Begins Friday Next

Initiation

So, I went to have my radiation therapy mask made. Photos of part two (the actual mask) to come. But here was the first stage, the moulding of the back of my head with expanding foam that almost scalded one of my ears. When I sat up, the entire foam backing, plastic sheeting and all, were still attached to my head. Such an elegant photograph. 

" it's always night, or we wldn't need light. "

said Thelonious Monk (via Jeroen Nieuwland). And I feel that this makes sense. 


 

blood gloop sparkle steel shards

And after glittering for a few hours before I was set free from hospital, I went home and glowed, a few days later, in warm orange tones.

And sometime after these photos I had the staples removed. I gots no glam shots of that.

2016 = 2013 = 2008

Now that I'm just past my third craniotomy and resection of the bubblegum dustbunny, let's revisit the images my surgeon captured for me back in 2008. I have not asked him to snap any more shots since then, for I don't imagine the appearance of my brain has changed dramatically. And yet, my convalescence selfies are also similar every time (staples, blood, scars, etc.,) except they feature an array of colourful new clothing to further spotlight my penchant for vanity. I will therefore continue with those.

 

The 2016 surgery went smoothly and relatively quickly, and I emerged quite lucid and in control of myself - my thought, my speech, my body and motor control, and my emotions were not affected in the way they were the last two times. I didn't have to go to the ICU and was wheeled straight into my room. I was released from hospital after two nights and part of a restless day, departing with a few bouquets of flowers and a tramadol prescription, morphine no longer possible due to detachment from intravenous drip. Damn. 

What was different this time was that I vomited a blackish-green liquid about nine hours after arriving in the room. I'd taken care to not drink water for most of the day, and I'd only crunched, tentatively, a few slivers of ice. The upsurge of liquid was unexpected and totally unwarranted, although in hindsight I consider it to have been a blessing of sorts: that anaesthetic. It's got to get out. It's the worst part of it all, I swear.

Another thing that was different was that there were markings on my forehead (and a few on the side of my temple) that were leftover from the surgery. Four dots from a surgical pen that are used to mark the spot for, presumably, part of an apparatus that holds my skull in place during the drilling and removal of existing clips and the lifting off of the existing bone flap - plus the use of lasers or whatever mysterious means of targeting beams into my head to construct 3D images to consult while they simultaneously pick around with little tools in my brain. Behold. The four dots (and three on the side, but they rubbed off quickly, so whatevs):

 

I must report with great honour, that my partner in crime very recently had these four dots tattooed on his fuck-you finger, a valiant act of true magic so that the remaining bits of tumour (yep - there are always some leftovers) know they are despised and not welcome. Radiation and chemicals will be employed to sizzle those bits out. But having the fuck-you finger pointed at it will be the ultimate tool in terroring it out of my skull.

And finally, while the pathology of the tumour is exactly the same as it has been since I was first diagnosed, the WHO has changed its naming system. I will miss calling my tumour a Grade II oligoastrocytoma. I am apparently now the host of a Grade III anaplastic astrocytoma. The shift in naming is significant, not because it has gone "up" a grade, but because it demonstrates how much knowledge has been gained in the last eight years: an unpredictable tumour with a few cells showing anaplastic tendencies has turned out to be more unpredictable and dangerous than previously thought. That is, the kid swimming around in the water with a fake shark fin strapped to his back is, in fact, himself strapped to the back of a real shark. Meta meta meta. We have always known this.

charms

salt lamp glowing like how i imagine hearts

 (These just a few in addition to so many kind wishes! No better way to get through the absolute tedium and banality of imminent hospital stay than to bask in glittering laser beams of good thoughts from good people)

 

   

 

 

 

Open Letter to the Ineffable Un-Thing (or, Pep-talk to Self vis-à-vis Death, so-called)

Get in the sea already.

Okay, seriously. I'm getting tired of your face. It's not even a face. You have no nose. You give the impression that you have an eye but that is only because I have painted you that way so that I can stare you down. It's an effect of lighting or something, you radiant skeleton, you stereotypical representation of that what is actually a void, a nothing. Not even a space - just nothing in which there is no breath and no sight and no corporeal presence. I have no interest in negotiating with you because your terms suck and I find you boring. Boring. You have hurled an abhorrently boring experience at me and it wears me down, yes. I am made of pits, I wail, I cry, I have hairline cracks in my tooth enamel from the solid jaw clench that has replaced what used to be bruxism but has come to a literal standstill. I am crushing my own teeth, not only at night but in daylight. I do not appreciate rotting teeth. I do not appreciate anything that makes my lipstick look like crap, as it invariably does anyway.

Paraben glamour defect made visible during rising storm of fuck-you.

And seriously, I am tired of anger and sadness and shoulder shrugging, as if chance had anything to do with anything. Shall we dance together beneath the wheels of a bus as readily as we might through the experience of brain rot? Will it be omas of skin or throat resulting from the massive quantities of pesticides I have been exposed to in the last couple of year (((those bugs had to go, dude. I thought perhaps that oblation might have appeased you, but it seems to have strengthened your resolve to tackle me. Or perhaps it added to the acceleration of the bubblegum dustbunny's growth, in which case I call foul again. The choice is this, or this. Nothing or nothing))). The luxury of choosing is something I can only hope for.  

Not interested.

I am tired of writing to you now and I am going to stare gormlessly into the middle distance where you are not. Hang out on my shoulders and cripple me for however long - I can stretch you out with a good downward-facing dog. In the meantime, I refuse to sustain fatal injury from my upcoming treatments against the motherfucker in my brain, so you can forget about swallowing my existence in the near future. I have things to do and people to see, and every time you call I will make excuses as to why I can't come out. Usually I will be washing my hair. See you later later later later later and whatever whatever.

New

Following a recent consultation with my surgeon, I have decided to let him cut my head open in the new year. Surgery number three. What to say about that? Third time's a charm, of course. Or, three strikes you're out? Ha. Nah.

The surgery will be followed by a course of radiation therapy combined with chemotherapy. I can't say I'm too happy about the detrimental effects that the latter two will have on my general well-being. The doctors lie when they say it's "much safer now": the zapping technology has really progressed, blah blah blah, and they stare at their feet. As for the chemo... well. No guarantees! Yay!

But the cool part is I'll get my very own custom-made mask for the zapping. Photos to come most definitely! And (very notably), the temozolomide is free (unlike in Ontario and the maritime provinces, wtf Canada!). Because for all the things Alberta can be derided for, its health care system is pretty good.

None of these treatments will kill the bubblegum dustbunny. They will burn it good, with just a hope that its return time will be significantly prolonged. 

I'll be in Europe for the holidays, then back to Calgary for the imminent battle.

Well, right. Now, then. We'll see.

So, the bubblegum dustbunny will always grow back and requires constant supervision to ensure its aggressiveness is not increasing by, for example, a sudden burst of spazzy growth, or growth in a direction that is not into the void of the cavity it originally left, or that it isn't throwing an angiogenetic leave-your-keys-in-the-salad-bowl party.

My most recent MR images do show a bit of new growth that is not particularly remarkable and doesn't suggest anything to panic about. However, the growth merits new treatment in the near future, perhaps a combination of strategic attacks this time. Its not certain yet. I've been referred back to my surgeon for his opinion on the matter, so once again my life is in his hands. Just figuratively, for now. They are small, smooth little hands.

It is with a sharp curl of lip that I take and have always taken such news, with a little shrug, a head tilt, a nod, then a series of consecutive nods to indicate that I'm annoyed, helpless, disappointed, but not surprised, not about to faint, and keen to get straight on to a course of action. Hope/less. Nothing to do but wait.  Fuck this shit.

&

It is October 2015. Around this time in 2007 I was in the fraught process of reaching my first diagnosis. I've since gotten away with two super cool surgeries. If this mirror breaks it will bring me more luck. And if it doesn't break I don't need luck anyway. Nor do I need hope. It has occurred to me to foster an attitude of hopelessness. As in, hope less, live more. Not much comes of hope but passivity. I have more to say on this, but in the meantime, fun! Pumpkins! Leaves! Indeed.

The Destroyer's October Arsenal

 

Boots for kicking, pumpkin for hurling, ribbons for strangling (tumours, of course).

Kill them all, forever and ever.

 

X

Yesterday has been repeating itself since it was invented in 1582. 

I have consulted Wikipedia, that handy repository of inconsistent facts and lists, regarding a small selection of historical events that have taken place on the 1st of October. It's an interesting day. Many disastrous things happened, like Disneyworld and Fascism and Ford. The first Soviet five-year plan was implemented, Nazis stormed Warsaw, Franco became head. A new British tabloid screamed as it entered atmosphere, Mao implemented a new China, and God was like, "Hey USA, I love you so much I'm going to put my name on your promissory notes." Finally, in 1880 Edison opened his first electric lamp factory because it was high time somebody started to make a profit from an invisible and infinite resource, i.e. electricity. 

(I'm more of a Tesla girl myself, dreaming crazy wireless glitter clouds and lasers and all manner of ostensible impossibilities - probably because they are possible. Here's a Tesla thought:

The economic transmission of power without wires is of all-surpassing importance to man.  By its means he will gain complete mastery of the air, the sea and the desert.  It will enable him to dispense with the necessity of mining, pumping, transporting and burning fuel, and so do away with innumerable causes of sinful waste.  By its means, he will obtain at any place and in any desired amount, the energy of remote waterfalls—to drive his machinery, to construct his canals, tunnels and highways, to manufacture the materials of his want, his clothing and food, to heat and light his home—year in, year out, ever and ever, by day and by night.  It will make the living glorious sun his obedient, toiling slave.  It will bring peace and harmony on earth. 

- "The Transmission of Electrical Energy without Wires as a Means for Furthering Peace" (1905)

Needless to say, peace is bad for business. Free stuff just doesn't make money, and unequal access to resources for living is essential to the practice of Capitalismus. Poor Nikola).

Anyway. Back to the first day of the Xth month, and the reason Edison's electric lamps caught my attention (aside from the fact that the list was chronological and I saw that factoid first). Something else transpired on the same day almost a century later, something that demanded the use of electricity, free or not: the very first brain scan using x-ray computed tomography (the mighty CT scan) was performed in London in 1971. CT voice: Hello heaving ball of storming electrical pulses that controls the central nervous system! I am the preliminary device used for discovering lesions that corrupt thy functions, often leading to the mighty MRI machine that confirms the true nature of the lesion(s). 

Surely this event is just one more reason that October is observed as The Month of Awareness of Grey Matter Perversions. I've written many posts on this blog about the various brain months in different countries (but especially Canada's October, because it's a good month overall). Basically ever year I babble about them because 1) I get lazy engaging with updates in the tumour world, and 2) I don't otherwise have too much to say about my bubblegum dustbunny since my last surgery. Thankfully it's just hanging around, being lethargic, and that suits me just fine. I like to forget it's there.

My next MRI scan is coming up soon and I'm performing many spooky Halloween rituals to ensure that it shows a continued lack of change. I must report that when I am inside the machine my noggin becomes the power centre of that whirling plastic and metal universe shaped like a donut. Everybody pretends it doesn't happen, but really my head begins to spin like crazy and becomes like Tesla's Egg of Columbus (see a demo here. The soundtrack is exceptionally special). So, wish me luck.

Knowing of the Unknowns

** I wrote this post near the start of 2015 but never published it. So. Here it is:

I carry an oral syringe of midazolam in my bag everywhere I go. It's an emergency benzodiazepine, a fast-acting sedative for squirting along the gums and inner cheeks. I have never had to use it thus far (touch wood), but I keep it with me as a psychological and emotional sedative, a personal talisman to ward off the fear of potential postictal violence, should I have a tonic-clonic seizure in a public place. Or even at home: there was a particular episode during which reportedly I was demonic in absolutely every single sense of that word. I had the super strength and the howling and the blather hissing). However, the chances of the drug actually being administered by anyone except my partner are rather slim, and I may never have to shove it in my face at all. It's simply the presence of it by my side that puts me at relative ease. In fact, I suspect it was prescribed chiefly for that purpose, to stop the neurotic, agoraphobic tension and mania I was developing. After all, it's low dosage, intended for epileptic children who have chronic seizures, and its effect on me would most likely be just a bit of euphoria and drowsiness. In other words, probably very nice. A less sympathetic GP would have refused or not even bothered to prescribe such a thing, especially to someone who does not suffer daily or even regular hardcore seizures.

Midazolam, I have discovered, is also used in capital punishment in the United States. It is administered as part of the cocktails of horror injected into the bodies of people who the State has decided are not worthy of life, and its use (or more accurately, malicious misuse) as part of those injections has come into question recently.* It is supposed to sedate, to help take away the pain of the poisons to come, an agent presumably in accord with the constitutional guarantee that such punishment will not cause unnecessary suffering before actual death - not that anybody actually respects the constitution when its decrees are not in their interest. It seems obvious to me that if death by lethal injection is not instant, then for the prisoner it is very possibly a trip that will hardly stay euphoric, a trip into a massive time warp in which one flies through a near-eternity of mental and physical hell as the body is gradually burned from the inside. And obviously, that's the whole point of the punishment, that suffering, because death alone is too easy. While we can't really know the details of the particular suffering that is not visible from an external vantage point, the sadists approving the administration of lethal injections surely know at least a little about how much it hurts and what kinds of internal pains and terrors it unleashes, just as the perpetrators of "intensive interrogation" know how the whirls and whorls of ye olde truth serums can produce a wealth of information. Torture is torture, yeah? Midazolam, like other benzos, is not necessarily going to make a person lose consciousness, but it's gonna throw one into a lucid state where who-knows-what will surface in psychological and physiological experience of the/their world, and at what intensity. Perhaps it even amplifies certain sensations? I don't know, although I've got some idea of it because I take another drug in the same family on a daily basis, just at a very low dosage and in pill form. All drugs do everything at once: they are their own side effects as much as their assumed function.

The excruciating pain of Charles Warner, the latest* in a string of State executions of "unexpected", length, those oops-that-took-a-while incidents, began with administration of midazolam as the first drug in the mix. Who knows how long he was still conscious during the State's supposedly most humane form of punitive erasure from this planet. The resulting cluster of media reports immediately caught my attention because of, well, the strangeness of employing the same emergency sedative I carry as the one used in some processes of capital punishment. Strange, I think, because for me the drug's function would be, at its extreme, to save my life, whereas for a prisoner being killed by the State, it's function is........to also save that person's life. Save their life just long enough that they experience maximum anguish. Midazolam is not necessarily a pain killer, it doesn't make one oblivious to everything (i.e., imminent and/or current pain). Even overdosing is uncommon. Maybe there's a "mehhh so what" moment before the paralytic and heart-stoppers are administered, that little bit of euphoria and drowsiness produced by sedatives. But then.....then there's a very lively death for a calculated and "civilised" average (yes, they call it that) of seven to ten minutes or so before the body and brain shut down. Or, oops, eighteen. Or, oops again, forty-three, or ninety, or one-hundred and seventeen. I'm certain there are documents out there that chart the durations of American prisoners' ontological cessations, but obviously positivist methodologies don't take subjective experiences into consideration. Because, for the prisoner undergoing lethal injection, how much longer is the period of dying than even a single minute, whether or not they "show physical signs of distress" to those in the witness gallery? A universe can occur in the space of a minute. And while nobody knows exactly how long it takes to die until they die anyway (and then there's no way to report back), enough knowledge exists about the detrimental effects and affects of the particular drugs being used for the purpose of a painful death. Maybe that's one reason why death by firing squad (presumably the fastest, one would think) is now only somewhat available in Utah and Oklahoma, and even then only under special circumstances.

For those who are interested, here are some super-glam photos of execution chambers, complete with a really hip bit of aesthetic babble. Here the author describes them in terms reminiscent of a vacuous art curator describing an exhibition for an arts grant application, albeit not without some truth:

Those reflections may come in the ghostly, eerie images of America's death chambers, collected from some of the 32 states where the death penalty is still legal. These rooms are empty more often than occupied. Built within prison walls, they are spare and cold and clinical. But what remains carries its own weight — a single gurney, a mirror, a clock hanging alone on a cinder block wall.

The majority of the photographs are highly stylized and come from Lucinda Devlin's The Omega Suites, which depict the architecture of the death penalty. The objects - and spaces - do carry a weight, an antimatter so dense that one can look at them and judge them more easily in terms of framing and colour than by the events in which those objects were involved; the events, for most people, can only be imagined, and only momentarily at that, especially when there are no bodies present. The weight these objects and spaces carry is themselves. They carry the invisible weight of capital punishment's political architecture just by being objects created for that purpose; they carry the weight of being aestheticized objects, and the weight the viewer's imagination projects on them. It's the invisible strings between the politic in the objects and their presence in well-framed photographs that creep me out, for fascism slithers there and not just in the act of capital punishment. And yet the images are essential to look at (as are audio recordings such as these). 

So yeah. The hospitals at the core of the correctional facilities, the galleries in which arts happen, the skillfully made objects so fortunately empty of actual flesh in the photos. A making and unmaking of the world, spaces in which life and creation are preserved for the sake of life and creation and preservation - all of which contain and are pain, sickness, horror, nightmare, destruction.....

And yeah. Midazolam. And the grinning face of Hegel.

** And and yeah. Here's a pretty cool article at Mother Jones that I found just now while giving this months-old post a quick glance over before posting. I'm glad I'm not the only one who sees how fucked up the uses of this stuff is. You can't make this shit up. **


 
*i.e. at the time of writing this post.

Things in the firmament is Things like non-Things

Right. So, I didn't take a photo as perhaps I should have. But then, the photo might have been even more cheeezy than the moment itself.

It was just a rainbow, a little more special than usual because I haven't seen a fully arched one for a long time, usually no more than fragments shooting off to whatever horizon. This one was akin to something from a storybook, except the sky was dark grey rather than blue, and there were no fluffy clouds on either side. Sitting here at my desk, typing up words of encouragement to a newly-diagnosed woman at my brain tumour support group, but feeling a bit glum and hopeless myself, and very angry that it was dark, rainy, cold, damp, yuck in the middle of the afternoon, when suddenly: it appeared. I got really excited. I lifted my fingers off the word "hope" and stared. Seeing in things in the sky that are not police helicopters tend to fill me with a peaceful hippie glee, and I have to call out to whoever is nearby to point it out, to share my excitement.
 

Many years ago in Calgary, for example, I was getting home from the bar at about 4am. Not particularly intoxicated - that is, not so much that what I saw was not real. It was winter, and the sky lit up with aurora borealis as I approached the house. I had seen the auroras in Calgary on a number of occasions before that, but because the city is not far north at all, sightings are a rare occurrence and are nowhere near as spectacular as those in the arctic. But that night whisps of white and blue and green, maybe the tiniest bit purple, materialised, and I ran to the front door as fast as possible lest they were to flicker away before I could wake my parents. I made no effort to enter quietly. I got my mother out of bed and brought her outside where I pointed upwards with joy and awe...and she squinted up at the lights, nonplussed, then looked me up and down. "Frances, you stink,"  she said and went back into the house. I remained delighted and stared and stared until they de-materialised.

Today's rainbow lasted no more than five minutes, and the force of it really set off sparks for me, especially considering what I was typing at the moment. It actually added force and greater sincerity to what I was writing, and reminded me that the words of comfort I offer to fellow brain-rottees apply to me as well. My cynicism and anger and hatred and despair run from my skull down to my heels and back up again, but there's still some padding there (especially around my belly) that contains hope and other such nonsense. If I didn't still have hope I wouldn't have the capacity to continue being such a snarly bitch.

Would YOU eat dark matter after your workout?

So there it is. Events in the sky that are no more than reflections and refractions of light in the earth's atmosphere still rouse absolute awe in me because, well, 1) they look pretty cool, and 2) they terrify me. In the nicest possible way they remind me of the unfathomable size of the universe, mostly dark matter, that is more or less constantly attacking us. I'm going to be a bit sloppy here and let this post drift off into, um, the firmament, because discussing it is an intensely serious business that I don't wish to undertake at the moment. My purpose was only to express, briefly, the auspicious timing of a rainbow that made my eyes glaze over for a moment, and that I truly hope made my wishes more sincere to the woman (and group) I was writing to at that moment. A good omen. I hope.

I leave you with this brainy quote from pop-science journal, Discover:

"There is something marvelous in the fact that we barely understand what most of the cells in our brains are doing. Beginning in the 1930s, astronomers realized that all the things they could see through their telescopes—the stars, the galaxies, the nebulas—make up just a small fraction of the total mass of the universe. The rest, known as dark matter, still defies their best attempts at explanation. Between our ears, it turns out, each of us carries a personal supply of dark matter as well."

Actually, it's all about Sandra Bullock

O the tedium of remembering all the grey ribbon months.

Another Brain Tumour Awareness Month is upon us. 

There's the UK one, which is observed in March. And in the US, it happens in May.

But in Canada, it's OCTOBER, the best of the months, the most glorious, because it is a month that culminates in All Soul's Night, which then slides into November for All Souls' Day, the latter represented in Mexico by edible bread and sweets in lovely skull shapes. October is clearly the most suitable month to commemorate brain rot because it's all about glowing skeletons and dancing bones and fluorescent colours and cobwebs in heads: stuff that I like because it makes me think of living. That's what it's about: a celebration of life by making Death into something merry and less scary. 

In my post below I begrudge these ideas, the casual, abstract acceptance of the memento mori, the invented symbols of the loss of life and breath, when the horror of what that actually means is actually not acceptable at all. It's indescribable, it's sick, it's painful. And the reminder of the reminders of dying got well under my skin that day. There are times when the joys of day-glo pink just won't pierce through all the infinitely dense dark matter you're facing, or that you see others facing. And it's not possible to do anything about that except ride it through, regain a certain amount of control over your life and destiny either by ending it all yourself, or taking comfort in your (version of) God and the afterlife to come, or by weeping until your guts feel like rocks, and then getting on with things again because the rocks are, frankly, too heavy, and you might as well throw them out until it's time to fill up again (and there will always be time to fill up with more. Opportunities to cry are more than plentiful). As for the humour approach? Sure, that's good too. But it's not always funny: as we know, clowns tend to be driven by sadness.

However, on many days I do embrace the abstractions, the moss-covered stone skulls in graveyards, the chapels built from human bones, the skull-shaped candy and bread, Halloween, all those reminders that these symbols and rituals are not so much symbols of the end to come, but of the life that still occurs in the meantime. What is that cluster of remembrance days for those we've lost all about? It's comfort for the living. The dead are gone and that's it. So what. Everyone who lights a candle or dances around in their bones is actually celebrating life - music, ice cream, all that.

The final week of the month (26 October - 1 November) happens to be the week chosen by the IBTA as International Brain Tumour Awareness Week, so at least that bit of internationalism ostensibly ties together all the discrepancies between awareness months. (Ultimately it must be a good thing if there are so many opportunities to, um, celebrate brain problems? Or is it just confusing?). There is something rather auspicious about the IBTA having chosen that particular week for a world-wide brain rot awareness week...

For those of us who actually have growths in our heads, we're always pretty aware. The purpose of these awareness months (and all other months dedicated to the numerous unjust and incurable diseases to which the human body can succumb), is to try to make healthy people care. I've noticed wearing ribbons does piss-all because no one ever asks what they're for anymore (I believe I've pointed this out before, earlier in this blog's history). And going around with a ribbon around your whole head, as I demonstrate in the photo above, is hardly going to get a response - at least in London - where the most you would get out of people is a crinkled nose, aversion of gaze, and turning away of head, as if nothing untoward had strayed into their busy, respectable, middle class stupid existence. Big fat shrug. But it is worth wearing them anyway, because you'll always know that someone in your life still has/had problems, and the ribbon itself joins the ranks of the other symbols of imminent death, reminding you that every minute of your life matters. Is this an utterly cliché statment to employ? So fucking what. All our lives are caricatures of all our lives. So you can take it or leave it. Because today I'm feeling the absolutely hilarious absurdity of Bullock's situation in Gravity. On another day I might be sad and slammed with the profundity of that film's (or my) situation, but not today. Because it is the second day of my favourite month, and I'm happy enough to write this rather ludicrous post.

And then what happened? I didn't die.

With meds up more nausea more exhaustion more random blehhh and flavours of aural or certainly postictal effects that can really disable your life as if it wasn't disabling enough to have the electric zoom surge problem caused by the invisible tyrant burrowed away behind the stupid spiders of blood vessels in the brain in the first place. I was deemed stable (phew!) after last scan earlier this month but the woman in next cubicle during my pre-scan IV hook-up had just been whipped in the face with the news of a need for full body scanscanscan because her cancer (which was elsewhere in body, not from brain, blood-brain barrier keeps it in skull, hers a different non-brain cancer) had spread wide and unexpected (tho this was just discovered - interesting but bloody terrifying christ they try to make it sound like it's a good thing) and there she was weeping and Death staring at her and how fun and pretty it is to be surrounded with the colourful memento mori of the Day of the Dead in my flat when Death just looked her in the face and said, Ha, Your Chemo Failed, Lady. I have looked at Death before and Death is not glowskull and candies with flowers and also not some hooded thing with sickle it's an endless swirling cluster of ugly orange stars and no eyes just the sound of a record player winding down to piss all and the darkest sound ever and when it stares at you to say Hi, I'm Here, You're About To Get To Know Me, it's the most disgusting gutpuke throatclench sensation - nevermind the mere abstract concept of, Oh No, Oh Shit, I ... Don't Quite Know What That Means Yet - but really really feeling it and that was the first time I was nearly shaking when I went into the magnet because it was someone else breaking down near me while I knew I'd still be okay for the next little while. Survivor's guilt, anyone? Nauseous, more tired from meds, the effects of tissue scarring (of post-op brain) kicking in at last and rendering previous dosage suddenly completely redundant and taking me back to the huge debilitating electrical storms that I haven't had since 2008 but I'll still be okay. But always thinking of those Equal Opportunities forms you have to fill out during job application processes where I have to tick the box for invisible disability but there's no box for Death it isn't visible at all I know that's cheezy but what do you do when it gets closer, like for that poor weeping woman who I hope can escape it again. It's there on those forms kids: invisible box for Death but not everybody has to tick it yet including me.

Oh, Hey!

OMG I nearly forgot! Today is St Rita's Feast Day, which I mentioned in an earlier blasphemous post. How auspicious that I decided today to finally post the photo of myself with the little brain-topped pencils that has been part of my cluttered desktop for months. I scroll down my page and what do I find? Yes! A reminder!

St Rita is patron of lost and impossible causes (as many are), and her attributes are as follows:

Forehead wound, Rose, Bees, Grape vine. And a skull, the great memento mori. Like Yorick's. 

I should think that in a practical sense, one may wish to celebrate this day with a glass of wine and a bouquet of roses. Almost (but not quite) in a bourgeois, LIFESTYLE sort of way. I say almost, because I'm a big fan of the wine, and I think roses are not bad. They aren't as nice as daisies, but they smell nice and the petals taste good. So I grow 'em.

St Rita when she thinks about LIFESTYLES.

But have I expressed my feelings about LIFESTYLES? They make me sick. I have a life, I have style, but I don't have a LIFESTYLE. LIFESTYLES are for wankers who sit in their purchased LIFESTYLE gardens with nice little heating lamps and expensive specially-woven outdoor cushions and impeccably delicate foot-high stemmed wine glasses and plates of lamb drizzled with some sort of reduction or another, and chitchat about how they personally sacked some low-level nobody at the office for photocopying the wrong page earlier that day. That's what my neighbours do in their LIFESTYLE IN A BOX garden.

So let's reformulate this. To honour St Rita, tear some roses from your neighbours' garden, grab a box of wine (preferably this one, if you can), and shit in your neighbours' honey (as an acquaintance of mine once did. Ahem). But perhaps leave out the head wound. Or draw one on if you like. A good smear of red lipstick will do.

Thinking what to write next...

...and it will probably be a discussion of Giddeon Burrow's Brain Tumours: Living Low Grade, which came out a couple of months ago and which I immediately purchased directly from his website (why buy from Amazon when you've got the option to support small publishers), but I just haven't got around to writing about it with the care it deserves. It surprised me with the accuracy of its insights and its intimate knowledge of the alienation that is specific to those of us who live, basically, from scan to scan, always uncertain and in constant limbo about what direction a slow-grower might take, i.e. malignancy lurks at every turn. I suppose that in the meantime I will say that I highly recommend it to anybody who knows anybody with a low grade glioma. Kinda explains a few things very lucidly. It's a super quick, easy, and meaningful read.

Giddeon also has a blog, although I admit I have not spent much time perusing it, just for lack of time.

Growing Selfies

So, a couple of years ago I announced that my activity for March of the Brain Tumours would be to post ridiculous photos of myself wearing external variations of my tumour in its approximate location. However, the photos were generally a nightmare and I didn't bother: I was pale and had big bags under my eyes, and instead of putting off my little personal photo shoot for another day, I stubbornly went ahead with it anyway. Photos that were supposed to be funny became less so because they demonstrated what was clearly a lack of vitamins and sleep - not exactly the picture of health I wanted to project in the name of ostensible confidence and strength in the face of the thing that will eventually kill me.

So, I decided at the time to just stick with the one that I found particularly glamourous, the one with the fancy red and be-pearled fascinator that's somewhere not too far back on this blog. Vanity is thy my me name, etc. (This was, of course, a few months before the revelation that it need to be cut out again, but whatever).

But let's revisit and expose those rejectamenta. I wish to finally make public some of those fine specimens, because there's nothing like laughter, bitter as it may be, to pretend that there's nothing going on. Let us begin with this lovely little pic featuring the tumour as an egg-shaped knitted thing my Aunt bestowed on me. Let's not mention what's going on with my hair and face, yeah? Just focus on the bird and the beautiful angle at which it is perched.

Yes. And then another birdie (felt bird by Lieutske Visser), who I met at the lovely Dandy Lion Market a few years ago. Now we can look at my hair. Note the subtle styling that complements the frilly tail of the bird. Quite clever of me, I thought. 

And let us not forget these stunners. I ate a whole packet of these during the afternoon when I was pissing about with the camera. In retrospect, it might be that this sort of gluttony explains what was really going on. Aww, sad face.

it's like . . .

Some days it's like, well, probably the entirety of Camilla d'Errico's Tanpopo, whether it's the text or the illustration or the combination of both. Ups and downs but mostly suspension.

it's like . . .

Untitled, 1969

Some days it's more or less like a late period Rothko. Which means many things, really. A furious, beautiful black on grey that feels like it's screaming by but standing dead still at the same time.

Gloria

It's Brain Tumour Awareness Month again, everybody!

But more importantly, in another few days that most fabulous season of Christian masochism, Lent, shall also commence. I have decided that the ideal thing to give up for those 40 days would be my tumour, seeing as I harp on about it so much. If I were to resist it, I'd have nothing else to talk about, really, and we would all be delighted by my blank and silent sense of happiness in my dedication to God. 

Unfortunately for all of us, I am not the Catholic I was raised to be, so there seems little point in sacrificing the object of my obsession and the opportunities it provides for groaning and moaning and emotionally blackmailing anyone who takes the time to listen. Therefore, let it be known that for the season known as Lent, I will not give up my tumour, or any pleasure I take in grumbling about it, but I shall nevertheless out-Catholic the Catholics in self-flagellation. I shall moan, I shall groan, I shall take on the holy sufferings of Christ on his donkey and his tree, and, after a brief wrestling match, the Crown of Thorns will be MINE. I won't be crucified, but I'll get that Crown.

Or in other words, I'm actually not giving anything up for Lent. Why should I? (Patti Smith, let us consult thee). I'm hoping to make the most of the month being Aware, whether that means paying extra attention to myself, or paying attention to other people, or to wider campaigns, or just generally thinking things through. Which things? Any things. Et cetera. I've spent the last few months being scared again. I'd like to shake that off. Or talk about how I can't shake it off.

Very well. Now, Let us pray. Not to any figures directly involved in the Easter processes, but to someone from the strange hagiographic cult, the Christian celebrity world that, I feel, is a particularly interesting bit of ooze in the holy bandages. I'm fascinated by it. Let us pray to she who had a bleeding hole in her head for fifteen years. St Rita, patron saint of lost and impossible causes, sickness, wounds, and a few other things not applicable to me: Dear St Rita, please send those white bees to take my tumour. Amen. And on your feast day in May, I'll be pretty grateful, and I'll make you some rose petal jam from the rose bush in my garden. I've just replanted it (no - no injury from the thorns, Praise the Lord), so I think it's going to do very well this year.

Brain Tumour Awareness Month! Brain Tumour Awareness Month! Brain Tumour Awareness Month!

Today heartache for the poet Simon Howard, someone I never met face to face but whose consistent gestures and words of support sprang up, seemingly out of nowhere, and always touched me so deeply, were so essential to helping me keep my chin up, whether it be for my head or for my poems or any and all of that. On so many occasions when I felt hopeless and worthless and decided that me and everyone else on the planet was an asshole, that I was the only one feeling down and broken and penniless and generally tiny and stupid and alienated, little distant glimmers like Simon truly elevated me, selflessly gave me oxygen, reminded me that there is a world, and that much of it is good, and that I should shut the fuck up and stop feeling so sorry for myself. Thank you, Simon. I wish you peace.

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.