This year has challenged us all. But for Sarah Hughes it’s been particularly hard. Here, she talks about living with cancer – and letting in the light in the darkest of times.
”The strangest thing about having an incurable illness during a time of pandemic is the weird but unavoidable sense that everyone has finally caught up with you. As people started talking about how worried they were, how they couldn’t stop thinking about the virus, how difficult life now seemed, how isolated, the temptation to say: “Hey guys, welcome to my world” was overwhelming.
The thing about living with stage 4 cancer is that it’s ever-present. You can be doing the most mundane of tasks – cooking dinner, chatting to your children or lying on the sofa reading a great book – and suddenly the unwelcome thought will pop into your mind: “Oh I have an incurable disease and one day it’s going to kill me.” These thoughts are at their strongest during situations such as the last lockdown and, now, the current one.
When the first lockdown was introduced, according to the guidelines I was classed as extremely vulnerable. And because of that I was supposed to isolate myself from my family, to spend my time in the bedroom having my food dropped outside and occasionally opening a window to ensure a breath of fresh air.
So, I formed my own plan. For much of lockdown I did stay in the house, unless I had hospital treatment, but I also hung out with my family, sat in the garden, continued to work and occasionally took the dog for a short walk. This time round, when the government advice is less stringent, I shall continue to be cautious while trying to fit in some exercise and live a semblance of normality. I am lucky in more ways than one. We have a decent garden and plenty of open space nearby. Lucky that the cancer has largely allowed me to continue to lead a relatively normal, mostly pain-free life and, most of all, lucky that I continued to receive treatment during this time.
I have been hospitalised seven times over the course of the past nine months, and because of Covid, no visitors were allowed to see me. This is something I found particularly hard during the first admission over Easter, lying in a bed being given IV antibiotics and blood transfusions. While the headlines have, understandably, been all about the awful experiences of those who have had to give birth alone because of Covid, it is hard to describe how very lonely it feels to lie in a hospital bed with only the disease that will kill you for company.
I am not alone in experiencing that loneliness, of course. As the lockdown continued, I spoke to friends and acquaintances about their experiences of the pandemic, the loneliness they felt, the connections they missed, the desire they had simply to go out and talk to other people. They wanted to laugh and cry, drink and dance, to go on holidays, watch films and plays, go to concerts.
As I realised when I lay in my hospital bed, the desire for connection is at its strongest just after it has been taken away – and it is this that makes so many people dread this new lockdown. The day it was announced my social media stream was full of people wondering how and if they could really cope with going through it all again. Like everyone, there are some things I still miss. Going to the cinema or theatre remains little more than a tantalising dream and I yearn to sit in a Greek taverna watching the sun set or swimming in the warming waters of the Mediterranean Sea.
Behind those dreams is the ever-present, fear-filled thrum, the beat in your head that says: “Will I ever do this again? Will life be normal? Or will we forever live in this half-world, remembering the paradise we once had and dreaming of its return?”
It is from the depths of that knowledge that I offer the only piece of advice I can honestly give: even in these depressing times try to find some part of the day that is worth relishing whether it is a moment of beauty half-glimpsed outside, the joy found in escaping into a different world on page or screen, or the pleasure of dressing up for yourself and no one else because it makes you feel fine. The worst thing that you can do is wish your life away thinking of what might have been. Instead and no matter how hard or how impossible it might seem, try to enjoy at least one moment. None of us, in these most testing of times, know when it might be our last.”
Sarah Hughes Abridged from The Guardian newspaper, Sun 15 Nov 2020
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