Covid Diaries. First Imagine This.

I started writing this blog 11 months after Dylan’s cancer diagnosis to raise awareness of what it’s like to live within the world of childhood cancer.
I’ve tried to be as open & as honest as possible whilst also holding back quite a lot of the truly darkest details.
I’ve tried to raise awareness to educate others not just in what happens physically to the cancer patient & their family but also what happens psychologically.

The dictionary definition of the word “devastating” is “highly destructive or damaging; causing severe shock, distress or grief”.
I think over the years I’ve explained as best I can that cancer is all of those things and more.

Despite the multiple devastating blows caused by cancer to our family in the last 3.5 years (Dylan’s grandmother’s relapse of cancer & subsequent death a year after Dylan’s diagnosis, Ruari’s father’s stage 4 cancer diagnosis & subsequent death a year before the end of Dylan’s treatment), I have continued with all the dignity I could muster, to try to find my way through situations that have completely altered the course of all of our lives; I’ve had no other choice.

Alongside the deep grief I will forever hold for the life we lost, I’m expected somehow to find a way to feel gratitude within a life where I struggle to exhale.

Should the gratitude I feel for the fact that he’s still alive feel the same as the gratitude I had before I knew he might die? Of course I’m grateful that Dylan narrowly escaped death, but that gratitude is tinged with pain. Of course I’m happy that Dylan made it through his long treatment plan, but I know how happiness used to feel before his diagnosis; these adjectives are bittersweet.
Apply this notion to every single other positive or uplifting adjective & you may be able to grasp the knife-edge complexity of every single emotion I feel; every single one of my positive adjectives has been cut in half to sit alongside the pain I now carry. That means my negative adjectives now carry extra weight.
I’m one quarter grateful & happy whilst being three quarters fearful & sad, every single day.
Imagine how that might feel every day of your life.
Covid-19 has screwed up those complexities into what feels like a tangled ball of wool & added weight to the psychological fragility we’ve endured for so long (look at a picture of your child 3.5 years ago & compare it to now to gauge just how long we’ve lived in abject fear).
Cancer nearly did (& still could) take my child; anyone who’s read my blog posts, follows me on social media or knows me personally already knows that’s the weight of my day-to-day & I’ve said before that I wish I was exaggerating, but sadly I’m not.

While the world was being told that Covid-19 only really affects “the elderly & the vulnerable” we were basically being told that it was another death threat that Dylan needed to avoid, that information was put to us just before he finished treatment.
In short, cancer could kill my son & now on top of that so could Covid-19.
Imagine how that might feel every day of your life.

Look at your children. Randomly pick one. Study them closely. Take in their beautiful profile, their infectious laughter, their peculiar foibles, their healthy head of hair, their little hands, the shape of their fingernails, their feet & the shape of their funny little toes. Breath in their personality. Take it all in.

Now try to imagine watching them start to slip away.

Now, having made it through that indelible moment without coming up for breath, try to imagine watching them lose the ability to walk up or down the stairs, get in & out of bed, bend down to pick up a toy, open their eyes in daylight, swallow water or eat food, all the while never again knowing if they’ll live to reach what you thought would be their full potential.

Keep your child in mind as you try to imagine watching their hair fall out, vomiting at night, losing control of their bowels, having untold general anaesthetics, being given the highest possible dose of every possible chemotherapy drug in the vain hope that they stay alive.
Now take your time & try to imagine what that would do to your mind as a parent & more importantly, as a small child.

3.5 years on, having somehow managed to survive the most horrendous obstacle course on the world’s most precarious rollercoaster, now try to imagine hoping against hope that you don’t have to see them take their last breath on a hospital ventilator because they’ve been struck by a virus that you’ve been told could kill them if they catch it.
Imagine how that might feel every day.

In May, the childhood cancer community mourned the loss of several children, one who passed away from leukaemia having also contracted coronavirus. Only 10 people were allowed to his short graveside funeral whilst his mourning family were unable to seek comfort from friends & extended family. Despite their utter devastation, they stuck to the rules because that’s what they were asked to do & they respect the vulnerability of others having just lived through the nightmare we are desperately trying to avoid. At exactly the same time Dominic Cummings was dicking about in Durham.
Imagine how that might feel every day.

That basically summarises our family’s reason for being classed as “clinically extremely vulnerable”.
That summarises the reason we have been asked to shield through a global pandemic that has so far taken 750,000 lives in just a matter of months.

If you’ve managed to temporarily submerge yourself in the above paragraphs whilst imagining one of your children going through any of this you may just come close to slightly understanding both my previous & current psychological state.

At no point throughout any of these torturous ordeals have I ever asked for sympathy; empathy definitely, sympathy certainly not.
At no point throughout any of these torturous ordeals have I ever uttered anything but gratitude for the help that so many people have put our way & most people with empathy would never expect thanks…it doesn’t take a rocket scientist to understand that when you’re helping someone who’s on their knees they are simultaneously up to their neck in shit; sometimes we don’t remember to say thank you & sometimes we just don’t have the capacity, that is because we are broken.

For the most part I have tried so hard to remain realistic, I have tried so hard to keep smiling, I have tried so hard to remain polite. I have tried so hard to present to the world as honestly & openly as possible whilst also internalising so much pain; an emotion you might be able to empathise with if you simply & selflessly took just one minute to imagine as your own.
Whilst all of this has been going on, I have also on occasion been apathetically put in additionally stressful situations, not of my own making that I neither needed nor deserved.
Imagine how that might feel every day.

Something like 2.2 million people were identified as clinically extremely vulnerable across the UK.
That is potentially 2.2 million families who were already affected by the stresses of life altering health issues & difficulties. At the beginning of lockdown, 2.2 million already highly stressed people were told to stay at home until there is a vaccine.
Imagine how that might feel every day.

A tiny minority of the entire UK population have to all intents & purposes been treated by some as an ignorable subset of humanity & have been forgotten about. A large number of these people would’ve been working, would’ve been living as close to a “normal” life as their condition allowed them. Our normal life was cancer, we got on with it, we got used to it, we didn’t like it but we had no choice. If Dylan catches Covid-19 he is still as at risk now as he was at the start, his health hasn’t miraculously improved since March thus reducing his clinical vulnerability. There are now less cases which in theory reduces his risk of catching the virus but that doesn’t make us feel any less fearful & perhaps that’s because we watched him deteriorate so quickly just as he started chemotherapy; you don’t simply shake off 3.5 years of living a certain way just because treatment has ended. The end of treatment feels like one of the hardest stages of this entire process which I’ve tried to explain in previous blog posts.

Now it feels like we’ve been hurled out of the frying pan & straight into the fire & I am reliving so much of the initial trauma.
Imagine how that might feel every day.

Shielding families had permanent difficulties & less choices than many before this pandemic & as the entire nation’s choices & freedoms were temporarily suspended in order to stop the spread of the virus, shielding families were subjected to yet more difficulties & less choice on top of what they were already dealing with.

I have had so many people get in touch with me to share their experiences as shielders & some of those experiences have done nothing but compound the extreme stress they were already under.
Imagine how that might feel every day.

The government’s stance was to “stay at home” to “protect the NHS” in order that the NHS could “protect the most vulnerable”.

The vulnerable were & still are a nationwide responsibility.

Some haven’t seen it that way & many of the clinically vulnerable are having to do extra “work” to get through that psychological quagmire.
Imagine how that might feel every day.

All you have to do is imagine it’s you for just one minute & ask yourself truly how you think you’d be feeling after 24 weeks of shielding (don’t forget to add in a scenario like childhood cancer to create true gravitas).

I suspect those fortunate enough to have full health but who chose not to make it through at least 90% of legal lockdown will find something intangible to pick at, although I struggle to imagine what because if you can’t empathise with any of this then you need to question what kind of low-life human you are & if that concept upsets you then I suggest you take a long hard look at your fragile navel-gazing ego.

My personal experiences & those of some other shielding families during lockdown are yet to be written but they’re up next…

I don’t think there’ll be enough clinical psychologists to get through the 2.2 million vulnerable folk (if they’re all still alive) before they plough through the psychologically disturbed masses…although I suspect we’ll be placed at the back of the queue.

Imagine how that might feel every day.

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