Feeling Like Frodo
My Allograft 2018-20 – 37. 23rd May 2020
By Andy Burrows, 23 May 2020
A couple of people got in touch because they wondered why I hadn’t posted a video journal for a while. And it’s comforting to know that people notice.
It’s just a weird situation. And I have tried a couple of times to do another video from my Covid-19 holiday away from everyone.
If I’m honest, though, it’s not always been good for my emotional health to do them.
Firstly, since I try to do videos as naturally and unscripted as possible, it means hours or even days of introspection, churning over how to gel topics into something that doesn’t come across as a complete garbled muddle. And sometimes that creates pressure that doesn’t help and isn’t necessary.
Second, excessive introspection can take you into dark places that are difficult to get out of.
For instance, I recorded a video a while back which I didn’t publish, even though I edited two versions of it. As I recorded it, I got steadily more and more depressed, as I talked myself into a corner. And even with several takes at a positive conclusion I still couldn’t fully resolve the tension.
And that started by simply asking “why do I shave?”! No-one is seeing me… no-one expects anything from me, no output, no work, no interaction. So, following the logic, why do I do anything? I could lay in bed all day and no-one would even know!
So, I shave, and exercise, and shower, and dress nicely, and read my Bible, and pray and think of things to be grateful for, and work on Supercharged Finance, and play PS4 games, and read books, and watch films, and cook meals, and clean the flat, do my washing, attempt to write a novel, and talk to all sorts of people around the world (from friends and family to people I meet on LinkedIn in far-flung places)… to prove to myself that I can choose to do positive things without being told to do them. My life is not determined by the expectations of others.
The corner I talked myself into was that I then couldn’t find a real purpose or reason for doing any of those things when I didn’t feel like it. What keeps me working hard with Supercharged Finance when the doubts creep in and I wonder if it will ever get off the ground? Why am I doing it? Why am I even writing this blog post? And the best answer I could come up with is – because I feel like it, just because… And sometimes that’s not good enough.
No-one really wants to be positive
I then also recorded a video recently, and edited it, but didn’t publish it, because it turned into a bit of a rant.
That started with something I don’t normally do, which was looking at my viewing figures. My last video – A Pandemic of Positivity – got the lowest number of views of my whole series.
And I reckon that’s because people are not really interested in being positive! Oh yeah, it’s Andy again, talking about positivity – let’s scroll on – boring! Yawn! All the while, we’d rather be getting wound up by negative media reporting. We actually want to be outraged about things. It makes us, seemingly, feel better to blame someone, to get angry, to feel anxious, rather than to get things in perspective.
That’s why we’re addicted to the news media, and they gravitate to the stories where things have gone wrong… because the things that have gone well are boring. The fact that we’ve avoided hundreds of thousands of people dying is boring. The fact that hospitals have coped is boring. The fact that two thirds of care homes haven’t had a single covid19 case is boring. The fact that GP surgeries are texting patients to come and see them because they’re not busy is boring. All we want to know about are the things that we can blame or hate someone for – even though if we had those jobs we’d be pleading for some sympathy under the pressure.
The real point I wanted to make was that that level of anxiety shows that you are all now having to face a similar situation to the one I’ve been in over the last two years – an increased awareness of risk. And I’m emphasising awareness of risk. There is risk all around us all the time, but only some of us, sometimes, are aware of it.
And it’s how we handle the awareness of the risk that is important. It’s very tempting to be anxious, to look to blame, to be angry, frustrated, confused. But here’s my advice.
First, you have to get perspective on the risk. So, take in the numbers – by the time lockdown starts to be eased, there will be less than 1 person in every thousand with the disease. If you stand two metres away from that person, especially outdoors, you are extremely unlikely to catch it. If the R value stays below 1.0, the number of cases will keep decreasing. And that’s what the strategy is based on.
Then consider that even if you caught the disease – which will be unlikely – there’s a 1% risk of dying of it on average.
Compare that to my risk of dying because of my stem cell transplant – much higher (I don’t want to mention exact figures that may be scary to my kids who may read this)! My residual risk right now because of my low cd4 count is many times higher than 1%, even without Covid19.
Stay alert – seriously
Am I going around anxious about the risk? Complaining about having to visit hospital every few weeks? Petrified of touching surfaces?
No – I stay alert – please! No more lampooning of that phrase! It’s exactly the right phrase.
I follow the advice of my doctors. I take the precautions I’m told to, and when I’m told I’m safe to be less restricted I’ll abide by what they say. Sure, sometimes it’s complicated, and sometimes appears to conflict – like being told to stay away from public places, but to come to hospital for checkups and blood tests. Just think it through, get some clarification. And follow what they say. No need for stress. Just do what I’m told!
I stay alert. I wash my hands. I stay away from public places. I avoid certain foods. I boil my water. I don’t go in the same room when someone is dusting or vacuum cleaning. And now I’m following the instruction to temporarily go further and stay away from people completely.
No need for stress. No fuss. Just do what I’m told.
Your doctor is Chris Whitty, and he and Sir Patrick Vallance are consulting with some very clever people – very much like my consultants in the MDT meetings that decide my diagnosis and treatment. The UK government is using their advice to tell us what we should and should not do.
Just follow what they say. Take one step at a time.
It’s not difficult when you break it down to that level.
Step by step
We have a long way to go in the Covid19 epidemic. Just like I was told in July 2018 that I had a long journey ahead of me, a journey of some extremities, but also of long, patient, grinding progress.
Let me tell you from experience, the only way you are going to get through this – and remain sane – is by taking one step at a time, and by deciding to be positive – keep smiling.
Avoid blame. Avoid anger. Avoid anxiety. Avoid focusing on the risks. Stay alert. Wake up every day and follow the rules in place that day. Avoid getting bugged by what other people are doing. Trust that much cleverer people are taking responsibility for dealing with the big things we can’t comprehend – Covid19, testing, vaccines, lymphoma, stem cell transplants, chemotherapy, PPE logistics, infection control.
One. Step. At. A. Time. Keep Smiling.
This isn’t just me being idiotically positive. “Oh isn’t it nice for Andy having his head in the clouds and so positive. He can have that luxury while the rest of us deal with reality!”
This is important. This is something that you can do. Something you have to do.
Ok, so you can see why I didn’t release those two videos, and now I’ve come back to writing that I can actually edit and think about!
Clocking up the stats
For me now, it’s day 67 by my reckoning. 67 days since isolating myself away from everyone in my nephew’s flat 40 miles from home. I’ve spent my 50th birthday here, my 25th wedding anniversary, Heidi’s birthday, and two of my kids birthdays – that’s a lot of family celebrations we’ve missed!
(It’s also about 472 days since I received my donor’s stem cells.)
In keeping with what I said above, I’m determined not to think about what the next lot of guidance will be for me and the rest of the “extremely clinically vulnerable” group. They will tell us when we need to know. And it’ll be sometime in the next three weeks.
I’ve had a couple of hospital appointments since I’ve been in isolation. One I had to go to hospital for – my IVIg (intravenous immunoglobulin) treatment. The other I had on the phone.
The disappointing thing about the one on the phone was that it was supposed to be time for the quarterly check on my cd4 lymphocyte count (that tells me how strong/weak my immune system is). But they didn’t want me to come and have the blood test, presumably because it wouldn’t have changed their advice, so why bother putting me at risk?
So, I’m still stuck in this situation where my immune system is what is holding me back from normal life (whatever that is nowadays).
But what I can say, more positively, is that this period of isolation has forced me to focus really hard on some really important things.
First, I am now physically fitter and stronger than I have been for many months, if not years. I’ve exercised on the exercise bike, and with dumbbells and things like press-ups and sit-ups, six days a week. And I’ve tracked my progress.
If you remember my post back in November, I spoke of how I was progressing after 6 weeks of exercise after coming out of hospital following my last bout of infection.
I’d gone from hardly doing anything to going 30 minutes, and a distance of 9.17km at an average speed of 18.8kph, on the exercise bike. I was pleased with that at the time. Six months on, and after 2 months in isolation, I’m now spending the same amount of time on the bike, but I’m clocking “distances” more than 14km and average speeds of over 28.0kph.
In terms of heart rate, too, I noted that during my spells in hospital last summer/autumn, I’d hit 160bpm (on my Watch) just wobbling across the hospital car park, and had a “resting heart rate” of around 95bpm. In November, I was managing to do maximum workouts at 150bpm, and had a resting heart rate of 70bpm. Now, 6 months later, I’m still pushing my maximum workouts to 150bpm, but my resting heart rate is 55bpm.
Back in November, I couldn’t do more than one single solitary press-up. Yesterday, I did 81.
Second, business-wise, I’ve progressed Supercharged Finance to the point of being able to launch a credible product into the market this week. How it will do, I do not know. I am nervous, often doubt-filled. But I’m enjoying the work, and the fact that I can now start to call it “my business” and not my “side-hustle” or “hobby project”.
But the point is that, yet again, I’ve pushed through the physical and mental barriers, and put material together that wouldn’t have happened without the focus, the time, the motivation and determination.
I do feel a little like Frodo Baggins in The Lord of the Rings, singing:
The road goes ever on and on
Down from the door where it began.
Now far ahead the Road has gone,
And I must follow, if I can,
Pursuing it with eager feet,
Until it joins some larger way
Where many paths and errands meet.
And whither then? I cannot say.
I had genuinely hoped that my story would have merged back into true normality by now, but still this allograft story goes on. The road goes ever on and on. It’s long.
But, to come back to my Everest analogy, I feel now like I’m into part of the descent where the air has more oxygen, the snow has gone, the sun is warm, and the going is less tough. And I can afford the luxury of turning every so often and seeing the massiveness of where I’ve been. Did I do that? How did I do that?
I feel amazed to be here, to see what I’ve achieved, what I’ve overcome – most significantly despair, anxiety, negatively, doubt, despondency, self-pity.
The most awesome thing, though, is that I’m nothing special. Because what that means is that if I can do this – as an ordinary bloke from Basingstoke – you can do it too!
And you will have to, with Covid19 still around us for a while.
And I will be here for you, just as you have been for me, cheering you on. You can do it. One step at a time. Keep smiling. Even in the dark days of Covid19 there can be a pandemic of positivity.