thegillspatch

Thousand natural shocks

2016-02-05T00:06:29Z

“You just passed out,” she stammered, a frown of concern creasing her brow.
“Yeah,” I replied, not really looking at her, or indeed anything in particular, and brushing dust and the odd twig from my jeans. “I’m epileptic; it happens.”

No, that’s not me, cool as it would be to have my brain published.

This is the elephant in the room, one that I’ve not done justice to in any of my posts. About one in a hundred people suffer from epilepsy, and about 30% of those don’t find adequate treatment, despite the large number of anti-epileptic drugs out there. I’m one of those unfortunate few, and to describe the effect epilepsy’s had on my life as “profound” would but sugar o’er the devil himself.

Disdaining fortune, with my brandished steel, I have literally tried every drug in the book that’s recommended for my type of epilepsy. I’m on five of them, not through careful design and consideration, but through a highly heuristic “take this and see what happens” approach. As a result, I’m even on a drug that’s not actually indicated for my type of epilepsy (except in rats), and I’m on the waiting list for a device that seemingly randomly stimulates an important nerve in the hope that I’ll have fewer seizures.

Having seizures isn’t the biggest problem though. I mean, I’ve spent rather too many nights in A&E because of them, and had rather too many stitches, but that’s not the end of the world. It’s the constant fog of five drugs jostling for space in my head, the lack of memory of what happened a few hours ago (let alone a few lectures ago), and my overall lack of knowledge of what my own brain will decide to do to me next.

I am a disabled person. Sometimes I’m thankful: I get to live on campus at uni, and I have a convenient excuse for getting out of a lot of unpleasant things. But I’d trade all of it, even my free bus pass, to be able.

The Bald Cancer Patient Rises

2014-01-27T22:31:01Z

Despite having a cool leg brace thing fitted and subsequently hobbling, I’m not Batman. I’m also not Bane, despite being able to do a half decent impression of Tom Hardy’s voice and definitely having taken my fair share of medication.

No, my next slew of pictures simply chronicles me, learning to walk again. I guess it was easier the second time round, but it wasn’t something I was expecting to have to do twice.

So who wants to see my groin?

2015-12-04T18:00:23Z

I feel like, after all this time, I’ve been doing you a huge disservice by not showing you my groin. It is every blog-maintainer’s responsibility, is it not?

Unfortunately, no non-medical people (apart from me) were allowed into the operating theatre, so my poor mum with her point-and-shoot Nokia couldn’t get any shots of my gruesome operation actually taking place. I do, however, have some shots immediately preceding the op, and the aftermath:

For reference…

Just think of the harvest as a stem-ey wemm-ey, harvest-ey-warvest-ey…thing

2014-01-27T22:32:24Z

“And this machine? No, no idea what it does. I think I’m supposed to plug it into you though. What’s that? They put the plugs in your arms? Ah. Well, just don’t move your arms for the next few hours then.”

This also featured (though, regrettably not on camera I don’t think) The Man Who Cannulated My Right Artery Instead Of My Left Vein, Or Vice Versa.

Tune in next time for some exclusive pictures of my groin. Hooray?

To sleep, perchance to dream…

2014-01-27T22:33:05Z

By a sleep, we say to end the heart-ache, and the thousand natural shocks that flesh is heir to.

(You’ll have to forgive my rusty recollection of Hamlet’s soliloquy. It goes something like that.)

Basically, my coping strategy was “when things get tough, sleep, and when you wake up they’ll be better”. So I don’t apologise for the load of pictures of me sleeping. There isn’t an awful lot else to do when you’re having unadulterated cytotoxicity being given IV.

Regime, or regimen?

2014-01-27T22:33:52Z

Those who know me will know I like to get my grammar right. (I can almost feel some form of Muphry’s law implementation stalking me in this post now.)

I won’t shy away from jovially correcting someone for saying “drug regime” (“regimen” is the word you want). However, chemotherapy is different. 6 + 7 weeks of IV, combined with the constant travel, 80 hour hospital stays, being immunocompromised and all the other stuff that goes along with it makes you wonder if you’re not under some new, dictatorial, chemotherapeutic regime.

Veni…

2014-01-27T22:34:29Z

Fast forward the best part of a month from the last post, and my biopsy had been fully analysed and my diagnosis confirmed: Ewing Sarcoma. Things happened in such a blur that I forget what exactly happened, but the impending chemotherapy prompted an emergency haircut, and I was rushed to Southampton General, for the first time feeling genuinely ill as a direct result of the cancer.

“Everyone needs a hobby.”

2015-12-04T18:02:10Z

“What’s yours?”
“Resurrection.”

Yes, it’s me. Back. From the dead. Again.

This time, though, I’ve slightly more of a reason for actually attempting to make contact with the outside world. It was 5 years ~~yesterday~~ two days ago (I write late at night) that I had the surgery at Stanmore Royal Orthopoedic Hospital to fix my leg, and “5 years” is an important milestone for any recovering cancer patient.

After my echocardiogram turned out normal,
(Ultrasound scan on the heart. Radiologist whips out ultrasound probe and gel.
Me: I’m not pregnant.
Radiologist: ಠ_ಠ
Me: ಠnಠ)
I was basically told by my oncologist to piss off, as he wasn’t particularly interested in seeing me after five years post-chemo without incident.

But five, being one of those arbitrarily round numbers, seems like a good number of years to reflect. So I present to you, in this auspicious year, a collection of pictures that was inconspicuously and candidly taken by my mum with her old phone, and through the wonders of technology and careful archiving I can present now. One day at a time, of course.

So, without further ado, my previously unpublished pictorial neoplastic proliferation. (Hey, I have an alliteration reputation to keep up.)

Stanmore for the biopsy. I didn’t even think I had bloody cancer then.

Heal

2015-12-04T18:02:55Z

//gillspatch.co.uk/wp-content/uploads/2012/01/Heal1.mp4

And guess the music.

…Our work is never over

2015-12-04T18:04:03Z

It’s been well over a year since there’s been any activity on this blog. Well over a year. That’s decades in Internet-time: the blog’s old, defunct and forming detritus. It creaks and groans as it strains to emerge from its reverie, new material grinding and choking, gears jamming with the accumulated years of the dust of neglect.

And for what? Like a duck’s quack, its voice echoes around its empty auditorium, even though it isn’t supposed to. Truly, if there were anything “dead” on the Internet, you are reading its pages.

But I didn’t pass my first year of university dead. I was “dead-on” the Maths pass mark (no more, no less); “dead-wrong” about doing one-too-many questions in the Pharmacology exam, and “dead-cool” about my Caixa snare wires breaking during my Samba band’s performance in the summer ball, but never was I dead. (Though it would solve a lot of my problems.)

I went to the wedding of a devoutly Christian friend, whom I met at University, in the summer. It’s no secret that I hold religion in no higher regard than I hold several-week-old milk (hold at arm’s length; hold nose), however the reason I mention this is not that I’m desperate for you to know what I got up to over the summer. If I did, I’d have a Twitter account. No, the reason I mention it is because religions, in general, have odd views about death. Whether it’s ascension or rebirth, I don’t subscribe to any of that bullshit, but the idea of my blog becoming some loner’s Twitter account repulses me.

So, while I’m paying less for my web hosting package, I’m on more drugs, and the second year of university will certainly require me to work it harder, I’ll endeavour to make it better and do it faster. I can only get stronger than I am now.

Edit: Aforementioned video is here.