Diagnosed with CLL today.....Help :(

Hi Emerald, thank you for your lovely message. I think my first job will be to get the necessary vaccines and protect myself as best I can. I’m also looking at my diet which was a little poor and I think I will give up alcohol (as I don’t much care for it anyway). I’ve also got my face masks and hand gel at the ready. I’m so relieved to have found this forum and people to talk with who understand. I’m also lucky enough to have good family around me.
Best, Marie :slight_smile:


Hi Willow - thank you for reaching out with your message. Having scared myself to death reading about life expectancies of 5 years etc. To hear your story brings such hope. And I can only imagine what a diagnosis must have been like without access to a forum like this. Thankfully I have a great therapist too who I’ve been seeing on and off for years generally for depression. Along with my family she has been very supportive.
Warm wishes to you too. X


Hi Spimula, thanks for your message. I’m feeling better this evening than I did this morning having read all these messages. I’m quite sure I will be using the support line as I’m still largely in shock. My appetite is starting to come back a little too. The anxiety can be unbearable momentarily and so I think I will adopt some breathing exercises into my routine. Thanks again.


Hi Iain, thanks for your message. I truly didn’t realise a person could live for so many years with blood cancer. Your story gives so much hope. I’ve been Googling and it’s terrifying. As tempting as it is to Google I must stop and instead will utilise the great resources that have been recommended. I hope I’m annoying medics in years from now too :joy:. I also like the idea of manageable as opposed to incurable.
All the best, Marie


It sounds like there is a lot going on for you at the moment! It’s good to hear that the support line helped. They really are great aren’t they! I agree that distraction does help - swimming is good for me as well, very calming! So take care of yourself and keep us updated on how things are for you :blush:


Hi Marie,
Thanks for your wishes and the same for yourself. Happy to be of support. It helps both the giver and the receiver to help each other.


All understandable Marie.

I was having blood tests weekly…now three monthly.

In time the big C word will fade away…life will become more normal for you i promise as you get used to it

Never completely…i take a Chemo pill everyday and i used to dread it…hate it

Now i see it like a Vitamin pill.

Can i just say that stress and anxiety will be a big cause of how poorly you are feeling…thats not to say that you dont let your Doctor know if any new symptoms arrise.

Its a shock for sure Marie …but you have a family that need you and this will help in time👍


Thanks for your understanding. Yes it’s that C word and it is the word that pops into my mind the second I wake up. Your promise that it will fade is reassuring. :slight_smile:


Hi Marie,

A fellow-Chronic lymphocytic leukaemia (Chronic lymphocytic leukaemia (Chronic lymphocytic leukaemia (CLL)))er here! I understand the shock right now, but you will adjust and, like the rest of us, as you learn more about this type of blood cancer, come to realise that this is not the worst diagnosis anyone could get. I was diagnosed 9 years ago and the thing which helped me to come to terms with it was my consultant explaining to me that, these days, we are more likely to die WITH Chronic lymphocytic leukaemia (CLL) than FROM Chronic lymphocytic leukaemia (CLL)! It isn’t the deadly disease it sounds like and you can live a long and comfortable life without even needing treatment :grinning:

I am writing a blog about my own experience and, at some point, when you begin to feel more informed and positive about the diagnosis, you might find it helpful. I have written it with honesty, hope and humour and I decided to go public with my experience to help others and paint the very positive picture we all face.

Anyway, for now, I understand that you may feel overwhelmed, but active monitoring is just that and there’s no need to worry about anything, as you will be well looked after and, if you’re like me, you’ll actually forget you even have a condition most of the time!

Take care and come onto the forum any time you need support - everyone here is so supportive and will calm and reassure you that this is not the end of the world and that you have much to look forward to in life.


Angela :hugs:


Hi @MarieJ1979 I know exactly how you are feeling. I was diagnosed with Chronic lymphocytic leukaemia (CLL) last September just before my 44th birthday after a 2 year fight to find out what was wrong with me. I have a 17 year old daughter and a 12 year old daughter so can completely empathise with your shock in your diagnosis. I am 6 months in and to be honest I still can’t quite believe that I have blood cancer. I am on 3 monthly bloods and physical check up as I have enlarged lymph nodes as well as raised lymphocytes but at the last check 2 weeks ago all was stable so still on watch and wait which is a strange thing to get your head around that you are not being treated. The only advice I can give is to take each day at a time and look after yourself, rest when your body tells you to, the fatigue is real. Try not to Google too much it’ll drive you mad. Take care and stay in touch x


Hi Angela,

I’ve just finished a little cry about the fact I am now a person with cancer. I then read your reply and had renewed hope that I haven’t been handed a death sentence. This forum is reminding me that Chronic lymphocytic leukaemia (Chronic lymphocytic leukaemia (CLL)) is not the end life and there is still joy to be had. It’s going to take some getting used to that’s for sure. I will certainly take a look at your blog. Best wishes. :slight_smile:


Hi Pickle23, thank you for your advice and kind words. I turned 44 less than 2 months ago and believed I was alone in my age group. I agree getting your head around the words ‘blood cancer’ are mind blowing. It must be hard for you having enlarged lymph nodes and remaining on watch and wait. It must seem strange although I understand why they hold off on treatment until the time is right. All the best to you and thank you for connecting with me. :slight_smile: X


A warm welcome to the forum although I bet you wish you were never here.
I was diagnosed out of the blue with Non Hodgkin Lymphoma. That was five years ago. This time five years ago I was worried as I was just about to begin my treatment I thought my world had been turned upside down.
Be kind to yourself.
Find something you like to do. I found a passion for yoga it has really helped me through both physically and emotionally to live with blood cancer.

Please do let us know how you are doing we are all here for you. There is light at the end of the tunnel, we are all stronger than we think and you got this.


Hi Jules, thank you for your message. There’s things in life that I enjoy that I’ve not made enough time for such as playing the piano and writing stories. I’m going to make time for these things now. No excuses. I’m also changing my eating habits and exercising more. So maybe there is light at the end of the tunnel :slight_smile:
Best wishes, Marie


That’s sounds like a plan. How wonderful to play the piano. I have always thought I would love to do that. But I have zero ear for music … enjoy and keep posting x


Hi Marie

Don’t forget to get up-to-date with your Covid injections. You will probably find that your are entitled to more often jabs than others. I was diagnosed with T-LGLL over a year ago and I have just received my notification from the NHS about anti-viral treatment should I become Covid positive. You should get this eventually and you can order a supply of free lateral flow Covid tests. You should also apply for a prescription Medical Exemption Card available to those with cancer, including the effects of cancer or the effects of current or previous cancer treatment. This will mean that you will not have to pay for any prescriptions (not just ones related to cancer)

Take care



Afternoon, all,

In case it’s helpful at all, we have some information about the covid vaccines and what to do if you test positive for covid on our website, which we aim to update when there are any changes. As @Doug mentioned the vaccines (thank you) I thought I’d share the link here for reference - How to book a covid vaccine if you have blood cancer | Blood Cancer UK.

There’s also information about medical exemption certificates and free prescriptions here- Who can get free prescriptions - NHS (www.nhs.uk).

I do hope this helps and as ever our Support Team are here if anyone has any questions or wishes to talk any of this through.

Best wishes,


Hi Doug,

Many thanks for getting in touch. I hadn’t even thought about medical exemption so I will apply for it as I do take other medication which I’m currently paying for. As I was only diagnosed on the 2nd March I’m not yet in the ‘system’ as a person with cancer! I rang the hospital and was told they are running behind and that is why I haven’t yet had a letter or why my GP doesn’t yet know. That makes me a little anxious. I’m hoping when my records are up to date I will get notifications/ reminders of what I’m eligible for etc. I’ve had Covid twice in the past with little bother. But given my new circumstances to get vaccinated is so important in case I can’t cope with it as well next time.

Thanks again for your message. I’m so grateful for this forum



Hi Everyone,

So nearly a month has passed and still no written confirmation from the hospital regarding my Chronic lymphocytic leukaemia (CLL).

(Part of me wishes the letter won’t come and it’s all been a bad dream!)

Anyway I take comfort from the lack of urgency which must mean I’m at an early stage and they’re not currently worried.

I saw a GP recently for a painful hip possibly connected to the high inflammation levels in my body. I mentioned getting vaccines given my new vulnerability. She said I don’t need them as I’m not on any immunosuppression. And questioned who had advised me that I need vaccines.

I’ve asked her to check with the hospital ref. vaccines.

I can tell this is going to be a bumpy ride. :frowning:


Hi @MarieJ1979,
Thank you for your post. It sounds as though it’s been a stressful time for your recently, and understandably so. Would you like to talk things over with our Support Team? Please do feel free to call us on 0808 2080 888 if so.

In case it’s useful at all, we have some information on vaccines here- Blood cancer and staying safe | | Blood Cancer UK. You will likely be advised to have the flu vaccine every year, & you may also need the pneumonia vaccine.

You’ll also be eligible for the covid spring booster vaccination - Covid vaccine for people with blood cancer | Blood Cancer UK.

Do you perhaps have the number for a Clinical Nurse Specialist, or keyworker, that you can contact?

I can imagine there’s a lot to process right now. Please don’t hesitate to let us know if you’d like to speak with us.

Do take good care, Marie.
Best wishes,