CLL and Live Music Events

My haematologist (nice chap and he knows his stuff) has advised against me attending any live music events because of the covid risk, before everyone piles in with vaccines etc… let me explain.
He said that even though I will be vaccinated there is still a very good chance I would end up in High Dependancy.
I can understand why he has said this because even though I have the flu jab every year and have had the pneumonia jab too I have still had bad chest infections and 4 bouts of pneumonia, including being hospitalised once last June since my CLL diagnosis in January 2018. I am currently on Watch and Wait.
Has anyone else received the devastating news of being advised not to attend live music events?

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Oh, @Billy1mate, I know how much you love your live music events so this advice must be devastating for you.
I am not medically trained but it does actually sound very sensible advice I am afraid, especially given your medical history that you describe.
I am definitely do not plan to get into a crowd situation or where people might be expelling their breath towards me, better safe than sorry.
I also have CLL and am on watch and wait and my consultant said to me that it is my fatigue and compromised immune system and infections that will probably affect me most.
For my daily exercise I walk round and round a recreational field with my Walkman playing all my favourite music in my ears, absolute heaven.
Have you any thoughts on what you might be able to do as a substitute?

Hi Erica, maybe I’ll buy a military gas mask and stand at the back🤣. There is no substitute for live music but I agree, impossibly difficult though it is, I think I’ll have to sell my tickets. That will be Glastonbury out of the window too.

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I am so, so sorry @Billy1mate .
Has anyone else had a similar dilemma?

Hi @Billy1mate

I understand where your haematologist is coming from. I always get the flu vaccination but three years ago ended up in hospital for three weeks after contracting the H3N2 virus and then developed sepsis. I’ve also had to accept it will be a while before I’ll be able to attend certain events where there are a lot of people. While we’ll have to be patient for a while longer, there is an end in sight with the vaccination roll out.

It may be another year or so before things will be safe for people like us to get back to complete normality but we should be able to slowly integrate back with some of the less risky things and certainly we should be able to spend time with family much sooner. Let’s just keep positive for a while longer.

As a substitute I’ve been listening to a lot of my old live albums and also watching gigs on YouTube. They even featured some from the Lemon Tree in Aberdeen, which I had been at myself.

All the best, Peter

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Hi @Billy1mate, I just wondered if you are following the Friday Forum Jukebox Club post on this forum, it’s a bit of fun for us music lovers. My choices often show my age !!!

Hi @Billy1mate we hope you’ve been doing okay since posting on here? You did absolutely the right thing getting clarification about your personal level of risk with your haematologist. But like you say, we can completely appreciate this couldn’t have been easy to hear. We’re always here for support.

and just like @Erica said, please feel free to also join our Jukebox thread :relaxed: here is a link to it: The Friday Forum Jukebox Club!

Take care and please do keep reaching out,

Su

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Mine’s a slightly different situation; same diagnosis (CLL, watching and waiting since 1995). But I sing in live concerts - tho’ the last one was over a year ago. (Best we’ve done since then is a virtual recording, which I reflected on in this blog post.)

I’m due for my second jab on 10 April, but given the news coming out of KCL about the effectiveness of vaccination in cases of CLL I’m not sure whether to rejoin the choir when it gets back together (after a year of Zoom rehearsals). The driver of my regular lift to rehearsals (who is an ex-GP, now guest lecturer at Kings) said I could rejoin after the vaccine came out - but she said that nearly a year ago and may well have changed her tune since then. :frowning: .

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That’s interesting @BobK99, I had forgotten about your singing talent.
It is a dilemma for you about re-joining the choir in person isn’t it. Heart v head.
I also have CLL and am watch and wait and the message seems to be that we do not know the effectiveness of the vaccine on people with CLL.
Please let us know how you get on and take care.

Hi @Billy1mate I love live music events too but never really got into festivals. It’s still difficult advise to hear though. At the end of the day the decision is yours but as the last year has shown us, there are other ways of getting involved and enjoying things so I hope that you are able to keep enjoying music. What kind of music are you into? I usually post a couple o tunes on the Friday Jukebox thread on here and tend to pick things that are a bit off the beaten track musically :slight_smile:

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@Erica , no I haven’t, I do popmaster everyday on Radio cabbage water (Radio 2).:rofl:

@Franko everyone should go to Glastonbury at least once , I love the place but CLL and the festival bugs and viruses (even without the Covid risk) don’t make for a safe place.

@BobK99 watch and wait since 1995, really? I’ve been told 3-5 years before treatment.

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Hi @Billy1mate and @BobK99 I also have CLL and I have been on watch and wait since diagnosis in 2003, but we are all different and I count myself as a very lucky girl.

Yep, really. Back when I was diagnosed I read a stat from Johns Hopkins that put the mean age at diagnosis at 71; and I’m still not 71 (tho’ I’m getting there - 70, come September). But I mentioned this to the doctor I mentioned before, and she said ir wasn’t rare for younger people to get it; oniy that it was typically noticed in older people, and diagnosed in the young only when found by accident. :wink:

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