Hi. I have been newly diagnosed with Chronic lymphocytic leukaemia (CLL) only a few days ago. I feel quite numb and not sure how to feel really. I am 44 with two daughters who are 17 and 12. I am on watch and wait as my blood levels are relatively stable so not having any active treatment. I have high lymphocytes and swollen lymph nodes but no other symptoms at present. I am scared about what the future holds and how fast this will progress.
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Dear @Pickle23
Thank you so much for posting and welcome to the Forum. May I ask how you are feeling following the diagnosis?
I am sure you will find it very supportive here. I hope we will be able to give you the information you need within this forum but also the knowledge that you can also call our support line to talk through any worries you may have: Blood cancer information and support by phone and email | Blood Cancer UK
May I ask whether your Haematology Consultant has explained the watch and wait process? We have some information on our webpages about this and all aspects of Chronic lymphocytic leukaemia (CLL) Chronic lymphocytic leukaemia (CLL) - what is it, symptoms and treatment | Blood Cancer UK which may be useful to you.
Whilst on watch and wait it is important to recognise symptoms that require reporting and how best to do this. Do you have a contact of a Clinical Nurse Specialist that you can call?
As you can imagine every patient is different when considering progression but I would say that being on watch and wait indicates that your disease is stable and that treatment at this point is not necessary and would not give benefit in the long term. However, it is always best to ask your individual risk when you next see your Consultant as they have all your clinical information at hand.
Here is our booket on Chronic lymphocytic leukaemia (CLL) that you can download for you and your family. You can also order paper copies if that helps:
https://cdn.shopify.com/s/files/1/0196/7004/0676/files/Chronic-lymphocytic-leukaemia-CLL-Blood-Cancer-UK-CLL-0222.pdf.pdf?v=1647008425
Do take care and call if you need,
Kind regards
Gemma
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Hi @Pickle23. I was diagnosed with follicular lymphoma 5 years ago. I was 41 with an 11 and 8 year old. Reading your post bought back all of those initial thoughts and fears and it is a horrible feeling.
I’m glad you found us as I think sharing your experiences and reading others really helps, and at times, eases some of those fears.
I know lots of members have Chronic lymphocytic leukaemia (CLL) and they will be able to share their experiences with you.
It’s really early days in your journey and it’s so much to process. My emotions were all over the place, and particularly difficult when I thought about the children, especially the thought of talking to them about it. Have you got a good support system around you? Watch and wait can be a hard thing to get your head around. Have your medical team provided you with info and have you had the opportunity to ask questions?
Remember, the support line is just a call away. I wish I’d found it sooner. If it’s to hard to talk about just share on here. There is always somebody to listen x
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To be honest I don’t know how I feel, it feels numb and weird and it feels very surreal. The watch and wait is a difficult concept for me to accept as the thought of not being able to fix this or treat this is very hard.
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Hi @Pickle23 I am so glad that you have found us.
I also have Chronic lymphocytic leukaemia (CLL) and was diagnosed at 53 yrs old with a son who had just left home.
I am also on watch and wait (active monitoring) and I have been on it for 18 yrs.
Yes, as @Nichola75 says reading your post brought so many memories flooding back for me too. I came straight back home and wrote my funeral music after my diagnosis.
All your thoughts and feelings are so, so natural, just be kind to yourself, I remember them so well.
I thought I had my future mapped out too, but my thoughts and emotions have calmed down a bit over the years (although they can come whizzing straight back), today I am managing my symptoms and my 70th birthday was the best ever.
@GemmaBloodCancerUK has given you great advice too.
Be kind to yourself and please do not hesitate to ask any questions, please keep posting
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I think feeling numb and weird is actually how I felt @Pickle23, I actually felt in a bubble with the world going on around me.
Yes, I had always been the healthy, doer, capable fixer too.
I still get anxious before, during and after medical tests and appointments.
I also have to write down everything I want to ask beforehand.
Give yourself time.
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I kind of feel that I am in a surreal bubble at the moment and finding it difficult to accept. It’s been a long road to get to the diagnosis after two years of steadily increasing lymphocytes and recently swollen lymph nodes. Finally had the flow cymmetry test done which confirmed the diagnosis. I think I knew something was wrong but having the consultant tell me and then reading it on the clinic letter made it really real. How do you cope with the waiting? I have to have a plan and fix things and I can’t fix this thing inside of me or if it will get worse, it’s the unknown that I am struggling to deal with.
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@Nichola75 Thanks for replying. It is the watch and wait that is causing my anxiety levels to sky rocket. My husband isn’t that supportive as he just says it may not get worse so not to look on the bad side of it. I suffer with health anxiety so this has shaken me to the core. How can I carry on with this cloud hanging over me?
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Hi @Pickle23 yes, hearing the words and reading them really hit me hard too.
I just do cope with the waiting as I have got so used to it over time, and I certainly cannot control it, but it does take time.
Also it is the same with the unknown, I always thought life was mapped out, but now I realise that all we anyone has is the here and now.
I, and other people, thought I was diagnosed, so would have treatment and be cured, but most blood cancers are not like that. I can remember having this sensation of wanting to pull the cancer out of me.
Watch and wait (or some people call it watch and worry!!!) is a weird concept to get your head around, but I think ‘active monitoring’ describes it better, Now, and I stress now, I count myself a very lucky girl to have been on it for 18yrs. In that time trials and treatments have come on leaps and bounds.
My husband just goes round with his head in the sand about my medical conditions. He is a very practical person, and he just doesn’t do emotions either.
You will, in time, find the cloud starts to lift and disperses more and the sun manages to break through. There will still be a mixture of clouds, sun, rain, that’s just life.
We are here to support you as so many of us have been where you are now.
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Hi @Pickle23, thank you for sharing with us what you’re going through. It sounds as though it’s understandably been a really difficult time for you. I can see that you’re getting a lot of support on here, so please do keep reaching out. Our support line is open during the week but also at the weekend, 10am to 1pm both days, so if you wish to talk this through or wish to know about accessing other forms of support, please don’t hesitate to reach out. Do take care of yourself.
Best wishes,
Tanya.
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All I can say is that is takes time. I felt exactly the same but as Erica said, the cloud lifts as time goes on. I still have really tough days but I think that’s ok. Just keep talking and sharing. How you are feeling is ok. It’s so hard for others to understand. Just take each day at a time x
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Hi and welcome, so glad you have found us. I was diagnosed in 2018 who I was 66. I had three years of watching and waiting before starting treatment in 2021. Although I am now stable, I still have panic moments as Erica says at testing and appointment times. As I write I am in such a mode with my telephone consultation booked for tomorrow morning.
Try and be strong but do ask here if you have any worries.
I would also advice you to join the Chronic lymphocytic leukaemia (CLL) Support Association.
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Hi @Kitchengardener2 @Pickle23 @GemmaBloodCancerUK @TanyaBloodCancerUK @Nichola75 it is interesting that just reading that you have a telephone consultation tomorrow @Kitchengardener2 and those feelings of anxiety and yukky feeling in my stomach come back in me.
As @Nichola75 said so well I also still get tough and anxious times and with me they are worse if I get overtired and run down.
Since diagnosis my emotions are far more heightened, and I can burst into tears at the drop of a hat.
The main thing is that we all look after ourselves
@Kitchengardener2 please let us know how you get on tomorrow, make sure you say everything you would like to.
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Welcome to this forum @Pickle23 . I can fully understand your concerns and worries. It is always a shock to be told you have a cancer, and in our case, with Chronic lymphocytic leukaemia (CLL), one that cannot be removed. But apart from the wonderful support you get here on this forum from individuals, and the Blood Cancer UK information, there is always someone you can talk to as well. I recommend you make use of that. I have a McMillan nurse I can phone and I have found that very helpful. Someone with knowledge and an understanding approach. I was diagnosed in 2015 and had treatment in 2016 and have been in remission since. I agree with everyone here, that watch and wait can be a very anxious time. You do a blood test with fingers crossed! Fnd out as much as you can about the condition and dive back here for support when you need it.
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Thank you all for your really kind and supportive words and advice. It feels weird just carrying on with everyday life knowing that there’s cancer cells in my blood and not knowing whether it will get worse at some point. I have a lot of swollen lymph nodes in my neck area which are uncomfortable and I keep checking they’re not getting worse. I am struggling with the watch and wait and feel I need blood tests every few weeks just to check it’s still stable. The thought of having this forever is something I am struggling to accept.
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Just give yourself time @Pickle23 and it takes a long time to get your head round things, it isn’t logical.
Perhaps just think of watch and wait as active monitoring.
We are all on here to support you and I am so glad that you have found us.
Most of us have been where you are now so really understand what you are going through and have had similar thoughts and emotions, often.
Acceptance takes ages, I have a great big unexplained bruise appeared on my leg and the first thing I think of is my Chronic lymphocytic leukaemia (CLL), but that is OK, it’s natural, even after 18 yrs.
If you would like to talk to someone the Blood Cancer UK support line is there for you and so are we, please do use us.
Really look after yourself, be kind to yourself and spoil yourself
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Hi @pickle23 I was diagnosed January 2020 been on watch and wait since. It is hard to get your head round it and as it’s something people can’t see they think you’re okay. Give yourself time and be kind to yourself. I’m sure your medical team will look after you. I’ve been discharged back to my GP which was a bit worrying but since then I’ve been diagnosed with inflammatory arthritis so I’m like a pin cushion having bloods all time. Take care and give yourself time.
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I am on 6 monthly monitoring of bloods and lymph nodes as I have a lot swollen especially in my neck area. I just know waiting 6 months in between check ups is going to be unbearable for me. Cancer has always been my most dreaded fear and now I’m living that reality.
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Hi @Shelz and @Pickle23 I was also discharged from my hospital consultant back to the care of my wonderful GP about 5 yrs ago, with the proviso that if I or any symptoms or tests showed concerns then I would be fast back to my hospital consultant. It brought up a mixture of emotions in me, primally anger, sadness, tearfulness and abandonment.
I didn’t dare tell anyone because I felt they would think that there was nothing wrong with me and also that I should not be on our forum.
But @Shelz says it all that we need to be kind to ourselves.
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Hi
I was diagnosed with Chronic lymphocytic leukaemia (CLL) in June of this year so still getting my head around it too . I am also on a watch and wait . I hope it helps to share my thoughts and feelings with you . I am a nurse so have some knowledge of Chronic lymphocytic leukaemia (CLL) although this is not my area of expertise but of course I immediately started the research!! Initially I was extremely positive and upbeat and constantly reassuring everyone, looking back on that a few months later I think that was partly denial and partly me going into nurse mode and looking after everyone else and their emotions. In the background to all this my diagnosis was and is constantly in my thoughts . Like you I wonder how it will go , what the future holds, will I remain on watch and wait for the rest of my life ( I’m 61) or will I need treatment at some point. ? We honestly don’t know is the honest answer but there are some very effective treatments. I’m actually quite reassured to be on a watch and wait as not needing treatment feels like a real positive but being kept under regular review and able to contact haematology if worried is reassuring too . I’m very lucky in that my husband is very supportive, I have 4 beautiful grandchildren who are too young to know or understand about this but they bring me great joy. I’m suffering with tiredness quite a lot but am making adjustments to cope with that and we are just living life to the full having holidays and making plans. It’s helped me to just be really open with everyone about it , it’s out there and I can talk about it if I need to . It is very early days for you , I’m sure you feel shocked and confused but just take things a step at a time , take time out to care for yourself physically and emotionally . This forum is very helpful and supportive and know exactly where you are coming from. Please do stay in touch
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