Nothing is straightforward about this disease. (Photo by Asanka Ratnayake/Getty Images)
A year ago, at the start of the first lockdown, I wrote for UnHerd about suddenly discovering that I was afraid of dying. It was the letter from the NHS advising me to shield that did it. Despite being diagnosed with a chronic form of leukaemia six years ago, which had worsened steadily to the point that I started needing treatment two years ago, I had — how stupid can one be? — never really contemplated my mortality.
But the knowledge that my immune system was so shot that were I to catch Covid I would almost certainly die was a sudden jolt of terror. I had no idea what the next few months held in store; only that the most sensible thing I could do if I wanted to see my children grow up was not to see them. (To be specific: I could see them, but not be near them.) One slip that let Covid in would in all likelihood be my last slip.
Well, here I still am. So let me tell you about the past year. I doubt any of the other 3,792,969 people who have been advised to shield over the past year will disagree with me when I say that it’s been what my younger self would have called a “headfuck”. Each of our stories is obviously different, but we all have one thing in common: that, weird and awful as the lockdowns have been for everyone, shielding is a different level of weirdness and awfulness.
At its most basic, it is a form of solitary confinement. For most of last year, while shielding was in place, I was living with my then wife and our kids. Living with, in the sense that we were in the same house. But I was in a room. Alone and specifically told not to interact with them. That is, let me tell you, not easy. I am by nature a stoic, but even stoicism has its limits. Hearing my children’s giggles and not having a clue what they were laughing about does not sound like a big deal. But when it lasts weeks — and then months — it is soul-destroying. It is a pretty visceral reminder that you are not part of their lives.
And much as I never really experience traditional boredom — too much to see, read, or listen to, always — the same four walls for months on end, without any change, generates a different, overwhelming sense of intense tedium. Throughout the months of shielding, the only change of scene I had was a three-week stay in hospital when it seemed my chemo had started to play tricks on me. (It turned out to be something else altogether, but the care and attention I received from the doctors and nurses was truly astonishing, given how on the floors above and below me they were dealing with genuine catastrophe.)
Then the cloud lifted in August, and shielding was suspended. When I nervously asked if that really meant I could go outside, my consultant said it was about assessing risk; if I took proper precautions, I had his blessing since it was relatively difficult to be infected in the open air. So for a few weeks I felt a sense of relative freedom.
It could not have come at a more appropriate time because, throughout all this, I had been in the final stages of divorce. The house was being sold and I was due to move. I rarely offer advice but here’s some for free: try not to schedule a divorce while shielding during a pandemic in the same house. God knows how I (or, to be fair, my ex-wife) would have coped, either mentally or practically, had shielding still been in place. As it was, I was able to view some flats, found one, bought it, and moved in on 30 November.
Then, after I had barely caught my breath, back came shielding. And I have been here, with only my cat for company, ever since. The first couple of months were a bizarre mix of freedom and desolation. Free, because instead of being stuck in my room I had the run of a three-bedroom flat. But what use is that, when the other two rooms were for my children who couldn’t use them because if they did, they might, er, kill me?
So when, three weeks after having the jab in January, I saw my consultant, I asked him the only question I really cared about: was it now safe for me now to see my kids? Well, he said, we simply don’t have the evidence yet as to whether the vaccine works in people with suppressed immune systems. We can only hope it does, at the moment. But then there’s the emotional damage of not seeing them — and to them of not seeing their father. So we decided I should bite the bullet, and they have been coming to the flat.
One thing I have realised over the past year, however, is that nothing is straightforward about this bloody disease. If it can find a way to screw with us, it will. Two weeks ago, a study was published showing that the vaccine is effectively useless for people with blood cancer. It’s not been peer-reviewed, I told myself. It involved a tiny number of patients; it might be deeply misleading. There were any number of straws at which I clutched.
But the results of the study were entirely in keeping with the expectation among many experts that the vaccine does not work for those of us whose immune systems will not react to it. So last week I took an antibody test to find out. It came back negative. I have, as the lab report puts it, “no serological evidence of immunisation”. Back to square one.
But that’s not quite the full story. Because this is where, for the first time since the start of the pandemic and all that has happened, I have moved from stoicism to fury and an anger so intense I sometimes need to sit down and take long breaths.
At the moment, we have almost no hard evidence to go on — just that one study and some random blood tests. And while there are some scientists who say the vaccine simply won’t work for immune-supressed patients, there are others who say it’s not that simple. For them, the issue is the gap between the first and second jabs.
For the vast majority of people, the decision to prolong that gap is of little consequence — and it has enabled the astonishing success and speed of the programme’s reach. But for 250,000 blood cancer patients, it may well be critical. The supposition is that while one jab may not be enough to trigger the right response, a second within the originally planned time frame might be. The fear is not that the vaccine is useless for us, but that the delay to 12 weeks between jabs could undermine any chance whatsoever that it could be effective.
And this is where it gets surreal. This has been pointed out to the Joint Committee on Vaccination and Immunisation, which takes the scientific decisions on roll-out, as well as to the Department of Health’s scientists and the Government. Surely it makes sense to give the vaccine the best chance of working, goes the argument, and speed up the second jab for the relatively tiny number of blood cancer patients. The response, I am told, is that there is no evidence that it needs to be done quicker than 12 weeks — the pandemic equivalent of “computer says no”.
Of course, there is no evidence: almost no one with blood cancer has had both jabs, so it is impossible for there to be such proof either way. Exasperating doesn’t come close.
I worry that writing this makes it seem as if I am after some sort of special status, when I am well aware so many have had it so much worse. But it’s surely not much to ask that 250,000 people are given their second jab a few weeks early. We have — willingly, of course — put up with a year of bizarre existence. And now, after all the other blows, here comes an entirely needless one. Which makes me wonder: when will it ever end?
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SubscribeSince I too have a blood cancer, and have received all the various letters about shielding, allow me to say that I have ignored all the restrictions and gone about my life in a sensible but unrestricted way, following my consultant’s view that there is really no evidence for increased risk if your disease is well-managed and you are generally healthy. Its a matter of personal choice and risk-aversion, but I am pretty fatalistic and will not allow this disease to prey on my mind or ruin my life.
Total Respect Sir – fearless & bold you are.
Hopefully you will be heard and people can make their own risk assessment there on.
But when it lasts weeks — and then months — it is soul-destroying.
I am increasingly convinced that this is the point – to do as much harm to as many people as possible, whether that harm is economic, psychological, or both. There is a reason that prisons use isolation as a punishment technique, and here we are, with govt inflicting it and the masses dutifully going along. It’s no wonder young people are increasingly suicidal or that many adults are at their wit’s end.
Isn’t it a wonder that they don’t seem to link their problems with the lockdown and demand an end? Or just ignore it and do the things they know they need to do for their basic psychological wellbeing?
People are afraid. Increasingly it seems to me that the fear of death is rendering life unliveable. There’s really only one solution : finding the courage to live with our fears.
Stephen – I really appreciate your writing these articles. There are certainly degrees of how much COVID is negatively affecting people’s lives; plus everyone is different, so some people can handle it better than others. You are one of the people most affected between your having a serious blood cancer, having to isolate for a very long time by yourself, and having zero physical contact with your children.
I live alone and I am used to it. But I recently had to quarantine for 10 days when my neighbor died from COVID. Luckily I am healthy and I had plenty to keep me busy in my small apartment. However I’m glad it was only for 10 days.
During this time my very good, seemingly healthy 47 year old friend has not been so lucky. Six+ weeks ago she went to emergency on the advice of her doctor, and she hasn’t left the hospital since. She’s been diagnosed with a very aggressive form of cancer (that even startled her doctors) and is now in palliative care. I’m unable to see her because I’m not family, and even her family is heavily restricted re access to her.
It’s so easy for those of us who are not in these extreme situations to quickly brush these things off as unfortunate. I know I did. But I’ve now found that when it’s directly in your face, or the face of a close friend or their family, you feel this person’s terrible situation right down to the pit of your stomach – day in, day out. It’s a permanent life changing event for this confined person and their close circle of family and friends. Most people’s DNA is not wired for this isolation.
It’s important to share these perspectives. Most of us are unhappy about lockdowns and other restrictions, and everyone’s life has been touched by this pandemic to some degree.
Some people, though, are in a very tough situation and there is no easy answer for them. All I can do is send my best wishes to everyone who is struggling to get through this situation.
Stephen, my heart aches for you.
Just as it did for my 96 year old mother last spring when lockdown started. What happened to her was cruel.
We have lost our moral compass in this mess.
There seem to be wide differences in the way types of blood cancer react to Covid. My wife was diagnosed with Myeloma at the start of it all but her experience of Lockdown differs hugely from Stephen’s. Her doctors gave no advice, and SHE had to contact the Govt to get the shielding advice! We share the same house but ‘mixed’ as usual. I did all the shopping, and we saw family and friends when “permitted”. However we left the house by car almost daily to find very quiet places where we could walk the dog whilst distancing properly. This was what kept us sane.
This is where the fear of the last year has got us. It is certainly not the case that those shielding would almost certainly die if they got covid. Even for the most susceptible groups the fatality rate is low and survival more likely than not.
We don’t even know if the vaccine delivers immunity, all we know is that it reduces symptoms. Where you are right is that you like the rest of us wonder when the fear will ever end…
I suppose it ultimately ends when we stop fearing death.
That is the whole point of Project Fear and the execrable psychological warfare being waged on us daily / nightly / weekly. If they don’t keep it up YouGov (founder: the vaccines minister) might find it more tricky to find a majority of respondents who still want to be locked down harder and longer.
When you see people alone in their cars, windows closed but wearing a mask and possibly also gloves – you know they have succeeded in their aim of terrifying people.
My personal favourite was a cyclist who I spotted on a busy country road, with tractors and lorries thundering past her while she wobbled around the pot-holes. She hadn’t bothered with a helmet, but had carefully protected herself from covid by wearing some nice blue nitrile gloves and a face mask. A classic example of what Project Fear has done to people.
I will see your cyclist and raise you with my pair of car passengers, sitting in the car with all the windows closed wearing a mask under one of the visitor things which are sold for hedge cutting.
Visor , not visitor. The edit button has gone on strike
Thank you for writing this. I have a rare form of blood cancer that is also chronic. You eloquently described the experience of folks like us. I was told, that if I get Covid, “you will die”. Two of my specialists made this direct statement. I believe in science, and appreciate the bluntness of my doctors. However, I do not plan to have the vaccine. My body freaks out with any changes, and my immune system is wacky. I’ll continue quarantine, and remain grateful for good friends who like to shop!
Folk live, Folk die, it’s a definite !!
Hmm. Have you actually read the data about mortality rates and what affects them? “were I to catch Covid I would almost certainly die”. Not true at all. The correct statement would be “I would have a higher risk than others in my age group”. Interestingly, CV health seems to be a better statistical predictor than is immunocompromise, at least from what I have read.
My mom lived the last 5 years with a blood cancer, and after having the last 6 months of her life severely curtailed by lockdown, died of a completely COVID-unrelated cause (blood clot complication) in November. She had long before made the decision to “f… it, I may die soon anyway, I’d better get busy living”. Once you trade too much quality for quantity of life, you’ve missed the point of life in the first place.
Thanks for this, Stephen. As a fellow youngish immuno-compromised shielder with already poor lung function and a young family I recognise the shock of that feeling of very real and imminent mortality.
I think you also provide a helpful counter to the arguments proposed by the Great Barrington Declaration supporters that we should let the virus run though the population and ‘all’ we need to do is ‘protect the vulnerable’. Protecting the vulnerable while the rest of the population interact as normal would mean 3.8 million people and their families living lives as sub-citizens in isolation, potentially forever.
However we get to a time when our risk is reduced to a level similar to it was before we had heard of Covid (if ever) it cant come soon enough, for me.
The Great Barrington Declaration simply followed previous protocols on how to deal with a pandemic.
Locking down 67 million people and the vast damage it does to the economy, childrens mental health, deaths of despair, job losses, businesses destroyed etc etc is far far worse than targeted shielding.
The virus is harmless to the vast majority, community / herd immunity was up until early last year standard practice in civilised democratic and liberal societies, lock downs were imported from China.
Once natural immunity was achieved then it would have been safer for the vulnerable to mix again with greater society, a far less damaging and compassionate approach.
Now they want to achieve herd immunity with experimental vaccines, with no known long term side effects and no legal right to sue the manufacturers for injuries.
The Great Barrington Declaration simply stated a strategy of do nothing (because we can’t be bothered) and hope. Yes, SARs (1) and MERS were suppressed by transmission prevention in Asia, but in Europe previous protocols since medieval times have involved transmission prevention, even before people understood exactly how transmission occurred. The word quarantine was not imported from China.
Natural immunity is a failed strategy for covid, proven to be in Manaus in Brazil, Bergamot in Italy (both of which had first wave attack rates that would merit the claim), and Sweden (which never looked like it had it, but still claimed it had enough to prevent 2nd wave). It was never likely to succeed given that we get no lasting immunity to any other coronavirus (some cause the common cold, we don’t stay immune to that).
With natural immunity lasting <1yr, it would never be safe for the vulnerable to mix again with society if using that as sole strategy. Vaccination (maybe with annual boosters) provides a way to herd immunity which (eventually) will allow even those in whom it doesn’t work to mix, because those they will be mixing with are predominantly immune.
Only two things may prevent that: (1) if there is a large enough reservoir of anti-vaxxer spreaders to keep the epidemic from disappearing, or (2) if new vaccine-escape variants emerge, here (due to (1)) or abroad.
[self-interest declaration: like the article author I have been shielding for the best part of a year now, I concur that the personal cost both to self and family is very high, however if done right it also works – the virus has been brought into my house twice in that time, and I have remained free of it. The condition I have is rare and there is zero specific data for it on vaccine efficacy (or safety) – even less than for blood cancer patients. I am nevertheless now vaccinated, because medical advice is almost unanimous (unusual for my condition) that the risk from the disease is far far far greater and any level of protection would be a bonus. Am I still shielding? – not really, not from family at least. Why – because even if the vaccine doesn’t work in me it should work in them thus reducing my risk, as well as the reduction from the overall cases levels falling.]
How do you assess your risk with respect to the period for which the vaccine will be effective? We don’t yet know how long the vaccine provides protection for and I suspect we will not have good data until this time next year when we have been through another winter peak. Will you make an assumption that it will last a certain period of time or wait until definitive data exists? If it is the case that the vaccine is effective for, say, only three months it will be hard to see that over the summer as infections and death likely won’t start rising again until around the start of November.
Isn’t that true for anything that compromises your health? For example I had TB as a child so I went to hospital , they didn’t quarantine the rest of my class in order to protect me.
Sorry, not quite making the connection. You had TB so you went to hospital, presumably to receive treatment. If you already had it why would your class be quarantined? I could see the sense in quarantining you if your class wasn’t infected or vaccinated to protect them until you were over the infectious stage of TB but not why they would be quarantined to protect you?
So because that’s impractical we put 60million under house arrest?
Millions are still going to work, going shopping going to school and exercising and have at various times been able to socialise in public with others. I’m not trying to downplay the huge impact of restrictions but it’s not house arrest. Hopefully, soon, the restrictions will be relaxed.
Sorry, that’s nonsense. Indefinite house arrest is what the shielders have to put up with, for as long as there is a sizeable cohort of their fellow citizens who are not prepared to undergo the minor inconveniences of wearing a mask and social distancing.
All in this together? Apparently not.
“But the results of the study were entirely in keeping with the expectation among many experts that the vaccine does not work for those of us whose immune systems will not react to it.”
The doctors and nurses you would usually see for inoculations are not likely to tell you (or often even know) that most vaccines have no effect or an effect *highly* degraded in people that are: obese, not getting enough sleep, facing daily elevated stress (say if you work in a loud environment), or have other pre-existing auto-immune condition. So, vaccines are truly effective and meant for “relatively healthy” people.
I’m a 67 year old who’s already had COVID-19 and in no need of a vaccine. Why can’t I donate mine to you? Lockdown has dehumanised us all. My brother in law has lived with leukaemia for 15 years and is on a trial for antibody treatment/prophylaxis. Let’s hope it works and is soon available fro you.
Stephen, I was with you all the way to the last third of your piece. I suggest that you read Tom Chivers’ post of today. In his wise analysis lies the answer to your plea, though I’m not sure you’ll like it.
I’m really sorry to hear your story, it must have been an incredibly hard year. I hope you get your second dose soon, and I hope everyone will take the vaccine when offered as that will greatly suppress transmission which will also help you, finally I hope the latest treatments on offer prove useful so you, and everyone in the same boat as you, which could be any of us on this site in a few weeks time stand a better chance of surviving the illness.
best wishes.