My partner has been on W&W for CLL for 11 years. With the easing of COVID-19 restrictions in the UK, we're still being cautious. How much risk are you happy to take, what steps are you taking to protect yourselves?
Stepping out now COVID-19 restrictions have ea... - CLL Support
Stepping out now COVID-19 restrictions have eased in UK
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Beatirce
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It has just been reported that 13 women met for dinner in Melbourne, Australia, and 11 of them caught Covid. One was hospitalised. They followed the rules. They were all fully vaccinated, wore masks into the restaurant, and then took them off to eat and drink. So the rules are flawed.
This is the new world we live in. The rules won't protect us from Covid. Being ever vigilant will give us a better chance than rules alone.
Thank you - this is helpful.
Doherty Institute epidemiologist Katherine Gibney said "Being in a crowded area for a long time that's indoors, poorly ventilated and not wearing masks is one of the highest-risk things that you can do,"
Dr Gibney said being fully vaccinated and getting a booster shot if you were eligible were the most important ways to minimise the risk of catching the virus, and prevent serious illness if you do contract COVID-19.
She said choosing to wear a mask in some indoor settings and avoiding being in poorly ventilated indoor areas with lots of people would be wise measures to take.
Ms Webster said in hindsight she would have taken more heed about risks she picked up on, like the restaurant she was in not checking vaccination status, and some wait staff not wearing masks.
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"I think we would all have been a lot sicker if we weren't vaccinated," she said.
I have been in W and W for 13 years with relatively low blood counts but still take a lot of precautions even though I am triple vaccinated. I only go to indoor places that are well ventilated and I know are not going to be too crowded, I have been to pubs but only outdoors, have rarely taken public transport though did a flight in summer when they were empty. I have given up going to the gym When the level of COVID goes down a lot I will resume these activities It is easier for me as I have hardly any family and don't celebrate Xmas. Dave
Thank you all for your comments. It's helpful to know that we're not alone in being very careful.
Here in the UK we know all these precautions can help but the removal of the mask mandate in July has made far too many people feel they are invincible. My son travels in Europe quite a bit for work and he notices how on public transport etc there they all wear masks. When he returns to the UK he is shocked by how few do. If only our government reintroduced that simple rule and led by example, those of us who are vulnerable would have a lot more options.
Sadly, we can't totally protect ourselves. We need the whole community to work together and that sense of community has been lost since the early days of the pandemic.
Yes, we're in the UK too. It seems that those who were told they were extremely vulnerable in the first lockdown in 2020 and their families are now left to fend for themselves and have been forgotten about, and others outside their immediate circles don't understand why they have to be so careful.
I had a face-to-face (sorry - mask-to-mask) with my GP this week. After the initial 'how are you', we did talk about this very thing. The advice is don't closet yourself away, instead assess the risk.
My example was that (a) I had decided against going to a local Exhibition which was staged in the sports hall of a school (because there would be hundreds of people wandering around in an enclosed space, all of unknown Covid status) and (b) I had decided to go to a local-ish shop (because, being a niche place, it wouldn't be busy). We had gone to a baby shower last weekend (never been to this weird American import, so didn't know what to expect - turned out to be in a function room of a pub with its own bar and trestle tables of food, so not all bad then). Here, enclosed room and lots of people, but we stayed by the door and open window (and a pool table between us and the rest!).
So, back to the GP, there's no point being told to assess the risk when you cannot measure the risk factors in the first place, in particular the level of antibody protection. You can only assume antibody protection = zero -- and closet yourself away.
Therefore you're back to judgment rather than assessment. And my judgment is the fewer people the better, the more spacious and ventilated the environment the better, the more people you know to be responsible the better (e.g. old friends rather than young strangers). And so on. You'll be able to think of more factors.
Stick your head above the parapet. And if you feel uncomfortable, duck down again. I forced myself to do just that. There was an element of 'let's get of here', and a bit of worry counting down the five days after, but I'm still here to tell the tale.
I go for my shopping early in the morning and took my Granddaughter to a baby music class, only 5 toddlers in a church hall and one parent. I wore my mask I was the only one masked. They had a side door open I felt a bit anxious as it was the first time taking her.
Yes, we have stuck our heads above the parapet, but when numbers of cases are shooting up and winter's here, I can't wait for summer again
I'm risk averse. I eliminate risk to the maximum extent possible. But again in the great country of Slovakia (sarc) the situation is as dire as it has ever been. As of today we have another lockdown in place. So the only risk that I take is to do the shopping for necessities with a properly fitting ffp two or ffp3 mask on. One leg in one leg out no fooling around. We have to survive somehow till next spring. I expect the situation to improve markedly in around April just like last year. By that time everybody will be either vaccinated, recovered from covid as unvaccinated or dead. That is what a German politician said yesterday and I think he's right.
Hello.I am not saying in any way that we are correct but, since you ask, we are still shielding.
We are so fortunate to have both retired and I appreciate that so many have to still go out to work…I retired just before covid and it’s not quite what we had planned! 😩
We are in the U.K. and it is my husband who has CLL. He has had it since 2013. He is currently taking Venetoclax and has just had his second (of six)monthly Rituximab infusions, so we are in the position of having to be extremely careful, and would have to be relatively so, even without a pandemic.
We have only left the house to go to medical appointments since March 2020 and have our groceries delivered once a week…. I think I have forgotten what to do in a shop!🤣My husband does go out to cycle and, in the summer months, I went out in the early mornings to walk locally.
We have not seen our sons and grandchildren for almost two years, and it is getting very hard ( luckily we can talk to them on FaceTime, but obviously no hugs!). We don’t drive, so it makes it even more difficult… never a problem before, and we never regretted it, but who knew there as going to be a pandemic??🤦🏽♀️
I have a very long list of the things I miss /have missed…some of them are….
family … including two birthdays for each of the grandchildren, who are growing up way too fast
walking ( to coffee shops, obviously!)
train journeys to other places
being able to relax, maybe for a whole day
waking up and being excited for the new day ahead
doing my own shopping…choosing foods properly and not having to hope they will be delivered
I am sure everyone has their own lists and I have lots more things I miss.
We have both had our third covid vaccinations, as well as flu jabs. Paul took part in the National Covid Cancer Antibody study and they said he has antibodies… could be only two, we just don’t know and we none of us know how many we actually need…so, his consultant is happy that he has some, but is still advising caution.
I think I am just living in hope ( and praying) that the numbers of hospitalised and ventilated Covid patients will continue to improve and, maybe, we shall eventually get out of this dreadful situation… but I should like us to be fit and healthy for when we do, so we shall continue to shield. Fortunately, we get on well!
I hope this has helped a little… it’s good to hear others’ opinions, I find.
I am happy to hear that you are still being careful… you have to do what is right for you… but don’t be hard on yourself for staying safe!
Take care,
Fran 😷
Fran, Thank you. It's really helpful to hear about others' experience and to know that we're not alone in all of this. I'm lucky in that my health is OK and I can get out for walks and do any immediate local shopping. Keep safe.
You are following the same plan as we are.. I do so sympathise with not seeing grandchildren.. We too haven't seen most of ours for 2 years either
I feel bad for your children, grandchildren. Can you not see them in an open area with ventilation? The risk is minimal. Life is risk.
The risk isn't nominal according to my consultant.. She has told me to only mix with people for short periods of time and ask them to test each time before hand .. I have 9 grandchildren 5 of whom live so far away they would need to stay overnight at least and the of other 4 3 have Covid at this very time
Everybody needs to make their own judgments. Even pre covid we all took risks. I have been masked, I have no immunity but am being careful but I am working full time, going out eating, shopping, seeing relatives, making NEW good memories. I beat CLL for now and won't stop living because of covid. I have many comorbidities..CLL, diabetes, CKD, HBP, overweight, very low IGG. This is not a mystery...we KNOW how this disease is transmitted. If you stay 6 feet away from an infected person and wear a mask and sanitize hands frequently the odds of getting infected are very low. Or wear a double mask. Or get monoclonal antibodies. Plus if you should get infected they have many more treatments now and the risk of death is also very low. No guarantees in life...Just my view of things.
I agree with you.Although I do try to be careful you have to weigh up the risks versus benefits!
I can't stay cooped up anymore.
Life is for living
With respect to "Plus if you should get infected they have many more treatments now..."
Availability and accessibility of COVID-19 treatments depend on where you live. Both are very low where I live.
"and the risk of death is also very low."
Unfortunately not for quite a few of us:
healthunlocked.com/cllsuppo...
If only COVID-19 wasn't symptomless so often and people were more prepared to protect others by wearing a mask - and properly at that!
Indeed "Everybody needs to make their own judgements" as to whether the rewards outweigh the risks.
Neil
So is the risk of death 38%+ for those with severe Covid in hospital but what % of those exposed end up in the severe covid hospitalized group? Is it 38% of 10% or 38% of 50%? I assume if we follow proper precautions even with CLL the risk of death is quite low. But standing 8 feet outside so you can connect with loved ones seems a good compromise from debiltating fear. And even hugging them while holding your breath seems reasonsble and gratifying...just keep virus from entering nose/mouth.
Hello.I’m not sure that the risk is that minimal, even for them travelling… they would need to stop on the way and would only need to come across one person who ( probably unknowingly) had covid…
Unfortunately my sons and their families would have to drive for 5-6 hours to us and to say to little ones (2, 5 and 7) that they can look at Nanna and Grandpa after coming all this way, but not go into their house and stand outside in a park seems too harsh on them. If they were older maybe but, for now, we have to make the difficult decisions that feel right to keep my husband safe, especially whilst he is having treatment.I know it is different for everyone, but cases are really high here and I know that our sons would not forgive themselves if their dad became ill.
Maybe our views will eventually change, but we’ve lasted so long so far… through various treatments, I want to give my husband the best possible chance and, as others have said, our consultant has also said the risk is serious.
Stay safe,
Fran 😷
Understood. The positivity rate is important. I've been in 14% and now 2.5%..it changes quickly. What has helped me is to realize I can prevent infection. The virus must enter nose and/or mouth in sufficient quantity. I have excellent masks and saline nasal wash. You could add a face shield for more protection. I also am on a steady diet of anti viral supplements..still I am aware we cannot eliminate all risks.
If they wear at least a surgical mask, and you two wear an FFP2 or better, hugs with faces averted should be minimal risk. If he's not showing other symptoms like constant colds, skin, or other infections, and doesn't need IVIG, and doesn't have neutropenia, your doc may think cautious interactions are minimal risk. If you wear FFP2 or better, and are cautious (leave clothes worn outside at the door, wash hands/surfaces after putting groceries away, wipe any suspect cans, packages with soapy water, etc. ) you likely can do your own shopping again. IMO it's better to develop good infection control practices as part of daily life, instead of trying to put yourself in a bubble indefinitely. IMO the former is more sustainable than the latter.
And in that vein, please make sure he wears an FFP2 or better when cycling, and puts in lubricating eyedrops, or wears glasses/goggles that stops airflow to the eye area. IMO that's safer behavior when dealing with airborne transmitted diseases. Because it would be awful if you did all this "avoiding everything 24/7" and he got ill from another cyclist coughing on a windy day. It's a rare, unlikely event....but if you are in a population dense area, it's more likely than not. I am in a population dense area, so I think about it. If you can smell their cigarette smoke from across the street, any germs they are spewing out could be hitting your face. (I think going outside on a windy day, forgetting my mask, got me a cold (thankfully only a cold) earlier this year. I could smell the workers' ciggys and one was coughing. There is documentation that airborne bacteria have crossed oceans before. So while it's EXTREMELY UNLIKELY it's possible.) So I am trying to just be "preventative" rather than avoidant. Because there is only so long I can be "avoidant" without going crazy at being cooped up inside, not doing any "normal" things. But, I also haven't done anti CD-20 treatment and might think differently if I had.
Thank you SofiaDeo.It was kind of you to give such a thoughtful reply.
We are in a very densely populated area and I shall remind him about wearing a better quality mask… he does wear one, but could improve on the quality.
That’s certainly given me food for thought.
Thanks again.
Stay safe, Fran 😷
Beatirce!!!
Let’s face it, we all want to get back to normal but for the population that are immunocompromised, like us, there is a new normal. We have basically given up dining inside of restaurants. I have given up taking meetings for business inside enclosed spaces. I don’t make excuses, I just say no thank you. I do not miss any of it because, of the potential consequences.
Here’s something to make you laugh, I hope. In my 20s and 30s I got to do a lot of carousing and barhopping, but when I hit my 40s I couldn’t do this anymore. When I got married, all of my single friends, that wanted me to go to concerts and fly around the world and do fun things, well they eventually all dropped off! When we had kids, all of the fancy dinners out, the plays, and fun sophisticated fundraisers, went out the window! When we moved away from the beach, to get to a beautiful big backyard for the little children to be playing & be close to school, there went my daily walks at the beach and all of my friends that I would see on my way to get coffee.
If you think about it, life is a series of changes and there are a lot of nice things that get left behind. Them’s the facts!!!
Now I live a quiet peaceful life, I get lots of sleep, and the changes we have made because of Covid are just changes. That’s all.
Yes, I appreciate that there are changes in life and COVID-19 has brought some of these on. It's just hard when you have to restrict what you can do .....
I have been having dreams a couple times per week where to my horror I am not masked in a crowded public place. That is really something to have this enter my dreams, I was surprised. My community has remained at only 10% masked since May when things loosened up in my state. I mask and distance as if my life depends on it. I made no changes or allowances when others ditched masks and precautions, except bought the best N95s I could find and double up with surgical over N95 to counter mask free folks.
Thank you for all your comments - really helpful and insightful.
After spending days in hospital and endless visits to different departments, sitting with unmasked people in waiting rooms, forgive me if I take the risk of having a meal out or a visit to the pub now and again, while I appreciate the need to be careful we also have a life to live. My haematologist told me to be careful but not paranoid (his words not mine).Dave.
Easing restrictions in the UK actually makes it more dangerous for CLLers. New infections in the UK remain very high - near 40k/day. Death rates have dropped but 4.6k Brits will still die over the next 4 weeks.
#COVID19 cases and deaths in the UK
NewdawnAdministrator
I’m a little concerned about the new variant B.1.1.529 (Omicron) strain detected in South Africa which has led to several countries going onto the U.K. Red List for travel. Expressions like ‘it may be able to evade the vaccine’ strikes additional terror to us.
The World Health Organization will hold a special meeting later to discuss the variant.
Let’s hope it doesn’t reach our shores!
Newdawn
I'm in the awkward situation of having started a new job as the chief executive of a UK heritage charity at the end of August, and my office is in a heritage attraction that has tens of thousands of visitors every year. I had to consult with my haematologist and immunologist over whether I could even take the job; they said I could so long as I continue to be careful. For reference, 16 years on W&W this January, so I'm perhaps less at risk than some forum users; but here are the precautions I take following advice from my specialists:
1) In any shared space (both indoors and out), I wear a mask.
2) I make sure that meetings are socially distanced.
3) I've been open with staff and volunteers about my clinically vulnerable status (though not the cause of that status).
4) I use elbow bumps and fist bumps instead of handshakes.
5) I don't attend events where the site is likely to be crowded, even if outside.
6) I carry my own hand sanitiser - and use it.
7) I drive myself to work; no public transport.
8) While I've let it go ahead, I've insisted on strict protocols for the office Christmas party: max capacity, no shared food or drink, proof of vaccination or same-day negative lateral flow test, etc.
9) I stick to my office a lot more than the past chief executive, which initially caused some consternation, but now my status is better-known, we
But I acknowledge that the fact that I'm chief executive, and therefore in charge, makes it easier for me than many people in this situation; I can set the rules.
One of my main issues is engagement with visiting politicians. We rightly keep this as an apolitical forum, so I won't go into specifics, but I will note that politicians from one national party are far less likely to wear masks and to insist on shaking hands than politicians from the other national parties. I'd ask forum users not to second-guess this point; I note it as a point of fact rather than as a political judgement.
I'm facing another issue with offers to join projects in Chile and Paraguay in 2022 in an unpaid advisory capacity. Offers of all expenses paid trips to South America are lovely; all expenses paid trips to South America in the middle of a pandemic, less so.
At home, my wife and I continue to wear masks when in the centre of town and in shops. I recently stopped accompanying her to the supermarket on Saturday as it gets busier in the run-up to Christmas; I'll start joining her again in January. My wife was recently excused from jury duty when she explained that she lived with a clinically vulnerable individual; the need to take public transport at rush hour with almost no one wearing masks was too much of a risk. They were very understanding about this.
The rise of the Omicron variant permitting, I will be flying to the US in February, but this is due to a pressing family illness; this may be my last chance to see my elderly father. I'm taking precautions here as well. I've shelled out for business class (I know that I'm lucky I can afford it; this isn't an option for many of us) and will use airport lounges like they're going out of style; so I can have a degree of separation from other travellers, however imperfect.
Get a portable air sanitizer/hepa filtration unit for your office. There are ones you can wear around your neck and small sanitizers for use in hotel/conference rooms/airport lounge when traveling. If you wish, PM me about various brands, I have sanitizers/air cleaners everywhere I go.
Politely refuse to shake hands; you are immune compromised. I put the need for distancing/masking on ME in public: "please don't move closer, I am immune compromised and I need to stay distanced from people" "sorry I don't shake hands, I am immune compromised, thanks for understanding" etc etc. So far I haven't gotten any pushback. And I smile when I say these things, others can tell by my eyes crinkling behind the mask that I am not saying this in an "I am lecturing you" manner.
Hi Vakraas:
Congratulations on your new job! It sounds like a much better situation than what you experienced in Egypt earlier in the pandemic plus you will be able to see your wife while working this job since you are both in the U. K.!
I empathize with your predicament as I am preparing to return to a more normal work routine - Omicron aside for the moment - in January. I was discussing my concerns with the NP that supports my CLL specialist at my recent tri-annual monitoring appointment and she suggested I take an antibody test to assess the effectiveness of my 3-Covid vaccines. I was surprised by this suggestion as four months prior the Fellow who saw me at my last appointment wasn’t keen on this type of test due to its inconclusiveness. The NP stated that while not perfect these tests do provide information that provides a data point as to how I may have responded to the vaccines. Also, she mentioned that as more CLL patients in their practice have these tests they gain additional insight. Thus, I plan to get this test next week. Have you taken the Covid antibody test? Have you had your immunoglobulins tested? Having these two tests would give you some valuable insight into how your immune system might respond to a Covid infection. Obviously, you have a protective plan you are following at work but having more information might provide you with piece of mind. Have you had many infections in general? Good luck with the new job!
Best,
Mark
Thank you, Mark.
I've had both a COVID antibody test and immunoglobulin tests; the former not for some time (so scope for revisiting that one), and the latter every year, allowing tracking of results. Like many of us, I have acquired hypogammaglobulinaemia, and my immunoglobulin results are either at the very bottom end of or below the standard range. So yes, I have a fairly clear idea of my level of risk: greater than average members of the public, but not as bad as some CLLers.
But following the Prime Minister's news conference yesterday, it looks like I'll be introducing stricter staff and volunteer protocols at work tomorrow. Lucky me.
And finally... thanks for the congratulations; yes, it's a much easier commute!
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