My husband was diagnosed way back in 2010 aged 62 he’s been on watch & wait since then. However he also developed Essential Thrombocythaemia a couple years later for which he’s on hydroxycarbomide for. He was transferred from Chronic lymphocytic leukaemia (CLL) O/P clinic to ET clinic where they manage both conditions. He does get tired as he’s chronically slightly anaemic since starting hydroxy, otherwise pretty fit for a 74 yr old. He’s had x5 Covid vaccinations but unfortunately has not mounted any response & has zero anti bodies 
so we remain pretty cautious in what we do but he’s not still shielding as such. We mainly do outdoors stuff & only occasional indoor things with select people & in own homes or quiet venues that have good ventilation. He’s always been followed up with 3-4 monthly blood tests, although the Drs are very busy & tel calls short we do have a chance to ask questions (or I do 
he just wants to get off phone once they say bloods are ok) Our hospital has a Clinical Nurse Specialist that carries a phone 24/7 so we have a means of contacting someone, out of hours for emergencies only. I’m a ex nurse & like to have some ‘control’ over things so read & research everything which is how I got to hear about Evusheld so fingers crossed for that soon.
Interestingly although blood cancers are not hereditary his Mum had MPD but managed to live to 90 & his older sister Chronic lymphocytic leukaemia (CLL). His sister has had treatment for Chronic lymphocytic leukaemia (CLL) as became severely anaemic & developed fast AF (atrial fibrillation) as a consequence. She is clear of Chronic lymphocytic leukaemia (CLL) for the time being but has been left with haemolytic anaemia which is now managed with Erythropoietin injections.
Everyone’s journey is different and my husband has been told that both conditions are of the type that means he will probably die with them of something else rather because of them. Of course having any blood cancer can make treatment for other conditions more problematic but until Covid he was able to live his life normally & we travelled the world for which we are very grateful as now our world is somewhat smaller like a lot of peoples.
Long post but wanted to offer this for the newly diagnosed who must feel like being diagnosed in the time of Covid an extra burden to contend with.
Life is not always how we want it to be but we can still make the most of it, we do both have our ‘moments’ but his MH has been better than mine since ‘freedom day’ 
. Learning to say ‘no’ (as previous poster said) to something we are not really happy doing is a good lesson.
Thanks for this and encouraging for those of us who are still getting our heads around a recent diagnosis
Hi @Ali I think that you have done the right thing, please let us know what your nurse or consultant says.
Take lots of care
Hi @Ali, thank you for sharing this. It’s very understandable to have ups and downs, for some days to be better than others. That’s good to hear you’ve raised the neck swelling you’ve noticed with the nurse- don’t hesitate to follow this up if you haven’t heard back. Certainly it can be anxiety-provoking and it’s useful for them to know of any new concerns or symptoms on your end, as Erica has said you’ve done the right thing by informing them.
If you ever wish to talk anything over, or feel that you need some support, please do keep our support line in mind ( Blood cancer information and support by phone and email | Blood Cancer UK). I thought I’d also share a few of our booklets with you here, for reference in case it’s helpful at all-
-Your blood cancer diagnosis: What happens now? | Blood Cancer UK Shop
-Watch and wait fact sheets | Blood Cancer UK Shop
-Chronic lymphocytic leukaemia (CLL) booklet | Blood Cancer UK Shop.
Best wishes,
Tanya.
Hi
I am doing ok. I have a CT scan Monday for the Oxford research study. Get tired a lot but other than that ok. Thank you for asking
Hi @KayC please let us know how your CT scan goes.
Getting tired a lot is par for the course but perhaps keep your medical team aware and how it effects your daily living.
Look after yourself and use the energy you have in manageable chunks.
I’m going through a stage of feeling very angry with myself for having Chronic lymphocytic leukaemia (CLL). My husband and I like to keep busy and love our holidays and it’s affecting holiday insurance and our choices of what we can and can’t do because of me It may seem ridiculous but I’m annoyed at how it’s affecting our lives
Oh @KayC feeling angry is definitely very normal.
It is a stage of bereavement and loss and there are so many losses practically and perceived that we go through depending on our circumstances.
I have found my anger lasted a long time and can come back at any time, usually when I least expect it.
I look at myself from the outside and I look like a ‘normal’ person with quite a suntan at the moment from my morning walks, but insurance companies don’t like me and I easily feel fatigued and get infections.
I have found just pacing myself and concentrating on the opportunities of what I can do has really helped me.
We have been to some lovely places locally and around this country since my diagnosis.
There are a couple of threads on here about travel insurance.
You are doing brilliantly and I hope your honesty with your feelings will help you on here.
Be kind to yourself
Hi @KayC. I can completely relate to that as I’m sure so many others can! The holiday insurance really bothers me as well. Im are you managing to get away?
Yes we already had holidays booked prior to diagnosis and have an annual travel insurance in place. My travel agent told me I would be able to disclose it without having to be insured for it as I’m on a watch and wait no treatment or anything. When we reinsure next year I would sort it out then as I will have had my first cons
Hello Everyone on here, posting about on-going or recent exposure to Chronic lymphocytic leukaemia (CLL).
Well I’m posting now as I’ve also recently (3 months ago), been diagnosed with the very same, how lucky am I then?..NOT.
I certainly didn’t imagine for one minute that I would be in this situation, let alone taking time out to post something on a Blood Cancer Forum.
As a fit, active, healthy living, 67 year old vegetarian, I recently needed to have a right total hip replacement, due to advanced osteoarthritis. The blood tests taken as a requirement of the treatment highlighted a high white blood cell count, something that wasn’t identified prior to the actual operation. Instead I received a call on my mobile phone from my local GP, literally as I was talking with the post-operative release team, on the day of being allowed to leave.
To say I was shocked and alarmed to receive such a call in this manner, especially as my GP wasn’t aware I was in hospital undergoing the surgery either, would be an understatement. Needless to say, I told my GP I was going to shut the call down, due to the situation I found myself in and would follow-up thereafter, which is another rather long-winded story, that I won’t expose you all to.
I remain, as indeed I was at the time of being advised of Chronic lymphocytic leukaemia (CLL), totally symptom-less.
I continue to go about my life, going to the gym regularly, about to re-start Yoga, eating healthily, mainly I have to say, due to my brilliant wife Nicole, who is the mainstay of healthy living within our environment at least. An incredibly positive influence in pretty much every way, now and ever since we first met. Something I really ought to tell her far more frequently!
I’m not usually this open about health stuff, as I don’t allow it to ‘get in the way’, as it were and I certainly don’t intend to allow Chronic lymphocytic leukaemia (CLL) to change this mindset.
A keen traveller, which to be honest, is one issue that exercises my frustration with this diagnosis, the impact on the availability and cost of travel insurance, due to Chronic lymphocytic leukaemia (CLL).
Enough for now, I simply wanted to ‘log-in’ and say hello, to see what enlightenment this forum might offer me as to how to deal with this unwanted scourge…
Hi
Welcome to the forum. I was diagnosed with Chronic lymphocytic leukaemia (CLL) in June last year. Like you it was found incidentally on a blood test but my lymphocytes had been high several times and no one had picked up on it so I was probably 2 years in by the time I was diagnosed. I’m 62 and like you keep fit and love my holidays so it was a shock but like you I’m determined to just get on with things. I do get fatigued so we have to manage our lives around that and make room for rest periods . We have 3 holidays booked this year , our travel insurance did go up which is frustrating I’m currently shopping around to renew and have had excellent advice from this forum about that. I’m sure you will find this forum helpful. Stay well
Hi @NobbyN and a big welcome to the forum. I can see @KayC has already replied. That’s the great place about the forum, there is always somebody to share their experiences. Although I have a different blood cancer, often our thought and feelings throughout our journeys are similar.
Your wife sounds amazing!
The cost of travel insurance really does increase. There are lots of threads on companies we have all used which would be a good read for you.
I look forward to finding out more about you.
Nichola 
Hi @NobbyN a great big welcome and thanks so much for having the courage to post.
I was diagnosed at 53 yrs old with Chronic lymphocytic leukaemia (CLL) through blood tests for something else too and that was 19 yrs ago.
As @KayC says my main symptom is also fatigue, which I manage on a daily basis.
I was very healthy for my first half century, but not particularly fit.
I am now fitter than I have ever been, a Pilates girl and a walker, I have improved my diet, but enjoy the odd treat.
Please keep your mindset and continue the travelling which you enjoy. Yes, insurance will be more difficult to source and afford. See the link below
Travel tips and travel insurance - do you have any tips to share? - Living with and after blood cancer - Blood Cancer UK Forum
Now go and tell Nicole how brilliant she is and how much you appreciate her and anything else you can think of, she sounds a complete star.
I look forward to hearing more from you now you know where we are, look after yourselves and spoil yourselves.
Wow, what responses, all of which I really appreciate and thank those who have taken time to review my post and to reply.
Having initially thought and felt that this type of forum simply wasn’t for me, closing off the anxieties and negative thoughts as things for others to deal with and to talk about, I’m sort of beginning to think that perhaps, perhaps I might have been wrong.
I’m unsure entirely as yet, however, based on the initial responses, maybe I could connect more here than I envisaged had potential.
Rather too early a call to make, but then here I am, just as I’ve finished watching Graham Norton together with Nic’ and thinking about heading up to bed, as I was up at 4.45am today, thinking about a raft of ‘other stuff’, trying to get those things out of my head and now, as a direct result, feeling somewhat jaded, writing a follow-up post in reply to those sent out.
There must be something in this then…
And as a further update/admission, my user name is an old nickname I used to have when I was a kid at school, so ‘for the record’, I’m not really a NobbyN!
Crikey, I’m even making ‘confessions’ this early in the process: what is that all about???
We are just delighted to have you here - you’ve made me smile as you’ve chatted to both yourself and us as you write (so glad someone else does that too!) Hang around us a bit and share as you’re comfortable - the weird yet comforting thing is that we all ‘get it’ whether it’s the same or different blood cancer, whether we’re the patient or the loved one and whether it’s an off the wall thought!
So glad that you feel positive about the forum so far would be great if you stick with it. I understand your reservations I felt the same. I have been a nurse for 45 years so have spent the majority of my life caring for other people and not always for myself. Even since my diagnosis I have minimised things and told everyone I’m fine even on days when I’m not because I don’t want people to worry. So for me this is a safe area where I can reach out , ask questions and say how I really feel. Everyone understands as we are all in it together and there is always great advice but most of all support . Stick with us 
Hi @NobbyN you sure are part of our forum family so just do whatever feels comfortable for you.
I would really like to hear more about you sometime, but the main thing to take from our forum is to take care of yourself.
Great advuce for us all. Thank you kay x