Hi @MarieJ1979 yes, it does feel a bumpy ride sometimes and I find it is being pleasantly assertive and persistent.
It might be worth giving the Blood Cancer UK support line on 0808 2080 888 and see what they say.
I have found letters from the hospital sometimes do take rather a long time and be prepared that, if you are anything like me, actually seeing the words in black and white can be quite a shock.
You are doing fine and be really kind to yourself.
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Thanks Erica & Tanya,
I hadn’t thought about how I would feel when the letter arrives but I think it might be upsetting. As advised I will give myself time and be kind to myself.
I’ve re-read the links on the website ref. vaccines etc. and avoiding infection. I’ve also got the number of a haem nurse at the hospital.
It’s strange but I’m not frightened of the Chronic lymphocytic leukaemia (CLL) itself but the possibility of secondary issues and infections is scaring me.
I have a holiday booked in Cyprus over Easter. I’m going to do my best to enjoy that.
Best,
Marie
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Hi @MarieJ1979 it is interesting but you are right when you say it is the secondary issues and infections that are scary, that is why I think it is really worth keeping your team aware of symptoms early.
I have had quite a number of infections since my diagnosis 19 yrs ago and they have been treated satisfactorily, sometimes it just takes me longer to get over.
Your holiday in Cyprus over Easter sounds really appealing and I look forward to hearing all about it.
Enjoy
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Hi Everyone,
Having still not had any written diagnosis of my Chronic lymphocytic leukaemia (CLL) I decided to get a second opinion. I thought I was stage 0. My new consultant has put me at stage 1 having found some small lymph nodes in my neck.
We know my bloods were fine in 2019 and that I’ve probably gone from stage 0 to 1 in approx. 3 years. Is there any rhyme or reason to how quickly a person progresses through Chronic lymphocytic leukaemia (CLL) stages? Again I’m thinking the worst.
I have also been offered genetic tests to discover what genetic markers I have. At the moment I’ve declined. At this moment in time I don’t think I could cope if my prognosis was on the poorer side of the scale.
Have other people faced these choices and wondered the same as me?
Feeling particularly low today. 
Marie
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Hi @MarieJ1979. I’m really sorry that you are feeling so low today. It’s a horrible feeling when you have days like this but I’m glad you have shared how you are feeling with us.
Sometimes we need time to process the information we already have before we find out something else. Just take it at your own pace.
Hopefully others will be able to share their experiences with you.
I hope that tomorrow is a little easier. We are all here if you need us.
Sending lots of love X
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Hi @MarieJ1979 I am so glad that you have posted when you feel so low.
The shock of your diagnosis will take time to process, I know it did for me.
Don’t forget that you are not alone you have your forum family many of whom will have gone through similar feelings to you.
Remember that I have Chronic lymphocytic leukaemia (CLL) and was diagnosed 19 yrs ago and I have always been on watch and wait, others on here have had treatment since their diagnosis…
I have never been offered genetic tests.
I jhave no idea what is round the corner or when.
If you would like to talk to someone the Blood Cancer UK support line is there for you on 0808 2080 888…
The important things are you keep posting and be very kind to yourself
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Hi Erica,
I think for the time being not knowing what is round the corner is the place I’d like to be too. And who knows I might hit that 19 years mark too 
Best regards
Marie xx
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Please do not forget to apply for a medical exemption certificate. You will then be free from all charges no matter what the medication is for.
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I have just had my first cold for four years. What a shock! No idea where from as although we were away we were outside every day. Inside only to go to the toilet or order a cuppa or ice cream. Always wearing a mask inside anywhere. But have been put on steroids, because my asthma control dropped, and antibiotics as after six days I was showing no sign of improvement. Feeling better today thank goodness. Not used to such an ill and depleted feeling! My energy levels are usually quite good.
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It sounds like it’s really knocked you for six!
I’m glad you are starting to feel a little better each day X
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Wow, @Spimula your cold has really hit you hard, and you were obviously being so careful.
If you are anything like me you do not realise how rough you felt till you start to feel better.
Take lots of special care of your yourself, it always takes me longer to build back up than plummet down.
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Thank you. Yes a bit of a shock. Not keen on steroids and antibiotics mix but my doc reckons it’s the quickest way back to “normal” . He lets me have both on stand by, and I have a telephone conversation before I start the dose. And yes you are right, getting back up is harder!
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