“Being told you are going to die is a shock. The slow drip-drip feed of information allowed me to piece together the fact that things were not looking good for me. An operation to reduce the tumour in my neck wasn’t as successful as we’d all hoped for, the round of scans after that, a let down.
But when they told me – actually said the words to me that I was moving to palliative care, I found it extremely difficult to accept. Meanwhile we were in the middle of the pandemic. Hospital visits were solitary, except for a few of the times where having my wife by my side was deemed to be ‘compassionate’. Bending the rules because things are so hopeless is cold comfort.
Guilt plays a part too – when I’m in hospital alone – my wife is alone. Isolation isn’t just for the elderly. Without visits, you have a lot of time to think in between consultant rounds where their PPE creates another layer. The concern in their eyes is still visible. Just about.
I know people are protecting me – I’m considered a vulnerable person. I am thankful for that. But even the tiny pleasures – a trip to see a movie, a quiet drink in my local, a short meal out – these are no longer options for me. The pandemic has taken so much from me.
Our plans for Christmas this year were low-key. None of us want to say the words out loud – that it will be the last time I put up the tree. Or watch my brother put up my tree as I don’t have the energy anymore. I watch from the couch as my wife wraps the lights and feel immeasurably sad.
I want nothing more than to take her out for a meal in her favourite restaurant or sit at the back of a gig and tap to the beat, her hand in mine, but the threat of Covid is too great. I understand the added fears my family has for me as we battle through another month of restrictions.
We cut back the numbers of those friends I wanted to see over the holidays. The trip to the panto with my nephews was cancelled. My college friend was supposed to travel from the US. If we winter this out, we can summer anywhere, politicians say. But this is my last Christmas – and most likely I’ve lived my last summer.
Why not risk all of it – do what I like and accept the possibility I might get Covid, some might ask? Well, my family couldn’t and wouldn’t support any added risk to my failing health. I’m their precious thing, their focus, the funnel for all that hope.
So we huddle down, watch movies, listen to music, greet a few friends. Sometimes, lately, we walk the very short distance to my local park. The evenings are dark now. My wife and I sit on swings in the playground and whisper about what will happen. After.
It is easier than thinking about before – the frustrating delay in scans and treatment because of Covid restrictions. The pandemic has made an unbearable situation so much harder. I’m not blaming anyone. I’ve made my peace now with my situation. Despite everything I feel lucky. But there’s no doubt that the latest announcement has tainted an already difficult situation.”
Sincere thanks to Joe for sharing his perspective. He’s asked we not use his full name.