I think this forum is an amazing thing and im sure i’ll chevk in often. Tnank you
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Hi @GenesisDevice and @Leigh65
I am also from York and have been diagnosed with Chronic lymphocytic leukaemia (CLL)
It is quite scary in the initial stages but the forum is great and I think we are quite lucky where we live for medical care
I hope you are both okay
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Hi there.
How are coping with everything?
It all seems too much at tje moment i feel.
I developed a soar throat yesterday, and now worry my boddy cant handle it.
The slightest thing and it makes me worry
Is this normal?
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It does feel a bit much in the beginning and is really overwhelming at times
I know I struggled with things and every little twinge and infection worried me so much . I found that infections can last a little longer than they usually did but I generally feel pretty much as well as I always have and this is my new normal with just a little more worry occasionally We are all very individual though so please speak to your specialist nurse if you have one and you have some concerns, they are there for help and support as are we here on the forum !
Please be patient and kind to yourself you are navigating something new and it’s important to take time to process all that is going on
Let us know how you are getting on !
Best wishes
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Hi @GenesisDevice I always say my thoughts and emotions went on high alert when I was diagnosed.
Yes, I also remember feeling that it was all too much too.
As for your sore throat perhaps if you are concerned just see your GP.
@DottieB has given you a brilliant reply.
Really be kind to yourself
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I hope you are feeling a bit better today @GenesisDevice.
The group I mentioned also offer a buddy system where you can speak to another Chronic lymphocytic leukaemia (CLL) sufferer over a few weeks and share your thoughts and worries with someone who really has been there. I just remembered this, it’s a great idea and it might be useful? I thinks its over the 'phone. See CLLsupport.org.uk
I know that Marie Curie also offer free counselling for a few sessions as well, if you think talking to a counsellor might help. Counselling is so expensive, it’s a big relief to me that things like this offered to us.
Once I had my diagnosis, I was much better (it was waiting for the diagnosis that derailed me) although as I said earlier, I have some other conditions as well, so getting this in addition does sometimes feel pretty heavy, although I am usually able to put it aside.
Oh, I am also taking part in a PhD study on Chronic lymphocytic leukaemia (CLL) and active monitoring run by Sheffield University; a doctoral student is looking at how this affects people differently and the ‘results’ will be fed back nationally. It could help a lot of people newly diagnosed. You have two online chats with the student (Kate) and then keep a diary for six months with your thoughts. Not sure if that would be of interest, but it has been an additional tool to help me process things. I know Kate was taking on more participants recently. Let me know if you would like her details, she’s really lovely and used to be a haematology nurse.
Hope I’m not overloading you, just wanted to share things that I have found of use. It does take time to process, for sure, but there seems to be a lot of light at the end of the Chronic lymphocytic leukaemia (CLL) tunnel for us.
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Hi.
Just suffering the joys of a head cold at the moment.
What fun.
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Sorry to jump in like this but I had to comment about @Leigh65, @DottieB and @GenesisDevice all living in York and with Chronic lymphocytic leukaemia (CLL). What are the chances?! Hopefully York hasn’t got any issues with environmental carcinogens, unsure how that could be checked for 
Also, great username @GenesisDevice from my favourite Star Trek 
I hope you’re finding the forum helpful.
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Hello.
Thank you for kindly remembering 1982, The Wrath Of Khan. Now i feel oldish.
Had a bit of a week this week following my diagnosis of Chronic lymphocytic leukaemia (CLL) on the 10th of April.
After starting with a tickly cough on Monday evening, progressing to a soar throat on Tuesday morning, and a lovely head cold by Tuesday evening, i can safely say i now feel much better, and hope to be rid of the effects fully by Sunday evening.
Thank you paracetamol!
My conern was that ive picked up this bug from work (i work part time in a Sainsbury’s (Monday evenings and Friday afternoon and evenings)) and im usually on the self scan area, interacting with numerous customers and quite often approving purchases for paracetamol based products (lemsip etc). So i recon ive picked up the bug during my Monday shift from a poor person suffering a cold.
It’s clear i’m going to have to wear a face mask to protect myself going forward, as well as using hand gel etc.
Not what i wanted to have to do, but only sensible choice as far as i can see.
Just wondering what everyones experience is, if similar, how do you cope?
I’ve been shopping today as a customer and again was masked 
. I dont enjoy it and feel self concious and a little embarrassed if i’m honest.
Beyond that, my wife had a little snap at me today, i think i’m being a bit irritating due to my state of mind, so i guess I’m feeling isolated at the moment. Appllogies for wallowing, just having a horrible day.
Thank you everyone for your kind words to date.
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Oh @GenesisDevice certainly do not apologise for a little wallow, although that is not how I saw it.
Who knows where you picked up your bug, but perhaps have a word with your boss about a less customer facing role or different shifts.
I attach the link from the Blood Cancer UK money and work
Blood cancer: money and work | Blood Cancer UK and reasonable adaptions.
Yes, a mask is a good idea in some situations.
I am past feeling embarrassed now, my health comes first.
Verbal words really hurt me whether justified or not and I retreat into my shell and yes, I feel isolated as well.
However I reckon you have done the right thing posting on here.
My thought for the day is ‘Your day is what you make it’
Keep posting and really look after yourself
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Good morning Erica
Today will be a good day
Thank you
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Hi GenesisDevice, if I worked where you do I’d probably wear a mask too. My haematologist advised me ( remember we are all different with different conditions) to wear a mask when in an indoor crowded area especially in winter when there are lots of infections about.
This has been my first winter with Polycythaemia vera (PV) and in practice I wore a mask when at the doctors/hospital/pharmacy on buses when crowded or people were coughing/sneezing. I was self conscious at first but Im not now, and it is definitely better than spending an afternoon in A&E.
I have got used to always carrying a mask with me and if it makes me feel more comfortable I wear it and sometimes i wear it because it relaxes my partner. Though this sounds a lot it may only be once or twice a week.
On plus side it gave me a great excuse to avoid parties I did not want to go to anyway.
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Hello my name is Serina.I am super excited.It sounds odd but I felt the stress and anxiety lift a little when joining like these are people who understand. Im not sure I do.My Dad was diagnosed with Myeloproliferative neoplasms (MPN) Myelofibrosis.In less than a month he has Acute myeloid leukaemia (AML)
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Hi @Serina I have responded to your other post and it is good to know that you are getting to know your way around our forum.
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Hi My name is Ruth and I live in Crewe. Just been diagnosed with Essential thrombocythemia (ET) and have a further appointment shortly to discuss my going on hydrea
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Hi @Ruth3 and welcome to the forum.
I know there are lots of forum members who will be able to share their experiences.
How are you feeling about everything?
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Hi Nicholas.
Thanks for the welcome. I’m feeling OK at the moment about the diagnosis but a little apprehensive about the possible side effects of the treatment.
I don’t think I’ve got the hang of using the forum at the moment.
Ruth
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I’ve got your reply so you’re doing something right!
I’m glad you have an appointment soon so that you can discuss everything. Often waiting is the hard bit. Get all of those questions written down.
If you need any information let us know and we can send you some links 
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Hi @Ruth3 I am so glad that you have found us, welcome.
I hope others will be able to share their experiences for you.
I reckon you have a mastered the forum rather well.
Look after yourself and please do keep posting how you are getting on.
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You have posted just fine @srijanapoudel, welcome.
However this is a UK support forum and we are unable to comment on test results or their legitimacy.
It must be so difficult for you as you obviously care so much for your bf and you are powerless to help and naturally so worried
The medical services might be very different in different countries, I do not know.
Look after yourselves.
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