I was told today that I have Chronic lymphocytic leukaemia (CLL). I’m very sad and completely shocked. How do I live everyday knowing it is there. I have a 10 year old daughter and I’m scared I won’t see her grow up. At this moment in time I have no symptoms at all. I only went for a random blood test thinking it was the start of the menopause. Do I tell people or not? Do I wait until symptoms appear before I do? And is it possible I could live for many years to come. I daren’t Google anything as I’ll probably end up terrifying myself.
Firstly welcome to the forum and I am so sorry to hear about your recent diagnosis.
Your feeling of shock, worry and contemplating what tomorrow and the future looks like. It’s normal and expected and human to feel like this.
Having a young daughter, only raises the emotions exponentially.
Personally if I was in your situation and you’re not showing symptoms I would take time to come to terms with your diagnosis and not tell anyone just yet. They will have lots of questions for you to answer and it’s wouldn’t be right to put that expectation on you until you’ve come to terms with things and had a chance to ask and seek information about your short, medium and long term questions and future looks like. What I would say is you shouldn’t be alone in this and having someone not associated with your daily life that you can ask for guidance and support is vital. This can come in the form of your clinical nurse that will be assigned to you. The charity has a fantastic support line that I would definitely make use of for help support and guidance and the website has a brilliant guide to help you through these early days and how to process things.
Again I’m so sorry to hear your situation but rest assured we are all here for you in any capacity you need us. You’re definitely not alone in this!
Hi @MarieJ1979 I am really glad that you have found our forum so quickly.
You must be in complete shock and obviously fearful.
I also have Chronic lymphocytic leukaemia (CLL), I was diagnosed by a gynaecologist via a blood test 19 yrs ago at the age of 53 yrs old.
I am on a regime called ‘watch and wait’ or ‘active monitoring’ which means I have regular blood tests to assess the progress or not of my Chronic lymphocytic leukaemia (CLL).
I am now 73 yrs old and my life is better now than it has ever been because I have assessed my life and seen what is important to me and what I want to do and with whom.
I did tell people that I thought needed to know like family, good friends and work.
I made a bit of a mess of it because how could I explain to them what I did not understand myself.
If you do feel you would like to tell your daughter and perhaps 10 yr old can often sense when something is not right, then perhaps just tell her in simple terms, reassure her and tell her you will always answer her questions etc., but the choice is always yours what you decide.
What I would say is to give yourself plenty of time, you must be in complete shock.
The Blood Cancer UK website has a lot of information just click on ‘Understanding blood cancer’ at the top of the front page. If you would like to talk to someone the Blood Cancer UK support line is there for you on 0808 2080 888.
Yes, perhaps don’t Google.
Perhaps give yourself time and be ever so kind to yourself.
Please keep posting
Thank you Erica and Rammie18 for your responses on this thread. It’s a great comfort knowing someone is there. I’ve told my work and immediate family. I think you’re right that without any symptoms (apart from a little fatigue) I won’t tell everyone. I need to let it sink in first. I’m 44 and we believe it may have started in June 2021. So I was 42 when this entered my life. I feel angry at getting this relatively young. I feel hopefull when I see Erica’s story, 19 years and living a good life. I’ve been googling and it’s terrifying! So no more Google!! I will use the resources you have suggested and keep active on this forum as I feel being connected with others will help me. Thank you so much for reaching out to support me.
Hi @MarieJ1979 and welcome to the forum. I can’t follow @Erica and @Rammie18 wonderful replies. I’m so glad you posted!
I was diagnosed with lymphoma when I was 41 and had an 11 and 8 year old and the same thoughts and feelings went through my head. I had no symptoms, apart from a small lump I didn’t even consider was lymphoma.
I felt so out of control and for me, active monitoring rocked me to the core. I knew it was the right treatment path but had no idea how I could live with it everyday and the thought of telling the children was something I couldn’t cope with.
It’s not easy but as time goes on I would say I’ve learned to manage it better. I informed myself and asked lots of questions. I used reputable websites, I found support through helplines and counselling and although some days I feel I’ve taken a step back, I also realise how far I’ve come.
You really need to give yourself time. It’s so so much for you to process and you need to take it at your own pace. We all share the same thoughts and feelings and that’s what’s great about this wonderful forum - we get it. However, don’t compare and take each day as it comes.
It sounds as though you have a really supportive network around you and I’m really glad you have told them.
I wish I could give you a hug because I know how difficult things must be right now.
Sending lots of love and will keep checking in on you X
Hi Nichola, thanks for the reply. It’s day 2 of living with Chronic lymphocytic leukaemia (CLL) and it is a rollercoaster of emotions. I think I’m still in shock and the words ‘I have blood cancer’ will not go away. I keep bursting into tears. I know you understand everything I’m saying so it’s so good to have contact via this forum. I have taken next week off work and they are being very supportive. I’ve told my 10 year old daughter that mummy has a condition which makes me tired and when necessary the doctors will treat me. No mention of the word cancer and she is unfazed and happy enough with that. I’m fearing for my future. But for the time being I will be as kind to myself as possible. Thank you for replying to me as well as the others who replied. I take comfort that you are all there. Xxx
I remember it like yesterday @MarieJ1979. You will know when it’s the right time to give your daughter more information. For now, you just need to focus on you.
Taking time of work is a good idea. I didn’t and carried I and came crashing down with a huge bump.
Use the support line if you feel up to it, they are amazing listeners and when you’re ready, and if it’s something you think will help, there is access to counselling.
Just go with your emotions. Cry if you need to, scream etc but most of all just try and be kind to yourself.
We are all here for you. I really do understand how you are feeling and am sending you a huge virtual hug. Knowing there were others who shared what I was going through and that understood my thoughts and feelings, really helped.
Please keep posting and we can keep
Supporting you X
Thank you for reaching out to us following your diagnosis and I am sure that you will find this space supportive and informative. The shock must be overwhelming just now but please know there are a lot of people that can support you and there are many options for Chronic lymphocytic leukaemia (CLL) patients.
May I ask whether you have seen a Haematology Doctor yet and have you been told about a Clinical Nurse Specialist that can support you? Have they told you how often they need to check your bloods and what symptoms to look out for?
It is entirely up to you who you tell and at what point you do this. All I would say is that it is very early days and that it may be wise to understand more about your condition until you speak to others. As long as your closest family and friends are aware to support you that is just fine. It sounds like you explained this to your daughter perfectly. I will add some resources below that I hope you may find helpful and as you’ve heard, the support services team are here if you need to talk: Blood cancer information and support by phone and email | Blood Cancer UK
Thank you for your reply. I saw a haematology doctor yesterday when I was given the diagnosis. I haven’t been allocated a CNS yet. I’m going to have another consultation within the next 3 months and I believe my own GP will be monitoring my blood for increasing lymphocytes.
I’m a bit paranoid about symptoms and keep checking my neck. I was examined yesterday and all was well so perhaps I’m panicking for no reason. My joints in my elbows are painful I wonder if I should manage that with painkillers or if it’s something I should approach the GP about.
Thanks again
Hello Marie
It is no wonder you are concerned about symptoms and signs, this will lessen with time but always good to be vigilant about your body anyway.
I would suggest that if symptoms persist or overwhelm you then do speak to your GP or you can always call us here? We have some information on how to cope on watch and wait and what symptoms to escalate: Watch and wait for CLL | Blood Cancer UK
As we mentioned earlier, this is all very new so please do be reassured that you have seen a Haematologist who has examined you and you will be seen soon too. If you do have any questions please do call,
Take care
Gemma
Hi @MarieJ1979 as I said before I was diagnosed 19 yrs ago and I can remember it like yesterday, like @Nichola75.
I can still see the words Chronic lymphocytic leukaemia (CLL) with great big zig zags around them.
Everything you are feeling, thinking and experiencing I can remember so well, it is so natural.
What a lovely way to tell your daughter, wow, I am so impressed.
Yes, as @Nichola75 says give yourself time and space to get your head around it all.
You now have your forum family around you.
You have been given brilliant resources by @GemmaBloodCancerUK and others.
I am still paranoid about symptoms, lumps and bumps, it is natural.
I still get anxious before and during all tests and appointments.
My GP monitors my blood tests etc.
My philosophy is to contact my GP about anything that is worrying me symptom wise.
Be ever so kind to yourself and you and your daughter spoil yourselves.
What a shock for you…with my illness i knew i was unwell so was glad to get diagnosed
I have a blood cancer called Essential Thrombocythemia
I hope the reply from Erica helps you as she has the same condition
I am not an expert but i know your condition can be treated and managed for many years.
On a positive note the NHS know what you have now and you will get good care many people dont get help until they are very ill…it could be a while before you need any treatment hopefully…that will be up to your Specialist.
As a rule of thumb i only look at the NHS website and they have a very good link on Chronic lymphocytic leukaemia (CLL)…that will give you a good account of what you are facing
So Marie you will have challenges to come but the Treatment and help today is getting better all the time.
So speak to people…dont keep it all in
There is a good Helpline on this Forum and the Professionals/Advisors on here will help you.
Thanks Lee, for your reply. It is day 3 of my Chronic lymphocytic leukaemia (CLL) journey and it is starting to hit me hard. I have a few aches and pains but no symptoms that require immediate attention. What I’m struggling with is the physchological aspect, the knowledge that I have cancer. I’m currently in such shock that I can barely eat. When I walk I feel like I could fall down. I’m sure this may be something you and others have experienced so I can say these things knowing people will understand. I’m taking it hour by hour and about to have a cup of tea which seems to work wonders in any crisis. I wish you well and thank you for connecting with me.
Sending my best wishes to you. It is a shock but you may find that you gradually get used to it. I’m on watch and wait so it’s blood tests and a hospital appointment every 3 months. I feel reassured by that as any changes will be picked up and decisions made about what to do. I have made a few changes- got my vaccines up to date with pneumonia and Covid boosters and Shingles. I’ve almost entirely give up alcohol and this has reduced my feeling hot. I’ve also tried to eat more as my weight was on the border of underweight. I wear a mask in public and wash hands frequently as we are don’t have a strong immune system. I’m also getting out and about with friends and family seeing theatre and visiting art exhibitions. The diagnosis has made me aware of doing things I want now.
Hi Marie, Again I know it can be easy to say buttry and be positive. I had a blood cancer diagnosed in 1984, industrial chemicals and radiotherapy and I’m still around to annoy the medics.
Got a different BC now and after 10 years of watch and wait I’m on treatment and its so much more targeted and manageable.
And remember thats a key word "manageable’ Beware the Googleitis, the infla
Sorry Marie for my fat fingers hitting the send key.
What I wanted to say was beware the Google! We’re all guilty of it and could easily read the negatives e.g. incurable might be fact but that includes the common cold. Manageable is a more positive word and thought.
There’s a lot of good advice and support out there without the unmonitored world of social media.
Blood Cancer UK, Lymphoma UK, Leukemia UK, Macmillan and many more provide good communication and update
Keep positive
I am so sorry to hear you are really struggling with your diagnosis. It’s not an unusual reaction but you have been given lots of pointers here so do use them. Their support line is wonderful, as well as the wealth of reading resources. Take your time, but try not to panic think. I know that’s easier said than done but distraction activities are helpful, and relaxing breathing exercises. Just get back here if you want to chat or phone the helpline. I did that before Christmas and it was just so lovely to talk to someone who was caring and knowledgeable .
Hello @MarieJ1979. Thank you for sharing your story with us. I am so pleased you have found this forum so soon after your diagnosis. I have a different blood cancer, Myelofibrosis, which I have lived with for thirty years. I hope this is of encouragement to you. I was aged 35 when I was diagnosed and so much has changed in those thirty years. This online forum didn’t exist and I was given very little support but I have survived! I am not going to pretend it has been a straightforward journey by any means but my main regret is that I didn’t access psychological support sooner. I still have regular counselling sessions with an excellent therapist and if you can find the right one with whom you connect it is invaluable in my opinion. I struggled on for years pretending I was okay when in reality I wasn’t so if or when you feel ready I would recommend it. Thinking of you so much. I am afraid we never forget those early days of diagnosis but remember there is so much more support and knowledge available now. Warm wishes, Willow X
Thank you for asking. I had my second Shingrix vaccination two weeks ago. It made me feel quite unwell for a few days with an intensely itchy arm, but a few doses of Piriton sorted that out thank goodness.
My recent Haematology appointment was a little concerning as my WBC continues to go up. My consultant was talking about possible intervention in June at my next appointment. She gave me information about Venetoclax and Retuximab. Six years ago I had FCR so a completely different approach, which is to be expected after 6 years.
