CLL and tracking blood results

[GenesisDevice]

Hello everyone

I’m a with Chronic lymphocytic leukaemia ('CLL') patient – diagnosed late April 2025 and now on active monitoring – and I’m conscious that there are a lot of people out there who are in a similar situation. So, I guess my post is more relevant to that group of people but of course I welcome any responses from our community here on the forum.

I’m someone who used to work with data and spread sheets etc, so I cant help but track my blood health on yes, you guessed it, a spreadsheet. To date I have found that this has brought its own form of comfort and allowed me to feel as if I am in control, if only a little.

I do feel that being on active monitoring is, at times, frustrating. I find the wait so difficult, the not knowing is hard as my mind wonders, thinking the worst, hoping for the best. My bloods are taken then there is a twelve week wait for a response, and that vacuum between bloods taken and response is the difficult period.

My expectation is that eventually I will receive a lymphocyte count that has increased and I’m not sure how I will feel about this, so I guess I’m asking how others have handled their feelings during the period between bloods taken and the results, and also when the blood results come back and they have shown progression of the condition. For now, I feel I’m riding the quest of a ‘good results’ wave so to speak, as since I had my initial diagnosis my lymphocyte count has reduced three times in a row.

I’ve heard from people who has the condition and have been living with it for years, and that is very comforting, knowing it is manageable is an extremely powerful thing to learn and I’m grateful to anyone who has shared their experience.

Ultimately, we are here for each other, and I look forward to hearing how everyone is getting on, not least if you are a Chronic lymphocytic leukaemia ('CLL') patient like me.

Mike.

[Erica]

Hi @GenesisDevice I also have Chronic lymphocytic leukaemia ('CLL') and have been on active monitoring for 22 yrs.I started charting my blood results on graph paper until that got unwieldy !!

I live in England and my blood results come back within a week. I can get them on my NHS app. I get my blood taken at my local GP surgery.

You described my feelings and emotions so well and yes, I still go through that rollercoaster of feelings and emotions after all those years, it doesn’t get easier for me. My results also fluctuate and if they go in the right direction I feel like a fraud.

For me this forum is wonderful as I thought I was the only person in the world with Chronic lymphocytic leukaemia ('CLL') and with the thoughts and feelings and practicalities of living with a condition that I was diagnosed with because of the symptoms I had, but now have to manage those symptoms on a daily basis, especially my fatigue. Now I have a supportive forum family around me and the Blood Cancer UK support services too.

[Duncan]

Hello there Mike @GenesisDevice, great topic to raise.

Have to say I am slightly surprised it takes 12 weeks for your blood test results to come back, unless I read that wrong. 3 months?! I think I’d struggle with a wait that long.

Do your specialists say why it takes so long for you to get your own results? As an anxious person I would not want to wait that long after every blood test. I might be tempted to pleasantly (but assertively, copyright @Erica!) ask for the results far sooner, to help minimise any worries in the meantime.

Living with a chronic type of blood cancer has definitely been a lesson for me of learning to tolerate being in that space between tests and their results. Long may you ride that good result wave, such good description. I really like your attitude about the active monitoring of it all. Should you ever have not so great results then you know you have support here.

[GenesisDevice]

Hello @Duncan

The explanation i was given re the time frames was that as i was signed off from the haematology department at my local hospital and referred back to the my GP, the tests are completed by The Leeds Teaching Hospital HMDS outreach who cover a good number of people like myself. So i guess its down to the volume of tests they cover.

Knowing the support structure we have here is a massive positive for me and I’m confident for many others.

Thank you for your kind response

Mike

[GenesisDevice]

Good morning @Erica

If I’m not mistaken, i think when i first engaged with the forum you may have been the person who responded to my post. When i read that you have been living with the condition for the time frame you mentioned, this gave me a massive boost as i realised that the condition can be managed.

Its fair to say at the time i first engaged with the forum i was in a bit of an emotional mess, having not long got my diagnosis.

I wondered what your secret was to doing so well, but i realised that it is down to living well, good health diet, exercise and good rest, as well as the amazing support structures we all have in the form of this forum, our family and friends and our wonderful NHS. You mentioned fatigue, and yes its something I’ve learnt to manage, having my afternoon siesta as i now refer to it.

Thank you for your kind words

Mike

[Erica]

Hi @GenesisDevice

I have not got any magic formula as my Chronic lymphocytic leukaemia ('CLL') will do what it wants to do, if and when it wants to do it. I was given a prognosis of 5 - 10 yrs when diagnosed.

I have aged and collected other conditions over the years and with changes in professional health, fitness and nutritional thinking I have tweaked my diet (but still have my treats) and joined Pilates and dance classes, but I only really realised the benefits, for me, of fresh air and walking during lockdown, We are lucky enough to have parks and a rivers towpath locally and it is a very good occupation for a nosey person.

I also do these things in case the status of my Chronic lymphocytic leukaemia ('CLL'), and my other conditions, change so I am in a better place medically, mentally, physically, emotionally and practically.

This are my thoughts and I am definitely not a medical person.

[Duncan]

Ah yes I remember now you and @Leigh65 mentioning the waits for test results near you (hope you’re well @Leigh65). In some ways a busy teaching hospital could be a good thing—all those eager trainee medics, extra eyes on patients having treatments, more explanation of the processes. In my imagination at least!

I might still be cheeky and ask the nurses next time why they think there are waits for results. My phlebotomists often share great tips, especially about how to manage side effects like fatigue and dry skin when I was still with my uncommunicative first haematologist!

Love that you have siestas, they help me too. And I’m in awe that you’re so patient Mike, I bet that stands you in good stead with all this.

Just wanted to add that dear @Erica greeted me here first as well and we’re so lucky to have been met by her calm and comforting self

[Leigh65]

Hello @GenesisDevice

This hit a bit of a nerve with me, I must admit.

I’m supposed to be monitored six monthly at a hospital in Leeds (maybe same as you @GenesisDevice), that is, I am supposed to get a kit in the post, get tested at my GPs and then send the kit back to the hospital. However, since being diagnosed 18 months ago, I’ve only received one test (last July). Like you, I waited months for the results (I think it was about three as well) and then couldnt face opening them, so they’re still in my health folder… I am also being monitored for other conditions :-((( and found out through those blood tests that I am not doing great (especially re platelets) which has triggered my anxiety substantially. Sometimes I just want to run away and not come back. Not sure where I want to run!

I know it’s hard for everyone but I also have a history of anxiety issues, including PTSD. Tracking anything would just take over my head and not help me at all. If it was good, great but if not, then I’d just go into free-fall, which is kind of what happened with the blood tests for something else. I really didnt want to know and there was no reason to have flagged things in the way they did :-(((

Am aware I am very unusual not just in not tracking my blood results but in not wanting to know them at all. I am monitoring how I feel, do I have night sweats, swollen lymph nodes, increased fatigue etc? I dont scan my body anxiously and consciously for things ‘going wrong’ all the time but just have a general sort of awareness, trying to hold things gently. In some ways, I suppose I also feel that the Chronic lymphocytic leukaemia (‘Chronic lymphocytic leukaemia ('CLL')’) will just do what it does and while I likely have some control over that (diet/exercise etc) it’s not full control. Knowing the ups and downs of my blood isnt going to help me personally, it will just cause incredible anxiety (given my history) and likely make things worse. So I try to just carry on, not think about it constantly (I did at one time) and live my life as best I can, prioritising what I love and what I want to leave as my legacy.

xx

PS I dont look when they take blood either. My DP gawps, I have to be distracted and talk about gardens and holidays. We are all different in how we process, manage things etc.

[GenesisDevice]

Hello @Leigh65

Its lovely to hear from you

Yes, i get a kit in the post, book to see the nurse who takes the blood and re packs the box as required before i have to then drop it into a post box. So i think we are both being monitored by Leeds. I must say it felt very strange dropping the blood samples in the post box but it was well packed and marked correctly so i guess its all good.

I did note that on my most recent results it stated that the next test would be in 12 months and not 6. This i hope is an indication that on the Chronic lymphocytic leukaemia ('CLL') front we are both doing well. I hope you do take a moment to open your test results, after all if there were any need they would have contacted you regarding what they had found so I’m hopeful your results are okay.

As for running away, yep sometimes it does feel that way, but hang in there, we got loads of support out there. Speaking of support, have you ever gone to the Levenson Centre near the football ground ? I go to the coffee morning on a Wednesday and would encourage you to do so, its really very good and the cakes are home made!

You mention other conditions and i can only imagine how this makes you feel, but again the forum and all the support structures are there for us all.

Personally I’m not getting night sweats but my lymph nodes are a little swollen and yes the fatigue is frustrating at times as i fall asleep in the afternoon for my siesta.

Do keep in touch - its lovely to hear from you

Take care

Mike

[Duncan]

Hello there @Leigh65, I must apologise for not responding until now. It’s been one of those busy days I’d saved up energy for in advance, a nice hike down from the ridge with gravity helping me and the hound

I’m sorry to read of that anxiety flaring up, and perhaps it’s not a surprise with all you’re dealing with now, right? I understand that sense of wanting to run. Where might you go, if you let yourself?

Surely those unread results can wait and will be there whenever you want to look at them. You might never. Your specialists will still be checking them though, and keeping an eye on stuff in the background. I’m always a little humbled when my doctors mention something about some test result or another like they’d been revising it!

Sounds like you keep an eye on physical symptoms really sensibly. I mean, only we can notice how they make us feel, and hopefully should they ever change we can act on that. My haematologist was telling me this week that I would know if something was wrong, if my Polycythaemia vera ('PV') was progressing. I think if we know our bodies we’ll notice an alarming change. Then we bring in the experts, I’d say.

I kind of agree that our disorders will just do their own thing regardless of us trying to intervene (having a 30 Rock flashback to a Jenna intervention there haha). These chronic disorders developed all on their own, the little blighters, and I am told will progress or not of their own volition too. All very frustrating because I’ve always thought being healthy and active would help prevent this stuff, but no here we are. For me at least. Angry at a gene mutation! Legacy indeed.

Like Mike @GenesisDevice says, there’s lots of support out there if wanted, and if needed then do please seek it. Personally, when I first started having panic attacks and realised I likely had PTSD I found nothing really helped, all those mindful exercises and breathing and bedtime routines etc as it was all too much effort to keep doing consistently, and so sometimes all I could do was walk. Preferably somewhere wild.

Out there I could begin to peek at the underlying triggers and memories. Also, back home, finding The Body Keeps The Score made me feel less alone with it all, and led me to other ways to deal with the triggering memories/sensations. Only then did EMDR work for me, and I know that I’m very fortunate to have been able to find someone trained in offering it. He was a pretty bad therapist though!

Anyway, here’s a snap from earlier on (wild) West Ridge Trail, thinking of you @Leigh65

[Leigh65]

Thanks for your reply @GenesisDevice. I find it comforting that you’re in York too!I

Havent been to the Levensen Centre yet. I have an exercise class on Weds mornings but could perhaps drop by sometimes, ring the changes. You’re painting a tempting picture with chat and cake. Glad you’re finding it helpful.

Always a pleasure to hear from you, @Duncan. Your message was very gratefully received, connected with so much of it… Haven’t been here much lately as I’ve needed to clear my head a bit from blood issues/health issues. It’s been wearing me down. Been spending time working on my novel. I’ve bored everyone with that, so am sure I’ve mentioned it here Finished it last week, 345 pages! It needs some editing and the path to publication (if lucky enough) is long with many many steps so will keep me busy. Find it the best thing for troubled spirits, creating a soothing world I can gently rest in (I write uplit, uplifting fiction rooted in hope). And yes, nature for sure… always always always.

Go easy with your little dog amongst the trees… Sometimes I like to just stop and watch dogs running on the green near where I live, their joy is infectious and humbling. Oh and I have a dog as a main character in my book, he’s called Norman and very integral to the plot

xx

[Duncan]

Aww dear @Leigh65, thank you so much for your lovely response. I can totally appreciate wanting a break from health stuff, it can feel like such a waste of focus sometimes. Or pulls energy from other more productive activities, like writing a book!!! Wow that’s incredible

I hope you didn’t mind me tagging you in response to Mike, I’d been wondering about you and your writing recently and recalled poignant similarities you’d shared. Your emotive description of not wanting to look at test results really strikes a chord with me.

Have to say it’s brought such a smile to my face thinking of you writing a whole new book! Bet your loved ones are impressed too. How exciting, I rather like the editing stage of a creative endeavour, touching up any rough edges and bringing it to a neat conclusion. Makes me miss my sculpture days a bit, but not the mess and storage. Writing is much neater

Love that you’ve written a canine main character! Our little hound is really in his element out in nature and a year since adopting him he’s managing really well in public and even takes buses with me to go hiking, like yesterday! As he’s so small we tend to keep his walks to about an hour max, and thankfully he’s light enough to carry if there was an emergency. Funnily enough I made sure to keep an eye out for snakes warming up on the trails yesterday, no sightings

I’ll look forward to any other nuggets you share about your new book and I hope you enjoy the editing @Leigh65!

[GenesisDevice]

Hello @Leigh65

You’ll be made to feel very welcome and it would be lovely to have a cuppa and a chat

Mike

[DuncanB]

Book sounds amazing @Leigh65 and look forward to hearing about it when published.

Wondering if you took some photos on your trip to the Western Isles earlier in the year?

I’m sure they would be appreciated by others.