Hello everyone......newbie here

[nanasu]

Hi to everyone here.

I`m Nanasu......age 68 now. I was diagnosed with CLL in 2011 and since then my WCC have been on a slow increase. Up to 50 now which isn`t that high compared to some people. I was under the care of my GP but I think he got a bit twitchy and referred me to the haematologist for a review so I`m now back under their care.

Must admit this Covid 19 is scaring me a bit. I have tickets to go see Riverdance on wednesday with some friends....to go or not to go is the question. I hate letting people down BUT!

I used to be a nurse and worked through all the MERS, SARS and bird flu outbreaks and never batted an eye but then, I wasn`t sick.

[JanEyre]

Hi Nanasu, welcome to a wonderful group of people who will help you on your CLL journey with lots of great advice. I am also fairly new on here and am so glad I found this site. I am in Australia and also have the same worries with this outbreak.

All large events here have been canceled . I don’t know where you are from and if your country has been greatly effected by Covid19 but I would be cautious about going.

I do wish you well.

Jan

[nanasu in reply to JanEyre]

Thanks JanEyre

I`m in the UK, East Midlands area and so far not that many cases of Covid 19 here. Spread round the rest of the country.

[cllady01 Former Volunteer in reply to nanasu]

healthunlocked.com/cllsuppo...

Please read the entry from AussieNeil which is a message from Dr. Byrd, a specialist in CLL

[ygtgo]

Hi nanasu

I've been living with 'pain management' since 1990 ... CLL 2006 (no treatment as yet).

I remember the day that I finally accepted the 'reality' of my condition.

I had an eye injury in 1990, 4 days after my eldest son started school. It left me with hemeralopia/photophobia, eye pain is not nice.

I was an engineer then industrial quartz glassblower, making decent money with a very young family and spent 18 months going between hospitals and work.

On the day I remember, I started off for work ... slowly.

At one point, I stopped and thought ... " If there is ANY doubt, there's no doubt " ... I turned and went home, having to tell Mrs ygtgo, " I'm finished".

With CLL I still listen to the wee voice in my head ... If there is ANY doubt, there's no doubt.

I've just received an invitation to my nephews engagement party ... I hate letting people down BUT!

The only thing that trumps the wee voice, is Mrs ygtgo's ' advice '...

... I call it nagging !!!!

ygtgo

[nanasu in reply to ygtgo]

Sorry I`m a bit late in replying; trying to work out how everything works here.

I can`t begin to imagine living with constant eye pain; migraine is bad enough but they go away.

I`m not going to Riverdance. There were 4 of us going , none of us in the best of health so decided to cancel. I`m disappointed but my health means more to me. Must admit it was a relief once the decision had been made.

Will you go to that engagement party?

[ygtgo in reply to nanasu]

No to the engagement party, I would hope that they'll postpone it 'til a later date.

As for Riverdance, buy the DVD and sit at home with a wee dram.

I used to go to see my favourite bands play, but now they come to me .

... I have a collection of music DVDs in the hundreds. I love the blues and the singer songwriters who plied their trade in the 60's onwards.

stay well

ygtgo

[Hidden]

DON'T GO! People just don't know how to keep their distance. It's too risky right now. When I was at the farmer's market the other day a woman grabbed onto me and put her face two inches from mine, she way trying to pray for me, I appreciate the thought, but I had to put my elbow in her face to get her to let go of me. I know that missing RiverDance is a huge disappointment, I would love to see them.

[Smakwater in reply to Hidden]

PacificCLL,

My WBC was in the toilet after a day of Gazyva infusion, I went to church and was greeted by a friend who grabbed my hand , pulled me in close and coughed in my face!

I had to stop going to church during treatment. The love was killing me.

JM

[Hidden in reply to Smakwater]

I know exactly what you mean. It happened a couple times yesterday, Terri who keep her horse here came over after I called her and told her do not come over we are in quarantine. She came up and tried to hug me! I have started putting my elbow up in front of my face.

[nanasu in reply to Hidden]

No, not going. That woman was most inconsiderate....some folk just don`t think. Hope you are doing ok

[GMa27]

Welcome!

Best not to go. Everything in the USA is cancelled. You are at risk. It starts with just one or 2 people then moves into groups then on & on.

😞

[nanasu in reply to GMa27]

I have a few on line friends in the US and they write about the dire state of the stores etc.

[Ironj]

I would cancel for sure. Or put a mask on if you feel compelled to go.

[JustAGuy in reply to Ironj]

Don't forget swim goggles or a scuba mask!

[nanasu in reply to Ironj]

Hard to find masks and they don`t do much any way....unless you get those really expensive ones. The ones we had at work at best only gave about 20mins protection. We gave up wearing them in the operating theatres for most surgeries. Worn when scrubbed for self protection.

[Miggins60]

Hi. I am in UK too and worry about the odd approach we seem to be taking to protecting people from Covid-19 and that makes me even more nervous. There is no specific central guidance for CLL sufferers but this site has been a great comfort and source of information. You’re not alone. I suspect we’ll be asked to self isolate soon as reduced immunity. I wish you well.

[nanasu in reply to Miggins60]

I agree about the odd approach but it`s typical of the UK...we always know best. (tongue in cheek)

We have 5 cases so far in my home town...that`s as of yesterday.

[JustAGuy]

Personally, I wouldn't go. It's your decision though. You could ask your hematologist if you want a professional opinion...

[nanasu in reply to JustAGuy]

Not going......group decision made and a big relief too.

[PattiM]

All shows are canceled in US.....

[nanasu in reply to PattiM]

Scotland are slowly advising shows etc to stop but not enforcing it; it`s voluntary at the moment.