Hi! I’m 79 and was diagnosed with Chronic lymphocytic leukaemia (CLL) last March. I’m on watch and wait. I found it tough mentally getting used to the idea of having leukaemia but, having recovered from the shock, I’ve had no significant symptoms until a few weeks ago. I was suddenly hit by a wall of fatigue, tiredness and light-headedness and my sleep pattern is often disrupted - I keep waking up, have very little deep sleep (as confirmed by my Fitbit) and can start the day exhausted. But some days I feel much better than others. I’d like to know if this is a pattern that is normal for CLLers, can symptoms come and go like this, and should I be contacting my haematologist for an earlier set of blood tests and consultation, currently planned for 2 months away (I’m on 4 monthly monitoring) or is it just a normal state to learn to live with? A real beginner’s question probably but any advice welcome.
Hi @Murdoch, a warm welcome to this forum! So understandable that you’ve found it mentally tough to process your diagnosis - I think many on here will relate to that.
We would really encourage you to contact a member of your haematology team to make them aware of the onset of these symptoms. It’s really important they’re aware of everything you’re experiencing - they may want to bring your consultation and blood test forward, like you say, so they can investigate whether these symptoms are related to the Chronic lymphocytic leukaemia (CLL). Do you have the contact details for your clinical nurse specialist/key worker? These are such valuable contacts to have so if you haven’t been told who your named key worker is don’t be afraid to ask.
Don’t hesitate to get in touch with us on the support line on 0808 2080 888 if you want to talk any of this through.
Hi Alice, So good of you to reply so quickly and helpfully. I have immediately and for the first time phoned my contact nurse. Turned out to be a very nice experience and she has spoken to my haematologist who, it turns out, can see me tomorrow. So help and support are immediately at hand. Thank you for encouraging me to seek help. Only joined this group a couple of hours ago and it has already paid off. So very grateful to you.
That’s great to hear - wishing you all the best with the appointment.
Hello @Murdoch sorry you are having a rough time. However, I just wanted to say that I’ve had a few nights where I’ve woken up and struggled to get back but I listen to a session on the Fitbit discover and can honestly say they really helped. I didn’t fall asleep immediately but I haven’t heard the end of a session yet.
Great idea, Polycythaemia vera (PV). Thanks.
Hi @Murdoch a great big welcome to our forum family and you have had excellent advice from @Alice_BloodCancerUK and @PollyVera and a very positive response from your contact nurse. I have found my key contact to be very helpful.
I am 73 yrs old, I have had Chronic lymphocytic leukaemia (CLL) for 19 yrs, and always been on watch and wait (active monitoring).
I also found it very difficult to get my head round the shock, anxiety and watch and wait regime.
Sleep wise you can usually prop me up against a wall and I am off, but it is stress, anxiety and sorting out something that does my sleep pattern oh, and wanting to go to the loo as well. My fitbit doesn’t seem very accurate on what I think is my sleep pattern is.
If I am exhausted my fatigue starts to set in.
As for my fatigue I have learnt to mange it over the years. It can come on immediately or up to 48 hrs after I have overdone it with what personally stresses me or I have overdone it emotionally, physically, medically or practically.
Sometimes everything is all too much, sometimes I need a nap and other times I need fresh air and appropriate exercise, I am a walker.
Please do ask me any questions.
Please let us know how you get on and be kind to yourself
Thanks, Erica. So much of what you say rings bells. Well done for doing so well for such a long time. I too recognise that stress and anxiety are in the causal mix. You seem to imply that your ups and downs of tiredness and fatigue come and go from day to day. Is that right? Do you ever feel so fatigued and lightheaded that you wouldn’t trust yourself to drive?
My Fitbit is exactly right about my own feelings on how I’ve slept - if I feel reasonably fresh in the morning it does show quite a lot of deep sleep. But recently it has shown much less and I’ve independently felt quite lousy. So I can never be sure that I’m feeling tired and rotten because I’m just not sleeping or because of the Chronic lymphocytic leukaemia (CLL). Chicken and egg.
One thing I do know from this, my first few hours on this forum, is that it’s fantastic in providing advice and support. Many thanks.
Yes, @Murdoch yes, I suppose my ups and downs of tiredness and fatigue come and go from day to day, but I manage them.
However what I never learn is my habit of feeling good, then overdoing it and going back to feeling fatigued !!!
I hope my post did not come over as negative my 70th birthday, just before Covid times was my best birthday ever.
I am a Pilates girl and walker and I am fitter now than I have ever been,
My diagnosis gave me the opportunity to reassess me life and how I wanted to spend my time and with whom.
I seem to have more energy earlier in the day and I am now a ‘lady that lunches’ and tend not to do anything in the evening, but it works for me and my husband.
Any symptom or lump and bump I get brings on my anxiety whether it is connected with my Chronic lymphocytic leukaemia (CLL) or not.
My emotions have been on high alert since my diagnosis.
We are only human.
The main thing is you look after yourself and be kind to yourself
Erica, I have learned a lot from your helpful description of your lifestyle and experience. Many thanks indeed. My wife and I do a lot of walking (with our old dog) and stay reasonably fit. I do tai chi daily and a bit of meditation. Thanks to Alice’s advice, I have seen my haematologist today and he was very reassuring that my data suggest I’m still at an early stage. My doubling time seems to me to be about a year. At 79, I still feel that I’ve won the lottery and look forward to living with Chronic lymphocytic leukaemia (CLL) actively and positively and, as you suggest, being kind to myself. Thanks again for your support. Keep up the good work please. And keep smiling.
A warm welcome! I see you have received some sound advice already & I would agree about requesting earlier blood counts. I have a different blood cancer to you but mine is plagued with chronic fatigue & sleep disturbance. I agree with @Erica that it does help me sleeping propped up for some reason not sure why. May be worth introducing lots of anti inflammatory foods such as oily fish, blueberries, advocado’s, broccoli, turmeric into your diet to also help with the fatigue. I hope that you can get an earlier appointment & if not I’m sure your GP can carry out blood tests for you. Warm wishes
Many thanks, JJfg. Good advice which I will try out.
Hi Murdoch. 76, w&w 8 years. On 6 month blood tests which are so far so good.
Got used to the state of permaknackeration… Got used to the hypersensitivity to body changes and health matters. At our age there’s usually quite a bit of other wear and tear going on anyway.
I have a Garmin Venu smartwatch and that tells me that my deep sleep, if any, is usually in front of telly. Strange how some of the telly permeates through the deep sleep.
I am reasonably active, try to get the e-bike miles in or do a spot of walking. Nap in the afternoon.
It has taken time to settle in to the diagnosis but now I am unsure about how much the fatigue is down to the condition or general age. It’s a matter of learning to live within the parameters set by the condition. A routine seems to emerge, go with the flow. Off out for another ride today - if the bike’s fully charged.
All the best.
@Rod your post has really set me up for the day and I love your turn of phrase.
I really agree with every word of it and I expect your perspective will help so many others.
Right, I am a 73yr old watch and waiter of 19 yrs and I have nearly an hours walk, mostly along the lovely river towpath to go to Pilates. I have to carry all my Pilates gear on my back which is a work out in itself.
And the biggest bonus is that it is not raining, whoopee.
I also have a watch which is cleverer than me !!!
Please keep posting and I hope your e-bike is fully charged too. Look after yourself
As someone diagnosed with Chronic lymphocytic leukaemia (CLL) in 2014 and only began treatment last year, I’d say it’s normal and no particular need to bring forward your monitoring - you will have plenty of notice as the progression to needing treatment is often very slow and lengthy. As the saying goes, you are more likely to die with Chronic lymphocytic leukaemia (CLL) than from it!
Rod, you really cheered me up. ‘Permaknackeration’ is now going to be a frequent part of my daily patter. Also permapositivity. I have, as you say, various other health factors contributing to permaknackeration and I’m beginning to think that my Chronic lymphocytic leukaemia (CLL) is probably one of the less important ones at my age. Thanks for sharing your advice and humour. I have a golden dog called Brochan (Gaelic for porridge) to keep me fittish and he doesn’t need plugged in. Best wishes to you Rod.
Thanks SpaceAngel. Two different but excellent haematologists have looked after me in the past year since my diagnosis and both have said informally that, given the inherent stresses of being told that you have leukaemia and also given my advanced age, it would probably have been better if I had never been diagnosed. As you say, much more likely to die with it not of it. And who knows what state of permaknackeration is due just to my age and other conditions? The main thing is to stay positive and active. Best wishes to you.