Sorry i really don’t understand how to joi in these chats. I wanted to join the Ask the Nurses on Infection.
How careful should one be in everyday life? I have P.V. and wear a mask whenever i am on public transport and in busy shops. I sit on the end of the back row in church. I avoid all indoor crowd situations. Am i being over-cautiius? I am particularly afraid of contracting Covid.
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Hello @berylsmart, nice to hear from you. I’ve got Polycythaemia vera (PV) too and love how careful you’re being whilst continuing with your life and socialising.
I know some folks hate wearing masks or feel they’re an infringement on their freedom or indeed don’t think they work against viruses, but it doesn’t seem like that much bother to me to keep one nearby and put it on in busy places.
Purely anecdotally, but I’ve never had COVID-19 and yet flew internationally, took trains and buses, went to cinemas and the occasional pub garden all with my trusty mask on. Thinking about it, I’ve had the least number of viruses of my life during the pandemic! Masks are clearly great in my opinion 
Perhaps @BloodCancerUK_Nurses might advise you with their expertise?
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Hi @berylsmart how cautious you should be is a very personal thing.
Also very personally I think however careful I am there might be an element of the luck of the draw.
I also sit at the end of rows, near windows and doors etc.
I hand sanitise more.
I am fully vaxed.
However I probably do not wear my mask as much as you.
Perhaps if I am happy with the amount of caution I am taking and if I took less caution it would make me more anxious, then that might be my dividing line.
I don’t know if that helps.
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Hello @berylsmart
Thank you for posting and it is understandable you ask about infection control and prevention. It seems like you are making decisions that lower you risks but that still allow you to go out and see other people. May I ask whether you are taking medication for your Polycythaemia vera (PV)? Your blood counts and any treatment are likely to be the best approximate guide to your risk.
We have some information here around Coping with the risk of coronavirus | Blood Cancer UK and it does say that it is important to make decisions that are right for you and your individual circumstances. Your treatment team, who manage your Polycythaemia vera (PV), can also help you manage this as they will know your blood counts and relative risk. Unfortunately there is not a precise risk calculator but that is something our researchers are looking into as we know the profound effect that the pandemic and shielding had on our community.
I would suggest that keeping up to date with your COVID vaccines and being mindful of the COVID treatment assessment process if you are eligible too Antibody and antiviral treatments for people with blood cancer | Blood Cancer UK
If you would like to talk this through with us please do give the team a call: Blood cancer information and support by phone and email | Blood Cancer UK
Best wishes
Gemma
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Hi @berylsmart no you are not being over cautious at all especially about contracting covid. It causes anxiety so risk assess any situation that you may encounter and do what’s right for you and comfortable with.
Personally I’m still shielding and very happy to do so as I’m permanently immunosupressed.
I risk assess anything that I have to do outside of my home.
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Hi @berylsmart
I too have Polycythaemia vera (PV) and work at a school so like you was very nervous, apprehensive about catching anything esp while being on treatment. It’s important to know the condition itself isn’t much of the issue moreso the treatment you are on.
I don’t so much where masks anymore but do keep my distance from people whom are ill.
During my diagnosis I’ve contracted covid twice and sought my medical team as soon as I tested positive to which I was swiftly moved to have antivirals. I didn’t suffer majorly from having covid and so far just being sensible and in control of what and when I’m feeling comfortable is serving me well so far.
I think until you’ve become exposed to a cold or flu or even covid you’ll never know how you’ll feel or how your body copes… so it’s a tough call to say whether your cautious approach is serving you well or hindering going and doing what you want to do.
I think any decision you make won’t be right nor wrong it’s a case of making a choice of what makes you feel good and not regretful of the decision you make.
I think what I’m trying to say is if something does catch up with you be sure to know the protocol of not ignoring symptoms and speak to your cns, gp and medical team.
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Thank you Gemma. That is helpful. I have tended to avoid “crowd” social occasions completely, which can feel quite isolating at times. I am completely vaxxed. I am flying soon for the first time since diagnosis, so am somewhat apprehensive. I am on the chemotherapy drug Hydroxycarbamide. I shall mask up and pray. Thanks for you reply.
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Thanks. That’s helpful. A friend told me i was being unnecessarily cautious and that made me wonder.
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Thank you Rammie. That is encouraging to know that you have coped twice with Covid without too much ill effect.
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I love people who think they know better 
They won’t be the ones having to deal with catching anything
Ignore them and find a new friend 
All my friends are happy to keep me safe
I have to say so have the hospital depts I had appointments in and having my eyes tested at home
I have had more issues with the hematology dept who should know better
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It was encouraging to know the person didn’t suffer too badly when they had Covid. However, it could of course be too late if one waits to find out, but I realise she is absolutely right. I won’t know until I catch something, but it sounds as if you and I possibly do something similar. My friends know to cancel arrangements with me if either they have something wrong or have been in close contact with someone ill. I too risk assess situations. However, I do go out to places, exercising caution.
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Hi @berylsmart me again, yes, some people wanted to tell me what I ‘should’ be doing.
I now choose to spend my time with people who I enjoy spending time with, that I can laugh with etc.
I have found my friends were actually really pleased to meet lunchtimes at weekends.
Yes, they avoid me if they and there’s have anything I might catch.
I have also learnt to say ‘NO’
I do Pilates classes as I weigh it up and for me the emotional and fitness benefits outweigh the risks.
I am happy not to do evenings when my fatigue sets in,
Yes, we are all different and do whatever suits you best.
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