one more corporate merger, the kind of thing that reminds me that the organization, like all charities, is very much a business, even though I try to keep that knowledge buried away. I pretend to be full of hope, because without big expensive branding (and re-branding and re-branding and re-branding), and the extremely wealthy people running the whole show and eating up a lot of the not-for-profit profits, I wouldn't have, let's say, a recognizable "face" to raise money for research and patient support. Because my own face and my own situation don't matter so much when there are countless other people affected by murderous cotton in their heads. In fact, my or our own situations don't matter much to the general public, nor do the situations of those who might have other medical issues matter, e.g. depression or cervical cancer or bladder cancer or brain hemmorages or rhumatoid arthritis. There's concern, but not too much. You end up in a closed circle, in disease-specific support groups that are saturated with hundreds, thousands of moving personal stories. It's wonderful and invaluable to have those circles, but the only public bodies that recognize your particular circle are exclusive corporations run (often, not always) by posh twats who just might sneer at your appearance when you turn up to their official events in support and solidarity (yes, I'm still sore about that one.)

As for the good part about the merger: more resources will ostensibly be available for research. That's the most important. Support groups and rehabilitation programmes are next in line, because they're for people who are still living through the mess.

Clearly today is one of my more bitter, selfish, misanthropic days. In part it's because I am also guilty of being one of those people who is concerned, but not too much, about other causes that haven't directly affected me. Such as heart disease. Someone came by the house the other evening, canvassing for heart disease something something something. And I confess that while I didn't have any money other than a little change needed for bus fare, I was also blank and numb, my only thought being that I Have A Brain Tumour (or, it's out but it'll be back), while you (the canvasser) or someone you love, has or had heart disease, we are in different circles, and how sad, how alienating, and one day I'll help if I can but right now I'm grey as a ribbon and fuck it all. 

Me me me, and it's boring, boring, boring. I am not my brain tumour, and yet it shapes my world/view. Today it's all nasty, horrible, grim shapes.

Like armfuls of those rubber wristbands. Gaudy greeting cards. Suggestions for hosting fucking cupcake parties. Cupcake parties? You want me to sell cupcakes to my friends and send the whole £10 to your charity? Listen. Despite my love of baked goods and sweets, I really, really (even when I was a little girl) dislike cupcakes and all that they stand for. Even when I occasionally forget myself, or simply think, hmmm, maybe my tastes have changed, I'm going to put that clump of icing-drenched sugarsponge in my face, my teeth invariably scream. There's too much sugar. Too much. And as for cupcake culture......all I have to say is this title of a Lawrence Giffin chapbook: GET THE FUCK BACK INTO THAT BURNING PLANE. And take your miserable cutesy diddlydoo cherry-on-top (with matching frilly cherry-patterned apron) with you.

All this whining about Charities Ltd. makes me think about how to improve on them, to come up with more innovative ways to raise funds. And, actually, for whom (No, not for me personally!). Little groups run by volunteers rather than a board of trustees and a CEO, maybe.

I just wish I wasn't so lazy.

Hayley and Nic's pic

I learned all my crazy superhero moves from my yoga teacher. She sent me this little design she made with her boyfriend to certify my warrior status, bleeding zipperhead and all. Such a beautiful surprise! Thanks Hayley!

 

Having said that, I'll never quite get the Virabhadrasanas right. I must admit that the simplest things are the most difficult for me, or at least that's how it seems. Something to work on, I suppose.

Megan's Mobile

Megan's hand-made brain raining love-hearts over my head at the hospital.

 

Over/View (Surgery no. 2)

 

 

 

34 staples

And it's gone!

The Destroyer

Yesterday (18 January) was the fifth anniversary of my first surgery (!!!). In an attempt to snap some kind of suitable self-portrait as part of my celebrations, this very auspicious shot emerged. It's not me in front of a string of multi-coloured xmas lights, no, no. It's me with  a laser blasting through the bubblegum dustbunny. This might just mean that I won't need another surgery for oligoastrocytoma grade II in ten days' time, because I've already done it myself. This photograph stands as indisputable evidence. Triumph. I'm calling the hospital to cancel right now.

Five whole years, though. I am very, very lucky. The tumour will always come back, it might choose to get vicious, it might not. But five years, and with no other treatments? I feel spoiled and soiled for having ever complained about anything. Seizures? Is that all? So what, Frances. When I start wearing scarves next month, it won't be to cover burns and patches of lost hair. It will be to keep the wound protected from cold and/or from the itchy wool of toques when I go outside. And after that I just get to have a really fantastic high-art hairstyle for a while. I'm stupid lucky, and definitely not as hardcore as some of the other brain bloggers out there. Need to raise a glass to them.

Happy anniversary.

Hi Hospital

There it is, on a sunny but icy day, giving up all its steam to cold city sky. And people wonder why there's an influenza pandemic going on in the city. We're breathing in recycled hospital air. Gross.

The Return

And so begins the New Year. I have landed in a snow-smothered Calgary and no knitted brain toque, as I requested in my last post, has materialized. Cruel. I have been reduced to wearing this standard issue pompom'd item. Its heat-retaining properties are quite good and it has proven to be a good repellant of water and ice, although the lining beneath what would otherwise be very itchy wool does not seem to breathe very well, so it carries a bit of icky oily scalp aroma. I have to remove it carefully when in public, lifting it off my head using slow, delicate movements, treating it like an expensive wig or overly-elaborate hat in case of a gust of stench impose itself on the delicate olfactory senses of the individuals standing nearby. Sigh.

When I started this blog it was meant to serve as a springboard and (sporadic) info-channel for some fundraising efforts: I raised good money, I ran the run, I made some fun notes and admissions, and in some way it was all a retrospective coping mechanism for my earlier tumour traumas. It hasn't seemed to have been working in real-time, however. That is, I'm back in the OR for another surgery in two weeks, yet I've been and am quite blank. I've had incredible difficulty sitting down to write something to send into the ether, so I simply haven't bothered. What am I supposed to say anyway? Why do I feel pressured to say something? At what point do (and this has been bothering me) confessionalism and extensive personal documentation of activities simply become exercises in vanity? Or do they? I like to think that these are handy awareness tools? That within a string of subjective experiences and thoughts put out in the public domain, whoever pops in to this blog now and again, stranger or not, might come away with...? What? More knowledge about brain tumours? More interest, more news? Probably not. And I don't really do any brain tumour advocacy. I'm not super-connected to the world of brain tumour blogs, despite sifting through them now and again, usually when feeling down and alienated. Or maybe that's it. And I am connected, quietly, in that sense. Being one more damaged-but-alive brain babbling away for other damaged-but-alive brains who are also poking around online, looking for something, anything, to do with the cancer that they share with thousands of others.

That, and posting updates in one place makes it a bit easier for globally-scattered friends to find out what's up, because sometimes I'm not up to doing the mass emails, or the individual emails or or cards or notifications or whatnot, even though I know that those people are concerned. Or just nosy. Ha. 

There's no reason why I should worry about not having anything to say, or about lacking a clever way to vomit my emotional turmoils out into the internet. So there may or may not be an explosion of information over the next few weeks and months. Maybe a photo essay, cuz pictures are a no-brainer? So to speak. I've got my cameraman lined up to do things like snapping shots of my legs in those machine-controlled waterwings they put on you after surgery to ensure you don't get blood clots while you lie there in a hospital bed, bored and sleepy and flooded with drugs and surrounded by other groaning post-craniotomy patients who may or may not be screaming at the nurses when they (the nurses) have to re-insert a catheter torn out during a fit of confusion, anger, and embarrassment upon waking from the special surgery sleep to find a tube in their penis. Which happened last time to the old man next to me who couldn't speak English. There were no interpreters around at that time of night, and the struggle between young frustrated nurse and aged, bleeding-scalp elderly man made my head ache even more. I felt awful for both of them, but it went on all night, and I had to ask for more morphine just to cope with the sight and sound of the two of them. It's shit for everybody. It really is.

Anyway. Onwards, blog or no blog. On 29 January, my valiant surgeon and team will once more prepare for armed battle with the Bubblegum Dustbunny in my head. And then I take over again. Kill kill kill.

Metabrain

Photo of anonymous model stolen from Zombie Research Society.

While lounging in the toxic fog of online social networking, I chanced upon this photo of somebody modeling a little knitted wonder. You cannot imagine my delight. THIS is what I want for Christmas. 

You can find instructions and photos of another individual wearing a similar creation here, because I'm going to need one in a few weeks' time. I will be landing in a massive pile of greasy Canadian snow, whimpering in the cold as I wait for my date in the OR at the end of January. This toque is the only thing that will keep me warm, that will keep me alive. Somebody's got to save my life. Somebody must knit me this brain. Somebody must give me the option of an auxiliary brain, or even a replacement brain. Just in case.

Aware of Nightmares

Two weeks ago, the holy month of October began once more, meaning that the time for Halloween is near and that the knives must be drawn for the carving of pumpkins and heads. October is Brain Tumour Awareness month in Canada and my awareness has been astute to the point that I haven’t felt like sitting down and writing about it all to the ether. The only thing that seems to be going on is Info Days, but it costs money and I don’t really feel like Info-ing myself about myself around plates of bad sandwiches and lukewarm cups of coffee.

See, I had my own info day last month when my MRI showed that the bubblegum dustbunny has been cultivating itself again, albeit only by a miniscule amount and without any increase in aggressiveness. Growing, more or less, according to plan. It is consistent, displaying extraordinary obedience and an enviable sense of decorum, precisely the sort of goody-goody that is bound to rebel in the most hideous way as soon as puberty sets in and the glories of sex, drugs, and rock n roll descend upon it. It can’t be killed, of course – it will always grow back, a perpetual zombie. But it can be somewhat sterilized, so to speak, mutilated before it reaches the age of reproduction and goes out and gets itself knocked up and squeezes out further versions of itself, polluting our planet with inferior beings. My inner eugenicist leapt out as I made the decision to subject the thing to a second surgery in several months’ time. Sure, I could keep watching and waiting, but I’d rather be cut open and get another round of fantastic photos of my inner gore than to have to deal with a growth that – suddenly and unpredictably – might show itself to be inoperable. I have no interest in the otherwise inevitable course of zaps and drugs: the prospect of these options actually terrifies me and I have been unbelievably fortunate to avoid the threat of them thus far (touch wood). Surgery, on the other hand, is annoying but safer, and the only thing that scares me about it is that the morphine guarantees intensely unpleasant constipation for an extended period of time. Friends and family need only fear my temporary Roid Rage for a couple of weeks.

See? Confident. Now I just need to notice that summer lazy time is well over and I should actually use my running shoes instead of admiring how they gather dust in the corner. In a few months I’ll have plenty of time to truly vegetate during recovery.

We Are All Chthonic

Virgin Media's London Underground WiFi has arrived at last!*

Now you can "Keep up with the world above ground even when you're Underground."

What this really means is that, prior to the completion of his plans for Virgin's commercial space travel, deep sea adventures, and whatever other why-not business ideas, Richard "Swimming with dolphins is always high up on wishlists of things to do before you die" Branson has opened communication channels between us and the dead. Persephone is delighted to report that the fast-approaching Winter of 2012 is sure to be an unprecedentedly happy one.

"Hanging out in Hades half the year is shit," she states, twirling a wiry strand of shimmering pure gold hair around her finger. "I've spent, like, too many millenia unable to talk with my mum during the holidays 'cause there was no phone or internet connection in the Underground. Now we'll be able to chat and Skype and share photos on Facebook anytime I feel lonely or bored. This will be The Best Christmas Ever!"

Thanks to the new deal between Virgin and TfL, whenever Demeter steps onto the platform of a designated WiFi Tube station, she'll be able to connect with her daughter and experience momentary bursts of happiness that, to the rest of us, will be experienced as small floral farts, reminding us of the springtime that will eventually occur when Persephone returns in the new year.

There have been some safety concerns regarding the implementation of this new hi-tech system, however. In response to speculation that distracted passengers may be less likely to mind the gap, and more likely to not stand behind the yellow line as trains approach, Branson throws back his brittle mane of hair and chuckles.

"I don't see any problem whatsoever. Our super-fast Underground WiFi service lets you update your status even after you've been lacerated and burnt to a crisp on the third rail. You're not really dead, you're just taking a little trip away from the land of the living. Go on, make your Facebook Friends jealous."

The service is provided free for everyone until the end of the Olympics. After that, users will have to pay.            

#Lethe

*This has nothing to do with my concerns over the ever-increasing saturation of my surroundings by radiation-emitting wireless devices.

Boredom, Tedium, Difficultatem

Four months since my last post and decompression still hasn't really occurred. My spine is still coiled too tightly around itself. By banging my head against the keyboard I eventually typed out something meant to resemble a thesis (it has gold letters on the spine and I paid for it: isn't that enough? Say what? The chapters are supposed to be "finished"? Oh. I forgot that part). In a week's time I'll pretend to defend it and then pretend that I'm happy to resubmit the whole thing as I know I must, and pretend to be happy that I enjoy the whole field and the institution with its campus that has no decent coffee and is inundated with incompetent admin staff, when really, I just can't. I'm quite beyond feeling sorry for myself: most of what I am doing right now isn't myself, so what's to feel bad about? It's not my fault I forget things. I am wasting time, talent, life, all those things that shot to the top of my ludicrous list of so-called priorities after the cerebral blob was discovered several years ago. Somehow life has slipped down on that list and disappeared around a corner again, like, Look! real life (including Real Life: Normalcy of Job and Team Werk zealotry and Assets and H=A=P=P=I=N=E=S=S during two weeks' vacation time in economically exploited tropical countries, &c.,) is over there and it is waiting. It's peeping out from behind those McDonald's grease bins. Like, hey Listen! You're not living now...but you're about to. 

Christ. Am I wallowing in my alienation again? Everything is now, so what am I doing grinding my face against the inside of my face. 


I suppose I'm a bit deflated following a recent "mass lobby" of Parliament that I attended alongside scores of various brain tumour charity people, patients, carers, some political navigators, and an unfortunate but inevitable rash of self-important rich bastards who were pleased with themselves for pretending to care about people with brain rot.You! I call. You in the pearls. With the Tory hair! I think you flushed part of your heart down the toilet when you had that horribly painful shit that one time...

Here I am with my tiny blue head, right at the centre of the action, a bit clueless as to what I was trying to accomplish. Mostly trying to not return the anti-blue head glares from those few particular posh fuckwits. It's a good thing that the folk who actually work for the charities are decent: their hospitable and encouraging presence, alongside patients and some scientists and researchers doing the heavy work, is what made the day alright. Indeed, I do exaggerate about the poshos: there were only a handful of people whose eyes I was prepared to spike with my respectable-looking high-heels. I really did meet some good people, people with similar brain rot and similar experiences; people with severe brain rot and fifteen years' worth of incredible still-alive-fuck-you-tumour experiences. Those were bright points in the day. Thanks especially to Basia and to David.

The purpose of the day was to try to garner MPs' support and signature on an Early Day Motion calling for a little attention for brain rottees. The closing parts of the EDM refer to The Brain Tumour Consortium's Manifesto, and the most important point in that manifesto is that greater efforts must be taken to ensure prompt diagnosis of brain tumours in the UK. That means medical professionals need to be a little more on top of things: recognition of symptoms, fast placement of heads into diagnostic imaging machines, etc. I, for one, would not have received a diagnosis for several months after my first generalized seizure in the UK. Being dumped in the hospital by an ambulance made no difference - they took blood and asked if I was epileptic and I said no and they offered me a cup to vomit in then sent me home on my own. I was extremely fortunate that I already had a trip to Canada planned two weeks later, where they did things quickly and properly (and at no cost, it should be noted). Seizure? Immediate CT. Abnormality spotted! Take these drugs for now. MRI arranged... None of this sending the patient home to wait for weeks before a consultation about seizures (not even a scan) is arranged. Therefore: Dear MPs, please take note and tell the doctors and get some more protocols and machines and and time and money.

But wait! What's this? Has the NHS been stripped down to a pile of bare bones by the very vultures to whom we lobbyists did genuflect? Oh dear me. And that's precisely what made the day and the proposed actions feel incredibly futile.  

I hear the guffaws and I know, I know. I do. Why go, why lobby, why play the game. Parliamentary politics - bah blah bah blah, etc., etc.  But, other options, then?
I suppose that, Come the Revolution, brain tumours will cease to exist.  
We won't even need efficient, free, top-quality healthcare because ALL cancers will be immediately blasted into the hearts of the counterrevolutionaries lined up against the wall. 


I propose that the next attempt to "mass lobby" Parliament should be led by a qualified team of epileptic brain rottees who will march into the House without having taken their anti-convulsant medication and proceed to have a mass seizure on the hallowed Floor. And then we can also perform a seizure of power before they've had a chance to figure out what's going on. Yes. That is how a brain tumour invades this country's government. Unfortunately, I'm still somewhat short of energy for any or all of this. I'm still where I was at the start of this post: In a week's time I'll pretend to defend my "thesis" and then pretend that I'm happy to resubmit the whole thing as I know I must, and pretend to be happy that I enjoy the whole field and the institution. And then I'm going to have to figure out a way of being that is not Real Life, but life that I like and that is free of all the rubbish I've been spinning and shaking in for too long - all the stuff that would feed the wrong kind of growth. Don't need it.

Fake Blood

New Growth

If you're hip to the down-to-earth-for-loads-of-money home deco, you might be familiar with them. The twig balls. No one knows why, but they are often found in large bowls or on decorative plates. Tall floor-vase things containing bundles of very long scraggly sticks might be in a corner or against a wall close by. Primitive. Rustic. Twiggy. Is that a piece of not-so-old furniture over there that has been beaten-up, stripped of paint, re-painted, then partially stripped/sanded again so it looks like it came from a 19th century farmhouse? And a very expensive leather sofa beside it? Perhaps a delicate but cozy blanket casually draped across it? And - what's this? Are there some tiny sticks in a tiny delicate glass flute or jar, soaking up scented oils that diffuse an overpowering aroma across the room in the way that potpourri used to, before potpourri became passé?


I've got twig balls. And I've just written a classic blog entry: artificial cleverness about nothing.

What I wanted to say was that today is the beginning of Brain Tumour Awareness Month 2012. I haven't had the time to prepare anything special: I can't run, I refuse to stand in a shopping centre with a coin bucket, I will not sell horrific charity xmas cards. I'd make some of my own, perhaps, but there's too much work to do with finishing skool. So close to completeion! I thought perhaps I would present a month's worth of ridiculous photos of new growths on the outside of my skull as my own little online awareness campaign because it seemed easy and I'm excessively vain, so I started by snapping loads of pictures of myself out in the garden with about 10 different objects pinned into or perched upon my hair. But then I loaded the images onto the computer and discovered what I look like in daylight. Seeing myself in the mirror of the windowless bathroom every day has fooled me into thinking that I was holding up well despite eating crap and being under-slept. The rings under my eyes. The state of my complexion. Maybe I'll feel better about it all tomorrow. Or maybe after a few months when I can be free of skool forever. Because when hundreds of shots produce only a handful of images that are only somewhat alright it means maybe I shouldn't worry so much about skool, or about spreading awareness about brains, and maybe trying to be more aware of taking care of my own brain and my own tumour. I can't finish skool without the brain (even though skool is also killing it). And I'd like to keep the tumour at bay for as long as possible (it loves when I eat crap, don't sleep, panic myself into whorls of vomit about my thesis, and otherwise generally convalesce).

So I guess that's what Brain Tumour Awareness Month will have to be for me. Me me me. Eating the stupid kale rather than buying it and letting it rot in the fridge while I gobble pastry and instant noodles. It's taken a full afternoon of pouting for me to come to this conclusion. This banal post isn't even a report of the conclusion; the conclusion has come to me in the process of writing the whole thing out. Oh blog, your handiness. Your therapeutic qualities, your useful provision of spiritual exercises. Me me me. Is this why everybody blogs? You write your diary to the ether, someone might read it, find it insipid. It's alright. A little click will take you away again.

Off you go! Awareness of brain tumours. Don't grow one: use a hands-free set. Eat your greens. Mushrooms absorb toxins. Sport a grey ribbon! Watch some films about severed heads.

Relay GB

(this is not my xray but might as well be)

If I wasn't hobbling (mentally and physically), I would be in this.

The object is to run around the perimeter of Britain in stretches of 26 miles. So, one marathon at a time. It can be done in teams, so snails like me could run a quarter - or maybe a half - and someone else would take over the rest. Or a team of 26 people could run a mile each. Not a bad idea if you never run and your friends will shell out cash just to see you in a pair of shorts and trainers, nevermind shuffling along at faster-than-walking pace for a few minutes. 

My thesis and my hurt toe are in my way, or I'd have been harassing people for donations long ago. Who knows - it might work out yet. I need some power healing.

If you can't run, simply Give them (Brain Tumour UK) your money. Give them your money. Give them your money.


Or give something via my page. You know. The one in the side bar.


Or just give me money. I need to eat if I want to power heal. I need to pay the electricity and gas bills too. Patrons, please.

Today has Returned

I thought it might be a nice day to go out and slither around the city in a menacing way. I caked a lot of makeup on my eyes and adjusted my hair to a corresponding super-sleekness which would have looked completely normal were it not a fading turquoise. I'll show them, I thought. I pulled out an elegant skirt. I couldn't be bothered. Instead I put on comfy stretchy tights and a longish shirt because I have fleshed-out slightly this season from not running or anything due to over-stressing, insomnia and busting up my toe, well, any way I still look okay enough. It's too cold to not have a coat covering it all up anyway. Out I go to glare at the world. I didn't want to. I bumbled about. Made some soup. Pressed some keys on the piano and then on the computer and then thought about going out and talked to my sister who didn't even want to hear about how today is the fourth anniversary of my surgery, It's in the past, and whatever and &c. Well, I don't know how to feel about it, is all. Some of the makeup ran a little. I found a number of things funny. Then I dreamed of bubble baths and had some chocolate-covered biscuits. I decided I didn't need to be menacing and what about something nice that I never get to do like seeing the exhibitions I can never afford. It was too late - rush hour and places of interest were shutting by then and I didn't really want to gift myself with anything else to make myself feel better about being alive after all and why bother with ludicrous glares at people who have nothing to do with me. There's nothing to celebrate and there's nothing to grieve over. It's another day, it's almost done now, and that's all. I was fed spaghetti and it was very nice indeed.

"Eat My Flesh" (say the pumpkins and saints)

October is Brain Tumour Awareness Month in Canada: grey ribbons and wristbands for the brain, and various orange merchandise to represent pumpkins. However, I provide hiermit a photograph of a carved turnip, which I think best captures the spirit of orange-grey month. The contrast between its sickly pallour and glowing interior charms me.


Now, as we all know, October is the host month of the King of Holidays: Halloween. There is no better fête than All Hallow's Eve, and to observe it with brain tumours in mind, we must wear carved pumpkins over our bodies' most important bone-casing devices (usually called heads) on the final night of the month. Orange and grey, orange and grey. Then the next couple of days continue with death in mind, but as of 3 November we can shift into full-time Remembering mode, cuz lots of people have died from brain tumours. Lest we forget, tumour diagnoses are rising substantially, so remember the future too. Remember your wireless devices. Consider spending a whole day not pushing any buttons.


The schedule and instructions for month's end: 

• All Hallow's Eve (31 Oct) - cover your skull and its grey matter with Jack-o-Lantern skins. Go to Hell.
• All Hallow's Day (1 Nov) - eat some gummy brains candy and light a candle for the strange people who whipped themselves to death or who allowed themselves to be torn to shreds by lions. Enjoy Purgatory by watching re-runs of golf tournaments.
• All Soul's Day / the Day of the Dead (2 Nov) - take off skin to expose skull decorated in grey ribbons. And fluorescent paint. Join parade and eat sugar skulls. Return to Earth and donate a splash of a loved one's favourite drink to their grave. They like that kind of thing.

You can also visit the Brain Tumour Foundation of Canada to see what they're up to during Awareness Month. They have a traveling exhibit of dead people's hats (well, some are hats of the living). You can send your own hats or pictures of hats of tumour suffers, survivors, and victims to the Foundation's collection. This isn't actually a special Halloween thing, although it is tinged with sufficient morbidity to be so. I am tempted to send a hat with a head still inside, or something equally ridiculous. 

They also have events going on across Canada - mostly info sessions, reports on research developments, sharing of personal stories, and motivational speeches. I don't know why they haven't planned a Halloween party. Too much fun? Genuinely too scary? Death or lack thereof is pretty central to the entire support-for-patients-and-caregivers portion of the Foundation, I should think. But in any case, do feel free to send them hats, attend a session, or send a few dollars their way. They are an invaluable resource for brain tumour patients and their families.