Death and all his friends

February 16th, 2005

I’d got the call from my sister. “You’d better come”. My mum had been fighting terminal cancer since the previous August , and over the new year we were waiting for the other shoe to drop. She’d become increasingly frail and had lost a shocking amount of weight. A couple of days earlier – Valentine’s Day, just to twist the knife a little – she’d had a precipitous decline. I didn’t fully understand the biological mechanism, but her failing liver being slowly consumed by cancer (which would go on to kill her) meant she was slowly poisoning herself, most evident of which was the loss of mental faculties.

I had understood some of this when I arrived in Southwark, but not the extent of it.leaving the underground at London Bridge and walking to my parent’s flat, I did not know what to expect.

My sister opened the door. As I walked into the vestibule I caught sight of my mum moving upright in bed, apparently trying to get up.

Is that my boy?

“Is that my boy?” It would be the last coherent thing she said to me, and through the cell her body and mind had become she had somehow managed to put on appearances for my benefit. I sat next to her on the bed to cuddle up to her tiny, emaciated frame, and realised something was very, very wrong.

want to trip inside your head
Spend the day there
To hear the things you haven’t said
And see what you might see
I want to hear you when you call
Do you feel anything at all?
I want to see your thoughts take shape and walk right out

There was no life in her eyes. I remember looking deeply into them to see If I could see any remnant of my mum in there (that U2 lyric would be swimming around my head for days. I still cannot listen to that song.) I was visited by the thought that his person – my mother – was no longer there; that all she was and ever had been had been taken from me, leaving just an automaton, an empty shell. It sounds dramatic, but I had about 15 minutes alone with her and the memory is still devastating to me. The slow destruction of a person is a terrifying thing to behold. In time I recognised this was worse than anything that followed. I wanted to scream, I was so upset, but I kept it all in, because i was trying to reach her.

She would hang on for another 9 days, before passing away with us all there around 6.30pm on February 25th, 2 days after her 62nd birthday. Fuck this fucking disease.

I swore at the time that if anything like this happened to me I would not let it go that far, that I would not want anyone to see me like that. I have no idea what that might have entailed. Maybe I would jump off Beachy Head, or go and walk into the sea somewhere, let the waves claim me. I was, of course, completely full of shit, because I would get to find out.

Who said God had no sense of humour?

Fate would have its way with me. I would get get the disease, not the same kind and mercifully not as severe. I may be half-blind, but in all likelihood it’s not going to kill me (if it ever looks like it could, remind me I wrote this. I will laugh, I promise)

it’s easy to retreat into solipsism and self-pity, and I have definitely had those moments (“why me?”) but you have to just keep going and be there. It’s a different story when you have a family; . You have to learn to eat some shit and smile, then eat some more. Every day is a small victory. I know that if the worst were to happen to me, my family would be there to the end, and they would deal with everything that followed, because when the time comes, people find it in themselves. Every three weeks I sit down and get 200mg of immunotherapy drugs. The people there always impress me. Some are very much in the trenches with their illness, but they have such incredible spirit. It’s not at all what you might imagine a chemo treatment centre to be.For obvious reaons, I’ve a bad association with hospitals – carbolic acid and death – and I’ve come to realise it’s not like that at all.

This helped me understand what happened with my mum that day, finding that last shred of strength and dignity to try and show me that she’s okay; that through all she was enduring she would stand tall for her son.

I recently started to dream about her pretty regularly. The illusion of dreams is that you don’t really question context – “What am I doing here? Why can I fly?” I never question that she shouldn’t be there – although I had those dreams in the past. It’s just normal, she’s alive and we’re doing mundane things. I don’t question it too deeply, but it’s a pretty nice thing for my brain to do.

MCT, 23/02/43 – 25/02/05

I hope for a lot of things. I hope my eyes recover, I hope to be completely clear of cancer, I hope my wife gets a break. Most of all, I hope it stops at me.

45 pt. 2

Eyes

By March my vision had continued to deteriorate to the extent I was becoming quite afraid. I made an emergency appointment to try and figure out what the hell was going on. I got a visit with an ophthalmologist that just happened to be a retinal specialist. She is French, had only been in the country a few months, as luck would have it, she was absolutely brilliant.

Generally speaking, nost of the senior female medical professionals seemed better listeners, and thus far I wasn’t convinced I was being heard. My wife describes this as a ‘specialist trap’, in other words if a doctor can’t diagnose a problem, they become indecisive and fail to advocate for the patient. You must see the right people. The right doctor at the right time makes all the difference. In the US system in particular, you must learn to stamp your feet. It’s very hard for me, as I am a classic British never-complain type, but when you’re really sick, that attitude can kill you.

This particular specialist took complete ownership of everything, and the more difficult the case got, the more interested she was.

I had some images taken of the eye, and she immediately identified inflammation of the nerve bundle behind the retina. This is generally known as posteriour uveitis, and it’s potentially very serious.

I had to undertake a lot of tests, includng tuberculosis and syphilis,(symptomatically similar) which amused me (yes it came back negative, you shits).

I ended up being prescribed an oral steroid (prednisone) in a shock dose, tapering off as time went on.

Steroids do odd things, it felt to me like I was highly caffeinated; I couldn’t sleep, put on a load of weight (yay!) but avoided going crazy -Apparently some people don’t respond well to them.

My vision stabilised, you wouldn’t call it good but at least it wasn’t getting worse. Uveitis is idiopathic in about half of the cases. In simple terms, it it not known what causes it. At this point it was purely hypothetical that my vision problems were linked to whatever was growing under my arm, immunology is complicated and requires highly specialised domain knowledge, there isn’t a magical test for it. The test is basically ruling out everything else.

Tumour won’t wait

The mass under my arm was no longer leaking, had fully re-accumulated, and was now starting to press on surrounding tissue, which caused pain. Around 1am on the 3rd of Aoril, I realised I could no longer sleep. Heat, painkillers and and ice-packs did nothing. I remember sitting on the bed in front of the wardrobe mirror thinking that I have to do something.

My wife had a continuing concern that it might burst, which could be life-threatening. My plan was to go to the ER, perhaps they could drain it, or at least get me some pain relief.

The emergency room reception wasn’t busy, a TV played one of house-hunting shows where a couple have an incredible budget. It was set in Fareham, just a few miles from my previous home, which made me laugh at least. I got triaged quickly. The feeling of the nurses – rarely hesitant to give an opinion – was that this thing needed to be out. No shit. A young doctor told me she couldn’t do anything invasive as if it was potentially malignant as that could be harmful. so, no drain. In the meantime she saw me wincing with pain and suggested an analgesic. I got a long lecture about opioids “You’ve seen the news, right?” And then they injected something with a long name into my IV

It felt a bit like the drop off the lift-hill on a rollercoaster, I actually held on to the sides of the bed, I felt a kick of nausea, thought I might throw up, then it passed. I was now, to use the medical term, as high as fuck.

The doctor got on the phone to the surgeon (I think it was 3am) and got it done – I would be operated on the next day. My bed was moved to a remote end of the ER and I entertained myself sending Beavis and Butthead gifs to my sister.

I don’t really know why, when you’re stoned everything is funny. It had to bag up my clothes and belongings and put on a gown.

.

Dark, dreamless sleep

I got visited by the anaesthetist, who explained that I would be asleep through it all, and a reflexologist, as the surgeon was concerned my nerves were getting damaged by the tumour, but this was luckily not the case.

My abiding memory of ‘serious hospital stuff’ is the flourescent lighting scrolling overhead as you are moved on a stretcher,that and the smell of alcohol swabs and the chirp of ringing telephones. The operating room actually resembles a hotel kitchen, lots of stainless steel, aluminium, and dark tiling. Only the huge overhead lights set it apart, and large pieces of equioment that go ‘beep’. I had to move laterally onto the OR bed and had my inflatable stockings switched on, which feel a bit like a python constricting around your shins. That’s all I remember

Waking up from a general anaesthetic is abrupt, it sounds like people are shouting.You wake up with a start, It’s such a deep sleep. I wasn’t aware of any pain, but my armpit felt like it was completely gone, which was weird but also a relief. My treat was a cup of crushed ice. I hadn’t eaten in about 17hrs.

I spent a night in the hospital in a very pleasant room, and stood up for the first time in hours. I had a drain fitted, which is a plastic line from the surgical wound terminating in a rubber bulb.

Wound and drain line

This fucking thing would be the bane of my existence for a week. A fwwnurse ran in and told me if I needed to urinate it had to be into a plastic flask about the capacity of a litre. I filled that fucker to the brim, handed it to her and said “enjoy”. She didn’t even smile- heard it all before, I expect.

The surgeon visited and instructed me to monitor the drain, as he did not want it in there any longer than necessary, as it’s an infection hazard. He also explained the surgery was a success apart from having to leave some tissue which had tied itself around a vein. This would cause almost 5months of discussion as nobody seemed to think anything should remain in there, given how fast the tumour developed, but that story will have to wait.

At home, I had to learn to live with the drain, which was a great annoyance as the slightest pull on the tube was sharply painful. I had to sleep on my back (which I never do) so it was a tough few nights. On the very day I had just got used to it, I made the appointment to have it taken out.

It would be many weeks, and several labs before the tumour’s classification was known. In the meantime my oncologist wanted to discuss options. At that time it was possibly some radiation therapy along with some chemo. Great.

Black May

I had so many appointments in May I lost count. I’d had my drain and stitches out, my oncologist informed me that the mass was classifed as a ‘metastatic melanoma of unknown primary’ in other words, skin cancer, but no skin lesion would ever be found. This supposedly true in 10% of cases. I had the feeling the onvologist was not that convinced, but genetic markers gave him treatment options. I would be put on immunotherapy, which had the reputation for miraculous results.

I would require immunotherapy every three weeks for a year. I watched an educational video about chemo, and I mostly learnt to be grateful I wasn’t having chemo. The treatment building is a squat, brutalist structure near the mall. It struck me that nearly all of the people there looked very worse for wear. I asked the nurse if they looked like me when they walked in, but I don’t think she saw the funny side. </p

To be continued

45

December 27th, 2018

On the morning of my 45th birthday, I stood before the bathroom mirror’s harsh, yellow light, looking at a lump where my armpit should be. I’d felt something under my arm in the shower, a bulge where the hollow of my armpit is, the ‘axilla’ as I would learn to refer to it. The lump was alien enough to be worrisome. When I lifted my arm up, the raised spot looked like half a tennis ball was stuck under the skin. It was soft to the touch, and at that moment, painless. Happy birthday, James.

I showed my wife, who immediately looked concerned, “That looks like a lymph node, is it hard? You should get it looked at”. I had no intention of doing anything that day, I think my exact words were “I am not going to the fucking doctor on my birthday.” I resolved – unwisely, in retrospect – to wait and see. Dr. Google said If it got any bigger, harder or didn’t go away, I should go and get it looked at. When? Who knows. This was really the stupefying cloud of denial and fear, leading to poor decisions

What the hell is wrong with my eyes?

Earlier, around Late September, It had become apparent something was abnormal with the vision from my right eye – the good one – in that a little patch of my visual field had a distinct blur, as if there was Vaseline smeared on it. This got bad enough that I was worried the retina was at risk of detaching (lottery-like odds of this happening to both eyes) but a trip to the eye doctor revealed absolutely nothing unusual, and It felt better – a good example of white-coat syndrome, as I would later realise. A bit like the way toothache stops in the dentist’s waiting room.

As Autumn receded and Winter started to take hold, I realised my vision was not improving, daily tasks like driving were becoming difficult – depending on the angle of the sun and cloud cover, It could be very difficult to see clearly. In January, I had a light bulb moment: Could these things – this lump and my sight – be related? I was starting to feel the first nips of panic, for such a condition could potentially be very serious. Did I have a big, dangerous cancer hiding somewhere? Was I already too late? It was strange, because i felt absolutely fine. The only physical symptoms I had were the lump and vision problems, which is fairly bad, I suppose. I hadn’t been ill for months, and I always got colds in Winter.

The end of the beginning

I couldn’t get a doctor’s appointment until March, and this was hardly a job for a walk-in centre, so I resolved to go to the emergency room. It was January 29th.

Medical staff are careful not to give anything away, but they don’t always hide their emotions that well. On lifting my arm up, it was clear from the ‘ohs’ and ‘whoas’ I should have got it examined earlier. I got a minor telling-off from a nurse to that effect, and the doctor, whom I swear was barely a day over 20 informed me I had to have a CT scan, the first of what would be many.

…soft tissue material likely represents a Rokitansky nodule
related to a mature teratoma. The lesion measures 10 cm
craniocaudally…

Jesus Christ, 10 fucking centimetres? Teratoma? Big relief, that’s just a harmless, big ‘ole fatty lump. I get a referral to a surgeon and am sent on my way, hugely relieved. I would need to have it removed, but that’s no big deal, right?

Not so fast..

My ‘surgical consultation’ was with a typically brash but professional general surgeon who promptly went on to scare the shit out of me. He told me that he did not want to operate until he had a biopsy, as he was concerned it was lymphoma. Lymphoma is not a word you want to hear, and I had already persuaded myself this was not serious. The Biopsy came round a couple of weeks later, and I reported back to the hospital to have it done. Essentially I had a local anaesthetic and then the physician’s assistant uses ultrasound to poke around with a huge needle to identify and capture some samples. The first thing that happened was I started leaking, so the fluid had to be removed. In totals 225cc of reddish/pink stuff was drained out; the swelling all but disappeared, like a deflated balloon. I left with a warning that there is a risk of infection, and to be watchful. That turned out to be an interesting bit of foreshadowing. Meanwhile, my arm felt normal for the first time in weeks. It wouldn’t last very long.

The biopsy results came back as inconclusive, by now this wasn’t surprising, and this pattern would repeat for some time with my eyes, too. Nobody seemed to have any idea what the hell was going on.

It would turn out that my case was ‘rare on top of rare’, to quote one doctor.

A frightful referral

The surgeon called me, and casually notified me he wanted me to see an oncologist. I knew full well what that meant. I was worried sick. The appointment would not be for two weeks, plenty of time to tie myself in knots. In the meantime I had undergone an MRI to try and get to the bottom of my eye problems, and that had a neutral result too. Whatever was going on, it was not in my brain, thank God.

Infection

The biopsy site got infected on the day I had to see the oncologist, of course. This doctor was a mild-mannered Indian chap, and he was not able to tell me much I didn’t already know, outside of the fact a gang of them had discussed my case at a ‘tumour board’, which sounds like the shittest party ever. They only knew that it wasn’t a teratoma, because those don’t grow this fast. I would need another scan and lots of blood work. The proposed scan would be a PET, and would be six weeks later. This wait was important to ‘allow things to settle’, inflammation from the biopsy could produce a false positive, but more on that later.

The infected site responded almost immediately to antibiotics, but would continue to leak. My wife, ever inventive, devised a dressing using my youngest son’s diapers (much to his annoyance – “you stealin’ my diapers!”) And I continued like this – changing it twice a day – right up until the lump was excised. It leaked a ferocious amount, my morning routine involved pulling off the dressing which would typically be a bloody pulp after soaking through the night. There was a distinct relationship between pain and the volume of the mass, as it filled with liquid, it got painful, so the leak was a blessing in disguise as it relieved the worst of the pressure.

PET time

A PET scan involves being injected with a radioactive tracer; essentially it measures metabolic ‘uptake’ of the solution. Cancerous cells absorb this solution at a significant rate. The bottom line is the radiologist gets a 3d image of the body, and can pick out hotspots of high uptake.

The scan was straightforward, it takes about 20 minutes after a 40 minute wait for the solution to be metabolised. I would have to wait to see my oncologist for the result.

Late, in the oncologist’s office the flat-panel monitor showed the images from the scan. Scrolling through the cross section with the mouse wheel, the Dr. indicated the mass under my arm lit up like a stadium in a sea of dark greys and browns. The high absorption rate was pretty clear; a child could read it.

FINDINGS:

…intense metabolic activity within the relatively large and

lobular malignant appearing mass of the right axilla. The mass

contacts and possibly invades the lateral margin of the right

pectoralis major and minor. Soft tissue infiltration extends from the

mass to the skin surface at the upper right breast with high

metabolic activity at the skin surface,,,

‘Malignant’.‘invasive’ These were words I expected but I had not wanted to read. I still had inflammation because the axillary mass was by now permanently agitated in a cycle of muscular stress, draining and re-accumulating. There was a chance this caused the high-uptake indication.

There’s a paradox when you are unwell and nobody knows what’s wrong with you. You want a diagnosis, no matter how bad, because there is then a way forward. When I had the MRI, I wanted something to be found, despite the fact that this could only be very bad news, and felt despondent when no abnormalities were found. By the time it looked increasingly obvious I had some sort of cancer, I was – in a small way – relieved. I knew what I was facing, what the fight would look like.

Oncology were still a little puzzled, because none of their blood work had shown the slightest trace of anything unusual. This would set the tone for the invesigation that followed. little about this would be straightforward.

The Doctor quite memorably summarised “We don’t know precisely what it is, but it should not be there, and it needs to come out, sooner rather than later.

It did not appear to have spread anywhere, which is a huge bit of luck. I just had to wait for surgery.

Around this time, the leak stopped, and the pain started to become significant. The mass was also harder, feeling more like a waffle of pulpy tissue than a hollow sack. My proposed surgery was three weeks in the future. I was not convinced the mass would wait that long, and I still wasn’t getting anywhere with my eyes.

At this point all I reallly knew was that i very likely had cancer, and was possibly going blind. I was otherwise perfectly healthy; 2019 was going to be great.

To be continued

Looking back

I’ve had a rough year, health wise. I’ll write about it at some point. Consequently I’ve had lots (too much?) of time to think, and as is human nature I’ve looked backwards a fair bit, so excuse the nostalgia.

I’m not sure what prompted it, but I got thinking about my college days. College in the English sense (further education, 16-18yrs) as opposed to university. My first run at university was abortive, so college took on particular meaning for me as it would become the closest I got to the 3yr university experience.

I’d been at a rural grammar school in East Yorkshire for 3 years. I absolutely despised it. It made me miserable, shattered my self-confidence, and I struggled academically. I had been in and out of schools my entire childhood due to frequent relocation around various parts of the world; I was already behind when I started secondary education and the truly shitty school environment only made things worse. My GCSE performance was predictably poor. I hated school, I didn’t want it, and it apparently didn’t want me – I was not invited to continue on to A-level study.

I moved to the city of York in summer 1990. I was to attend York Sixth Form College, but as my GCSE results were poor I had to complete a foundation year, which would mean I’d be there for three years in all, assuming I continued on to A-level; not everybody did, as there was a technical college (vocational) down the road that was also on the foundation year pipeline. Some people simply went straight into employment, with no continuing education.

The college was located on the southern edge of the city, next to the green belt. There was little beyond it but fields and the motorway. It had been operating as an FE college for 5 years, prior to which it had been a secondary school. It had around 900 students (the number surprised me. I would have guessed less than half that) and in hindsight with the benefit of years of FE/HE experience from the inside the college was small, utilitarian, and dated even by 1990 standards. And yet, it was more than the sum of its parts.

Front of the College, photographed 2005 by Neil Turner. Source

I had a lot of questions; and I was quite apprehensive. It was the first state institution I’d been to since primary school. I told myself I was worried I wouldn’t fit in, but the fear was deeper than that; would I even survive? It’s stupid and laughable now but having been in private educated for previous 8 years I picked up some completely stupid stereotypes about what to expect from state schooling. I considered it perfectly likely that on hearing my accent I’d probably get beaten up. I had an intake interview with the college principal and he seemed so kind and welcoming. Honestly, the fact he wasn’t a complete arsehole already put him ahead of much of my grammar school staff experience. It was a decent start. “See you in September!”.

I needn’t have worried about anything. My first year had some difficulties; I’d been relatively sheltered and I faced a period of shrugging a lot of that baggage off; I had to relearn who I was, loosen up a little bit, but the environment was simply amazing to me. You were treated like an adult; you could dress how you liked (within reason…) and were encouraged to be an individual. The teachers were fantastic, even though I didn’t quite recognise it at the time. The students came from everywhere, but predominantly secondary schools within York itself. A fair few of them knew one another, but generally making friends was pretty easy. The biggest eye opener was nobody gave a shit where I was from. I think I’d totally forgotten about my old school by the end of the first term. I felt like a different person. I grew my hair out, had a few illicit beers (sometimes during lunch!) and generally had a blast.

Academically I did better, but not much better. Just good enough. I was absolutely distracted by a new found social happiness and was for better or worse not worried about the future. I progressed onto A-levels, grew my hair even more, joined a band (We were shit. That wasn’t our name, but might as well have been) and just kept going. I had lost a few friends after foundation year. Some went onto apprenticeships or ‘The Tech’ down the road, but this wasn’t an impediment at college, largely due to the fundamental layout of the place.

Floor Plan. From Yorkstories blog

The building featured a large room named the ‘social area’. It was really the focal point of the block. It wasn’t huge, less than 100ft long and about half as wide, and was open plan, with moveable bench seating. They were beige and pink, as I remember. Before classes started in the morning and during lunch, it was absolutely rammed. Because of this, boundaries really broke down; it didn’t matter much what year you were in, or what you were studying, you could get to know people. There were certainly cliques, but everyone pretty much got along. It amused me how that room could change in character dependent on the phase of the timetable. During free periods it occasionally took on a monastic quality with just a handful of people in it. It wasn’t anywhere near large enough for the entire student cohort at one time, so people spilled out into the corridors and the canteen, but generally the social area or the immediate vicinity was where it was at.

Time continued its march and in June ’93 I completed my A-levels with fairly average results. A decade later after some epic fannying about, and in a different part of the country, I would end up working at an FE college. I never really made much of a connection before, but thinking about it, just being in that kind of environment felt right to me, and I’ve been working in education ever since.

York, March 2007

I’d been visiting my dad who had recently moved North again. We’d taken a trip into York on a rainy Saturday. It had been my first visit in about 8 years. He asked me if I wanted to go out along Tadcaster road, “go past the college” as he put it. Sure, why not. I already felt a bit subdued by the grey weather, and that odd feeling of knowing a place but not knowing anybody in it anymore.

It was gone. Completely gone. A huge, modern building was in its place. I was surprised to feel really quite emotional about it.

When I got back home I looked it up, emotion giving way to professional curiousity. It was a brand-new campus opening that September. In 1999 the College and Tech had merged. In 2005 the complex as I knew it was demolished to make way for the new buildings.

Demolition underway in late 2005. By Neil Turner. Source

It looks fantastic, and was quite necessary. I was sad to see the old building go with all those beautiful memories, but the college most definitely needed more space, not to mention the potential purpose-built facilities offer for teaching. The original college could only deliver so much given its origins as a modest school.

I wonder if it has a social area?

Google and a rose tint

York Sixth Form College existed largely before the digital epoch, and definitely before social media/web 2.0 (sorry) took off. There’s depressingly few photos of the place as I knew it. I have some envy for students nowadays as they have a glut of images to look back on when nostalgia descends.

I found a few on Flickr (which I’ve already posted), and some unlikely sources: Writer and journalist Sophie Heawood popped up from a Google search; I immediately recognised a photo she had posted in an article as being the bike shed/smoking area (the official one, anyway…). Those Portakabins in the background were ostensibly temporary. I suspect they remained to the bitter end. Anyway, It’s a good read, and if my arithmetic is right based on what she wrote, I may have been there during her first year. It’s a small world. A friend was also, er, kind enough to share one of me. Christ.

Askham Bar Park’n’Ride, 1993ish. Oh dear.

Of course, not everybody feels the same way. My best friend from college was very cool on the whole experience, and I suspect he thinks I’m mad for being remotely nostalgic about it. For most others I would think university superceded it in terms of sheer living experience. For me it was pretty special, and while I don’t wish to sound like I’m living in the past, it’s a beautiful place to visit once in a while.

The continuing saga of my Eyes

The rough with the smooth

It’s about six months following surgery for the rhegmatogenous retinal detachment of my left eye. The good news is that the retina has recovered very well; at four months an Optical Coherence Tomography (OCT) scan of my eye showed nominal recovery. I was somewhat relieved.

A complication of the surgery, which involves a vitrectomy – a draining of the vitreous fluid in the eye – is a subsequent development of a cataract, in about 80% of cases. This has begun for me, and the brief moment of improvement in my eyesight is now stalled. My central vision in the left eye was slowly returning, but is now partially obscured again. I can’t do anything about it until March, which is four months away.

I have also developed age-related presbyopia in my right eye, so I now require reading glasses. It’s not been a great year for my peepers.

Still, there’s much to be positive about. I am likely looking at a full recovery for the left eye, assuming the cataract surgery is straightforward. We will see.

Why Scoobi Is Probably Doomed, In One Picture

A Fish Out of Water

Utter madness.

I give it a very short amount of time before these are getting pushed over or vandalised by irate drivers. They’re all over the East End of the City, occupying car parking spaces. If you’ve travelled to London, Paris, Madrid or anywhere with a true multi-modal transport network you’d think this was absolutely absurd. Why don’t they use dedicated parking, or those nooks and crannies that so many cities have? Well, this is Pittsburgh.

Not Hotdog

Scoobi, in their own words:

Scoobi is a mobile application based on-demand mobility service for individuals in need of rides to their preferred destination by way of an electric scooter.

Translated, somebody has secured VC funding for a fleet of battery-powered scooters in a season-bound city that it is a textbook example of the primacy of the automobile.

I cannot think of a worse place to try this, apart from perhaps Antarctica. Somewhere with the cultural and legislative foundations like California, despite being worse for just about everything else, gets it right when it comes to two wheels. PA is still stuck in a time when two wheels means you’re either broke, a hooligan, or a dentist playing Easy Rider on a $30k Harley. Scoobi, for what it’s worth, is a great idea on paper. However, this progressive, environmentally friendly platform is in a city whose culture is heavily, but not totally (more on this later) dominated by the car. For example, here is an excerpt from the PA Driver’s Handbook:

A motorcycle is a full-size vehicle with the same privileges as any vehicle on the roadway.

Yes, dear reader. You read that correctly. And yes, these are considered motorcycles. Just roll that around in your head for a moment; savour the utter madness.

A motorcycle is a full-size vehicle
A motorcycle is a full-size vehicle
A motorcycle is a full-size vehicle
A motorcycle is a full-size vehicle
A motorcycle is a full-size vehicle
A motorcycle is a full-size vehicle

This removes the inherent advantages of a powered bike at a stroke. You can’t filter or lane-split; you are limited precisely to the same freedom as a car well over four times your size. There is zero dedicated infrastructure around the city for scooters and motorcycles. What could be a burgeoning market for deliveries and efficient commuting is stymied by totally backward legislation. Instead you wait in traffic and park as if you are a car.

The result? Individual scooters and motorcycles using a full car parking space, which – if you are familiar with Pittsburgh drivers antipathy to anything that isn’t a car – is not going to have a happy ending. Why use one? What you are you gaining?

The Exception that is BikePGH

BikePGH are little short of amazing. They have done an amazing job in cycling advocacy, and it’s fair to say they’ve successfully challenged the dominance of the car, at least in the city limits. Pittsburgh now has some dedicated bike lanes, and a growing cycling culture. It’s helped by some unusual unspoken privileges granted to cyclists; namely filtering and being able to sensibly roll some intersections; consequently cyclists that have overcome the fierce topography of Pittsburgh can get around more efficiently than anything else.

Realistically, powered bikes need their own version of BikePGH, or the roads will never be opened up in a manner which makes them truly practical. I can’t help but think Scoobi has put the proverbial cart before the horse.

Sight

9th May, 2018

My Ninja 300 with Shane’s KTM 1290 Superduke, hours before I realised something was going very wrong with my vision.

I’d had a great couple of weeks. I’d just got back from visiting my Dad in Spain, along with my sister and beautiful niece (whom I had never met).

My sister and niece in Salobrena, Spain.

Yours truly in the hills of the Valle De Lecrin, Spain.

Spain had really inspired me this visit, and I dreamed of being able to take a bike to some of those pristine roads in Andalucia. Maybe next time.

A couple of weeks back home had seen the unusually long winter finally give way to rising temperatures, and the longer day allowed riding with friends after work again. I met my friend Shane for a short ride out and meal afterwards to see in the new riding season. During the ride I became aware of something in my left eye; what looked like a large vitreous floater; the kind of ghostly web that one sees occasionally, but much larger. Later on, in the pub, it came and went. I recall thinking that in a certain light it looked as if someone dressed in black was standing in my periphal vision. Due to a sense of optimism and well-entrenched morbid fear of hospitals and doctors, I thought I’d sleep on it and see how it was the next day. I wasn’t especially worried at this point.

Well, you’ve got some blood in there.

I awoke the next morning, and as soon as I sat upright that ghostly floater had turned an inky, impenetrable black. If you imagine your vision simplified as a rectangle, the bottom left-hand quarter was completely gone, replaced by a shapeless dark void.

Obviously this warranted a trip to the ER, which fortunately was just up the road. After handing over $100 (my ‘copay’) I was seen almost immediately. I described the symptoms and had to place a towel across my eyes, sit in the dark for ten minutes, and await the retinal scanner.

This machine, about the size of a coffee percolator, whirs and clicks as it locates your eye, then takes a picture. The ER doctor, a genial, middle-aged man looked at the images and said “Well, you’ve got some blood in there.” He suspected a ruptured blood vessel but was emphatic that he couldn’t say for sure. “We see about two per week. It’s common. Just not to you.” Fair enough, this was the ER, they were not going to be able to do much more. I needed to see a specialist at an eye centre as soon as possible, which as far as the ER were concerned meant the next day. There was no immediate urgency at this point; just a kind of calm hurry.

I called my local eye centre and was greeted by a receptionist with all the enthusiasm of someone that wished you were already dead. She told me they were full the next day, she’d have to ring around and would call me back (narrator: She didn’t call back). In the end I decided to call again and this time got someone useful that booked me in at a location the other side of town the next morning.

Sewickley, PA. 11th May, 1100hrs

Oh, that sounds like a retinal detachment. I hope not.

By this time, it had got worse. If I had to describe it in percentage terms, I’d estimate that around half the vision in the left eye was gone. I was scared, my family was scared, and I was starting to feel the onset of some panic. what could be wrong with me? Was it just my eye, or was something else happening?

The triage nurse was efficient, funny, and had a bedside manner that definitely needed a bit of work. She was also, as it turns out, right on the money. As I described my symptoms and she established what I could and couldn’t see by moving her hand around my field of vision, she casually uttered “Oh, that sounds like a retinal detachment. I hope not.” I could have lived without hearing the last sentence, but in hindsight (ho ho ho) I suspect she was referring to the fact this would not be a quick fix, rather than a gloomy prognosis. I was then left in the waiting room for an hour to ruminate (in an extremely anxious state, as you might expect) on what I’d been told. My eyes had some drops to dilate them, so I strained to read my phone (battery: 20%) to try and figure out just how much shit I was in, all the while sending nearly unintelligible text messages to my wife waiting outside with the kids.

Here’s Google’s card about retinal detachment, also featuring an image of an attractive woman in an art gallery, if you like that sort of thing.

When the wait was over and I saw the ophthalmologist, she was absolutely brilliant, warm-mannered and confident enough to greatly reassure me, and confirmed the triage nurse’s suspicions: It was a retinal detachment. I had three small tears at 9,11, and 2 o’clock, the most common form, known as rhegmatogenous detachment. Why? Age and plain bad luck (National Eye Institute, 2009). It would require an operation, and the Dr. told me she would be calling around to find a surgeon, and that I was not to eat anything as the operation might be that day. It was at this point I realised this was fairly serious, but the nurse and doctor confidently assured me I would be fine.

Word came I was to head to UPMC Mercy for surgery immediately. My wife, cool as a cucumber under what must have been enormously stressful conditions with two children to look after, took me there straight away.

UPMC Mercy, 1445hrs

You’re sitting there, minding your own business, and your retina just decides to go and detach itself.

I’d been lucky. I’d never had surgery. First stop was pre-surgery testing, which would typically involve obtaining blood for analysis, but actually turned out to be nothing but verifying paperwork in my case. No blood work required. Then I was admitted which was a matter of bagging my clothes and belongings, donning a gown and letting the scrubs-wearing ninjas get me ready. The surgeon and the fellow assisting him (both absolutely brilliant guys) came to see me, and he introduced himself with a jovial “You’re sitting there, minding your own business, and your retina just decides to go and detach itself.” They both examined my eye and told me the plan: A sclerical buckle, and probably a vitrectomy, due to the number of tear sites. A sclerical buckle is a small band that is fixed around the circumference of the eye like a belt (hence the name), the purpose of which is to apply pressure and help reattach the retina. Due to the offset of one of the tears, it probably would not be sufficient on its own, so a vitrectomy would be required. This involves draining the vitreous; the gel-like liquid inside the eye which maintains the spherical shape. Two precision techniques, laser and cryopexy are used to bond the torn areas of the retina to the wall of the eye. A gas is then used to form a bubble temporarily replacing the vitreous (National Eye Institute, 2009).

The surgeon marked his initials just above my left eyebrow. He described this was necessary to mitigate what is considered a ‘never event’. I’ll let you guess what…

I’d lost track of time at this point. My pupils were profoundly dilated. My watch had been removed and I could no longer read the clock above the nurse’s station. I was wheeled off to the anaesthesia area to prepare for the op. After a chat with the anaesthetist and a great deal of questions I was rolled into the operating room. An oxygen mask went on, the IV was started, and shortly after that, the lights went out.

I came round with no pain, intense nausea, and a big old bandage over my left eye. I had my face in a horseshoe-shaped pillow; until my follow up appointment the next day it would be necessary to keep my head down so the vitreous gas bubble would maintain positive pressure against the retina (Retinadoctor, 2018). The nurses were fantastic; one of them put something in my IV to relieve the nausea and it stopped in a snap. I couldn’t quite read the clock so I wasn’t sure if it was 915pm or 245am. It was the former, thankfully. My wife and kids charged into the recovery room and I felt a lot better.

The nurses helped me into my clothes and I was on my way, almost 12 hours after the day had started.

Aftermath

As I write this, it’s one week later. The follow up appointments revealed the surgery had been successful, now it was a matter of waiting for everything to heal. I feel pretty fortunate, as I never had much pain and the swelling (which was profoundly unpleasant) reduced rapidly. The vitreous gas bubble has shrunk as it is slowly absorbed and replaced by vitreous fluid; I can clearly see its circular shape in my eye. My sight isn’t quite there, it’s rather fuzzy, but it is improving, and it is all there. Best of all I have my peripheral vision back on the left side; I can drive again and I don’t feel dizzy anymore. There is a possibility of developing a cataract as a result of the vitrectomy (NCBI, 2014), which will require further surgery, but I’ll deal with that down the line. It beats being blind.

Some things fall into perspective at a time like this. One of them is, if you have a problem with your eye, don’t fuck about. I should have got it looked at immediately. It may not have changed the outcome, but it could have made things easier, and the extent of sight loss would not have been so great. I’m also fortunate to have such a great wife. We have no help, it’s just us and one or two friends. My wife looked after everything.

Life is short. One moment I was out having fun with a friend, suddenly I’m looking down the barrel of sight loss. Isn’t it amusing how many of these metaphors involve sight? I can tell you my sense of humour has had quite a workout in the last week.

I’m not dying (well, no faster than anyone else), I didn’t go blind, I’ll probably ride my bike this week. I’m pretty lucky, all told.

References

National Centre for Biotechnologhy. 2014. Cataract formation following vitreoretinal procedures. [ONLINE] Available at: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4181740/. [Accessed 13 May 2018].

National Eye Institute. 2009. Facts About Retinal Detachment. [ONLINE] Available at: https://nei.nih.gov/health/retinaldetach/retinaldetach. [Accessed 13 May 2018].

Retinadoctor. 2018. Post Vitrectomy Recovery and Posturing. [ONLINE] Available at: http://www.retinadoctor.com.au/blog/frontpage-article/post-vitrectomy-recovery-and-posturing/. [Accessed 13 May 2018].

Fitting The ‘ebay’ Exhaust to my TT250

N.B. this post originally appeared in edited form at chinariders.net

I bought my stainless ‘ebay exhaust’ – the one everybody uses – months ago but never had the chance to get it fitted. These kits almost fit the TT250, but there’s one definite modification required; you have to widen or cut the flange as it’s not drilled wide enough for the 229cc engine’s exhaust port studs. My neighbour (actually the maintenance guy for place I live in) offered to help me cut the flanges with his grinder and vice. On friday night we did this with the accompanying (somewhat terrifying to the uninitiated) shower of sparks.

I was a bit worried about the studs and cap nuts, already haven taken the bike through winter. In fact they came off with just a light turn of a ring spanner; however the bottom stud unscrewed from the cylinder block rather than the cap nut. The threads were in good condition; but I couldn’t get the cap nut off so resolved to get a spare. Autozone and Advance Auto Parts didn’t have anything suitable – they sold M8 x 1.25 studs but they were too long. A local hardware store had a good selection so I armed myself with a couple of spares. I also bought a nut splitter and some small locking vise grips, placed the grips on the smooth part of the stud and was able to turn it off. My cleaning and scrubbing the nut while it was on the bike had let a lot of WD40 penetrate in and gum up the threads, but it was basically fine, so I put it back on the bike, screwing it in with my fingers. No problems. I bought new nuts and lock washers.

Next challenge was the gasket. I’d ordered a new one from ebay and it’s basically a little copper ring, but I couldn’t see the existing one; I then noticed the exhaust port appeared to have some weirdly machined interior edges. The ‘wet’ spots are some cleaner I had sprayed on earlier:

The photo revealed these were deformed at the top, and I realised I was looking at the existing gasket which had a squared cross section, and had been pretty well squashed. I grabbed it with some needle-nose pliers and it popped out. I put the new one in (I dabbed a little grease on it to make it stick as it kept dropping out and tried the new header for size, screwing the nuts on finger tight to get an idea of fit.

Some people have got lucky with the fit of these things. I knew straight away the clutch arm was going to be close, and I figured it would be a little clearer when it was all tightened up, but for now it made a little ‘tink’ every time I let the clutch lever out.

Secondly on fitting the mid pipe and muffler, it cleared the frame by about 5mm and easily passed under the airbox, but there was absolutely no way I could get it to meet the bolt eye under the seat where everyone usually fixes it. It had about an inch to spare:

I could not move it up as this would bring the pipe into contact with the frame; I could try and bend or dimple it, but it really didn’t have much motion available at all. So I knew I had to make some sort of bracket.

I haven’t made anything out of metal…well, ever, really. I went to Home Depot and found a length of Aluminium ‘flat’ that was three feet long (lol) and two inches wide, and a mini hacksaw. It was .0125 thick, so plenty stiff. I reckoned that If I cut a simple rectangle 12cm x 5cm I could drill holes in it and make a bracket, so that’s what I did. Well, I sort of butchered the holes a bit (I didn’t measure well) but it fitted; you can see it here:

Exhaust clearance to the license plate holder is marginal (I used the included spacer and even bought some nylon ones from Home Depot in case I needed more room) but it’s fine. Lots of riding today, no melting:

I was still unhappy about the clutch clearance, so I Googled some advice about how to, er, ‘shape’ exhaust pipes and the most simple way appeard to be to whack it with a ball-peen hammer. So I got a regular ball peen hammer (6 bucks, Harbor Freight) and marked the spot with a sharpie where the clutch actuator was touching, and set about whacking my exhaust. A few blows made the material dimple enough to give about 2mm clearance (it actually increases when bike is hot) and it’s on the underside so not visible.

Last job was to take the carb off and fit the 115 main jet (already had a 27.5 pilot which I knew is a little rich so should be fine with a more open pipe) and put it all back together.

It sounds great, and the bike pulls strongly throughout the rev range. I was pretty pleased with the result.

Hope this helps somebody.

California Dreaming

…On such a winter’s fall day

Back in September I spent five days in Los Angeles at the 2017 Open Source Summit. I’d never been to California before. I wasn’t sure what I’d make of it. My wife thought I might hate the endless, dusty sprawl, but I had a certain fascination with the place through the same medium as most people: Entertainment. My perception of Los Angeles was formed through the lens of Michael Mann, James Cameron, and Kathryn Bigelow. Most of the metal bands I listened to in my youth were from California, and one – Megadeth – formed in Los Angeles. There is also something else that’s notable about LA, at least for the biker: California has the most sane motorcycle traffic laws in the United States. It remains the only state where ‘lane splitting’ – or filtering as it’s known at home – is not illegal. The wording is deliberately imprecise as it is not explicity forbidden, and the California Highway Patrol offered guidance but were obligated to withdraw it:

A petitioner complained to the Office of Administrative Law that there was no formal rulemaking process for the guidelines, and raised other objections. The CHP discussed the issue with the Office of Administrative Law and chose not to issue, use or enforce guidelines and thus removed them from the website.

Simply: No guidelines, because there’s no law.

Los Angeles, Sept 10 2017

The sprawl of Los Angeles from my flight into LAX. Downtown is visible under the wingtip.

I arrived after a painless if long flight from St. Louis (nothing direct from Pittsburgh, natch) and slowly worked through a busy terminal 1 at LAX, waited what felt like an interminable time for my luggage and walked out into a perfect southern California evening.

I knew beforehand I wouldn’t be able to secure a bike; there’s plenty of rental opportunities in LA but given I had to pay my travel, car, and hotel expenses up-front I had nothing left in the tank for such an indulgence. I’d been in touch with a couple of SoCal internet people I knew, but this came to nothing. A pity, because as I’ll touch on later, I would realise a motorcycle is the best way to get around LA. No sooner had I walked to the shuttle stop at LAX I’d seen a Triumph Daytona whistle past and wished it had been me riding it. A car would have to do.

The shuttle bus took about ten minutes to get to an enormous Enterprise lot near the airport, and I ended up being allocated a metallic grey Kia Soul. I placed my phone in the console cup holder and turned the GPS app up loud enough to hear, and started the 14 mile run to the hotel, which involved a simple route of two freeways and a single exit.

Flickr Creative Commons via arbyreed

LA’s freeways are huge, and when they move, – which at 6pm on a Sunday they surely would – they move pretty fast. I didn’t get lost, which for anyone that knows me is a minor miracle.

Downtown LA is, perhaps, like downtown anywhere. People don’t really go there for fun; it’s a sterile showcase of glass and steel; work and function. There’s the occasional panhandler. In this sense it is barely distinguishable from London’s Square Mile, Manhattan’s financial district, or the relatively diminutive Pittsburgh Golden Triangle. Like NYC, there’s a strange familiarity with place names, because you’ve heard them before from books and film. South Figueroa, Sunset, Wilshire, South Union…

I was booked into the J.W. Marriott Live, which adjoins the much taller Ritz Carlton on the western edge of downtown LA. It also happened to be the conference venue.

J.W. Marriot Live, LA.

I used the gym and swam 50 lengths in the pool I had a burger and a couple of pints for dinner ($50!!!) as part of my highly disciplined healthy lifestyle, took a couple of photos from my hotel window while tired and buzzed, and soaked in the atmosphere from the view below.

The view from my hotel room

Feeling the effects of dinner and a long day’s travel, I rolled into bed and settled into a fitful sleep.

Out And About

Daybreak from my hotel room

As it turned out, I would have two full afternoons to explore LA. I wanted to see the ocean; and I knew going west would take me through most of the urban sprawl, so I intentionally avoided the freeway. The city has a nearly total grid system (unlike Pittsburgh, which was designed by M.C. Esher) so you could pick up a half-dozen roads anywhere within a block of the hotel and follow them all the way to Santa Monica on the sea front. I chose Sunset Boulevard because I knew the name and thought it might be interesting. This route would take me through Beverly Hills, Pacific Palisades, and eventually Malibu, so I hoped to see a range of neighbourhoods, although this is still a small fraction of the total sprawl.

Most of what I visited outside of the moneyed areas is dusty and slightly shabby, which was as I expected. It reminded me of some mediterranean industrial towns: Shades of magnolia and grey, lots of low-lying concrete buildings and iron railings, mom & pop convenience stores, fast food outlets, automotive shops and wide, heavily-trafficked roads. None of it was particularly alien to my eyes, but entirely different to everywhere else that I had visited in the US. The heat and light gives it a distinct atmosphere from the East Coast. You’re in the entertainment capital of the world, but you wouldn’t know it in the midst of the sprawl. It feels like and industrial town.

Suddenly the sidewalks get cleaner, the grass is conspicuously lush and cultivated (remember that this area was only just in drought conditions) and you’re in Beverly Hills. In truth, from the road there’s not a lot to see. It’s all tidy sidewalks, gated entrances and whitewashed walls under the shade of palm trees. The cars get more expensive, but there’s little character to the place. Pacific Palisades is easier on the eye, and there’s some fantastic architecture at some of the properties (sadly I could not get pictures) and some elevation changes as it is at the foot of the mountains. This area reminded me a lot of the wealthier parts of Capetown, up in the hills. I kept thinking this would be a cool place to cruise about on a Harley.

I took a quick detour through Santa Monica. It is like any city pierside scene; chintzy, seedy stalls cheek by jowel with more moneyed joints. It didn’t feel a great deal different to Atlantic City in New Jersey. The colour palette gradually changes from industrial concrete to whitewashed apartment buildings and houses, and after a short run you pick up CA-1: The Pacific Coast Highway.

The PCH takes you through Topanga Beach, which feels a little run-down and shabby, but has a certain charm. In Malibu I stopped for lunch at a ‘Country Kitchen’ (a chain) and enjoyed my coke & fries and taking in the atmosphere, listening to the Spanish chatter from the larder compete with the radio. There was the road and some villas between me and the ocean, but I got a little sea air. It was terrific, and I could have stayed there all day.

Topanga Beach fisherman

Topanga Beach, Santa Monica in the background

I knew Mulholland Highway (‘The Snake’, of some notoriety to bikers) wasn’t too far up the road, and I really wanted to see some of the famous canyon twisties, but both days would see me pressed for time. I drove up one of the roads off the beach near Malibu and enjoyed the view:

The pacific ocean from Big Rock Drive in the mighty Kia Soul

Malibu itself is obviously wealthy, I recall thinking of my Dad because it all reminded me of Marbella in Southern Spain; whitewashed villas, immaculate lawns set above a bright blue ocean, and that is a place I have only been with him.

Traffic

I decided to take the highway back. It was about 4pm. This would turn out to be very poor judgement. LA’s traffic has a reputation, and it is well deserved. It’s absolutely absurd, and the end result is that getting across town on highway 10 took me almost two hours.

This was my view for a couple of hours.

This was the real evidence for me that bikes were of the utmost practicality. Time and again I would hear the rumble of a Harley, or the creamy, reedy vibe of an inline-four and watch helplessly as bike after bike whizzed past.

As for LA, I really enjoyed it, and developed a certain fondness for the place. I definitely want to see more of it, and as the last day rolled over I was determined that I would come back when I can. Would I live there? That’s a big if. Who knows what’s around the corner?

As Much As I Hate Winter…

This really put a smile on my face.

Do i bring bike in't house at end of November & trim it up for Christmas again 🎄 or keep it on the road & hope for a mild winter ? 🤔 pic.twitter.com/HUpqiyPK1q

— Mucky Bandit (@Yorkshirebandit) November 2, 2017

There’s always somebody with a delightfully cheery outlook.