Hi all, hope you’re all doing okay.
You might have seen this latest Blood Cancer UK blog on our social media channels, but I thought it might be useful to share this on here too!
Check out our latest blog - Why are people with blood cancer being told to shield for 12 weeks?
I think it’s a brilliant blog that really sets it out so clearly. Thanks so much Blood Cancer UK
Yes it’s a really good insight into the issues. It’s tough to be isolating. It’s been more than seven weeks since I ventured out of my house. It would be nice to get some semblance of normality back - kids at school etc - but also appreciate it needs to consider safety first. I for one have found it hard mentally, with some days better than others. But we’ll get through it, I just wonder what the ‘new normal’ is going to look like.
The Blood Cancer team has been great throughout the pandemic working hard to help us all. Can’t thank you all enough.
Hi Lou, what is concerning me is that shielding has rather quickly become my normal !!
However I think I am far more aware of my emotions and their fluctuations. I also think and hope I will appreciate our nature, flora, fresh air and most especially family and friends even more.
I am also so appreciative of Blood Cancer UK and everyone on this forum for their support, insight and information. As you say , yes, we will get though this together, thank you.
Hi @Lou @Erica thank you both so much for your lovely words, hope you’re both doing okay? As you both touched on, it can bring so many mixed emotions the prospect of lockdown measures possibly changing and what this will be mean for people who are shielding. But we really do encourage you all to talk through on here, however you maybe feeling- there is no right or wrong 
@SuBloodcancerUK some days are better than others. My family are off for a bike ride and I’m at home. Being alone does make you ‘over think’ or maybe that’s just me. Anyone else missing the ability to do normal things? As you say @Erica this is becoming our new normal. I do like that it’s given me time to reflect on what matters, but it’s tough being left on my own when the rest off my family go off! Off for biscuits and Fearne Cotton podcast.
Hi @Lou, that is interesting that you say about missing the ability to do normal things. I was just thinking that this morning. I knew exactly what I had planned today, that was to clean the kitchen, but so far I think I have picked up the duster twice. I have fiddled with putting a rosette on a hat, there is me also not leaving the flat, moved some bits around in a cupboard, made a couple of phone calls and then lunch And yes, my new normal.
This blog post is a very very good article from Blood Cancer UK and important reading for those moments when we need to be convinced of the reasons we are doing this very difficult thing.
Some more data has just been released which has looked at 17 MILLION people in the UK who are registered with a GP who uses a specific computer system. This is by far the largest study of its kind for COVID19 in the world.
It looks at the risk of dying in hospital from COVID19. I.e. it is asking how many people with different characteristics ended up dying in hospital from COVID19 and what factors are associated with being more likely to have that sad outcome.
The Hazard ratio for blood cancer was estimated and after adjusting for age and other factors that might also influence mortality from COVID19 these came out as 3.52 ( possible range 2.41-5.14) for those diagnosed in the last year, 3.12 (2.50-3.89) for those diagnosed between 1 and 5 years ago and 1.88 (1.55-2.29) for those diagnosed more than 5 years ago. These were among the highest individual risk factors of any condition.
A Hazard Ratio can be thought of as essentially indicating how much more likely an event is to happen. Thus for those who have been diagnosed with blood cancer within the last year the estimated risk they died from COVID was 3.5 times the normal population, and for one to five years the risk was 3 times the normal population and for those diagnosed longer ago it was approximately 2 times the risk of the normal population.
So here we are seeing that across the groups estimates the lowest possible range for the estimate for the risk would be 1.5 times the normal risk of dying from Covid and the highest possible estimate was 5 times the normal risk. That is quite a broad range of uncertainty and reflects that even a study of 17 million is not large enough nor has their yet been long enough time to give an absolute answer to this question. Everyone agrees that sadly before this epidemic is over a lot more people will die and so these estimates will become more accurate over time. But it would certainly seem to be the case the real risk must be significantly over 1 as the HR ranges do not come close to overlapping 1 (i.e. the lower range is not less than 1).
Mathematically you could in theory multiply those numbers by the risk for the general population of your own age and come up with an individual estimated risk.
Perhaps surprisingly there is a hint of a suggestion that the longer you have had blood cancer the less likely you are to die from COVID19 in hospital in the UK. Now remember this is not talking about the risk if you catch it but rather the risk dying from COVID19 being in the group described.
However we should note that these numbers will all be lower than they would otherwise be because of shielding. And since if you are shielding religiously it is essentially impossible to catch COVID19 if we all carry on shielding when this study is repeated in a few months these numbers may all come down further because people who are not shielding are obviously more likely to catch COVID19 in the first place.
So actually, and this is a hypothesis we cant be sure of, but if the trend towards a lower risk for those who have had blood cancer for longer is real (hard to say for sure when you look at the ranges around the estimates) then maybe that is because those patients were more likely to be already at least partially self isolating even before the letters came out.
Some of the people with blood cancer who have sadly died will have caught the disease before any lockdown or shielding instructions were issued. And so if people who have had blood cancer for longer are less likely to work, travel on public transport, and perhaps were quicker to respond to the advice from the government to shield then maybe that is why the estimate of the risk appears that their risk in practice was lower, but perhaps if nobody with blood cancer was shielding their risk might even have turned out to be higher than the newly diagnosed. We just don’t know.
Clearly we should be very careful to interpret too much into these findings. Except that it is another piece of evidence that strongly suggests that even though many of us have been shielding, there has up until now still been a significantly greater chance that people with blood cancer will die from COVID19 in the UK. But remember many of these people would have caught the disease before shielding or lock down started.
If every single patient with blood cancer decided in the light of this data to carefully sheild themselves then none of us would get COVID19 (except perhaps a few of us if we had to be admitted to hospital for some other reason and unfortunately caught it there) So when this study is repeated later on we might see these numbers drop lower and even ironically we might even then appear to be at lower risk than other people who don’t have blood cancer particularly once they start to lift lock down.
I think that society as a whole are doing us a great favour by giving us the advice and opportunity to shield and so avoid this risk. If you are shielding carefully you should not see any of this data as something to be anxious about since you are fully safe from COVID right now.
Here is the original paper:
Thanks Adrian, I will definitely continue shielding. How’s life for you?
Well, two main problems.
I miss my wife and kids and social contact more generally. Video phone just isn’t quite the same! Living with my elderly parents at 49 was not part of my life plan but my wife and kids couldn’t really sheild for me.
My allergies which have got a lot worse since CLL Are causing major issues at the moment so I don’t even feel I can go into the garden due to the pollen. Looking into even stronger treatments at the moment.
Other than that all is good. And I’m less anxious about my health than I’ve been for a long time as I know I’m safe
Yes, at least you and your parents are safe, but it must have been a difficult decision distancing yourself from your wife and kids. Your allergies sound really nasty. I hope stronger treatments are available. Take care, stay safe and we will all get through this together.
This article made me realise that getting a letter to social distance was the right decision. I did question the letter, but my haematologist was adamant that it was the safest approach. She is a specialist in MPN too. I agree the data isn’t robust enough yet, but they have to base decisions on what they have access to at the time and it’s evolving continuously. It’s these articles that remind me why I’m staying at home. I am lucky that my family is still here and staying with me. I have enough space that I have my own room, bathroom and can keep a distance from them all.
Hi everyone, I hope you all doing okay?
It’s so encouraging to see you all talk so openly about your thoughts and concerns relating to the blog. @Erica @Adrian @Lou as you all rightly say, we definitely welcome people keeping informed, but you’re all absolutely right- it’s so very important to take care when interpreting research findings. And I hope we can reassure you all, that any accurate updates to current advice and guidance, we will be sure to keep you all informed on our website and across our social media channels.
Hope everyone is keeping well?
@Lou hope you enjoyed the Fearne Cotton podcast? 
perfect combination with biscuits haha
@Erica and @Adrian hope you are both well too? As you say, Adrian, the allergies sound so uncomfortable- hope you’re feeling alright today?
How is it actually on a day to day basis living in a family unit but distancing, although you do sound well set up. I ask because it is only my husband and I here and we end up nearly dancing around each other and I noticed the other day he came into our galley kitchen and washed his hands, I moved away and then a few minutes later I used the same tap
handle !!
It’s ok as we have hand sanitiser everywhere - my daugher is obsessed with it and reminding people to wash their hands.
@SuBloodcancerUK I fell asleep listening to Fearne. No disrespect to her as her podcasts are great, but I was tired and the voices and warm weather just pushed me over the edge.
I’m wondering what will happen tonight and what the Govt is going to say. Other than Stay Alert, which is the vaguest term ever!
Hi all,
Very confusing message last night from our part time leader who recorded it early in the day so he could get home to his girlfriend and put his feet up
This is what he really means—
Look it’s easy to understand. If you can go to work you can, but don’t if you can’t.
But if you can’t get there then don’t. But you should.
But not on public transport. But cycle if you can.
But only with people in your own house. And if you do that then maybe you can go to work.
That’s clear, now us rich chaps in the cabinet can get back to doing F -all
Best wishes
Anthony:clown_face:
Hi @Blackhat aka clown_face, given the chance I’d vote for you. Does clown_face wear a hat?
I watched the Papers on BBC News afterwards. The woman on there likened it to ‘The Thick of It’… If you didn’t know it wasn’t real it felt a bit like a comedy sketch show in terms of botched delivery and lack of real message. sigh
I agree completely. The government are releasing a 50 page document later today to clarify the points raised.
Hope can you clarify a meaningless plan, it will be 50 pages of gobbledygook which will leave no one any the wiser.
Bumbling Boris has a great deal to answer for, firstly the unnecessary deaths at the start of the year. The true figures are probably higher.
Now a nonsense plan which will lead many people to think the risk is over and return to normal activities.
Testing plans have not been reached and scientists advise that there are a great many more people infected than recorded so far.
The death rate is continuing to rise and this ridiculous new guidance will lead to even more.
What about protecting the NHS, doesn’t that count anymore.
They are working under huge pressure with inadequate protection.
How many more doctors and members of the public are going to die before we get a competent government to act in our best interests.
The new slogan is meaningless, “Be Alert”, you wont see a virus coming.!!!
I wish I lived in Scotland or Wales who are dealing with this crisis correctly.
Best wishes
Anthony
Being Scottish I’ve watched the different tone and approach of Boris and Nicola S to the issue. One has talked with authority and clarity and the other doesn’t know how to regain control, or deliver insight beyond rhetoric.