Coronavirus Advice

COVID-19 (Coronavirus)
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@Lisa I hope you manage to get in touch with your specialist nurse, do let us know how it goes and if we can be of any further support to you.

And thank you all so much for how supportive you’ve all been of one another. Just to let you all know, we are keeping a close eye on the situation, and are hoping as we know more and more about the virus, we will be able to provide more specific guidance to you all. We will be sure to keep you all updated.

In the meantime , please keep posting on here, we are taking note of all your queries, and hope to be able to support you all further as we know more.

For now, we still encourage you all to keep an eye on the official NHS and government websites for the latest updates on the situation:


Take care everyone, and please do keep posting,

Su

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Hi su. Here’s a useful resource for folks. I think it summarises the current state of knowledge quite well and whatever you think of politics it was good to hear the prime minister reporting there are plans being put into place.

BBC News Special, Coronavirus: Everything You Need to Know: www.bbc.co.uk/iplayer/episode/m000g80s via @bbciplayer

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Was this true of Boots, Superdrug and local pharmacies? I always have a supply at home because I am on dialysis and always have to take on holiday. Can’t say I’ve looked recently.

Joan

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@Adrian thank you so much for having a look and sharing links to further information to help others. Very helpful! :+1:

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Hi everyone,

I’ve received a response from the hospital and they’ve advised me not to travel. I’m absolutely devastated it wasn’t the response I was hoping for and part of me now wishes I hadn’t asked. The Government are saying to carry on as normal but I suppose
I will have to trust that my consultant knows best. Now to try and sort out a cancellation.

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Lisa, while I understand your disappointment I have just read that this country is at level 4. It is not the same, but can you have a break, perhaps in a s/c cottage in the country instead? Special treats are an order xx

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Yes I’m hoping to have a couple of days somewhere, otherwise I’ll spend the week cleaning and shopping…won’t be wearing my shorts and flipflops but worse things happen

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Oh, Lisa I know it was not the advice you wanted, but just watching the news cases notified and measures being taken seems to be escalating. I am definitely not advocating doing cleaning, but I feel treats, in whatever form you fancy, are in order. Please let us know what happens.

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I suggest wearing your holiday clothes, mix some cocktails and chill with your holiday reading. Order some disco lights and turn your living room into a nightclub. Order tapas from a supermarket (or if you have a decent takeaway)…

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@Lisa It’s really good to hear that you were able to get through to the hospital and that they were able to advise you. I’m so sorry too, as I know you are disappointed and were looking really forward to it. As @Erica and @Pisces56 have said, hopefully you are able to still have a nice break here in the UK. How are you holding up?

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Just as a further update on this thread, I have found the site I link to in this article to be very helpful as we come to grips with the Coronavirus as it lists clear data and professional opinions as the situation emerges.

For a while now I have been watching the count and noticing that in particular the numbers in China seem to have plateaued. That might suggest that perhaps this is not going to be quite as infectious as people have worried. Taken from the data and updates on the linked site here are a few facts and statements.

  • Neither the number of cases nor the death rate are currently growing in an exponential way (as evidenced by the lack of a straight line in the log scale). At the moment there is clear evidence that for now the rate might even be tailing off (see comment from WHO below)

  • 83% of cases of Coronavirus experience only mild disease

  • Death rates cannot be reliably estimated at this stage but the current trend is that for patients with no comorbidity the date rate is aproximately 0.9%.

  • The death rate rises to approximately 5% in patients with cancer and 15% in patients who are over 80 years old. Whereas it is lower in people under 50, and no children under ten have died.

  • There IS evidence that it is possible to reduce the spread of this disease as outlined in the quote below:

Bruce Aylward, of the World Health Organization Joint Mission to China said the following:

I think the key learning from China is speed — it’s all about the speed. The faster you can find the cases, isolate the cases, and track their close contacts, the more successful you’re going to be. […]

eople keep saying [the cases are the] tip of the iceberg. But we couldn’t find that. We found there’s a lot of people who are cases, a lot of close contacts — but not a lot of asymptomatic circulation of this virus in the bigger population. And that’s different from flu. […]

hina got patients in treatment early and have highly sophisticated health care treatment procedures. They are really good at keeping people alive with this disease. They have a survival rate (with a mortality rate of just under 1% outside of Hubei province) for this disease I would not extrapolate to the rest of the world. What you’ve seen in Italy and Iran is that a lot of people are dying.

anic and hysteria are not appropriate. This is a disease that is in the cases and their close contacts. It’s not a hidden enemy lurking behind bushes. Get organized, get educated, and get working."

It is of course understandable that many remain anxious about this situation. If you are not allergic to mentions of faith, then you are welcome to google search for my blog “Adrian Patheos Coronavirus” where I have posted a video interview with an expert in Mindfulness (who happens to be a Christian).

It is an hour long and in it we talk about how to manage anxiety about coronavirus and also our own matters. I think that it is perhaps particularly hard for some of us since the coronavirus uncovers our anxiety about our poor immunity and frailty that we like not to think about.

Coronovirus Statistics and Updates
https://www.worldometers.info/coronavirus/

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We’ve just cancelled our flights to Budapest that we were going to take in 2 weeks time.
We hadn’t yet booked accommodation (as we were holding back) so it’s over to Stellios now to see if he wants to give us the flight credits. Fortunately they were only £50 return each, so we’ll only lose that if he won’t play ball! But Budapest was on my list :angry:.
Yes, Hungary is not a hot spot (certainly not this time of year!), the problem as I see it is the flying. Whilst I can avoid crowded places and avoid touching things /wash/ alcohol gel my hands etc, sitting within 2 metres of up to 8 unknown people for a couple of hours?
The final nail in the trips coffin was the CT chest appointment letter I received yesterday for a scan that falls in the middle of the week we were to have been away.
Long term lung condition (thanks GVHD) and a virus that attacks the lungs? Huh? Whilst I am not risk adverse I am also not stupid.

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Hi everyone,

Thanks for all your supportive comments.

I’m still really disappointed, without going into too much detail my husband and I have had a tough few months, my dad has been very ill and I really needed this break and was hoping it would be the tonic I needed.

Now there are further outbreaks in the UK and specifically in Manchester I feel I’m as at much risk here if not more than in Tenerife where the only cases have been in one specific hotel. I mix with many people in my job, at the shops and supermarket and
my daughter in law is cabin crew with Jet2 so I can’t really keep away from her indefinitely.

Anyway, I’m sure I’ll get over it and try and have some fun during my week off work.

Thanks again everyone

Lisa

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Such a shame to miss out on time away. Here is an Important update from the UKs CMO. He believes we are now moving from the “contain” phase to the “delay” phase where increasingly the focus has to be on accepting that there will be an actual epidemic of this condition but still trying to slow down spread as much as we can.

This from the BBCs report.

“He said it was likely that later in the response, elderly people and those with pre-existing health conditions would be advised to “have some degree of isolation from more public environments” and may be told, for example, to “avoid crowded areas”.”

Seee https://www.bbc.co.uk/news/uk-51749352

Clearly CLL probably of whatever stage would be considered one of those pre existing health conditions since I understand we have a significantly reduced ability to make new antibodies from quite early on. He also made the key point however that even in vulnerable groups the VAST majority will still only have mild infections and fully recover. He believes that there may well be many more people who have been infected in China but have been assymptomatic and so wouldn’t have been tested. This would reduce the mortality figures still further.

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Afternoon everyone, there have been lots of concern about coronavirus and the impact that this has on people with blood cancer recently and understandably so with their low immunity. Alongside other cancer charities we wanted to update you all with information about protective measures people effected by blood cancer can take. Please see information on link below with a video from Bloodwise Chief Executive, Gemma Peters.

Do get in touch on our support line if you have any questions.

Kind Regards
Bloodwise Support Service

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Thanks @Bav.BloodCancerUK it is great to hear blood cancer charities working together and speaking with one voice so we all feel supported, cared for and have reliable information, thanks Gemma for heading this initiative up.

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This is a really good video and message. It is consistent with the government’s advice today which although it didn’t yet suggest all elderly and vulnerable people to stay home just yet, they did mention that some people in consultation with their doctors may want to do that now (and remember chronic blood cancer patients do NOT have to be elderly to be vulnerable due to our damaged immune systems).

Of course weighing up that this could be a THIRTEEN WEEK or more situation also factors into our discussions and decisions about what is best for us and it will be a personal and individual decision. Here is a summary of what was said at the government Press conference today

“This is the worst public health crisis for a generation … I must level with you many more families are going lose loved ones before their time” [Boris Johnson]

The Chief Scientific Advisor said that we probably really have between 5-10,000 cases in the UK at the moment based on the number who have died and those who are in ITU. Explains that it is not possible or desirable to prevent everyone catching this disease as we actually need some immunity in the population to protect us in the future. They are committed to trying to flatten the curve, but stating that if we shut schools now and did all social distancing now we would need to do it for about 13 weeks.

We officially move from contain to delay today.

ANYONE with a cough or temp above 37.8C (100F) should now stay home for seven days. The general advice is to ONLY call 111 if you are getting sicker and it was explained that there is no need to identify if you have the disease or not unless you get sicker.

One thing that is not quite clear to me is whether or not they would want someone with immune compromise simply staying at home with suspected coronavirus even if it is mild. I suspect that they might not especially since our usual advice is we need urgent review if we get a fever and remember that it could equally be a bacterial infection. I am sure it would make sense to contact your clinical team by PHONE and explain your symptoms (perhaps in addition to using the online NHS 111 service and noting that you are immune compromised). I do not think we should just go to the nearest A and E, however for obvious reasons of protecting others.

Perhaps Bloodwise might be in a position to try and establish guidance on whether patents with chronic blood cancer and possible coronavirus really will be left at home as I suspect that might be rather more worrying for many of us than it would be say for a healthy 20 year old.

Guidance for those with possible symptoms of coronavirus:
https://www.gov.uk/government/publications/covid-19-stay-at-home-guidance/stay-at-home-guidance-for-people-with-confirmed-or-possible-coronavirus-covid-19-infection?fbclid=IwAR3ByFmvvIKwVRfTuZobrCy_7568zZALfu68uoeCUnfiSnUyXA3vO5ogTBI

They speak about flattening the curve. This graphic explains the concept well. Obviously we want to try and avoid too many people being sick all at once even if we can’t avoid most people getting sick at some point. Otherwise we will clearly run out of ventilators and some people who might have survived will die.

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Some people might still be thinking what is all the fuss about? Well this graph suggests that we are probably about a couple of weeks (today the press conference experts estimated that we are a bit longer than that) behind Italy.

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This is a very personal decision for each of us. I have heard of people with chronic blood cancer taking their children out of school to protect the parent, I have heard of others who intend to carry on working as normal for now, and others who have been told by their employer they MUST work from home from now on. If you want to share about how this is all effecting you this would be a good place to discuss these matters, though of course we can’t really give specific advice to each other we can but empathise. I am relatively isolated personally anyway due to fatigue, but some family members travel on the tube, go to school and work in other vulnerable people’s homes. So lets just say I am trying to keep more than six feet away from my family most of the time at home even!

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Hi All, hope your having a lovely Friday.

We want to try and get answers to as many questions as people have re: coronavirus to try and make the situation as easy as possible for you all. We want to ensure the information we provide stays relevant and up to date. Do you or any of your networks/people they’ve been speaking to have other questions that would be useful for us to collate responses on?

Please reply/comment here or you can call/email the support service team.

Have a lovely weekend!

Kind Regards
Support Service Team

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People are asking about work. Is it reasonable for someone who works but has a chronic blood cancer and so is at risk to request home working? Is it reasonable for an employer to insist on home working for such an employee? What if an employer says its not possible for an employee to work from home (eg a classroom teacher) but they feel that the person is at risk can they insist their employee goes onto home leave? Would this count as sick pay? What if the isolation period lasts longer than someones sick leave entitlement? Can someone be fired due to this? What about someone on a zero hours contract or self employed? What about family members who work? Is it reasonable to ask for work from home or even leave accommodation if your partner has a chronic blood disease? What about school can your child be taken out of school if you are concerned about your own risk as the parent?

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Well reported Adrian.

The problem as I see it is that whilst we may be acutely health aware the vast majority of the population are not.
I have retorted several times to some who have complained about the inconvenience of these basic hygiene precautions “welcome to my world”.
It is those who are unwell (the minority) who need to isolate not the other way round. Given that a healthy human immune system can only offer defence immunity to some 200 strains of cold viruses imagine how many less people would be coughing & sneezing if those who had a cold isolated rather than carrying on business as usual?
BUT asking people to do this under normal circumstance is like banging your head against a brick wall.
I hope and pray that those who are unwell now with whatever virus will at last pay attention.

The first year following my SCT, when I was seriously immuno compromised I begged people to keep clear of me if they had a cold. Many did but some did not. My first virus post SCT lasted 3 months, that included a week in hospital on IV antibiotics + steroids.
After that experience I stopped being so nice about it!

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