Monday, 3 October 2016

Late to my own Funeral

I often tell people that I died March 3rd, 2014. That's the day I mark as the end of my life. That's the last time I ever stood on my own two feet. It was a sudden death, and yet it has been the most lingering sort of suffering purgatory that I can imagine from that day until the day the rest of the world comes around to my hypothesis and finally puts me in the ground.

Let me explain. I never really knew I was sick. My doctor had always told me that aside from being overweight I am healthy as a horse. I certainly felt pretty healthy, until December 2014. My hands got sore. I thought it was carpal tunnel (I spend a lot of time on the computer, writing and gaming and treating it like a prosthetic brain) and so I made plans to go see the doc, took it easy on the PC and even tried an essential oil lotion my parents swear by for muscle and joint pain.

The pain got worse and came with clumsiness and stiffness by late February and I was starting to worry. Then, on the evening of March 3rd, a Monday evening, I got home from picking up my younger brother after work and... fell over. I stepped out of the car, took two steps and fell flat on my face. I thought it was the ice, maybe low blood sugar (hadn't had time for dinner yet) but I made it inside and hobbled to bed.

For a few days I thought I'd just sprained my ankles falling, but I didn't get better. I got worse. I couldn't stand for more than a few seconds at a time and then not at all. My legs would not support my weight. My hands wouldn't open completely. After a week of fear and not knowing, we called the ambulance. Thus began a long odyssey that would see me spend more than half of 2014 in hospital. Barring a few emergency room visits and visits to relatives, I had not spent any time in hospital since a friend and I collided and he bit my nose open back in fourth grade (human bites are filthy).

I live in a rural area, and the Ambulance was acting under constraints and guidelines, so they took me to Carleton Place Hospital. They managed to help me into a wheelchair and I spent the next six hours in a waiting room as they determined that they were not capable of handling me as a patient. Carleton Place has no rooms fitted with lifts (though at this point I was still able to transfer by rolling, sliding and the like), minimal testing facilities and not a lot of provision for long-term care. The doctor managed to get in touch with a colleague at Queensway-Carleton Hospital in Ottawa and I was transferred there. They found me a room that evening and I spent my first night in a hospital bed that would be my home for some time to come. I got to learn how to use a urinal, and wasn't that fun.

I'm Canadian, so I was never all that worried about medical costs. OHIP, the Ontario Health Insurance Plan, would handle all my basic needs and costs. Medications would be out of pocket once I was discharged as I had no medical insurance, but there are programs for that as well. I was worried about what was happening to me. The first day they ran tests. Many tests. Blood, urine, a full x-ray skeletal survey and then they ran a neurological test. An EMG or electromyogram is a means to test nerve conductivity, by poking you with over-sized novelty knitting needles and then running a current through to see how you respond.

It took a good deal of voltage to get the nerves in my hands and lower legs to respond. I took it with good cheer, though, bantering with my Neurologist and the technician. Cracking jokes about the Sicilian jump-rope and promising that I'd finger anyone they wanted. "Ve haff vays off makink you tock" or "and now, wretched sand-dweller, what can you tell me of your troop movements?" . I was trying for stoicism (by the fourth EMG study I'd gone through, it was more acceptance than anything). Deflecting my fear with humour.

The initial diagnosis was Guillain-Barré Syndrome (my neurologist's intern had another idea, POEMS syndrome, but they both dismissed it as vanishingly unlikely for someone so young) and the initial treatment was a course of Intravenous Immunoglobulin. IVIG is a blood product that was supposed to stop my own immune system from stripping the myelin sheathing from my peripheral nerves.

A few words about demyelinating illnesses: while my peripheral nerves were being eaten, my other nerves seem to work just fine. I still had (and have) sensation in my hands and feet. I also had fairly severe polyneuropathy. The feeling of ants crawling under your skin, tingling aches, sharp twinges, prickling, all seemingly at random in my lower legs and forearms. As a pleasant side effect, my pain sensations in the affected areas actually seemed increased. So nice when things work out, isn't it?

I spent two and a half weeks at the Queensway-Carleton hospital. After the 5 days of IVIG, there were more tests, daily work with physiotherapy and about 20 hours a day of laying on my back and being bored, worried and depressed. I went through three or four roommates during this time, only one of whom was sociable. A nice guy with heart problems and an appointment to have a new pacemaker installed, just waiting for an infection to clear up before he could head to the clinic at the Heart Institute. I got along with the nurses, had daily visits from family (who were driving ~30-45 minutes each way to see me at that point) and most notably: did not improve.

My condition stopped degrading after the IVIG... for about a week. And then my hands were curling into fists even further, and the tingling numbness was creeping up my legs. My knees were getting stiff and sore, and I could not move my fingers more than an inch or two out from a closed fist. Working out daily with therapy putty (available in a variety of colour-coded densities to tailor your workout, not to be taken internally but it DOES do the copying ink trick silly putty does) and with a two pound barbell, trying to keep them working. That and about a jillion sit ups and twists a day, trying to keep my core strength up. All for naught, as it turns out. It was during this period that they ran me through another skeletal survey and then the MRI.

I must admit, as noisy tubes go it was excellent. Not particularly comfortable but I'm not the claustrophobic type and isolation doesn't usually bother me either. Might have been nicer if they'd played something other than Skrillex for 90 minutes though. After that was the first of several CT scans, firing noticeable amounts of ionizing radiation through various portions of my body in search of the REASON for my illness.

As it turns out, it was a plasmacytoma on the left side of my pelvis. A cancer, in fact, similar to multiple myeloma. That revelation coincided with one of my more exotic blood tests returning (from California no less, because apparently Canada can't be arsed to have that particular tech) and my diagnosis shifted from Guillain-Barré Syndrome to POEMS Syndrome (which was that clever intern's first thought, discarded as too rare). My neurologist (a lovely woman and a beacon of competence and optimism) told me that they don't actually HAVE a set course of treatment for POEMS syndrome, because it is extremely rare. I have yet to meet a neurologist (and I'm into double digits by now) that has seen it more than three times. Except for one older chap who spent some time at the Mayo clinic. POEMS is an acronym of course, standing for Polyneuropathy, Organomegaly, Endocrinopathy, Monoclonal proteins and Skin Changes; suffice to say that POEMS is more of a gift basket of symptoms than a particular disease, as no two cases are quite the same. Not everyone suffers all the symptoms, and the severity varies a great deal.

Put simply, the cancer in my butt was poisoning my bloodstream with identical proteins that clung to my peripheral nerves. My immune system responded by yanking them off, resulting in debilitating demyelination and localized paralysis. Or, as I choose to put it: my self loathing reached a truly meta level. Once again, I managed to find the far end of the curve. It's exhausting working so hard to excel.

They transferred me to the Ottawa General Hospital, the 6th floor is their Oncology/Hematology ward, which is appropriate as I had both problems in spades. This time my room was a four-bed ward room, and I think I was the healthiest person there at all times (three weeks later I got a double room with a brilliant and fascinating early retiree who worked for Bombardier and had fascinating stories... as my Grandpa worked for Avro we had some interesting talks about the Arrow). In fact, I do not think I have once shared a room with someone who was better off than I was. Half my roommates were terminal cases and their care was as much palliative as anything else.

At this point, the quality of the menu went downhill like coal mining stock or JEB!ya's presidential prospects. The Ottawa General is an excellent hospital, well appointed (if getting on in years) and with a very good staff of nurses and a staff of doctors ranging from adequate to excellent. The food, however, is wretched. The very worst kind of institutional meals. The worst was the tuna sandwiches. It was like two slices of slightly-stale bread around a generous trowel of spackle. I have rarely had food quite so tasteless and unhealthy. If not for my family bringing fruit, trail mix and granola bars I might have gone mad and murdered someone with one of those godawful packets of protein powder they use as a substitute for offering more actual protein.

*ahem* Tangent. Happens. Moving on.

The reason to transfer me to the General was that their hematology department is far better equipped. The plan evolved by my neurologist (who has privileges at the General, the Civic, the QC and who knows where else besides) and what seemed like the entirety of the neurology department at the General (I was not a common case, I suppose they all wished to have a look-see) and their colleagues in oncology, was to treat my plasmacytoma with an intense course of proton beam radiation (no, I won't call firing a particle beam through my crotch "therapy") in conjunction with five sessions of plasmapheresis to treat the POEMS.

For those of you who have not had the pleasure, plasmapheresis is blood dialysis. They insert two needles (large gauge, because clotting jams the machine) into your veins, usually one in each arm. From one, they draw out blood into a large and complex machine (picture a voting machine on a rolling cart with a nest of clear tubing and some of those racks for hanging about 6 or 8 IV bottles at the top) which filters out the blood plasma and replaces it with albumen. In my case, to the tune of about 6 litres

On hearing that, I asked if they could just give me a few bottles of the house red, or even a nice Riesling. No such luck. They wouldn't even throw in some sugar and lemon juice so I could be a meringue. Some people's children, honestly.

An aside here: if you work in the medical profession as a doctor or technician (or even a nurse, though they seem less stiff) then develop a sense of humour. I have had SO many quips, bon mots and snarky comments fall so flat I expected a large shepherd's crook to drag me away. Medicine is serious business, and I respect the dignity of your profession... but laughter is, as Niven suggested, an interrupted defence mechanism. It's our defiance to the darkness past the firelight. Our way to howl back at whatever is out there beyond what we can see.

The first attempt at plasmapheresis was nightmarish. I have never liked needles, and my arm generally swells up like a balloon after any inoculation. At this point they were taking an average of six vials of blood every day. Oh, and since the lab techs like to get an early start (both at the QC and at the General) they liked to wake you at 6 a.m. to jab you. You know, when your heartbeat tends to be at its lowest ebb and you are likely a little dehydrated as well. After two weeks in hospital, my arms were a mass of bruises (as was my capacious abdomen from their daily blood thinners lest I develop a blood clot as at least one poor roomie did) and I was averaging one needle per vial. I do recall a few pleasant moments when they had to go hunting for a vein in out of the way places: the back of the hand, the inside of the wrist, the base of the thumb (that one was like a hornet sting). Suffice to say that I am not an easy poke on the best of days, and by this point I was a bit of a nightmare. The tech found veins, but the machine was jamming approximately every 3-5 minutes, requiring her to make adjustments, move the needles around and generally fiddle with it. I grew to dread that shrill beeping each time it stopped. After four HOURS and only three of six IV bottles she gave up and I weakly told her that I was sorry but I didn't think that we would be friends.

It was agony. It felt, after ten minutes or so, like I was being stamped on by an elephant. Slowly. My mother, who was there and watching, says that I looked like I'd been crucified on a hospital bed, arms splayed out and half-conscious, moaning and twitching quietly.

At this point I will take a detour to mention that opioid painkillers don't seem to actually work for me. Or if they do, no doctor has ever been courageous enough to give me a dose that had any effect. I have had better luck with aspirin. So this was a rough day. My worst of my stay in hospital to that point.

The next day, forty minutes into another MRI (and an even smaller tube than the Queensway Carleton's machine, which necessitated stretching my arms up over my head to fit my apparently abnormally broad shoulders into the machine... not the most comfortable of positions) they pulled me out to install a central line in my neck. I cannot recommend the OGH's MRI, the gauge is slightly too narrow, the acoustics are dreadful, the DJ is one-note and the pillows are lumpy to boot. My escape was a relief, but only briefly. Under local anaesthetic and a fluoroscope (a word I had, until then, never had occasion to say or type except when referencing Bugs Bunny cartoons) they opened my neck and slid a tube into my jugular.

If ever you have occasion to have a similar procedure, my advice would be to decline. They itch, the feeling when they fill the tube with saline (every time they use it and sometimes just to make sure it's still working fine and not clotted solid) is like cold bubbles in your heart and best of all they flop around loose. I had a recurring nightmare about catching the, for lack of a better word, 'dongle' behind my shoulder or in the hospital bed and tearing it out as I slept, to bleed to death and leave an awful mess for the staff. After the first night I cadged some of the netting they use to cover burns and a little help rigging a choker to keep it from flailing around, but it wasn't pleasant. It did make the plasmapheresis bearable, though it was still four hours of painful immobility every other day.

By contrast the radiation therapy (still feels strange using that term for a low powered phaser) was shockingly easy. Generally it was early in the day (the nuclear medicine folks are generally busy, and going later in the day meant an interminable wait), hence my motto: the best part of waking up, is hard rads in your butt. Sorry Folger's. Every day for 20 days (well, slightly longer because the rad crew don't work weekends and weeks are an odd number of days long) they trundled me down there, and honestly the worst part was that some of them had truly awful taste in music. When a Celine Dion song is a step up, something is badly wrong with your choices. I did not suffer any of the usual side-effects of rad therapy: no burns, no diarrhea, nausea, nothing. RIGHT up until the end, when I had a brief and excruciating bout of radiation cystitis. That made urinating in a bottle even more of a pleasure, but at least it only lasted five days (I think the threat of catheterization may have scared it off).

That was April and most of May 2014. All the while I had a new crop of physio and occupational therapy and social workers helping me (I hope Mati gets full time status someday, but two years later she's still part time/casual). I got to learn the joys of a wheelchair for the first time, and no, I do not recommend them either. I even started teaching myself to use a transfer board to get into it. By this point my hands were withered and useless claws, I could not even hold out my arm and keep my wrist from flopping downwards, but I still fought tooth and nail against helplessness. I was using reachers, somehow. I was typing with one finger on my mother's borrowed macbook, letting friends know where I was and that I would be more or less out of contact for a while. I was fighting back, because finally we had a plan and we were treating my illness. It sucked. It hurt all the time, but it was something.

By the end of May 2014, my treatment was done and they were shifting me to the Rehab center in the hopes of helping me recover. Viewpoints were rosy, but vague. I have yet to hear two doctors mention the same timeline regarding my case. I heard everything from six months to five years to maybe never. I heard 'good chance for 100% recovery' and I heard 'you'll likely be walking in a year from now' from various neurologists (my first one had to take maternity leave in May, but she's back and oh did I miss her cool sound council... come to think of it, at least 4 or 5 of my doctors have taken maternity leave while I was their patient). They seemed satisfied that my cancer was dead, my blood protein levels were trending downwards and all signs seemed good.

So I was shifted to Rehab, where I met a much more intense workout regimen and a much more intense desire to get me back to normal. I worked hard. I worked myself stupid, in fact. Two hour-long workouts every day, and on weekends when the rehab ward was deserted (most rehab patients go home on weekends, but my home was up 13 stairs so that was not gonna happen) I would wheel myself the kilometer or so across the hospital to Tim Horton's and have a hot chocolate and a sandwich. The food in Rehab was better, too. Not as good as home, but it was recognizably food and reasonably tasty. So even when I wasn't in physio I was working with weights or with tools, trying to wake my hands up, trying to cling to some upper body strength. My legs were useless from midthigh by now, my hands were these floppy claws but I still worked.

I was not alone in fighting. My family were right there with me. Every single day, either my brother or a parent would drop by for an hour or three. It was a 60+ minute drive for my parents, nearly that for my brother. My sister even dropped by once or twice, though she'd been busy having a baby while I was in the Queensway Carleton. In fact, she checked in the day I left for the General. The amount of money they all spent on gas, the time, the effort for two retirees in their sixties, was herculean but they were there.

After a week in Rehab, my doctor was bored with me. I actually saw the interest in my case wane in his eyes. I wasn't getting better fast enough to keep him interested, and all signs suggested it would be a lengthy recovery. After the first weekend, the focus seemed to shift from getting me back on my feet to getting me out the door. Budget constraints, I imagine but understanding did not make it less painful or frustrating or devastating to my sense of hope. They ran my family and I ragged jumping through bureaucratic hoops and filling lists of equipment for the fashionable cripple. Everything I would need to survive once they were done with me, from my very own wheelchair (custom-fitted and everything) to a van to drag it around (oh, such a pleasure THAT is, to be strapped down in the back of a metal box like fucking cargo). Still I fought along with them, trying to get everything together.

At this point, my dog died. I had not seen Jasper since March. I had loved him since he was a puppy. I never got to say goodbye to him. I nearly slit my wrists that day, or hung myself using the mechanical lift in my room. Still not sure why I didn't. Some days I honestly think I'm still alive because I hate myself too much to let the pain end. I miss you Jasper. There will never be another like you. You were as much my brother as Thomas is, and a far better listener.

After three weeks, they scheduled me for going home. We had NONE of the equipment at that point. Much of it was still on order. We fought them, on numerous occasions that week my parents actually ambushed my doctor to talk to him because he was avoiding our difficult questions, and we earned ourselves an extra week.

Well, an extra three days. That four day Canada Day weekend really came at a shitty time. Patriotism will be the death of us all, mark my words.

So I came home, not to the house I grew up in and shared with my brother but to my parents' home in the country. It, luckily, had an attached 'granny-cottage' that was more or less wheelchair accessible. At least, until you get to an outside door, anyways. But I had nowhere else to go, so that's where I went.

Social services do exist out here in the boonies, but they are painfully underfunded, overworked and few in number. I did not get much help from them, though I do get disability since I was utterly incapable of fending for myself much less working. At this point my hematologist passed my case to a new doctor and my first appointment with him was not positive. 90 minutes in the waiting room (after an hour in the car) we were told that an intern was taking his spot for the afternoon. I spent that appointment regaling an intern who had not heard of my case until an hour before with the details, then asking pointed questions about the very expensive drug they wanted to try me on. My second appointment two weeks later, my actual hematologist told me that I still had cancer cells in my body but they didn't have any tests that would let me know where or how many. He followed up by informing me that while my nerves were recovering there was every chance that my illness would recur in the future if the cancer returned. They tried to sell me on a drug named Revlamid that might maybe help. I read the info, did my research, talked to my neurologist and told them no (the words "teratogenic" and "Thalidomide derivative" may have played a part). My hematologist lost interest in me at that point, but not before he walked the goalposts back a little further on my hopes for a recovery to a normal life. Nice guy, we'll come back to him later.

That was it for a while. I spent some of my disability on exercise equipment (an armbike is one of the few kinds of cardio you can do when you're in a wheelchair) and once or twice a week I'd go to Wal-mart or home depot and just roll around. I hated that. I hated being in public. Still do. I hate the perceived weakness. Then again, I have always hated weakness in myself, so self-loathing's not new. Just louder now. But I did it, because I wanted to get better and dirt roads don't work so great for a wheelchair. Neither does a grassy lawn.

In the first week of October, I fell out of my shower chair and broke my right foot, both ankles and both knees. I was laying on the bathroom tile screaming at my parents to go get the shotgun and put a round through my head. I was begging for a knife so I could cut my own throat.

I had never broken a bone, until that night. I've been hit by bats, balls, bikes, toboggans, rocks, people, dogs, cats, several cars, a number of canoes and a frozen tree branch so heavy that when it fell from the tree it pinned me under it until another passerby helped lift it off me, all without my bones giving in. Then I broke five at once, because I'm just that competent.

It took an hour for the EMT's and my family to get me on a stretcher, another hour (more? I wasn't entirely there at this point) in the Carleton Place hospital while they tried to get me in somewhere they could handle someone in my condition (no, they're just not set up for handling serious disabilities). The emergency room doc shot me up with some morphiate or opioid that... well, much like the Fentanyl prescribed for my cystitis, mostly made the injection point ache like a bastard. He called it Dilauded, but I could have sworn it was just diluted.

Somewhere a drummer just played a rimshot and does not know why.

Things were not much better at QC. I refused to let them move me, the pain was just too bad. Dad tells me (I do not recall) that when asked to describe my pain, I used the words 'lambent' 'effervescent' and 'scintillating'. Even in agony, the snark and the love affair with words come through (comforting, that). X-Rays confirmed that I had multiple breaks in all four joints and in my foot. Apparently bone loss from nearly six months of relative immobility will do that. Apparently that medication I was taking to try and keep my bones from weakening wasn't working well enough. Apparently I spent nearly 20 hours in an emergency ward room, on a gurney because I wouldn't let them move me again, largely in the dark, vaguely conscious and in agony before they found a bed for me. Moving me to the bed was unpleasant.

It took nearly a week to find painkillers that worked. In that time I did not eat, drank as little as possible and mostly tried not to move at all. I didn't take a shit for nine days, apparently. Finally they found a mix of three different drugs suggested by the palliative care team: Nabilone, Amytriptaline and Naproxen. It actually worked.

It also put me into a fugue state, or maybe a waking coma, for two weeks. My parents eventually had them reduce the dosage so I'd wake up, and someday I may forgive them for that but those two weeks I do not remember are my ONLY fond memory of 2014. I was in one cast, the other leg was just left as is for some reason (their orthopedic doctor was a bit of an asshole, and about as helpful as a septic wound) and I was looking at a minimum six weeks like that. A month of that six weeks was spent at the Queensway Carleton, in a ward room with patients as bad or worse than myself. Then they tired of my presence and my constant niggling demands and shunted me to a long-term recovery ward in a small town hospital. Coincidentally, it was nearly as far from my family as the QC was, because we're just lucky that way. Could have been worse, I might have been consigned to Cornwall (which is one step up from Mordor).

I was back home the second week of December. Not because I was healed and able to cope, but because I simply could not take that ward any longer. So finally I got back home, just in time for my first wheelchair Christmas. Snow is fantastic for the disabled, btw. Nothing like pushing a wheelchair through a slushy parking lot to really bring home the joy of the season. It's delightful. Aluminium wheel rims reach ambient temperature with a speed that is amazing, and yet take forever to warm back up again. It's fascinating the way physics bends itself to allow it.

In the new year, I and my family were pushing to get me into a physio program at the Almonte hospital. Towards this end, I had an appointment with a physiatrist. This woman was well informed, had seen numerous patients with demyelinating conditions and in the course of an hour-long interview neatly excised the last of my hope for recovery. I left shattered, asking my parents to stop by the liquor store so I could get started on drinking myself to death. I didn't start drinking though, but I did spend most of the next week alone, in the dark, not eating and mostly sobbing quietly to myself as I contemplated the horror of going right back to where this nightmare began again for another round.

February of 2015 brought the only really good news I'd had in months: the Supreme Court of Canada came down in favour of assisted suicide, and required the government to act by 2016. Finally, a light at the end of the tunnel. I had always, from the very first day I got sick, told my family I would not live this way. Now I had something to look forward to: release.

Except that they won't accept that. My friends won't accept that, even though every time we talk it ends up becoming a venomous, embittered rant peppered with my own knowledge that i am a venomous, embittered bastard who cannot stand himself. My loved ones won't accept that, even though I don't have much of a life anymore. So I'm still alive, not because I want to be but because my death would so harm those around me. At one point I conceived the plan of being so foul and vicious no one would be able to stand me and my death would be a sweet release for them too. I gave it up because it would take too long, and would take way more effort than I am prepared to invest in anything anymore.

2015 was pretty mild by comparison with 2014. Without hope, I mostly just gave up. No physio, because what am I working towards? No motivation for anything. I saw my neurologist twice, who attempted to rekindle hopes and who is genuinely pleased at my progress. My hands work (well, let's say 66-75% function, what with the tremors and twitches and aches and clumsiness from abused nerves) but my legs... they're still there. Just a couple of blunt, edema-swollen flippers that seem to exist so I can stub them on things while awake and while asleep. At the moment there are three bandaids on my right toes, but only two on the left. Better than usual, which is kind of sad. I might someday be able to walk again. Or not. Who knows? It's a mystery, because I'm a unique snowflake.

I had been tapering off my pain medication at that point (I have a lifelong fear of dependency, there's a lot of alcoholism on both sides of my family) but with nothing to worry about in the future I went back to a higher dosage of the Nabilone. It's the only one of the three I still take (the Amitriptilyne gives me the comas and the Naproxen doesn't actually seem to have a noticeable effect alone or with the Nabilone). For a while my new G.P. doctor was talking up medical marijuana for pain but thanks to Harper and the Tories Canada doesn't cover pot but they do cover synthetic cannabinoids like Nabilone. On two or three occasions I've actually gotten a high off it that feels just like marijuana is described (no, I've never smoked pot, my mother's allergic to it and she would get headaches if I even spent too long in the wrong hallways in High School), but all I really want is just enough numbness to be able to function through the eternal neuropathy.

During the summer I received a phone call from my new hematologist. Apparently my old hematologist (the incompetent, lazy and callous one) moved to Calgary and set up practice there as an anesthesiologist or something. Without informing at least one of his patients. What a great guy, huh? But my new one, whom I had actually met ONCE my first day at the General, just before SHE went out on maternity leave (seems to have been a theme, because four or more of my doctors and at least two of my nurses went on maternity leave at various points during my months in hospital). She wished to see me, so we trundled across town to say hello.

We left the meeting with varied opinions. My parents were elated, hopeful. She was energetic and optimistic. She had ideas, and was pushing for me to undergo an Autologous Stem Cell Transplant in the hopes of killing off my illnesses and putting me on the road to recovery. My neurologist had mentioned the same months before, and both referenced the same study. It might actually work, and unlike a standard stem cell transplant these would be my own, harvested and reseeded, so I wouldn't need to be on immuno-suppressants for the rest of my (likely short) life. This was nice, as I'd finally gotten off Prednisone in March after a year on the drug. Foul stuff. Nearly a year later and the edema in my legs is only now starting to get better (well, until I get in a wheelchair, and all the fluid heads to its summer home).

 The idea is to use chemotherapy to kickstart my body's immune system, and then dose me with a drug called neupogen to get it producing and releasing stem cells. Then they jam some more tubes in my jugular (bigger ones this time), drain out my blood, spin out the stem cells and start growing them. I assume at some point they'll put the rest of the blood back in (no matter how much I ask them not to). Then once they have enough they hit me with an intense round of chemotherapy in the hopes of killing my bone marrow (and immune system) stone dead. That done, they inject the stem cells and hope I stay alive long enough for them to rebuild a) my bone marrow and b) my immune system. This last step may take up to (or longer, because medicine isn't good at scheduling) a year and comes with a whole host of medications to protect my delicate constitution from anything as terrifying as the common cold.

My parents, my family, are very hopeful. They want to see me as they remember me. They want to see me happy and fulfilled, the me they knew for thirty-five years.

But I did not know if this is what I wanted. No, in my heart of hearts, every time I thought about it, I knew that it wasn't what I wanted. I just want to check into hospital, let a doctor give me three injections and then just... stop.

No second set of necktubes. No round of chemo to get my immune system shaken up. No more blood dialysis to harvest my stem cells. No intense round of chemo once they finally have enough of the cells. No injections, no blood tests, no endless rounds of hospital stays and misery. No sleepless nights because the neuropathy keeps me awake. No worries about finances, living on a very low fixed income with zero savings left. No laying awake until dawn wondering when the two monsters inside me will wake up and put me right back into the hospital and take what little I've gotten back from me.

I feel like I've been dead all this time, suffering through my own personal purgatory (or Naraka, or Yama, whatever). I don't see a road from where I am right now to where I was in 2013. I can't even imagine going for a job interview in two or three years, explaining that I've been out of the work force all this time because I was sick with cancer and POEMS. I do not see any future ahead of me. Not one that I wish to explore. Just lots of barred entrances, staircases and ladders. Some fucker even put up one of those ropes we all loathed in high school gym class.

Could I recover? Possibly. Eventually. Partially? No one knows and there exists no ready technology to answer the question. How long would it take? How much will it hurt? How much more humiliation can I stand? How long until I slip again, and shatter some more fragile bones? I do not have answers and neither does anyone else. All I have is constant, dull pain managed with a drug habit and the prospect of an uncertain and unpleasant future no matter what I choose. My days are largely spent finding ways to waste time. Trying to tire myself out enough to actually sleep isn't easy anymore, and my dreams are not restful ones. What then, do I choose? Selfishly pick death in spite of those who care for me? Or soldier on in spite of  my longing for an end, to keep them sane? I don't want them to suffer, but I don't want to suffer anymore either. Where's Yossarian when I need his cool, sage counsel? Hell, I'd settle for Nately, the twerp.

I just do not know what to do anymore. What I do know is that the person I used to be is gone. We just haven't held the wake.

I long ago lost the plot of this odyssey. As usual, what started as an attempt to explain my condition has turned into this rambling diatribe against existence in general and mine in particular. The last time I was truly happy? The day I was told that when I go in for this Transplant sometime in February, my social worker will be the same incompetent trollop who screwed me so royally in June 2014. I'm told it will be her last week there, and my first thought on learning that was "maybe she's dying, and I can tell her how useless a fuckwit she was before she goes," so I'm not really in a good headspace anymore. The chance to slag off someone for blocking a handicapped space will keep me smiling for an hour, but it's a selfish, bitter little pleasure. I am not proud of these thoughts, but I am trying to be honest. This is, among other things, a catalogue of human weakness and vicissitude. I'm reminded of a Patton Oswalt bit where he goes on about being the first person to fight a craven, cowardly surrender to cancer. It was funny at the time, now it just seems logical.

I lived well, while I lived. I have more regrets than I can count, but I also have happy memories to look back on. Just... I don't have any to look forward to.

Because I died, March 3rd 2014.

~ ~ ~

The above was written at the end of January 2016, just before I went in for Stem Cell collection. I am still alive, and while I don't have a desire to live I am just stubborn enough not to give up. Collection was miserable, as I expected. I had an odd reaction (you hear the words "anomalous" or just "huh, never seen that before" a lot when you're a Pullen) to the Neupogen and they dragged me in a day early because of a fever. This gave them ample time to argue about what kind of necktubes to fit me with. First it was going to be a central line, then a Hickman, a porta-cath and finally a perma-cath. This is ~9 inches of tubing, by my reckoning, roughly two thirds to half of which is inserted down my jugular vein and the rest was threaded over my collarbone and then under the skin to an incision above my right breast. A pair of plastic brackets sewed to the skin cover the exit wound. The twin dongles are wrapped in gauze and the dressing gets changed once a week or more because every time I bumped it, whacked it or rolled over onto it in my sleep I managed to add to the scabs and dried blood under it. I had a very itchy time, to the extent that I seriously contemplated trying to tear out half my ribcage so I could get at the itchy bits from underneath.

After the dongle they ran some tests, found me a room back on 6West (not on 5W in the Bone Marrow Transplant ward, because they were busy and I wasn't so immuno-compromised yet that I couldn't be in a more open ward) and the waiting game began. Oh, and the foley catheter. Ugh. Not a fan.

Collection required a small dose of chemotherapy drugs... though really, when you're talking of Cyclophosphamide, there's not really such a thing as a small dose, is there? That was to wake up my immune system, shock it enough to get my body releasing stem cells. Then a day later they hooked me back up to the same machine they use for plasmapheresis and set to harvesting.

They kept me for two days after the harvest, to make sure they a) had enough stem cells to do the transplant and b) that I had survived the process and worked the chemo through my system. Catheters are a foul invention, truly, and nothing makes one feel quite so unclean as knowing that they are filled with a virulent poison.

But in the end they got enough stem cells that they could take a mulligan on their first try and still transplant me if they wished. I was discharged, with a supply of Neupogen that would have to be injected into my abdomen on a daily basis, and a laundry list of precautions to take.

A week later my hair began falling out. I last paid for a haircut in grade 8. I have had long hair and a beard since I was fourteen. I had my brother shave my head with my beard trimmer, and my beard though it did not fall out entirely went patchy and mangy. I refused to shave that, though. I've lost enough of myself.

Two years to the day from the night I died I was back at the Ottawa General for my transplant. They hit me with the chemotherapy, a liter of Cyclophosphamide right into my jugular-dongle.

As an aside (another aside, yes) - the bags in which they store chemotherapy should not look so innocuous. They should look baleful. They should be black, with luminous green highlights and possibly a red hourglass. They should leave no doubt just what you are about to be injected with.

Shotgunning a liter of Cyclophosphamide was among the most unpleasant experiences I have had. That amount of fluid pumping right through my heart feels like being stamped on (as mentioned before) and with chemo there is the extra pleasure of knowing that I was being poisoned.

Chemo, for those who have not had the pleasure, is a brutal drug. My appetite evaporated, to the extent that in less than a week they were threatening me with a feeding tube. Everything took on a metallic/solvent taste, other flavours were so distorted that I literally could not stand them without instant nausea. I survived by choking down energy-drinks, mostly. It also comes with the death of just about everything in your g-i tract. When you are paraplegic diarrhoea is a terrifying prospect. My condition was, once more, utterly dehumanizing. Food was one of the few pleasures I had left and now that had been twisted into something deeply offensive to mind and body alike.

On the sixth of march they were satisfied with my white blood cell counts and other samples. They reseeded me with my stored stem cells. This was pretty painless, by comparison, but that does not mean I would repeat the experience.

I don't actually remember much of the three weeks I spent recovering. I read a good deal, I know that. I fought the arguments towards jamming a feeding tube down my throat. I tried to eat enough to stay alive. I avoided leaving my room because I was sans immune system and would stay that way for a good long while. I read through the list of things you need to keep in mind while you have no immune system. It's not a short list, but in brief you need to avoid sick people, a great many foodstuffs, having open wounds, etc, etc.

I was weak as a kitten for a month after getting home. Depression was my constant companion. I hated myself all the more for the pain and weakness and the fact that nothing tasted of anything but pine sol. At first I had weekly appointments with the BMT team at the Ottawa General. They would take blood, request urine samples (always fun when you're in a wheelchair... the one time a nurse requested a 'mid-stream' sample I told her I would be happy to oblige assuming she was willing to deal with the unavoidable mess that would entail) and check on my condition. My counts bounced back very quickly, and in short order they reduced it to bi-weekly visits, then monthly visits and finally in August they transitioned me out of the Bone Marrow Transplant program back to hematology/oncology. Eventually my taste buds recovered. Things tasted normal by early July.

The Federal Government, newly Liberal after Canadians ousted Reformacon Steven Harper, came out with its guidelines on assisted suicide. They are laughably narrow, self-evidently in contravention of the Supreme Court decision of 2015. Before they passed Parliament there were already lawsuits being assembled to fight them. As of this writing (9/3/2016) 118 Canadians have received an assisted suicide. Doctors relate that less than 1/10 of requests are accepted. There is no room for someone with my apparent health in the guidelines as written. No escape hatch for me until the court cases roll back through and the Government is forced to rewrite the legislation.

My hair is about an inch long now. Not that it matters since I haven't been able to look in a mirror in over two years now. I can go out in public, I can eat what I like without too much worry. Sometime this autumn my hematologist will contact my GP to begin a two year course of vaccinations because all my previous immunities died when they rebooted my immune system from factory backups. Not all vaccinations, though. I cannot, for instance, receive the vaccine for Shingles. So I will be on some level of medication for the rest of my life, to protect me from the illnesses my body cannot be inoculated against.

I lived through an autologous stem cell transplant. My hematologist suggests that my recovery will peak in three years from march. My neurologist agrees and wishes to schedule another electromyogram to see how my nerves are doing. Both have rosy outlooks based on how my body bounced back from chugging a bag of venom via the heart. Between them they have even managed to get me monthly visits from a chirpy physiotherapist to advise me on exercises to try and get my muscles and joints ready in case the nerves do recover (I do them more for something to do than any expectation of improvement, and grit my teeth through the agony). An attempt to wrap my feet to deal with the edema failed miserably, after two weeks the pain was so severe I could not even form thoughts, so compression stocking are... not an option. My feet and ankles are still dead and swollen. Neuropathy is still my constant companion. I am still dependent on a mechanical lift to get into my wheelchair. I am still dependent on my family for literally everything. I still have tremors in my hands. I still suffer from regular insomnia because reflection on my condition keeps my mind from sleep. I am still utterly reliant on Nabilone to be able to function at all, except when I hurt enough to take a slightly higher dose and am high enough that I do not trust my own judgement. I still am not sure why I bothered going through such a miserable process.

It did not kill me, but it sure as hell did not make me any stronger. Maybe that will change in time. Or maybe I'll be allowed to take the easy out I have been longing for since the third of March, 2014. I honestly don't know what tomorrow will bring, and (quel surprise) neither does any medical professional I have yet encountered. Insufficient data, too few cases, each one too unique.

So, even after the ASCT I am right where I was in July two years ago: in limbo, waiting to see if I will get better or get worse. Nothing has changed except that I have suffered a great deal. They probably cured the cancer. They probably dealt with the POEMS syndrome. Certainty is a coin that no one can offer me, and as someone who relies on reason because I lost faith in my teens uncertainty is deeply frustrating.

But uncertainty is where I live now. Trying to fill 24 hours a day is a challenge. I have no ambitions left, no drive or motivation for anything that I used to love. But I'm alive, at least in strictly medical terms.

When I do stop breathing, the rest of the world will have to admit what I knew two years ago: I died March 3rd, 2014. Years late to my own funeral.

* * * * *

(This blog is cross-posted from Daily Kos and the Monday Night Cancer Club Group, part one visible here, part two here, part three here, part four here)

Sunday, 4 January 2015

What do I need?

My brother just asked me if I need anything, before he goes to bed. The list goes on unending.

I need to be able to sleep comfortably, without waking up a dozen or more times in pain, for the first time in almost a year.

I need to be able to open and close my hands again, like I used to.

I need to be able to function like a real human being without taking four dozen pills every day.

I need to be able to go ONE day without having to rely on narcotics to hold back the incessant pains of my worthless body.

I need to be able to stand up on my own two feet again, instead of being trapped and crippled on nerve-deadened legs that somehow still feel pain even if they don't move.

I need to not have to kill myself trying to rebuild muscle around dead nerves, trying to regain some control of my extremities.

I need a doctor who can actually give me answers better than: "You have a zero to one hundred percent chance of a full recovery. Why not try taking a drug derived from known teratogen Thalidomide? It might possibly maybe help you and it is slightly less than fifteen thousand dollars per month."

I need an oncologist who can tell me if the cancer is gone or if this starts all over again in one, two, five years' time.

I need the strength to face one more day in this fucking husk I am trapped in.

or I need the strength to put an end to my misery in spite of my friends and loved ones.

I am so fucking sick of having to live as a cripple. It has been eleven months since I started losing myself. Of those eleven months, seven have been spent in various hospitals. First my hands curled into themselves as the nerves died, myelin sheathing ripped away by my own misguided immune system, reducing me to hammering away at this keyboard like baby's first typewriter. Then my legs: the last time I stood on my own two feet was March 3rd, when my legs finally gave out and I started my long, long fall.

Hands and feet were followed soon after by happiness, freedom, independence, joy, dignity, self-respect, privacy, hope (killed by my many physicians, bit by bit as they revealed their ignorance and inability) and life as a human being instead of a potted plant.

Friends and family urge me on, help me, support me. Not a moment passes that I don't hate myself for being so helpless.

I promised myself when I was young, when I first heard about Alzheimer's, that I would take my life before I lost myself this way. That loss of my mind has been my secret, midnight terror since I was a child.

This... is almost as bad. Forced dependency, near-total helplessness, loss not of mental but of physical faculties... and always the unanswered question, because the doctors have no answers. There are no answers to give because none of them have seen a case like mine. POEMS syndrome is, apparently, vanishingly uncommon and supposedly unheard of in someone so young. The nerve damage is peripheral... who knows, I might get it all back... or some. Or none at all. Or the myeloma could wake back up and drop me even further down, all the way to living as a vegetable on a respirator, pissing and shitting myself until someone is kind enough to put me out of my misery. No one knows, and faithless as I am, all I am left with is my reason, and my misery.

My misery.

My misery is boundless. Unending. Agonizing, every day. I cannot do the simplest of tasks, for all that I have clawed back some control with my toil, sweat and ten million aches and twinges and pains. Look ma, ONE of my hands almost works. Kinda, sorta, a bit. Except that there is no strength in it even if I have partial range of motion. And if I hadn't broken both knees along with my ankles three months ago, they could bend a little, on command. These are the little victories I am supposed to fuel myself with.

My misery haunts me, and try as I might I can only distract myself so long before something drives it home. Having to piss in a bottle because I can't walk to the bathroom. Trying for twenty minutes (and failing) to tie my hair back with an elastic. Downing narcotics just to be able to fall asleep every night.

This stopped being life a long time ago. This is just existence. A prison sentence, and the cell is my own body. Except a convict tends to know their sentence. Am I facing life imprisonment, or parole in six months? Or maybe dumped into solitary instead? It's a mystery to all.

I haven't looked in a mirror in at least six months. I hate what I see there. I never loved myself, but I have truly come to loathe this thing I have become.

I was asking to die in April, when they were running me through every test under the sun. I was planning to die in June, when they told me congratulations, you're marginally functional and we're bored of staring at a problem we can't fix, and dumped me out of rehab onto a family entirely unready to deal with my affliction.

I was wanting to die, just not alone, in July when every single individual or organization who had promised me help failed me within two weeks of moving in with my retired parents.

I was begging to die on the shower tile, tears in my eyes from my shattered joints, screaming for a bullet.

I was still begging to die five days later when they finally found painkillers that sort of worked. And two weeks later when they cut them and I woke up from my drugged stupor. Those two weeks of blankness and vague memories are the very best time I have had since February. The closest thing to an escape I have found since my flirtation with alcoholism years ago.

And I am looking ahead, to the one year anniversary of this hell, and thinking about my promise to my doctors, family and myself that I would push and fight and work for one year. One year, I would live like this and fight to get back on my feet. But if I wasn't 100% in a year, I was done.

A year has been enough to know I hate living like a cripple. A year was long enough to say my goodbyes to everyone who mattered.

2014 has been the worst year of my life. A nightmare I can't wake from. A year of knowing just how much happier I would be if I just died in my sleep instead of facing another day of slogging towards... what? Some fraction of normalcy? Some vainglorious hope of a total recovery?

I hate this life. It isn't worth it. If there is a god, then I humbly submit that mankind's task is Titanomachy: we grow to be equal with our creator so we might kill the tyrannical monster who has so afflicted the universe, and then set ourselves to the reordering of things in a more reasonable manner.

What do I need, Tom?

To set my mind and my family free of all this useless dead weight weighing us down.

Because of all the things in the world, there are only two I look forward to anymore: learning to walk again, so I can get away from everyone forever because I never want to rely on anyone for anything ever again...

And as quick and painless a death as I can manage with crippled hands and zero aid, because I am coming more and more to crave the only peace and comfort my imagination can devise.

I died March 3rd, 2014. The frustrating thing is that no one else seems to have noticed. Fooled by the semblance of life in this still-warm corpse I'm haunting.

I need my family to let me go, because I am so very very exhausted with this meat-puppetry.

I need to stop hurting, and the only way I have left is to die.


So no, I didn't get what I really wanted for capitalismas this year. Why do you ask?

Wednesday, 1 February 2012

To shake the dust off, a movie review

It's been almost a year since I wrote here. At times I feel guilty about that, but I haven't had a lot to say. Watching what's happened in Canada and the world for the last nine months or so just saddens me. It doesn't much surprise me, but it does sadden me.

But that's not what I'm going to write about. I'm going to write about the movie I just finished watching.

It was the worst movie I have ever seen.

I'm so glad I didn't spend money on it.

I feel ashamed to have watched it. My brother, who watched the last half hour with me, is now physically ill. In his own words, he watched so much shit that he developed indigestion.

Transformers: Dark Side of the Moon, is utterly, wholly and in every way a terrible film. I did not think it was possible to make a worse movie than Transformers: Revenge of the Fallen (or whatever it was). Michael Bay should be dragged out into the street, wherever he is, and shot twice in the head.

After which, we should collect up EVERY copy of his films. All of them. Every iota of his work. We should take his corpse and all of those movies and commercials and everything else and toss them into the reactor in Fukushima before we cover it all over with lead and concrete for the next few centuries.

Other people have explained that Michael Bay is incapable of telling a story. I agree. I can't help but wonder if Michael Bay is capable of coherent thought. Has anyone held an actual conversation with him, or does he just spew cliches and sound bites of horrible dialogue?

The plot, what there was of it, was a jumbled, muddled mess. I can't imagine that there was an actual script, given the ridiculous shit that was spewing from the actors mouths. My personal theory is that Bay simply masturbates onto a storyboard and then goes on to film whatever he sees there. It's the only way to explain some of the ridiculous bullshit that ends up on the screen.

Physics? Bin it. Logic? Nope. Reason? Out the window with the extra who didn't hang on while the building was falling over for what felt like twenty gods bedamned minutes. Autobots? No, they don't really feature. They wander in, speak a few lines, blow some shit up and then they're gone again for ten or fifteen minutes (or more).

Michael Bay has made a movie trilogy about robots... and THE ROBOTS DO NOT HEADLINE A SINGLE FILM! They hardly even qualify as characters, though to be fair none of the human characters truly qualify as characters. They're cardboard cutouts with a handful of traits assigned to make them seem more than two dimensional.

Instead we are treated to Shia LeBoeuf, who is easily an actor of the caliber of that red shirt who got eaten by the Denebian Slime Devil in that one episode of Star Trek. He's a fantastic actor, truly, with a range from grumpy to angry to screaming and back to grumpy again.

But when I go to see a movie about Robots fighting Robots, a C-list actor who lucked into A-list credentials isn't what I'm looking for. Hollywood nepotism, oh the joys it holds for us.

I am searching for something else I can say, but all I keep coming back to is my disorganised fury at the wreck of a film I just witnessed. From Leonard Nimoy, who played Evil Robot Spock, right down to the cliche Star Trek quotes; to John Turturro, who seems bound and determined to be Al Pacino but simply doesn't have the presence or the charisma to pull it off; to the assortment of Ethnic stereotypes that make up the Autobot ranks. Or the fact that, while equipped with cannon, blasters and missiles, most of the Transformers still seem to prefer swords, axes, buzz saws and bare hands when fighting. None of it was good. The movie is truly horrible, both as a whole and in every single part. As bad as movies get.

And then there was the female lead. No, not Intelligence Bitch (who was both, and who seemed devoid of any other traits than Spy and Bitchy), the other one. The blonde mouthbreathing underwear model who looks for all the world like she just walked out of the intensive care ward.

Really. Those who have seen the movie can vouch for me on this - every time you see her, she looks as though she's been hit between the eyes with a hammer. I don't know her, so I make no judgement, but it's not an attractive look. It leaves me wanting to wrap a blanket around her and call an ambulance. Whether it's shell shock from witnessing Michael Bay's directing or just a quick trepanning during the casting session I have no idea, but I truly do believe the poor woman is in need of medical attention.

Ugh. I feel dirty. I love the Transformers. I can deliver long winded stories about them, treatises on Energon and The Matrix of Leadership and why Hound should have had the spotlight instead of Bumblebee. I remember when Ratbat was in charge of the Decepticons, and I still cry when Optimus Prime dies in Transformers: The Movie (the 1980's one, which was animated by hand as God intended). This abortion is not even in the same world as the Transformers of my youth, and I speak not in dizzy nostalgia, I watched Grimlock kick Unicron just last week.

I have seen bad movies. We all have. Some bad movies are, secretly, in our heart of hearts, good. Ones that we treasure and trot out now and then, to savour the badness. Guilty pleasures.

Rest assured, Transformers 3: Dark Day for Cinema is NOT one of those films. This is the other kind of bad. The kind of bad that will leave you feeling nauseous and angry. The kind of bad that ends marriages. The kind of bad that sees you leaving your child in the woods on the way home from the theatre and telling your spouse they were a lost cause anyways.

I could not conceive of a movie this bad before. I saw it and I still cannot encompass how bad it truly was.

If you haven't seen it, steer clear. If you have seen it, I know your pain.

If you have seen it, and you enjoyed it somehow? I don't know... I can try to forgive you, but I think leaving you in the woods for the coyotes might still be for the best.

Friday, 1 July 2011

Oh. Canada...

I've been absent for a month or so, dealing with family and personal business and taking a break from watching/reading the news and the blogosphere. It's left me feeling quite disconnected from the daily atrocities being perpetrated around me, which is both a nice break and unsettling.

Today is Canada Day. In past years I would have been celebrating and enjoying myself. Not today. I have no patriotism left in my heart.

Make no mistake, I love my country. Canada is beautiful and the people are with few exceptions good, friendly and open-minded. But I have lost all the pride I used to feel when I thought of my nation. Watching recent history, how our government has dragged our good name and reputation around the world through the mud and perverted or ignored our laws and values leaves me feeling ill.

So no, I am no longer a Proud Canadian. When I call myself Canadian I feel not pride but shame, recrimination and dread. For the unjust wars we are helping wage that are not just wasteful but evil. For the policies that *my* government espouses that enrich a few and grind the rest a little further down into the mud. For police that I no longer trust but now actually despise for their corruption and violence against the people. For union-busting. For nonexistent environmental policy. For all of that and more, I am Ashamed to call myself Canadian.

So for me Canada Day is not for celebration. I will spend it mourning and searching for right actions I can take to try and undo all this harm.

Rebuilding the Canada I loved will be a long and arduous task and I don't even know where or how to begin.

My Country is Broken.

And so is my Pride in her.

Friday, 3 June 2011

A Young Woman Deserving of a Standing Ovation

Senate Page Brigette DePape

(or is it Brigette Marcelle? there appears to be some conflict on the point of her surname)

I would like to extend this young woman my thanks for her moral courage and wit.

May hers be only the first of many barbs sunk deep into the hide of Stephen Harper and his Government.

Wednesday, 1 June 2011

The First of June... The Glorious First of June

Two hundred and seventeen years ago today, there was a great battle.

The Third Battle of Ushant.

The Glorious First of June.

But let me start at the beginning...

In 1793 France's harvest failed. An agricultural nation found itself facing famine. The French Revolution was in jeopardy. France's armies were embattled on their borders and the people at home faced starvation.

But France had one ally among all her enemies: America, a fledgling nation itself, could provide the food France needed to sustain herself. By Christmas of 1793 a fleet of a hundred merchant ships had assembled along the east coast of America. A small flotilla of the French Navy, under Rear-Admiral Vanstabel slipped out of Brest to meet them and escort them back home with their cargo.

Great Britain was slow to react. Total war was an idea that had yet to be fully realized by the nations of the 18th century. These were not yet the days of the great Blockade, when the Channel Fleet under Lord St. Vincent scarcely saw port but patrolled up and down the coast like a pack of wolves, swooping down on any French ships found at sea and slipping in to cut out or burn ships at anchorages up and down France's coast.

Still, on the 2nd of May, 1794, the Channel Fleet left Spithead under Admiral Lord Howe with thirty-two ships of the line and ten frigates.

A quarter of the warships split off to escort a merchant convoy across the Atlantic. The remaining twenty-six battleships and seven frigates sailed south with Lord Howe in command. For two weeks his fleet spread out across the Atlantic in search of the French grain convoy but found nothing. Reassembling at Brest, they found the harbour empty.

The French Fleet had sailed three days earlier, under Admiral Villaret de Joyeuse with twenty-one of the line. A royalist who had risen to captaincy in the days before the Revolution, Villaret de Joyeuse nevertheless felt his loyalties were to France and had remained with the Navy. The situation was so desperate in France that the National Convention had let him know that if the grain fleet failed to make landfall, his head was forfeit. During the height of the Terror, this was not an idle threat, and one of their representatives was aboard his flagship.

On the 19th of May, Lord Howe again turned his ships out to sea. The day before the two fleets must have come within a hundred miles of each other. But in the days before wireless, fleets were dependent on signal flags. Without sufficient frigates to spread out across the miles in search of the enemy, Lord Howe's fleet had no way to know their enemies had been so close.

At 5 a.m. on the 28th of May, a signal went up from the HMS Latona, one of Howe's frigates. A sail had been sighted. After three hours, the sail proved to be a British merchant brig on course to London. As this fact was being spread through the fleet, more sails were sighted. This time it seemed certain that it was the French.

Admiral Villaret, reinforced to twenty-six ships, was to the south. After meeting the convoy he was cruising ahead of it, and with the wind from SSW was moving north. On sighting the British, he gave the order to Form Line and their course came north-west.

Lord Howe gave the signal to tack. The French, with the wind behind them, had the weather gage and the initiative in the engagement. A single order from Villaret and his ships could run downwind towards the British or turn and run with a lead to daunt any British pursuit.

By late afternoon the two fleets were converging and the first shots were exchanged. The French turned and the British followed with all sail as Lord Howe gave the order 'General Chase'. At this point the grain convoy would pass far to both fleets sterns, but with enemies in sight the British seem not to have spared a thought for the convoy.

That evening, the HMS Audacious (74 guns) finally caught up with La Révolutionnaire (110 guns). The French vessel had exchanged distant broadsides with a number of other vessels during that long day, but now the two came to grips at close range. For two hours that evening the two vessels hammered at one another, with the higher standard of British gunnery providing an advantage over the more inexperienced French crews. Just before 10 p.m. La Révolutionnaire struck her colours and was dismasted as she collided with Audacious. Audacious herself was heavily damaged, with her rigging shot to pieces and scarcely able to maneuver. In such a state, she was incapable of boarding her conquest and the two ships drifted apart. By morning Audacious had jury-rigged repairs enough that she could sail before the wind, but La Révolutionnaire had been reinforced by several frigates. All Audacious could do was turn and limp for home.

La Révolutionnaire did the same, and both vessels eventually made their home ports without further action.

The rest of the two fleets continued their headlong chase, and by dawn were sailing south-east. In the night, the French had regained their advantage to windward and Lord Howe called off the chase and issued orders to form line.

With the British Fleet to the north and to leeward, the two fleets continued their dance with the British still in pursuit of the French. Lord Howe passed on orders to tack in succession at around 7 a.m. on the 29th, pointing the British line at the tail of the French line of battle.

Observing this maneuver, Admiral Villaret gave orders to wear ship and the French line began to reverse itself, retracing its steps towards the British. With the grain convoy to think of, it was vital to keep the British occupied.

Lord Howe had seized the initiative from the French. His attempt to split the French fleet in half had failed, but he now held the weather gage: he could attack when he chose. As both fleets continued on course to the west, British and French sailors worked furiously to make repairs.

The morning of the 30th brought fog, reducing visibility in spite of strong winds. When the fog lifted mid-morning, the British sighted the French fleet making headway to the east. Both fleets changed course towards one another, but the fog thickened again and by noon the British ships could not see each other, to say nothing of their enemies. Turning back to their original course, the British fleet listened for signals but there was nothing else to be done.

The fog persisted until the afternoon of the 31st of May, with the French sighted to the north, downwind and about five miles away. It was sunset before Lord Howe's fleet could reassemble and reorganize itself. Through the night the British maintained their westerly course while the frigates kept the French within sight.

Sunday, June 1st arrived with cloudy skies and wind from the south. Both fleets were moving westwards and more or less parallel. Lord Howe passed orders to pass through the enemy line. This meant a long run towards the French fleet, facing their broadsides bow-on, but as the British passed through the French they could fire into the vulnerable bows and sterns of the French ships and they would finish downwind of the enemy, leaving them without an easy avenue of retreat. A ship upwind had two choices in close action: to fight, or to surrender. Lord Howe was seeking a decisive fight that would leave the French nowhere to run.

For five days now, Admiral Villaret de Joyeuse had led the Channel Fleet away from the grain convoy. He had done all he could to protect the precious grain ships by leading the British away, and now he would buy them more time to escape by bringing his ships into action with Lord Howe. His duty was already done, whatever the outcome.

Lord Howe's fleet bore down on the enemy in line abreast, with the intention of arriving as simultaneously as possible. The intent was to rake the French with broadsides and round on the French from the lee side, leaving them nowhere to run. In practice, it was impossible for twenty five ships to maintain a neat line, especially when facing fire from the French line of damage.

Less than half of Lord Howe's fleet managed to break the French line and the battle became a general melee. HMS Queen Charlotte, Lord Howe's flagship, came alongside the French Montagne before engaging Jacobin, Républicain and Juste. HMS Brunswick and the French Vengeur engaged so closely that their anchors caught and for hours they hammered away at each other before Vengeur was dismasted and the Brunswick drifted away downwind aimlessly as she struggled to make repairs.

At length, Admiral Villaret de Joyeuse managed to slip free of the battle to the northward with twelve ships. The British, with only eleven ships battle-worthy, were unable to mount a pursuit and they had seven prizes to protect. Vengeur was the worst damaged, after being holed below the waterline by Brunswick. Only the arrival of boats from HMS Albert and Culloden and the help of the cutter HMS Rattler managed to save nearly five hundred survivors of her crew as she settled lower in the water and finally sank.

Working through the night, the British managed to make their six other prizes and their own vessels seaworthy, but unable to face another battle set sail at dawn on the 2nd of June for England.

The French grain fleet arrived with few losses and Rear Admiral Villaret de Joyeuse was promoted to Vice Admiral. He survived the Terror and was later appointed by Napoleon as Governor of Venice.

The Channel Fleet under Admiral Lord Howe sank one and captured six enemy vessels without losing a single British ship. Their prizes: America (74 guns), Impétueux (74 guns), Juste (80 guns), Achille (74 guns), Northumberland (74 guns) and Sans Pareil (80 guns). It was the first major action of the Napoleonic Wars, and one of the most resounding and one sided fleet actions in naval history.


The Order of Battle of 3rd Ushant is available on wikipedia Here.

Thank you, for reading this far. My family have a long and proud naval history stretching back to the 18th century. It's important to me, to keep the memories alive of days when men could fight and then turn about and risk their lives to save fellow seamen.

As a last thought, I'd like to offer two poems by Rudyard Kipling. He is my favourite poet, the only one who can consistently reduce me to tears just by reading. I still cannot read any but his shortest poems aloud without having to stop and compose myself mid-verse.

From "Song of the Dead"

We have fed our sea for a thousand years
And she calls us, still unfed,
Though there's never a wave of all her waves
But marks our English dead:
We have strawed our best to the weed's unrest,
To the shark and the sheering gull.
If blood be the price of admiralty,
Lord God, we ha' paid in full!

There's never a flood goes shoreward now
But lifts a keel we manned;
There's never an ebb goes seaward now
But drops our dead on the sand --
But slinks our dead on the sands forlore,
From the Ducies to the Swin.
If blood be the price of admiralty,
If blood be the price of admiralty,
Lord God, we ha' paid it in!

We must feed our sea for a thousand years,
For that is our doom and pride,
As it was when they sailed with the ~Golden Hind~,
Or the wreck that struck last tide --
Or the wreck that lies on the spouting reef
Where the ghastly blue-lights flare.
If blood be the price of admiralty,
If blood be the price of admiralty,
If blood be the price of admiralty,
Lord God, we ha' bought it fair!

and "The French Wars"

The boats of Newhaven and Folkestone and Dover
To Dieppe and Boulogne and to Calais cross over;
And in each of those runs there is not a square yard
Where the English and French haven't fought and fought hard!

If the ships that were sunk could be floated once more,
They'd stretch like a raft from the shore to the shore,
And we'd see, as we crossed, every pattern and plan
Of ship that was built since sea-fighting began.

There'd be biremes and brigantines, cutters and sloops,
Cogs, carracks and galleons with gay gilded poops--
Hoys, caravels, ketches, corvettes and the rest,
As thick as regattas, from Ramsgate to Brest.

But the galleys of Caesar, the squadrons of Sluys,
And Nelson's crack frigates are hid from our eyes,
Where the high Seventy-fours of Napoleon's days
Lie down with Deal luggers and French chasse-marees.

They'll answer no signal--they rest on the ooze,
With their honey-combed guns and their skeleton crews--
And racing above them, through sunshine or gale,
The Cross-Channel packets come in with the Mail.

Then the poor sea-sick passengers, English and French,
Must open their trunks on the Custom-house bench,
While the officers rummage for smuggled cigars
And nobody thinks of our blood-thirsty wars!

Wednesday, 25 May 2011

The Latest News on the Troubled F-35

Things just keep getting better and better in this sad little tale. First we have President Obama threatening to veto a defense authorization bill to develop a second engine. This has been bandied about for some time now, with various arguments for and against, but Defense Secretary Gates has come out firmly against it as wasteful.

Then there's the news that Japan is rethinking its plan to purchase the F-35 in light of the delays that keep cropping up in the program. They're considering the F/A-18 Super Hornet and the Eurofighter Typhoon as alternatives.

Or the news that the F-35's operational range falls short of estimates and program requirements. Fantastic, so the plane that Canada will need to maintain Arctic sovereignty has a range that falls 15% below the original estimates? I should note that carrying external fuel tanks does seriously degrade the vaunted "stealth" capabilities of the F-35, rendering it just as visible as any of its competitors (which, far from being six years from operational testing, are already operational with numerous countries).

I think my favourite piece of news to crop up of late is this one: Lockheed doesn't actually have an estimate of the cost of the F-35 program. They claim it will be less expensive than the estimates others have advanced, but when asked for a number, they reply "insufficient data". Come on, guys, at least have the courtesy to lie. You could always state later that "our estimate was made with too little information, but on further testing cost estimates are being revised upwards."

Even I could come up with some convincing weasel words there, and I'm just one of the plebes. You lot are the largest supplier of the United States Military (and, let's remember, the worst and most notorious war profiteers) and the best you could manage was "insufficient data"? That's really just sad. I expect better from the crowning beacon of the Military Industrial Complex. It's like you're not even trying.

Finally, just to round up this set of links: the U.S. Senate and the Department of Defense are in agreement that the F-35 program is going to cost too much. Lockheed of course claims they can bring costs down (any takers for THAT particular bet?) and that they can build them and run them more cheaply. They just need more time for testing.

While the meter is running, of course.

It's really quite simple: Canada has been sucked into the U.S.A's most expensive (or is that costly?) military acquisition ever, along with numerous other countries that have fallen for the hype. The F-35 development has been a morass of unanswered questions, extended delays, cost overruns and diminishing expectations. Other nations are starting to see the writing on the wall, but extracting themselves from this whirling vortex of failure promises to be quite a challenge.

I've said it before and I'll say it again - Canada needs to start over from scratch with a completely open and competitive bidding process. Replacing our CF-18's isn't a question, it needs to be done to protect our men and women in uniform. What we choose to replace them with, however, remains to be determined. Throwing our money into the black hole that is the F-35 is just folly.

In spite of what our glorious, dead-eyed leader and his cronies would tell us, there ARE other options. Most of them cheaper, already tested and ready for delivery.

It's really just that easy.

Thursday, 19 May 2011

Mankind's Greatest Creation

When I first started this blog, I didn't necessarily intend for it to be relentless political and social commentary. That's more a side effect of my own obsessions than an actual intent.

So today I would like to rant and ramble about something else: Mankind's greatest and most lasting achievement. Our finest creation, and one that is as important and valuable today as it was when we first began crafting it.

I speak of course of the Dog.

Nowhere on this Earth will you find a more loyal, loving, hard-working and reliable companion than Canis lupus familiaris.

Whenever I start to doubt my own worth and contribution to the world, I never have to look further than the eyes of my dog, Jasper (well, his full name is Jasper Tobias Friendly-Bear, he was named by committee). The love and faith he puts in his human family surpasses anything I have ever seen in my fellow man. If I have earned his approval, I cannot be so vile as all that.

Dogs are our greatest creation for a simple reason: they genuinely love us. Dogs can live without humans, but without us they are never quite complete. We took wolves and we made them just a little human. They have all the best of both worlds, and that makes them special and precious.

History is rife with stories of the loyalty and unswerving devotion of Dogs, even in spite of our own failings. We do not give them the credit they deserve, but Dogs have followed us through the rise of civilization and even today they work tirelessly for us. There are breeds of dog that were created JUST to save human lives (like the Newfoundland or the Saint Bernard). They work alongside their masters at a thousand different tasks, happy just for the chance to be useful, asking only for approval.

We are not always the most loyal of masters, we do not always deserve the credit our Canine companions offer us, but to me that makes their steadfast adoration so much more genuine. Dogs love us because of what they are, and because of who we made them.

All they want of us is to be one of the group. Some food (and maybe a snicket or two of whatever delicious thing we're having, hmm? ohpleaseohpleaaaaaasssseeeee...) and a warm spot to curl up at night are perks but I think they would be satisfied just to be given a place beside us.

If there is any lasting good that Humans have achieved, I think it lies in Dogs. Our first attempt at playing God, and the only one that seems to have paid constant, positive dividends for all of us. Buildings and inventions crumble, knowledge is forgotten (if it's ever listened to) and empires collapse but through it all Dogs have followed us and will continue to. Loyal to the very end.

The reason for this post is simple: I was just watching my dog, Jasper, chasing off a red squirrel from the bird feeders. I'm out at my parents' home in the country, and the red squirrels are a pleasant change from the large (and aggressive) black variety we get in the city.

When he was younger, Jasper and I had a game: I would sit down in a chair on the lawn, with him laying down beside me, and we would wait while one of those awful black squirrels climbed down the trunk of the maple tree beside the driveway. Jasper would tense up as soon as he saw it, but I trained him to wait until I gave the word. Once the squirrel was a few feet from the tree, just far enough to give both of them a sporting chance, I would tell Jasper to "go get him" and Jasper would take off like a black, furry guided missile, barking all the way.

He never caught a squirrel, but that was never the point. I would check him before he did in any case. The point was chasing off a small furry thing that was on our territory, because that's just not allowed, is it? Well, then there's the barking and running. Jasper does love the running and barking.

I should point out that both of Jasper's parents were foundlings. He is as purebred a mongrel as it is possible to get. There's some terrier in there, somewhere, and quite possibly some coyote as well from the way he howls and whines, but his ancestry is and always will be a mystery. What Jasper IS, is the most Dog dog I have ever known: chasing squirrels, chasing cats, burying everything, digging up the yard, chasing his tail, fetching sticks/balls/anything you care to toss and any other classically "Dog" behaviour you can think of. He's not perfect (well, I think so) in that he's a mooch, and he's often quite excitable and protective of my family when strangers are around, but he is as much my brother as my brother is. I would not change him in any way, except to give him the same long lifespan that humans enjoy.

Well, and possibly heat vision, just for an afternoon. That would surprise the hell out of those black squirrels that keep disturbing the birds and red squirrels at the feeders. Not to mention the mailman back in the city.

Suffice to say that my family has had several dogs over the course of my life and all of them have been special. Most importantly, though, they have been parts of the family rather than simple pets. I adore Dogs, and not just because they are floppy, loyal companions.

I can never look into a Dog's eyes without seeing echoes of all the generations of Dogs that came before, and feeling an obligation to repay some of that loyalty and love that we have been paid by our four-legged companions.

Colour me shocked: Harper & Senate Appointments.

What. A. Surprise.

Scarcely any time at all has passed and lo and behold, our all-powerful, well-coiffed Prime Minister has decided that he will go ahead and make some appointments to the Senate after all.

Rather than wait and begin a process to make the Senate more democratic, Stephen Harper has decided to appoint a trio of Senators from the ranks of Conservative candidates who lost their ridings. I suppose there had to be a use for all those failed candidates, and after all two of them are previous Senators.

Look forward to more of this in the next five years. There are a LOT of Senate retirements scheduled before the next election: twenty five, to be precise. The Conservative majority in the Senate is going to last a long, long time.

Add in the three Supreme Court appointments that our right honourable Hagfish-with-a-Haircut will be making over the summer and Canada is going to have a very different political landscape by the time the next election rolls around.

I'm really not certain what we can do to fight this? A legal omnibus bill chock full of nasty little goodies like Internet Lawful Access (1984 is 2011?) will just be the beginning. Op-eds in favour of healthcare privatization are already being published, just to prepare the ground for an eventual assault on our hard-won universal medical programs.

Is there going to be anything left of my country by the time the Conservatives come up for reelection? Or will Harper and his fascist little gang have carved out the heart and soul of my nation?

(Sources with far more details than my own rant. They do the heavy lifting so we don't have to, bless their hearts: CBC NewsThe Sixth Estate)

Wednesday, 11 May 2011

On the Long Gun Registry and Gun Control in general

It is the intent of our incoming Conservative government to scrap the Long Gun Registry. Leaving aside the fact that police associations across the nation have spoken out against this action, the money's already been spent. Cancelling the Long Gun Registry will save a very small amount of money.

But more important is the simple question: why object to registering your firearms?

Let me explain - in a very general way, I am against gun control. Every repressive government in history has limited access to weapons, from the Japanese Shogunate and Feudal Europe to Communist Russia and China. A disarmed populace is a helpless populace, and therefore incapable of opposing the government. Without weapons to defend ourselves, we are sheep at the mercy of the wolves and beholden to the dogs who are set out to protect us.

I'm also of the opinion that an armed population is a polite one. Or would be, in the generation or so after natural selection was given time to demonstrate its effects. Of course, I'm also of the opinion that an educated population is a free one, and our current level of education and awareness is woefully lacking at the moment. So no, I would not support a dismantling of gun control in Canada at this time. Canadians are insufficiently mature to handle that sort of personal responsibility.

Please note: I include myself on that list. Given license to carry a firearm on a daily basis, I would give myself three months before I used it in a fit of pique on some slack-jawed moron. Six at the outside, but I do not suffer fools gladly. So no, we're not there yet. Not as a whole, not as a nation.

Gun control, of various sorts, has been a reality in Canada since 1892. It has been trending steadily upwards from the first. It isn't new, and it's not a surprise. Anyone who has been paying attention during the last century could view the curve towards control of firearms. While from a philosophical point of view I am troubled by this restriction of my freedom, I am both a practical and deeply cynical man. I have no illusions that the restriction also applies to people who are far more dangerous/foolish/deranged than I. The laws may keep interesting and entertaining technology out of my hands, but they do the same for criminals, potential criminals, idiots and the insane.

So I am both willing and ready to register any firearms that Canada will allow me to own. I may bemoan the fact that some firearms are restricted or prohibited (often for reasons utterly divorced from their capabilities, in many cases based entirely on their appearance) but I accept it. If I truly felt a need to own, say, an FN FAL like the one my father carried while he was an officer in the Camerons, or a Kalashnikov, I would move somewhere less restrictive.

Will the Long Gun Registry save lives? Possibly, but a significant percentage of firearms used in crimes aren't registered and a great number have been smuggled in illegally from the United States. It goes without saying that criminals are less likely to register their firearms. In the same sense that locks are for honest people, the Firearm Registration is for law-abiding citizens.

But the Registry has proven to be a valuable resource for police, and while I have less respect for the Rozzas than I did when I was younger (see the G8/G20 protests, Stacy Bonds, Robert Dziekanski, etc) they still serve an important purpose for the public and if the Canadian Firearm Registry is a useful tool to them then I have no serious objections to it. More than 10,000 hits a day, or so wikipedia informs me here. The RCMP certainly believe that it works.

The objections to the Long Gun Registry seem to come down to cost overruns, which are a feature of virtually any government program (F-35 jets? G20 security? Those damned submarines we bought used?) and that it doesn't make us any safer.

Originally, the Long Gun Registry was supposed to pay for itself, with taxpayers only on the hook for $2 million. Back when this was announced, I was in high school and I still laughed uproariously. Government programs, especially ambitious ones that have never been implemented before, rarely come in under budget, and even more rarely are they "self-funding". However now that the registry is finally up and running, ongoing costs are fairly modest. We pay for our police and the RCMP to protect us, and if they find the CFR-Online to be a useful tool in crime prevention, doesn't it make sense to maintain it? Certainly I would rather offer them a tool like that than Tasers that are used more as devices of torture than as an alternative to their own firearms.

On the safety point, I tend to disagree. Deaths by firearm have been trending steadily (if slowly) downwards in Canada. Here is a reference page from Statistics Canada listing deaths by firearms from 2000 to 2007. Suicide by gun and accidental death have dropped, while homicide by firearm has increased slightly. I would be interested to see the statistics on death by registered versus illegal firearm, but I was unable to find that on StatsCan's website. A quick look shows that homicide statistics as a whole have been relatively stable the last decade and that the trend in death by homicide has been downwards since the 1970's.

In any case, you're more likely to be murdered with a knife, and I haven't seen any suggestion that the government wants us to register anything sharp longer than 2.5 inches.

Overall, I find the thought of the Long Gun Registry being scrapped both pointless and partisan. It's self-evidently a sop to western and rural residents who feel put upon having to inform their government that yes, they own some guns. It does not cost anything to register or transfer the registration of rifles and shotguns, so the complaints about it costing too much loses even more credibility: the boondoggle of organizing it has already happened, the waste that was going to happen has already happened and keeping it running will be really quite reasonable.

My problems with gun control are largely with the restrictions on purchase and availability. If the government wants to know that I am armed, and even with what, I'm perfectly willing to tell them. Again - if I had any objection, I would simply do what real criminals do and go to the black market. My problems are also largely philosophical, because there are far better candidates for my ire than gun control.

My concerns with scrapping the Long Gun registry are far more concrete and immediate: if it is removed, in ten or fifteen years we will just have to waste the money all over again starting from square one. It has proven a valued resource for law enforcement personnel and may well be reducing deaths by firearms.

We have to license cars, planes, boats, bicycles, pets... is it so outlandish to require that one also registers their rifle or shotgun?

If anyone could present me a cogent, reasoned and logical argument in favour of scrapping the Long Gun Registry, I would change my tune. Until such time, it remains just one more Conservative plan - long on partisan agenda, lacking in benefit for Canada.