Newly diagnosed CLL

Hi. Just wanted to introduce myself as a new group member. Just diagnosed last week with chronic lymphocytic leukaemia. Bit of a bolt out of the blue but I’m keeping very positive. I’m on a watch and wait at the moment. Be good to hear from others about their Chronic lymphocytic leukaemia (CLL) journey

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Hi @KayC,
A huge & very warm welcome to our forum! I am very pleased you have found us.

I am so sorry to hear of your recent diagnosis. It is understandable for such a diagnosis to be such a shock, it can be such an emotional roller-coaster. May i ask do you have good support around you?
In case it is helpful, we have a wonderful just diagnosed webpage offering some practical steps and questions to consider as you still navigate into your new world of blood cancer- I’ve just been told I have blood cancer | Blood Cancer UK. This page also links to our newly diagnosed booklet which may be of some help & is something you can order a copy of should you choose to do.

Please also do know that should you ever have any concerns our support service team are always just a phone call or email away and would be happy to talk anything at all through with you- Blood cancer information and support by phone and email | Blood Cancer UK

Look after yourself, Lauran

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Hi Lauran

Thanks so much for your reply. I am very lucky to have an amazing husband, great children and grandchildren and a lot of fabulous supportive friends around me. I have been a nurse for 44 years in various roles and it’s a bit strange to be on the receiving end of services .I will have a look at the just diagnosed site and know I can get support from yourselves which is great

Kind regards

Kay

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Hi @KayC a great big welcome to our forum, I am so glad that you have found us.
I was diagnosed with Chronic lymphocytic leukaemia (CLL) 18 yrs ago, at 53 yrs, and I have been always been on watch and wait.
I was on quarterly blood tests, but now it is 6mthly.
The main side effect I live with is fatigue and I have got to know myself and manage it.
I had my 70th birthday just before lockdown and it was my best birthday ever.
The one plus side of my diagnosis means that I re-assess my life and decide what I want to do and with whom. I have also learnt to say ‘No’.
As you say it must be a bit strange for you to be on the receiving end of medical services.
However probably what has really hit you is the shock, rollercoaster of thoughts, emotions and practicalities that I certainly had at diagnosis and for a long time afterwards.
It sounds as if you have an absolutely wonderful network of support around you.
We are also here for you and please do ask me anything you would like to know, I am more than happy to answer anything.
Look after yourself and be kind to yourself and I look forward to hearing more about you.

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Hi @KayC and a big welcome to the forum family. It’s great to hear you are staying positive. It all must have been a real shock and a lot to take in. I can see @Erica has already shared her story with you which is great. I have lymphoma - a different blood cancer but am also on watch and wait. You’ll find lots of people on here who can share their experiences and who understand. I look
forward to hearing from you X

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Hi Erica

Thanks for sharing your story. Wow 18 years that’s amazing and so reassuring for newly diagnosed people to hear that. I too am struggling with fatigue and need to make some adjustments to slow down a bit. I guess at the beginning of the journey we don’t know how it will pan out but it’s great to hear stories like yours. Thank you x

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Hi

Good to hear from you and to chat to people in a similar position is really helpful so I am really glad to be part of this forum. Thank you x

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Morning @KayC,
Aw i am so pleased to hear that you have a great amount of support around you and I’m certain they will also be a great source of fun & distraction & will no doubt be keeping you busy.
I can completely understand that feeling of suddenly becoming a patient when your role for so long is to look after others. I think that can certainly take some time to adapt too.
I hope you can find support in us and please do know Kay even if it is just simply to pop the kettle on and have a listening ear which is away from your family- we are always just at the end of the phone line and indeed we have such amazing peers amongst this forum.

Take Care & have a good weekend when it comes,
Lauran

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Thanks Lauran. I started looking on the blood cancer uk site for information when I was waiting for test results as you do and now that I have a confirmed diagnosis it feels right to join the forum and get involved. I feel sure I will find it helpful

Kay x

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Hi @KayC You are definitely part of our forum family and the Blood Cancer UK family too and as I said before I really look forward to hearing more about you and answering any questions you might have.
The main thing is you look after yourself and be kind to yourself and keep posting

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Thank you that’s great. I think I probably will have a few questions over the next couple of weeks once I get my head round things , I only got my diagnosis last week. I think you would be a great person to ask as you have been dealing with this for so long. Thanks for the brilliant welcome everyone x

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Hi. Its certainly a shock at first and diagnosed with Chronic lymphocytic leukaemia (CLL) 2 years ago it was difficult to know how to react. Take time to think it through. Tell only who you need to tell at first until you get used to it and understanding where you are. Being on watch and wait gives you that time. Given your background you might be better placed to understand things better than most but ask lots if question’s keep a record of all of your blood tests as it helps you manage the understanding each time you speak to your consultant. Hope that helps and best wishes

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Hi @TynLlwyn08. How are you doing.

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Thanks for your response I hope you are doing ok I’m surprisingly calm about it all not sure if that’s a normal reaction or if it just hasn’t sunk in properly yet. It’s nice to have contact with others who have Chronic lymphocytic leukaemia (CLL)

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This was me in 2010 - the diagnosis but not active on Blood Cancer UK till later. I’m 12 years in and my latest blood test shows figures similar to what they were in 2015. I think what I wanted to know initially was that I could live a life, see my grandchildren etc. You are in the right place. I’ve had great accurate advice on here and it is good to know about others in a similar position. Hope all continues well with you. Tricia

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Hi
That’s really encouraging thanks. I have always been very active but finding tiredness is an issue so think my skinny pigs hit class is a bit too much now. Trying to work out lifestyle changes to keep as fit and active as possible within my limits x

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Hi, this is my first post. I was given the diagnosis of Chronic lymphocytic leukaemia (CLL) some weeks ago by my GP over the phone, busy man. It didn’t realy come as a surprise as my last four, possibly five blood checks had come back high white cell counts and i do the research.Will be seeing the Haematologist tomorrow for the first time, see what he has to say.

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Wow, welcome to our forum @Artstudio you sound very calm or is that the mask that I so readily put on?
Perhaps write down all your questions, thoughts and practicalities to ask your Haematologist tomorrow and I have also learnt to be ‘pleasantly assertive’.
The Blood Cancer UK support line is there for you if you would like to talk to someone
Please let us know how you get on and I look forward to hearing more about you.

Thank you so much Erica. No mask its just me when i am not in a state of depression. Unfortunately they are getting more frequent due to the aches and pains and the excessive bouts of tiredness which stop me from enjoying my pastimes.

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Hi

Welcome to the forum. I am newly diagnosed also just 2 weeks ago. My lymphocytes have been high for over 2 years whenever I had bloods taken for any reason but no one picked up on it until recently when someone in the lab noticed a pattern and looked at my blood under the microscope. The white cells were abnormal. I went to my GP for headaches and expected some medication for migraine but instead was given an urgent referral to haematology under the 2 week rule. Bit of a shock. Led to diagnosis of Chronic lymphocytic leukaemia (CLL) Haematology have been great. Explained everything. I am on watch and wait with a hotline to the clinic if I have any new or worrying symptoms. I’ve researched a lot too ( I am a nurse so not surprising )and although I’m still getting my head around it I feel really positive. Good luck with your appointment. Let us know how you get on

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