This is Lorcán. Lorcán has cystic fibrosis (CF) Lorcán is two years old. Lorcán has been fighting a potentially life shortening lung infection for the last six months and treatment isn’t working.
There is an amazing drug called Orkambi made by Vertex that is not funded on the NHS, this drug could help Lorcán and thousands of others. Over 240 people in the U.K. have died waiting for it to become available. Vertex and the U.K. government are letting people with CF die because of a disagreement over cost.
Parents have had to find an alternative way of getting these drugs for their children and the Cystic Fibrosis Buyers Club have found a generic copy of the drug that individuals can legally import, it is a fifth of the cost. This is however still beyond what we can pay.
I’ve previously shared (one, two) content about my friend Jen‘s two-year-old son Lorcán, who suffers from cystic fibrosis, as well as joining in the #strawfiechallenge earlier this year. A particular aim of Jen has been to get access to a drug that could add decades to her son’s life, but which isn’t being made available on the NHS. Running out of options to get access to medicine that could dramatically improve her kid’s quality of life and prognosis, she’s now set up a GoFundMe and is soliciting donations.
Parachute use did not reduce death or major traumatic injury when jumping from aircraft in the first randomized evaluation of this intervention.
However, the trial was only able to enroll participants on small stationary aircraft on the ground, suggesting cautious extrapolation to high altitude jumps.
As always, when the BMJ publish a less-serious paper, it’s knock-your-socks-off funny. In this one, a randomised trial to determine whether or not parachutes are effective (compared to a placebo in the form of an empty backpack) at preventing death resulting from falling from an aircraft, when used by untrained participants, didn’t get many volunteer participants (funny, that!) until the experiment was adapted to involve only a leap from a stationary, grounded aircraft with an average jump height of 0.6 metres.
That no one would ever jump out of an aeroplane without a parachute has often been used to argue that randomising people to either a potentially life saving medical intervention or a control would be inappropriate, and that the efficacy of such an intervention should be discerned from clinical judgment alone. We disagree, for the most part. We believe that randomisation is critical to evaluating the benefits and harms of the vast majority of modern therapies, most of which are unlikely to be nearly as effective at achieving their end goal as parachutes are at preventing injury among people jumping from aircraft.
However, RCTs are vulnerable to pre-existing beliefs about standard of care, whether or not these beliefs are justified. Our attempts to recruit in-flight passengers to our ambitious trial were first met with quizzical looks and incredulity, predictably followed by a firm, “No, I would not jump without a parachute.” For the majority of the screened population of the PARACHUTE trial, there was no equipoise—parachutes are the prevailing standard of care. And we concur.
But what if we provided assurances that the planes were stationary and on the ground, and that the jump would be just a couple of feet? It was at this point that our study took off. We set out in two groups, one at Katama Airfield on Martha’s Vineyard and the other at the Yankee Air Museum in Ann Arbor. One by one, our study subjects jumped from either a small biplane or a helicopter, randomised to either a backpack equipped with a parachute or a look-a-like control. As promised, both aircraft were parked safely on terra firma. The matchup was, unsurprisingly, a draw, with no injuries in either group. In the first ever RCT of parachutes, the topline conclusion was clear: parachutes did not reduce death or major traumatic injury among people jumping from aircraft.
But topline results from RCTs often fail to reveal the full story. We conducted the PARACHUTE trial to illustrate the perils of interpreting trials outside of context. When strong beliefs about the standard of care exist in the community, often only low risk patients are enrolled in a trial, which can unsalvageably bias the results, akin to jumping from an aircraft without a parachute. Assuming that the findings of such a trial are generalisable to the broader population may produce disastrous consequences.
Using humour to kickstart serious conversations and to provide an alternative way of looking at important research issues is admirable in itself.
Fantastic lightweight introduction to bacteriophages and how they can potentially be our next best weapon against infection as we approach the post-antibiotic age. Plus an interesting look at the history and the discovery of bacteriophages!
Some 702 intimate examinations were done on sedated or anaesthetised patients (table 3). In only 24% of these examinations had written consent been obtained, and a further 24% of examinations were conducted apparently without written or oral consent.
This 2003 study at an “English medical school” determined that vaginal/rectal examinations were routinely carried out on anaesthetised patients without their knowledge or consent. “I was told in the second year that the best way to learn to do [rectal examinations] was when the patient was under anaesthetic,” one fourth year student responded, to the survey, “That way they would never know.”
My friend Jen‘s been blogging and vlogging about cystic fibrosis – which her young son Lorcán has – in order to raise awareness of it and of a promising new treatment, Orkambi, which would very likely dramatically improve the lifespan and health of chidren like Lorcán… were it available on the NHS. For more information, including petitions you can sign, see their blog Little Fierce One.
Warning: this blog post contains pictures of urine, invasive equipment, and the inside of a bladder. It’s probably safe for all audiences, but you might like to put your glass of apple juice down for a minute or two. The short of it all is that I’m probably healthy.
Since my hospitalisation the other month with a renal system infection, I’ve undergone a series of investigations to try to determine if there’s an underlying reason that I fell ill. As my doctor explained to me, it’s quite possible that what I’d experienced was a random opportunistic infection (perhaps aided by a course of unrelated antibiotics I’d been on earlier this year or by certain lifestyle habits), but if that wasn’t the case – if there were some deeper explanation for my health problems – it was important to find out sooner, rather than later.
Early on I had several ultrasound scans of my bladder (at a number of different times and at a variety of levels of fullness) and one of my kidneys, the latter of which revealed some “minor scarring” of one of them which apparently isn’t something I should be worried about… although I wish they’d started the two-page letter I got with that rather than opening with, effectively, “Contrary to what we told you at the hospital, we did later see something wrong with you…” But still, good to be reassured that this is probably not an issue.
More recently, I went to the hospital to have a “flow rate test” and a cystoscopy. The flow rate test involved the most-ghetto looking piece of NHS equipment I’ve ever seen: functionally, it seemed to be little more than a funnel on top of a large measuring beaker, in turn on top of a pressure-sensitive digital scale. The scale was connected up to the only fancy-looking bit of equipment in the room, a graphing printer that output the calculated volume (based on their weight) of the same and, more-importantly, the rate of change: the “flow rate” of the stream of urine.
I suppose one advantage of using equipment like this is that it basically operates itself. Which meant that the nurse was able to give me five seconds worth of instruction and then leave the room, which saved us from our own Britishness forcing us to make small-talk while I urinated in front of her or something. Ultimately, I turned out to be within the range of normalcy here, too, although I was a little disappointed to find that the ward didn’t maintain a daily “score board” of flow rates, as sort-of a science-backed literal pissing contest.
Finally came the cystoscopy, and this was the bit that I’d been most-nervous about. This procedure involves the insertion of a long flexible tube into the urethra at the tip of the penis, under local anasthetic, and pushing it all the way down, through the sphincter, down through the prostate and then back up into the bladder. It’s then used as a channel to pump water into the bladder, filling it to capacity and stretching out the sides, after which the fibreoptic cord (and light) that runs along its length is used to look around inside the bladder to inspect for any of a plethora of different problems.
The doctor invited me to watch with him on the monitor, which I initially assumed was because I was clearly interested in everything and kept asking questions, but in hindsight I wonder if it’s just that he – quite rightly – assumed that I might have panicked if I’d have been looking in the direction of the piece of equipment he brought in and jabbed at my penis with. I only looked at it while it was on its way out, and my god its a scary-looking thing: sort of like a cross between a tyre pressure gauge and a blowtorch. The first few inches were painless – the local anasthetic had made me completely numb right up to and including the external sphincter, which is at the base of the penis. However, what I can only assume was the second sphincter complained of the discomfort, and it stung pretty sharply any time the doctor would twist the cystoscope to change the angle of the picture.
Seeing the inside of your own body is an amazing experience. I mean: it’s not amazing enough to even be worth the experience of a cystoscopy, never mind the illness that in my case preceeded it… but it’s still pretty cool. The ultrasounds were interesting, but there’s nothing quite so immersive as seeing a picture of the inside of your own bladder, gritting your teeth while the doctor points to an indentation and explains that it’s the opening to the ureter that connects to your own left kidney!
Unfortunately I neglected to take my phone into the operating room, having put it into a locker when I changed into a gown, and so I wasn’t able to (as I’d hoped) take photos of the inside of my own bladder. So you’ll have to make do with this video I found, which approximates the experience pretty well. The good news is that there’s probably nothing wrong with me, now that the infection from earlier this year has passed: nothing to suggest that there’s any deeper underlying issue that caused me to get sick, anyway!
The bad news is that while the procedure itself was shorter and more-bearable than I’d expected, the recovery’s been a real drag. A week later, it still hurts a lot to urinate (although I’ve stopped yelping out loud when I do so) and my crotch is still too sore for me to be able to cycle. I’ve also discovered that an errection can be painful enough to wake me up, which is definitely not the most-pleasant way I’ve been roused by a penis. But it’s getting better, day by day, and at least I know for sure that I’m more-or-less “right” in the renal system, now.
As I mentioned last week, I’ve been ill. For those who wanted the grisly details, well: here you go.
Warning: this blog post contains frank subjective descriptions of the symptoms of slightly-icky medical conditions including photographs. It’s probably safe for all audiences, but you might not want to be drinking anything while you read it.
The trouble began, I suppose, about a month and a half ago, when a contracted what seemed to be a minor urinary tract infection. If you’re a woman then, statistically-speaking, I probably don’t need to tell you what that is, but for the benefit of the men: it’s what happens when bacteria (or, sometimes, a fungus or virus) infects the renal system: the kidneys, bladder, ureters, and especially the urethra. It’s not pleasant: it gives you the feeling of needing to pee the whole time, makes it harder to pee, and – when you do – it feels a little bit like you’re piss is made of lava.
Despite it not being common for men (more on that later), I’ve had mild UTIs on a couple of occasions in my life, and I’d always found that ensuring that I got plenty of water and a full RDA of vitamin C was more than enough to make it clear up all by itself within a couple of days. So that’s what I started doing. But then things took a turn for the worse: I started getting a stabbing pain in my left kidney. Recognising this as being pyelonephritis, I went to the doctor who prescribed me a course of the antibiotic ciprofloxacin. Within a couple of days I was feeling right as rain (of course I continued to finish the course of drugs, although I was interested to see that that advice is starting to become controversial).
Naturally I was a little disappointed when, the week before last, I started getting UTI-like pain again, followed very swiftly this time by pain in my bladder that constantly felt a little like I was recovering from being punched. Back to the doctor I went, where (after the usual tests to work out what the most-likely best-antibiotic to use was) I was prescribed a course of nitrofurantoin. I’d never had this particular drug before, and it wasn’t initially clear which of the escalating ill-effects I was experiencing were symptoms of the infection and which were side-effects of the medication: it started with joint pain, then nausea, then diarrhoea, then a full-on fever. It was at the point that I was fully-clothed in bed, running a temperature and soaked in sweat but still feeling cold and shivering that Ruth called 111, who told her to take me to A&E.
(Which, like her care for me in general, she did fabulously well, except for a little bit where she sort-of ran me over in the car park of the hospital: thankfully some friendly paramedics were standing around and were able to drag me into the building. Anyway, I don’t have much memory of that bit and I certainly don’t have any amusing photos, so I’ll skip over it.)
A few tests later, the medical staff seemed confident that what I was experiencing was not an allergic reaction to the antibiotic (however, I see that they still made a note of it as a risk on my notes!) but was a progression of the infection, which seemed to have crossed over from the tissues of my renal system and into my bloodstream and was now generally causing havoc by attacking the rest of my body. They hooked me up to a drip of an intravenous antibiotic and kept me stocked with painkillers, then sent me up to the urology ward and set me up with a “bed” (urology mostly deals with outpatients, and so my ‘bed’ was actually a trolley, but they wanted to keep me close to the urologists in case of any complications).
A consultant switched me to a week’s course of yet-another different antibiotic – co-amoxiclav – and recommended keeping me in for another night. Now, I think that co-amoxiclav is a really interesting drug, so I’m going to be a bit of a nerd and tell you about that for a bit (I promise we’ll get back to my health in a moment: if you don’t want the science bit, just scroll past the diagrams to the next photo).
Co-amoxiclav is a mixture of two drugs. The first is the antibiotic amoxicillin. Amoxicillin belongs to a class of antibiotics (which includes penicillin) called β-lactams, which is the most-commonly used family of antibiotics. These antibiotics contain a four-point lactam ‘ring’ (highlighted in blue above), and the way that they work is that this part of the molecule bonds with a particular protein common to all gram-positive bacteria. Normally this protein is responsible for producing peptidoglycan, which is an essential ingredient in the cell walls of these kinds of bacteria, but when it gets locked to a β-lactam ring it stops working. As a result, when the bacterium reproduces the new child doesn’t have a proper cell wall, and can’t survive long in even the least-hostile environments.
Of course, we’re in a medical arms race right now because some of the bacteria which we’re targetting with antibiotics are becoming resistant. And here’s one what that they’re doing so: some of these bacteria have evolved to produce beta-lactamase, also bonds with beta-lactam rings, adding an OH to them and making them useless. Bummer, eh?
The second drug in co-amoxiclav, then, is clavulanic acid, which was discovered in the 1970s and started being added to drugs in the 1980s. Despite having a β-lactam ring (as you’ll see in blue above), clavulanic acid by itself it isn’t an effective antibiotic (for reasons I can’t quite get my head around – anyone want to help me?). But what it’s great at is bonding that lactam ring to beta-lactamase, thereby deactivating the bacterial counter-offensive and allowing the amoxicillin to carry on working, combating resistance.
So what you’ve got in co-amoxiclav is a an antibiotic and a chemical that counteracts the effects of a chemical that deactivates that antibiotic. Wow! It’s things like this that really make me wish I had a brain for biology!
I was eventually discharged from hospital and released to go home for lots of bed rest and water, along with a further week’s course of co-amoxiclav. Unfortunately it turns out that I’m one of the unlucky folks for whom amoxicillin makes me dizzy, so I spent most of that week lying down in-between wobbly vertigo-filled trips to and from the bathroom. But it worked! Within a few days I was feeling much better and by the end of last week I was able to work from home (and actually feel like I was useful again!).
Free of symptoms and off the drugs, I returned to work properly on Monday morning and everything seemed fine. Until, late in the morning, I went to the bathroom and started pissing blood.
Now apparently blood in your urine, while horrifying when it happens to you unexpectedly, isn’t actually a sign of a medical emergency. I was starting to get bladder pain again, quite intensely, so I excused myself from work and called the urology ward, who decided that I wasn’t in bad enough a condition to go and see them but sent me straight to my GP, who gave me another fortnight’s worth of co-amoxiclav. They’re monitoring my progress with urine and blood samples and if by Friday it’s not having an impact, they’re going to want to send me back to hospital (hopefully only as an outpatient) and pump me full of the intravenous stuff again. So… fingers crossed for a good result out of these drugs.
I was hoping that by this point I’d be writing this blog post and telling you all about how I’d fought the bladder monster and won. But it looks like I won’t be able to claim that victory for another week or two, yet. All I know is that I searched for “bladder monster” and found this. Yeah: that feels about right.
A week ago, Ruth pushed a baby out of her body, completely upstaging my birthday and, incidentally, throwing all of our lives pretty much into chaos. Having gotten to the point at which she’d resigned herself to “being pregnant forever“, Ruth would have certainly been glad to have that stage over and done with, were it not for a long and painful labour followed by a torturous and exhausting birth.
There’s a lot that can be said about the labour: a 38-hour crescendo of Ruth gradually and repeatedly finding levels of pain and tiredness that each seemed impossible, until she reached them. But Ruth has suggested that she might like to write a little about it herself, so I shan’t steal her limelight. What I can say is that I didn’t – and I don’t think that JTA, either – appreciate quite how emotionally draining the experience would be for the two of us, as well. There was a strange sensation for me about twelve hours in: a sensation perhaps most-comprehensible by our friends who’ve done emotional support work. That was: after watching somebody I love so much suffer so greatly for so long, I felt as if I’d somehow begun to exhaust whatever part of my brain feels empathy. As if the experience of supporting Ruth had served to drain me in a way I’d never fully experienced before, like when you discover a muscle you didn’t know you had when it aches after an unusual new exercise.
Of course, after the ordeal we got to take home a little bundle of joy, who continues – despite now having a perfectly fabulous name of her own – to be referred to as “tiny”, even though her birth weight of 8lbs 12oz (that’s about 4kg, for those who – like me – prefer to think in metric) doesn’t really make that a very fitting nickname! Nor the amount of damage she did to Ruth on the way out, which also might be ill-described as “tiny”! She’s also often referred to as “the poopmachine”, for reasons that ought not need spelling out.
My employer was kind enough to give me paternity leave, even though I’m not the biological father (JTA is; and he’s very-much still in the picture!). I’d looked at my contract and discovered that the wording seemed to imply that I was eligible, stating that I’d be permitted to take paternity leave if I was about to become a father, or if my partner was about to give birth, the latter of which seemed perfectly clear. To be certain, I’d wandered along to Personnel and explained our living arrangement, and they just had looks on their faces that said “we’re not touching that with a barge pole; let’s just err on the side of giving him leave!” As a result, we’ve had all hands on deck to help out with the multitudinous tasks that have suddenly been added to our lives, which has been incredibly useful, especially given that Ruth has been spending several days mostly lying-down, as she’s been recovering from injuries sustained during the delivery.
Despite everything, we and the rest of the Three Rings team still managed to push the latest version into testing on schedule, though fitting in time for bug-fixing is even harder than it would be were we at our “day jobs” during the daytimes! It’s not that our little poopmachine takes up all of our time, though she does seem to take a lot of it, it’s simply that we’re all so tired! For the last few nights she’s been fussy about sleeping, and we’ve all lost a lot of rest time over keeping her fed, clean, and feeling loved.
For all my complaining, though, what we’ve got here is an adorable and mostly well-behaved little bundle of joy. And when she’s not covered in poop, shouting for attention, or spitting milk all over you, she’s a little angel. And I’m sure you’ll all be sick of hearing about her very soon.
This is the first in a series of four blog posts which ought to have been published during January 2013, but ran late because I didn’t want to publish any of them before the first one.
2012 was one of the hardest years of my life.
It was a year of unceasing disasters and difficulties: every time some tragedy had befallen me, my friends, or family, some additional calamity was lined-up to follow in its wake. In an environment like this, even the not-quite-so-sad things – like the death of Puddles, our family dog, in May – were magnified, and the ongoing challenges of the year – like the neverending difficulties with my dad’s estate – became overwhelming.
In the week of his death, my sister Becky was suffering from an awful toothache which was stopping her from eating, sleeping, or generally functioning at all (I tried to help her out by offering some oil of cloves (which functions as a dental contact anesthetic), but she must have misunderstood my instruction about applying it to the tooth without swallowing it, because she spent most of that evening throwing up (seriously: don’t ever swallow clove oil).
Little did she know, worse was yet to come: when she finally went to the dentist, he botched her operation, leaving her with a jaw infection. The infection spread, causing septicæmia of her face and neck and requiring that she was hospitalised. On the day of our dad’s funeral, she needed to insist that the “stop gap” surgery that she was given was done under local, rather than general, anasthetic, so that she could make it – albeit in a wheelchair and unable to talk – to the funeral.
Five weeks later, my dad finally reached the North Pole, his ashes carried by another member of his team. At about the same time, Ruth‘s grandmother passed away, swamping the already-emotional Earthlings with yet another sad period. That same month, my friend S******suffered a serious injury, a traumatic and distressing experience in the middle of a long and difficult period of her life, and an event which caused significant ripples in the lives of her circle of friends.
Shortly afterwards, Paul moved out from Earth, in a situation that was anticipated (we’d said when we first moved in together that it would be only for a couple of years, while we all found our feet in Oxford and decided on what we’d be doing next, as far as our living situations were concerned), but still felt occasionally hostile: when Paul left town six months later, his last blog post stated that Oxford could “get lost”, and that he’d “hated hated 90% of the time” he’d lived here. Despite reassurances to the contrary, it was sometimes hard – especially in such a difficult year – to think that this message wasn’t directed at Oxford so much as at his friends there.
As the summer came to an end, my workload on my various courses increased dramatically, stretching into my so-called “free time”: this, coupled with delays resulting from all of the illness, injury, and death that had happened already, threw back the release date of Milestone: Jethrik, the latest update to Three Rings. Coupled with the stress of the 10th Birthday Party Conference – which thankfully JTA handled most of – even the rare periods during which nobody was ill or dying were filled with sleepless nights and anxiety. And of course as soon as all of the preparation was out of the way and the conference was done, there were still plenty of long days ahead, catching up on everything that had been temporarily put on the back burner.
When I was first appointed executor of my dad’s estate, I said to myself that I could have the whole thing wrapped-up and resolved within six months… eight on the outside. But as things dragged on – it took almost six months until the investigation was finished and the coroner’s report filed, so we could get a death certificate, for example – they just got more and more bogged-down. Problems with my dad’s will made it harder than expected to get started (for example, I’m the executor and a beneficiary of the will, yet nowhere on it am I directly mentioned by name, address, or relationship… which means that I’ve had to prove that I am the person mentioned in the will every single time I present it, and that’s not always easy!), and further administrative hiccups have slowed down the process every step of the way.
You know what would have made the whole thing easier? A bacon sandwich. And black pudding for breakfast. And a nice big bit of freshly-battered cod. And some roast chicken. I found that 2012 was a harder year than 2011 in which to be a vegetarian. I guess that a nice steak would have taken the edge off: a little bit of a luxury, and some escapism. Instead, I probably drank a lot more than I ought to have. Perhaps we should encourage recovering alcoholic, when things are tough, to hit the sausage instead of the bottle.
Becky’s health problems weren’t done for the year, after she started getting incredibly intense and painful headaches. At first, I was worried that she was lined-up for a similar diagnosis to mine, of the other year (luckily, I’ve been symptom-free for a year and a quarter now, although medical science is at a loss to explain why), but as I heard more about her symptoms, I became convinced that this wasn’t the case. In any case, she found herself back in the operating room, for the second serious bit of surgery of the year (the operation was a success, thankfully).
I had my own surgery, of course, when I had a vasectomy; something I’d been planning for some time. That actually went quite well, at least as far as can be ascertained at this point (part three of that series of posts will be coming soon), but it allows me to segue into the topic of reproduction…
Because while I’d been waiting to get snipped, Ruth and JTA had managed to conceive. We found this out right as we were running around sorting out the Three Rings Conference, and Ruth took to calling the fœtus “Jethrik”, after the Three Rings milestone. I was even more delighted still when I heard that the expected birth date would be 24th July: Samaritans‘ Annual Awareness Day (“24/7”).
As potential prospective parents, they did everything right. Ruth stuck strictly to a perfectly balanced diet for her stage of pregnancy; they told only a minimum of people, because – as everybody knows – the first trimester’s the riskiest period. I remember when Ruth told her grandfather (who had become very unwell towards the end of 2012 and died early this year: another sad family tragedy) about the pregnancy, that it was only after careful consideration – balancing how nice it would be for him to know that the next generation of his family was on the way before his death – that she went ahead and did so. And as the end of the first trimester, and the end of the year, approached, I genuinely believed that the string of bad luck that had been 2012 was over.
But it wasn’t to be. Just as soon as we were looking forward to New Year, and planning to not so much “see in 2013” as to “kick out 2012”, Ruth had a little bleeding. Swiftly followed by abdominal cramps. She spent most of New Year’s Eve at the hospital, where they’d determined that she’d suffered a miscarriage, probably a few weeks earlier.
Ruth’s written about it. JTA’s written about it, too. And I’d recommend they read their account rather than mine: they’ve both written more, and better, about the subject than I could. But I shan’t pretend that it wasn’t hard: in truth, it was heartbreaking. At the times that I could persuade myself that my grief was “acceptable” (and that I shouldn’t be, say, looking after Ruth), I cried a lot. For me, “Jethrik” represented a happy ending to a miserable year: some good news at last for the people I was closest to. Perhaps, then, I attached too much importance to it, but it seemed inconceivable to me – no pun intended – that for all of the effort they’d put in, that things wouldn’t just go perfectly. For me, it was all connected: Ruth wasn’t pregnant by me, but I still found myself wishing that my dad could have lived to have seen it, and when the pregnancy went wrong, it made me realise how much I’d been pinning on it.
I don’t have a positive pick-me-up line to put here. But it feels like I should.
And so there we were, at the tail of 2012: the year that began awfully, ended awfully, and was pretty awful in the middle. I can’t say there weren’t good bits, but they were somewhat drowned out by all of the shit that happened. Fuck off, 2012.
Here’s to 2013.
Edit, 16th March 2013: By Becky’s request, removed an unflattering photo of her and some of the ickier details of her health problems this year.
Edit, 11th July 2016: At her request, my friend S******‘s personal details have been obfuscated in this post so that they are no longer readily available to search engines.
Edit, 26th September 2016: At her request, my friend S******‘s photo was removed from this post, too.
[spb_message color=”alert-info” width=”1/1″ el_position=”first last”]This is the second part of a three-part blog post about my vasectomy. Did you read the first part, yet?[/spb_message]
My vasectomy was scheduled for Tuesday afternoon, so I left work early in order to cycle up to the hospital: my plan was to cycle up there, and then have Ruth ride my bike back while JTA drove me home. For a moment, though, I panicked the clinic receptionist when she saw me arrive carrying a cycle helmet and pannier bag: she assumed that I must be intending to cycle home after the operation!
It took me long enough to find the building, cycling around the hospital in the dark, and a little longer still to reassure myself that this underlit old building could actually be a place where surgery took place.
Despite my GP’s suggestion to the contrary, the staff didn’t feel the need to take me though their counselling process, despite me ticking some (how many depends primarily upon how you perceive our unusual relationship structure) of the “we would prefer to counsel additionally” boxes on their list of criteria. I’d requested that Ruth arrive at about the beginning of the process specifically so that she could “back me up” if needed (apparently, surgeons will sometimes like to speak to the partner of a man requesting a vasectomy), but nobody even asked. I just had to sign another couple of consent forms to confirm that I really did understand what I was doing, and then I was ready to go!
I’d shaved my balls a few days earlier, at the request of the clinic (and also at Matt‘s suggestion, who pointed out that “if I don’t, they’ll do it for me, and I doubt they’ll be as gentle!” – although it must be pointed out that as they were already planning to take a blade to my junk, I might not have so much to worry about), which had turned out to be a challenge in itself. I’ve since looked online and found lots of great diagrams showing you which parts you need to shave, but the picture I’d been given might as well have been a road map of Florence, because no matter which way up I turned it, it didn’t look anything like my genitals. In the end, I just shaved all over the damn place, just to be sure. Still not an easy feat, though, because the wrinkled skin makes for challenging shaving: the best technique I found was to “stretch” my scrotum out with one hand while I shaved it with the other – a tricky (and scary) maneuver.
After sitting in the waiting room for a while, I was ushered through some forms and a couple more questions of “are you sure?”, and then herded into a curtained cubicle to change into a surgical gown (over the top of which I wore my usual dressing gown). The floor was cold, and I’d forgotten to bring my slippers, so I kept my socks on throughout. I sat in a separate waiting area from the first, and attempted to make small talk with the other gents waiting there. Some had just come out of surgery, and some were still waiting to go in, and the former would gently tease the latter with jokes about the operation. It’s a man thing, I guess: I can’t imagine that women would be so likely to engage in such behaviour (ignoring, for a moment, the nature of the operation).
There are several different approaches to vasectomy, and my surgeon was kind enough to tolerate my persistent questions as I asked about the specifics of each part of the operation. He’d said – after I asked – that one of the things he liked about doing vasectomies was that (unlike most of the other surgeries he performs) his patients are awake and he can have a conversation while he worked, although I guess he hadn’t anticipated that there’d ever be anybody quite so interested as I was.
[spb_message color=”alert-warning” width=”1/1″ el_position=”first last”]Warning: The remainder of this blog post describes a surgical procedure, which some people might find squicky. For the protection of those who are of a weak stomach, some photos have been hidden behind hyperlinks: click at your own risk. (though honestly, I don’t think they’re that bad)[/spb_message]
With my scrotum pulled up through a hole in a paper sheet, the surgeon began by checking that “everything was where it was supposed to be”: he checked that he could find each vas (if you’ve not done this: borrow the genitals of the nearest man or use your own, squeeze moderately tightly between two fingers the skin above a testicle, and move around a bit until you find a hard tube: that’s almost certainly a vas). Apparently surgeons are supposed to take care to ensure that they’ve found two distinct tubes, so they don’t for example sever the same one twice.
Next, he gave the whole thing a generous soaking in iodine. This turned out to be fucking freezing. The room was cold enough already, so I asked him to close the window while my genitals quietly shivered above the sheet.
Next up came the injection. The local anesthetic used for this kind of operation is pretty much identical to the kind you get at the dentist: the only difference is that if your dentist injected you here, that’d be considered a miss. While pinching the left vas between his fingertips, the surgeon squirted a stack of lidocaine into the cavity around it. And fuck me, that hurt like being kicked in the balls. Seriously: that stung quite a bit for a few minutes, until the anasthesia kicked in and instead the whole area felt “tingly”, in that way that your lips do after dental surgery.
Pinching the vas (still beneath the skin at this point) in a specially-shaped clamp, the surgeon made a puncture wound “around” it with a sharp-nosed pair of forceps, and pulled the vas clean through the hole. This was a strange sensation – I couldn’t feel any pain, but I was aware of the movement – a “tugging” against my insides.
A quick snip removed a couple of centimetres from the middle of it (I gather that removing a section, rather than just cutting, helps to reduce the – already slim – risk that the two loose ends will grow back together again) and cauterised the ends. The cauterisation was a curious experience, because while I wasn’t aware of any sensation of heat, I could hear a sizzling sound and smell my own flesh burning. It turns out that my flaming testicles smell a little like bacon. Or, if you’d like to look at it another way (and I can almost guarantee that you don’t): bacon smells a little bit like my testicles, being singed.
Next up came Righty’s turn, but he wasn’t playing ball (pun intended). The same steps got as far as clamping and puncturing before I suddenly felt a sharp pain, getting rapidly worse. “Ow… ow… owowowowowow!” I said, possibly with a little more swearing, as the surgeon blasted another few mils of anesthetic into my bollocks. And then a little more. And damnit: it turns out that no matter how much you’ve had injected into you already, injecting anesthetics into your tackle always feels like a kick in the nuts for a few minutes. Grr.
The removed sections of my vas, on a tray (actually mine)
You can see the “kink” in each, where it was pulled out by the clamp. Also visible is the clamp itself – a cruel-looking piece of equipment, I’m sure you’ll agree! – and the discarded caps from some of the syringes that were used.
The benefit of this approach, the “no-scalpel vasectomy”, is that the puncture wounds are sufficiently small as to not need stitches. At the end of the surgery, the surgeon just stuck a plaster onto the hole and called it done. I felt a bit light-headed and wobbly-legged, so I sat on the operating table for a few minutes to compose myself before returning to the nurses’ desk for my debrief. I only spent about 20 minutes, in total, with the surgeon: I’ve spent longer (and suffered more!) at the dentist.
By the evening, the anesthetic had worn off and I was in quite a bit of pain, again: perhaps worse than that “kick in the balls” moment when the anesthetic was first injected, but without the relief that the anesthetic brought! I took some paracetamol and – later – some codeine, and slept with a folded-over pillow wedged between my knees, after I discovered how easy it was to accidentally squish my sore sack whenever I shifted my position.
The day after was somewhat better. I was walking like John Wayne, but this didn’t matter because – as the nurse had suggested – I spent most of the day lying down “with my feet as high as my bottom”. She’d taken the time to explain that she can’t put a bandage nor a sling on my genitals (and that I probably wouldn’t want her to, if she could), so the correct alternative is to wear tight-fitting underwear (in place of a bandage) and keep my legs elevated (as a sling). Having seen pictures of people with painful-looking bruises and swelling as a result of not following this advice, I did so as best as I could.
Today’s the day after that: I’m still in a little pain – mostly in Righty, again, which shall henceforth be called “the troublesome testicle” – but it’s not so bad except when I forget and do something like bend over or squat or, I discovered, let my balls “hang” under their own weight, at all. But altogether, it’s been not-too-bad at all.
Or, as I put on my feedback form at the clinic: “A+++. Recommended. Would vasectomy again.”
(thanks due to Ruth, JTA, Matt, Liz, Simon, Michelle, and my mum for support, suggestions, and/or fetching things to my bed for me while I’ve been waddling around looking like John Wayne, these past two days)
What’s no joke, though, is the human population explosion. There’re just too damn many of us, as I explained last year. That’s the primary reason behind my decision, held for pretty-much the entirety of my adult life, to choose not to breed.
I’m fully aware that the conscious decision to not-breed by a single individual – especially in the developed world – makes virtually no difference to the global fate of humanity. I’m under no illusion that my efforts as a vegetarian are saving the world either. But just like the voter who casts a ballot for their party – even though they know it won’t make a difference to the outcome of the election – I understand that doing the right thing doesn’t necessarily have to have a directly quantifiable benefit.
That’s why I’m finally taking the next obvious step. Next month, after literally years of talking about it, I’m finally going to put my genitals where my mouth is (hmm… maybe that wasn’t the best choice of words)! Next week, I’m getting a vasectomy.
I first asked a doctor about the possibility of vasectomy about a decade ago. He remarked upon my age, and said – almost jokingly – “Come back in ten years if you still feel the same way!” I almost wish that I still had the same GP now, so that I could do exactly that. Instead, I spoke about a year ago to my (old) GP here in Oxford, who misled me into thinking that I would not be able to get the surgery on the NHS, and would have to have it done privately. Finally, a second doctor agreed to sign off their part of the consent form, and I was good to go. The secret, it seems, is persistence.
I’m sure that this is a decision that won’t be without it’s controversies. And believe me: over the course of the most-of-my-life-so-far that I’ve hinted at or talked about doing this, I’m pretty sure I’ve heard all of the arguments. Still: I feel like I ought to pick up on some of the things I’ve heard most-often –
What if you change your mind?
Even despite medical advances in recent decades in vasectomy reversal, vasectomy should still be considered a “one way trip”. Especially when I was younger, people seemed concerned that I would someday change my mind, and then regret my decision not to spawn children.
I suppose that it’s conceivable – unlike my otherwise potential offspring – but it’s quite a stretch, to believe that I might someday regret not having children (at least not biologically: I have no problem with adopting, co-parenting, fostering, or any number of other options for being involved in the upbringing of kids). I honestly can’t see how that’d come about. But even if we do take that far-fetched idea: isn’t it equally possible that somebody might ultimately regret having children. We take risks in our lives with any choice that we make – maybe I’ll someday regret not having taken my degree in Law or Chemistry or Rural Studies. Well then: c’est la vie.
Do you just not like children?
Children are great, and I’d love to get the chance to be involved in raising some. However, I don’t define myself by that wish: if I never have the opportunity to look after any kids, ever, then that wouldn’t be the worst thing in the world: I’d just spend my years writing code in a house full of cats. I have no doubt that raising children is great (for many people), but just like there are plenty of people for whom it’s not great, there are also plenty of people – like me – who could be happy either way. No biggie!
There are those who have said that this laid-back “take it or leave it” approach, especially when coupled with the more-recent act of rendering myself infertile, will make me less attractive to women. Leaving aside the implicit sexism in that claim, wouldn’t a fair retort be to point out that a woman who is looking for monogamous breeding probably isn’t my “type” to begin with!
But you should be breeding?
This argument’s usually based on the idea that I’m somehow genetically superior and that my children wouldn’t be such a strain on the world as somebody else’s, or that mine would have a significantly better-than-average chance of curing cancer, solving world hunger, or something.
And let’s face it, any child of mine would be just as likely to be the one to build a really big bomb. Or create a super-virus. Or just engineer the collapse the world’s economies into a prehistoric barter economy in a technophobic future anarchy. Attaboy.
In any case, I’m pretty sure that my personal contribution to the betterment of the world ought not to be a genetic one. I’d like to make a difference for the people who are around right now, rather than hypothetical people of the future, and I’d far rather leave ideas in my wake than a handful of genes. I’m sure that’s not the case for everybody, but then – it doesn’t have to be.
Or are there some arguments that I’ve missed? If you’re among the folks who feel really strongly about this, then you’ve got about seven days to make them, and then it’s off to the clinic for me! Just remember: what’s right for me isn’t necessarily what’s right for you, and vice-versa. Just because I use Emacs doesn’t mean that some other, inferior text editor might not be the right choice for you.
I wonder what my surgeon might say to the possibility of me live-tweeting the process? Would anybody be interested? (I promise not to include any photos.)
(with thanks to Nina Paley for permission to use the comics)
This picture’s been floating around the Internet lately. I’m sure that the guy in the picture thinks he’s original, but we totally beat him to it. Back in about 2003.
The difference is, though, that when some friends and I were messing around with about a thousand applicator tampons that had reached their use-by date, we went one step further. We sellotaped laser pointers to the barrels of our guns, and had a laser-guided tampon battle in the car park.
It turns out that laser sights don’t actually improve the accuracy of tampon blowguns. As a weapon, they’re worse than useless, of course – tampons have actually been used to save people from blood loss after a bullet wound. But still, it made for a more fun – if sillier – afternoon than would have been had by just throwing the damn things away, even if we did then have to spend quite a lot of time picking them all up and binning them anyway.
Recently, I’ve been diagnosed with cluster headaches. I could tell you more about them, but I’d rather just point you at the Wikipedia article and say “that’s pretty much spot on.”
So that’s pretty shit.
It’s been several months now – long enough that, to begin with, I suspected that these new, severe headaches were something to do with the concussion I suffered while moving house. I’m still not convinced that they’re not: it just seems a little too much like a coincidence that that’d happen just weeks before they started.
Since then, they’ve come and gone. Attacks will come on every couple of days – usually at about 3am, but sometimes in the afternoon – for about two weeks, and then will be gone for several weeks. And then they come back again.
The pain is… incredible. I can’t even begin to describe it nor compare it to anything else. Painkillers don’t seem to touch it at all. The only success I’ve had with painkillers has been when I’ve taken so much codeine that I’ve had an “opium high”. The pain doesn’t go away, but at least then I don’t care so much. Then within a couple of (long, long) hours, it’s gone, leaving me drained and exhausted. Sometimes it leaves me with a headache – just a “normal” one, the kind that you can wince and ignore, or treat with asprin – for about a day afterwards, but usually it just disappears as quickly as it came on.
I’ve been working my way through a variety of medications, with limited success. Basically, the doctors are guessing. In sheer desperation, I’ve even been caught using mild-to-moderately ridiculous alternative treatment, like chiropractic. It didn’t work – it just left me with a new variety of back pain: temporary, I hope – but I think it goes some way to expressing how crippling it is when I of all people will go to a “spine wizard”. Needless to say, I’m still a long way from desparate enough to try the reallystupidalternativemedicines: it’s still got to at least sound like it might work before you’ll get me to try it – after all, it’s not like any of these therapies are without risks.
There’s next to no build-up, and no warning, and no relief: they just start and go away their own accord. That’s a terrifying feeling of powerlessness. It’s genuinely scary, going to bed during one of their episodic periods, and not knowing if you’re going to wake up in agony a few hours later.
We’re getting somewhere, though, hopefully. I’ve been assigned to a specialist (to whom I’m sure I’ll be as much a research subject as a patient: I suppose it’s pretty ideal – if you have a rare, barely-understood disease and you’re at the point of being willing to try anything, you probably make a great research subject), and in the meantime there are plenty more medications left to “try”. And I’ve been reading some of the thoughts of other sufferers via an online support group, some of whom have shared some of their relief/coping strategies (some of which I’ve tried already; others of which I’ll try in the future). So there’s still plenty of opportunity for a “fix”.
I didn’t blog about this before now because I was hoping to get to a point where I’d be looking back on it and laughing, first. I quite liked the idea of putting up a blog post – perhaps with some photos of my MRI scans, or something – and saying “Hey; look what happened to me! It’s medication-controlled, now, and the only side-effect is that I can shoot frickin’ laser beams out of my eyes! Muhahahaha!” But I guess that point might still be a way away, and I didn’t want to keep you all in the dark.
Anyway: there’s that, then. If you were hoping for a clean, concise blog post with some closure at the end, you’ll be left hanging. But hey: if I have to suffer, I might as well spread a little bit of suffering to you, too.