Let’s talk about COVID-19, Coronavirus, the ‘rona, The Virus, severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2). Whatever you like to call it, it’s fucked up everyone’s lives to some degree or other. Not being able to see family, hug your granny, home-schooling, wearing a mask, washing your hands til they’re dry and sore, staying at home, no cinema trips, no pub, no eating out, no holidays, no mooching round the shops, no hanging out with friends. All bloody dull and bloody inconvenient. And then, far more seriously, there are lots of families whose relatives have died of Covid.
I am not a Covid denier (I always see that word and think tights…just me?) and I am not antivaxx (I have had my first Pfizer jab). I am a healthy respecter of rules and regulations. I implicitly trust those in authority. However, I do ask questions and challenge things. I think we are at the stage when we all need to ask is lockdown really working? Is it this the right thing for our society, for our children, for our economy? What are the medium to long term implications of the approach we are taking? What are the alternatives? Do we have all the facts? Have they been presented in a balanced way? Do we think the sacrifices we are being asked to make are worth the price we will inevitably pay further down the line?
I am a cancer patient. My cancer is incurable. I’m on a daily oral chemo regime which means my most critical treatment has been able to continue. I have had a monthly injection deferred for a few months and I had to forgo a X-ray of my spine. However, there are many other patients who have received suboptimal care due to Covid. For example, I know breast cancer patients who would have opted to have a bilateral mastectomy but were only able to have one breast removed. A bigger surgery means a longer recovery, means longer in hospital, theoretically increasing the risk of catching Covid. However, the decision to remove only one breast may increase the risk of a recurrence of cancer (breast cancer has a 30% recurrence rate). Many patients believe they are more likely to die of cancer than Covid and they have been left living day to day wondering whether that twinge in their back or that headache is the cancer returning.
My dad was diagnosed with lung cancer in March 2020. He wasn’t offered treatment. Drs feared he would be at too greater a risk of Covid and that would kill him before the cancer. As it happens cancer killed him in 12 weeks anyway. He may well have made the decision to decline treatment, but to have the option taken away was hard. Options and choices are really important to cancer patients. Options basically give hope, and it’s hope (and a dose of denial) that get me out of bed every day. Covid didn’t take his life, but it took his hope. His palliative care was made very challenging by Covid. He wanted to go into the palliative wing of the care home where my mum died. He didn’t want to be a burden to me and my sister. He wanted to be comfortable, safe, and peaceful. However, the care home wasn’t a viable option. Covid meant no visitors and he didn’t want to spend the rest of what was left of his life seeing my sister and me over Zoom. Human touch, particularly that of a loved one, is incredibly comforting. To deny a dying person this basic need is inhumane. We weighed up alternatives; he wasn’t “sick enough” for hospice, he didn’t want to be in hospital, so his only choice was to soldier on at home, on his own (my mother died 3 years ago).
It was very traumatic to watch him decline. A former CEO, he was a 5-foot 2 pocket rocket. Boundless energy, disciplined, more get up and go than most people half his age. However, without treatment, without hope, without day-to-day company, he quickly started to physically struggle to get himself out of bed, washed and dressed. Although we had care coming in for him 4 times a day (that’s a whole other diatribe on accessing end of life care), he still tried to be up, showered, shaved and dressed before they arrived. It kind of defeated the point, but he was proud and refused to be beaten. Unable/unwilling to prepare food, he was weak, and his balance was compromised by tumours in his brain. My sister and I worried about him falling and not being able to get up until one of the care team arrived; he could have ended up lying on the floor all night. In fact that nearly happened – it was simply good fortune that my sister was staying over, breaking lockdown, the night he fell. She wasn’t able to get him up and paramedics had to come and help. He was mortified and scared that he was going to be carted off to hospital.
Everything felt like a compromise. He was dying and we couldn’t give him the death he wanted. Don’t get me wrong, the hospice, the care agency, the GP, paramedics (apart from one who was awful) were all incredible, but they were working to a set a of guidelines which seemed not to have given any consideration to giving people a good death. Throughout this period, my sister and I were home-schooling our children and I was shielding. I can’t even explain how much harder this horrendous experience was thanks to the arbitrary, cold Covid restrictions.
Dad was eventually transferred to a hospice once he was deemed sick enough. Visiting rules stipulated one visitor only, in full PPE. My sister, by virtue of her living nearer and the fact she is generally a calmer more reassuring presence than me, was the nominated visitor. I could stand by the door in the garden looking in and waving (which is just the thing you want to do when your father is dying…Bye Dad *waves*). Fine in the summer, absolutely unworkable in the winter months. Dad was unable to say goodbye to his friends and family due to lockdown. Death and dying don’t have to be like this. It shouldn’t be like this. This scenario is being played out across the country. EVERY DAY. Every death compromised by policies which don’t seem to have factored in the human cost – it’s about making the data look better. And don’t even get me started on funerals. We have buried my dad, next to my mum. We decided to just have my sister and I and our husbands at a graveside ceremony. We were unable to have the ceremony indoors (Covid) – thank god it was summer and sunny. Burying a parent in the pissing rain would have been the icing on a particularly shitty cake. My lovely, control freaky dad wrote his own order of service and gave us an invite list. He had played us the music he wanted, my sister and I stifling giggles and exchanging knowing looks when he played some awful digitally created duet by Celine Dion and Elvis. We still haven’t been able to honour his life in the way he wanted. And even when we can hold a memorial service, do my sister and I want to reopen wounds we are gradually trying to heal?
I am in the group the government are trying to protect but I, like many people in this category, am more than capable of understanding, assessing, and managing my own risk. I can choose to avoid shops and restaurants, I can socially distance, wear my mask and live like a hermit. But that doesn’t mean the shops can’t open, that other people can’t go to the pub, that weddings, christenings, funerals can’t take place. I don’t see why curbing the civil liberties of the whole country is necessary to protect a small group of people who can manage their own risk. We are storing up a litany of problems in health, education, the economy by essentially closing down our society. The approach is short sighted, draconian, inept, misguided, and inhumane. And people are going to die. Not from Covid but from missed diagnosis, suicide, neglect, abuse. This is the invisible, hidden data, the numbers we don’t see, but that we are only just starting to quantify.
Let me share with you some of my worst fears about living with an incurable, life limiting condition. I live with constant anxiety, the fear of what next. My sister described it as “like driving into a car crash. You don’t know exactly when and where it’s going to happen, but you know you can’t keep dodging the collisions”. I literally don’t know when I’m going to take a turn for the worse, when I might lose the ability to walk thanks to tumours on my spine. I am probably as well as I am going to be right now. I want to be able to spend time with my nieces, my family, my cousins, I want have friends to stay and to eat and drink with them and laugh til I cry. I want to chat bollocks over a cup of tea with my neighbours. I want to take my kids to school. I want to stand on the side lines of a football match in the freezing cold, cheering on my daughter at the top of my lungs. I’d like to take my accident prone son to his swimming lessons so that, you know, he can swim when he inevitably falls in a lake.
I don’t have a “bucket list” per se (they just make me think kick the bucket which isn’t helpful) but I do have a “fuck it list” of things I would like to do with my children. Its painfully middle class but I make no apology for that, I am. Top of my list is taking the kids to South Africa. I visited Zimbabwe when I was 13, it was the most amazing eye-opening experience. I want to see the wonder on their faces when they see an African sunset or a lion in the wild. Realistically, I know there will be a lot of whinging about being bored, hot, thirsty, and asking when they can go swimming, but even so. At a more basic level, I need a hug and a pep talk from my best friend. There are things that are too painful to share with The Wingman. I know my fears will upset him and managing other people’s grief and sadness is one of the most distressing things about a cancer diagnosis.
I can’t get this time back. In fact, none of us can. I am trying to see the positives of spending so much time together as a family but even my reasonably sunny optimistic nature and resilience is being tested. Quite rightly, we have focused on the impact the pandemic is having on Covid patients and families and on the medical professionals who are up against it, day in day out, and have been for a year. This narrative has saturated our 24/7 news culture but bluntly….what about me, and others like me? I certainly don’t think we are talking enough about the collateral damage of Covid and how we are dealing with it as a country. Can you imagine knowing you are dying and living like this? Except, it’s not living, its existing. I just want people lucky enough not to be in my position to really think about what this might be like for people who may not have another summer or another Christmas.
AHHHH…..but what about the NHS I hear you cry? The NHS is amazing, the people are amazing. They do an impossible job in impossible circumstances. But this is not new. Covid is the straw that broke the camel’s back. I will back the NHS and our health care system as long as I have a hole in my arse. But what if the data we are seeing is biased? What if the way the data is presented is precipitating panic?
Let me just ask a few of the many questions I have, then I will pipe down:
1) Covid deaths – a Covid death is categorised as a death that occurs within 28 days of a positive test. So hypothetically, if my dad had had a positive test in the month before he died, his death certificate would state Covid as his cause of death. Hmmmmm – so not the cancer in his lungs, bones, and brain then? Could this way of reporting be inflating the number of Covid deaths? In fact, only last night (13/02/2021) on Sky, it was reported that there were 1564 Covid deaths within 28 days of a positive test. Whilst this was technically correct, the deaths were indeed reported yesterday, what Sky News failed to highlight was that some of these deaths are actually from May. Sky reference this on their website site, but to someone listening to the headlines before they go to bed, they are left with the wrong impression. Its disingenuous and misleading.
2) Hospital admissions – we are seeing a lot of people in hospital with Covid. Quite rightly, to contain the virus within hospitals, people are Covid tested before admission so positive cases can be quarantined. So theoretically I could go to A&E with a badly broken leg requiring surgery, test positive and my admission gets recorded as a Covid admission rather than an orthopaedic admission. This must be skewing the figures.
3) Occupancy/Beds – there is always a pressure on beds this time of year. Flu, respiratory illness, norovirus, slips and falls on icy pavements plus Covid has led to enormous pressure in parts of the country. However, to contain Covid, my understanding is that the total number of available beds has reduced so that beds can be further apart to maintain social distancing. ICU beds are almost always at 100% capacity. These beds are incredibly expensive so they are only opened when they will be filled. It’s a daily decision based on intake.
The fact that Covid is causing deaths is irrefutable but are the numbers as high as we are being led to believe? The fact that the NHS is on its knees is irrefutable but is this down to decades of underfunding and it’s taken a huge healthcare crisis to make this real for the public?
Are we being asked to make enormous personal sacrifices based on misinformation and obfuscation?
It is not wrong to ask these questions or challenge decisionmakers but those who are doing so are being vilified and subjected to abuse. As someone most at risk from Covid, I am frightened, but you know what frightens me more? Not being able to live what’s left of my life as a result of policies based on data which isn’t wholly transparent and where the collateral damage to society isn’t being openly discussed and considered.
Ps: I know this a contentious subject so let’s debate it like adults. Please don’t come at me. I feel nervous and vulnerable about putting this out there. It is my lived experience and my views which I want to share.