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.

$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.