Hi
I have just been diagnosed with Chronic lymphocytic leukaemia (CLL) just before Xmas
I was wondering what immunisations I need to book in for myself ?
I am 58 and working full time still but already finding I’m tired but not sure if that’s just my anxiety kicking in .
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Hi @Mandy3 a great big welcome to our forum.
Very personally, not a medical response, is that it is actually the other way round and that you book an appointment at your surgery and talk it through and see what they recommend and provide for you with your medical history.
I believe that you are right anxiety can cause all sorts of things. I also do not deal with what personally stresses me well either.
It is natural to be in shock after a diagnosis and I was in shock for a long time.
Fatigue is a common side effect of Chronic lymphocytic leukaemia (CLL) and I have found that I have got to know myself and how I tick.
There is a lot of useful information on the Blood Cancer UK website, but I will copy you the link on fatigue
Blood cancer and fatigue | Blood Cancer UK
I found keeping a sort of diary helped me with what I did and how I felt.
My fatigue can set in immediately or up to 48 hrs later.
My fatigue can come on by what personally stresses me, emotionally physically, medically or practically.
Sometimes I need to rest or nap other times fresh air a reasonable exercise helps me.
I always check all my symptoms out with my medical team as I believe we are complex beings.
I have had Chronic lymphocytic leukaemia (CLL) for 20 yrs so any questions please ask for my personal experience.
The Blood Cancer UK support line is also there for you on 0808 2080 888
The main thing is to be very kind to yourself and look after yourself and I look forward to hearing more from you…
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Thank you for your support. I am on an emotional rollercoaster at moment and don’t know how I should feel. I do know that until I get my scan results on 5 feb I’m finding it hard to focus on anything. I’m finding it hard to be nice to people who say they have googled my condition and it’s going be fine and the one I have is the best one to get!!!
People ask me how I feel and honestly I have no idea how I should feel and I swing from I wish I didn’t know to good job I know constantly.
Good to know lots of others on here and reading sone of the posts has already helped me feel normal x
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Oh @Mandy3 I bet a lot of us really agreed with your post.
Those conflicting roller coaster emotions and thoughts.
What I have learnt is there is no right or wrong way to feel or think.
As for what other people say, my one that really, really gets me is ‘Oh, you do look well’ when I am really feeling yukky.
I just let it go over me now and think that there is no manual about what to say or how to respond to me.
I don’t get into responding to what is said by others, usually the person’s heart is in the right place and they are only trying to make both of us feel better.
Yes, I think that you might be normal, whatever that is. xx
Hi @Mandy3,
I am so pleased you’ve reached out to us & i hope you are doing okay today?
It is no wonder you are feeling anxious and uncertain. With Christmas and all that a new diagnosis brings, I would imagine you’ll have a few unanswered questions. Therefore please do know if you would prefer to talk to us, you can call our helpline at any point- Blood cancer information and support by phone and email | Blood Cancer UK.
I think your question about immunisations is a really brilliant practical one considering you are just newly into the world of Chronic lymphocytic leukaemia (CLL). In case it’s useful, l have linked here to our webpage information around staying safe- Blood cancer and staying safe | | Blood Cancer UK. As Erica has already mentioned, your GP will be able to book you in for those you are entitled to.
If you are seeing your haematology team in February it would be a good idea to note down any questions you have and think of between now and then as we appreciate how overwhelming this time can be.
Take good care, Lauran
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One big thank you for making me feel ok (ish) and for helpful info x
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Have spoken to gp and booked immunisations 
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That’s really good news @Mandy3 that your GP has acted so swiftly., please do let us know how you get on.
Look after yourself
Hi @Mandy3. That emotional rollercoaster is so familiar to us and it’s really tough.
I don’t think o would’ve have been able to explain how I felt. It was all a bit surreal and I didn’t know if I was coming or going.
I’m glad you found us and find comfort and support on the forum.
I bet the 5th Feb seems like a lifetime away! X
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Hi, I’ve also got Chronic lymphocytic leukaemia (CLL) and been told to get the Covid, flu and shingles vaccines. Just make sure they don’t give you the live shingles vaccine as this really won’t be good for your immune system
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Indeed the 5 feb feels so far away. I just can’t seem get my head round this as I was asymptomatic and just went to a&e for a suspected dvt after long flight as had pain in my calf.
I have access to my medical record and that how I found out as the hospital wrote to my gp. I had to Google what Chronic lymphocytic leukaemia (CLL) meant and boy that was a shock.
The consultant I have is lovely and explained it all but even that I had to wait 4 weeks from when saw the letter.
Anyway I’m in the system now but would just like those scan results to confirm stage.
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I think we’ve all been guilty of googling. I know I did!
I’m glad you’ve found the forum and Blood Cancer UK as they will have all of the information you need.
It’s great that you have a good medical team - it makes all the difference.
Please keep posting and let us know how you’re doing. We all understand how hard waiting is. On the forum you can just be honest about how things are for you and there is always somebody to listen
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Hi @Lynn7 a great big welcome and please do look aft the Blood Cancer UK website.
I have had Chronic lymphocytic leukaemia (CLL) for 20 yrs and I was diagnosed by a Gynaecologist after a minor op.
As @Mandy3 we are in the system.
However appointments in the future seem an age away and that anxiety starts to set in every time.
I would say this time gives you a chance for you to get a set of fears and questions down.
As @Nichola75 I also find this forum is the one place I can say how it really is for me and someone will relate and I won’t feel judged or alone.
Let’s all be extra kind to ourselves this year and keep posting
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They are also giving me the pneumonia vaccine
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