I’ve always felt that the glue that held (first) LifeCycleForNeuroblastoma and (latterly) Ride2CureNeuroblastoma together was the blog: the weekly brain dump of the trials and tribulations of being out on the road.
Then came COVID, and lockdown, and suddenly there was no road anymore. One day morphed into the next; even my work dried up for three months while my clients adapted to the new way of working, and basically everything stagnated. I stagnated.
It would have been the easiest thing in the world to have chucked it at that point on the basis that I’d done loads of miles and it was maybe easier to call it a day than it was to keep going. But I was on that run of unbroken days, and that’s what ultimately kept the show on the road. I was on 776 days unbroken after the 31 miler on 14th August: indeed I was being so careful, doing stuff like delaying the weekly supermarket sweep run until half eight on a Thursday night, that it was as much of a shock to wake up in the early hours of the 15th with a tickly throat than it was to try and work out where I’d caught it. I’d been out of the house just twice in the previous ten days: once to meet with big Mouldy to review a project that we were working on, and again four days earlier to watch our Finn’s Girvan (Juniors) FC at Irvine Vics. The big man had been testing regularly and he was negative before and after our meet, so the finger of blame points directly at leaning on the wall adjacent to the home dugout by the halfway line on the Wednesday night.
It is what it is. Double vaccinated, I got unlucky, and not very well as it turned out. Everyone’s gonna get COVID, make no mistake about that. And we’re all probably gonna get it more than once: it’s the nature of the beast. My fear, and hence my nervousness, is that Long COVID leaves a potentially life changing legacy. It’s three months this weekend since I tested positive, and while I’m in no hurry to rush off to the doctor and ask to be stuck on the Long COVID register, there are sufficient changes to how I’ve felt these last couple of months to make me consider that outcome.
I’ve no great desire to rake over old ground about how I felt in those days after testing positive, but it is worth highlighting that twice I had to phone 111 (NHS 24 in old money) because my blood oxygen dropped to 90%. The first time it happened, I got summoned to the out of hours facility at Crosshouse Hospital: there, I was told that anything below 90% is danger time, because organs start to pack up once they’re starved of oxygen for any length of time. They told me to do deep breathing exercises every couple of hours to get oxygen into the bottom of my lungs. Believe me, when you feel like shit, it’s so easy to just sit/lie back and rely on shallow breathing: it’s a bad idea.
The effect on everything was dramatic. Finn was staying over that Saturday night and he caught it. Despite testing PCR negative a couple of days after me, Jane caught it. But strangely, despite being in and around the two of us, Joe didn’t catch it. Not that time around anyway: he had to wait another six weeks before he fell foul of the COVID, despite having self isolated for almost two weeks as the rest of us fell foul of the lurgi one after the other.
The COVID happened two weeks after I lost my brother. Three weeks prior, he suffered a massive brain haemorrhage from which he never woke up. It was as sudden as it was painful for us all. The whole of our family, with the exception of Ross, missed the funeral. Jane, Joe and I watched it on separate live streams in three different rooms of the house where we were self isolating. I’d written a poem about his life, which I recorded to camera with a thumping sore head and a dry croaky voice. Watching that being played on a big screen at his funeral was one of the most surreal moments of my life. Even today, I can’t quite get my head round the fact that Mike’s gone. Jane and I got ourselves a new stereo for our silver wedding anniversary, which ironically was a few days after we escaped from iso, and to my amazement, my old vinyl sounded different from the way I remembered it. But as I sat there thinking “This is incredible” sadness overcame me because the only person in the whole wide world who would recognise the difference in all that old soul magic was Mike, and that wasn’t ever going to happen. Sad then, sad now, sad forever….
The aftermath of Mike’s brain haemorrhage was to provoke thoughts of “Could the same happen to me?” but frankly, having talked it over with my GP, it’s more important to maintain a healthy lifestyle, albeit at a reduced pace compared to before, than to worry about keeling over tomorrow: and for me, that meant getting back on the bike.
All of that leads into this post COVID era.
In my day job, which I pursue solely because I enjoy making a difference rather than watching daytime TV, I serve a number of clients in software development and support. The irony is that I’ve been way busier in terms of demand since COVID that maybe I was leading up to it: and that’s come at a personal cost.
One of the applications that I developed back in September was what we term a Case Finder for Long COVID. Those are patients who have multiple recorded instances of known symptoms of Long Covid some weeks/months after the initial infection, but who are not on the Long COVID register. The list is extensive but I can lay claim to have had about five or six of them these past few weeks.
The worst have been brain fog, insomnia and ultra short term memory loss (what did I do five minutes ago?)
I literally haven’t a clue how I’ve managed to get through my workload these past two months. I’ve built an automated audit for patients in care homes that’s right up there with some of the most original work I’ve ever developed. But I had to keep walking away from the computer because I was (repeatedly) getting ten minute warnings that my head was going to explode. It felt like someone was sticking my head in a vice, I was getting extreme stress headaches (I don’t normally do headaches, and even when I do, I’ve never had headaches like that before) and the longer I defied the signs to try and finish the job, the longer it took to recover. That was happening day after day.
I’ve since developed two other major applications for different clients, each with an expectation. As a developer, you always want to deliver the perfect solution, but in my case, I always demand to exceed expectation. The pressure that you put on yourself has never been a problem until now, but when you factor in that head vice, prototyping that next new idea, the one that the client hasn’t even thought of yet, has been challenging. Last weekend, for example, I was wide awake at half two in the morning, having had only three hours sleep. I had stuff to do – I always have stuff to do – so rather that lie there getting ever more stressed that I wasn’t asleep, I got up and started programming. Dennis even came to join me at one point, although that may have been opportunistic on his part to get an early breakfast. By the time the house woke up, I’d sorted a whole load of stuff then yawned my way through the rest of the day.
The effect on my cycling has been dramatic. For a start there’s the worry that I might keel over after what happened to Mike. But I’ve learned that there are other factors at play that might prevent me from reaching that point: extreme “I’m fucked, I just can’t handle this.” I somewhat irrationally signed up for a global time trial team on RGT. Just being out there in the virtual world with real people on Discord (that’s a voice channel) has a kind of therapeutic effect in terms of togetherness: except I soon discovered that while I can occasionally do my bit for the team, when I’m having a COVID off day, I’m as useful as a brick as a floatation device in a swimming pool. Reluctantly, I’ve withdrawn from TTT duties and gone back to the drawing board in terms of listening to my body: I reckon that if I’m falling asleep in the chair at lunchtime, then it’s maybe time to take a downhill day the next time out.
The backdrop to where I’m at with the cycling is that I’ve committed to re-creating Mark Beaumont’s 2017 Round The World route on RGT Cycling (in the virtual world). I downloaded his route off Strava and I’m cutting it up into bitesize chunks. Mark Beaumont took 79 days (let’s round that up for literary convenience). I’m planning on taking 800. I’ve branded my gig as R2CN Around The World in 800 Days. I’m sure it would make a great idea for a film but that’s an opportunity for another day. The problem right now is that in order to hit 800 stages, I need to stay as close as possible to a 23 mile a day average: I’ve averaged 36 for the past eight years so of course that should be a piece of piss: not after COVID it isn’t. I’m already behind schedule but that’s okay because ATWI800D stages only count on the days that I do them. I take recovery days between the difficult ones.
Look: I’ve waited eight long years to take on a challenge that’s only a fraction of what kids (and their families) with neuroblastoma take on. Carrying on is the least I can do.
But hey, I’m 22 stages in. 22 is a magic number in R2CN vocab so I move forward in the hope that having got this far (I’m in northern Germany, near Hannover, having started in Paris) the worst is behind me.
Till tomorrow, and Stage 23, or not.
Ride2Cure Neuroblastoma 