An Introduction

[Woodwo]

Hi like so many of you I have CLL diagnosed almost 5yrs ago and am in the post treatment stage ( 3 yrs in March 22). I am very lucky since I have a supportive family who have been determined to keep me safe during these difficult times. I haven't been in a supermarket , pub, coffee shop etc since Feb 2020. My daughter/son take LFT before any visit - but I take my little dog (KC Cavalier) out for a hour walk most days. I do get some pressure from extended family and friends to visit but so far we have resisted. Not all people seem to appreciate nor are they sensitive to how severely immunosupressed folks feel about their situation and the need to take every possible precaution to stay safe. I suffer badly from shingles but have just had the shingrex (non live) vaccine. It is free to 70- 79 yr olds!!

[cllady01 Former Volunteer]

Welcome Woodwo! And, taking care and having others help in that taking care so all can be safer is a blessing. You seem to have a good routine to stay healthy.

I hope the shringx will do the job of keeping you shingles free.

[BobbyFour]

Nice to virtually meet you! I love every post that has things like ‘5 years’, as they give me another dose of an important medicine - hope!

[AnneHill in reply to BobbyFour]

You will like 21 years then. I take Ibrutinib and my numbers are normal. My immunity isnt normal and I need introvenus immunaglobulin every 4 weeks. It keeps the bugs away though. Anne uk

[BobbyFour in reply to AnneHill]

I literally copy each of these into a ‘Hope’ note that I read when I am down 😀

[AnneHill in reply to BobbyFour]

Dont get down. Make the most of the good times. Covid is making me down because I am ready to meet people. I took a risk and went to my sons house on Friday for a party. I really enjoyed myself and realised I need people and to socialise. I am aware that sounds selfish and most people feel the same.

I am plagued with poor mobility and like other people who have immunity issues we cant get on and enjoy life.

I have told myself to enjoy Christmas and next weekend put the tree up.

When I was diagnosed there werent the treatments we have today. Things are changing. I only worry about cll if I need to. I have been lucky that treatments have worked amazingly well and you have got cll at a time when there is a future.

Good luck, Anne uk

[Bikram21 in reply to AnneHill]

It’s a delicate balance between safety and sanity for sure! I was getting very low from too much isolation and spoke to my dr about it. I’ve now incorporated a few things into my day to day which is helping.

[BobbyFour]

Thanks Anne for the encouragement!

[Psmithuk in reply to BobbyFour]

Hi BobbyFour - I was diagnosed in 2002/3 and only started treatment this year - and it’s working well. Don't worry about treatment, there are so many vastly improved ways these days, and more on the horizon. Hope you can take courage from the fact that so many of us are doing so well there is nothing to post about, so you don’t hear much from us unless you ask!Cx

[morepork]

Sorry this was for Bobby Four , re encouraging posts. Hi from down here in NZ. I'm more a reader than a poster on this site but I lived and worked with CLL back here in W&W for 20 years without treatment so as others will tell you and as you no doubt know, 'one size doesn't fit all' in the rate we progress towards any treatment, and some never need any.

Regards

[MovingForward4423]

For me I took the step to get back to my life. I’m out and about, working and having meetings. I take precautions, and I avoid pubs and crowded restaurants. I’m younger and have a family to support, so shielding is not an option.

However, with this new variant who knows where I will be in few weeks. Maybe the we will be back on the merry go round.

[AnneHill in reply to MovingForward4423]

I feel safer going out if everyone is taking precautions. I dont go in supermarkets. I do go in big shops and coffee shops. This all depends on masks, hand washing or gel and social distancing. The thought of this new virus is scarey but I am relieved that people will take covid more seriously. I am going out for a meal next Wednesday lunchtime. My friends are really careful. I have decided that if waiters arent wearing masks I will ask them to.We can take lateral flow tests for the time being.

Things are going to change if Omicron proves to be risky. A lot of people feed off others and when I risked going to my sons house I hit it off with my daughter in laws friend and met up with my sons best friends. They used to stay at our house as kids. I realised that life was going on and I was sitting at home getting old. Anne uk

[Psmithuk]

Welcome, Woodwo, it sounds like you have it all sorted! It’s good to hear you are doing well, except for shingles, which is miserable for anyone. I hope the Shingrix works for you.Chrisx

[Jacksc06]

Hi. Welcome to the family, You are wise to take every precaution to protect yourself. I also find that people in general are ignorant to the fact of how susceptible us immuno compromised are to not only Covid but also viruses in general. Hopefully the Shingx will work well for you. Best wishes.

[Mystic75]

Hi Woodwo!Welcome, nice to meet you!

I am so glad you have a supportive family, who are taking your health into consideration.

Hope your shingles subside soon but glad you got the shringx shot.

All the best to you!

D.