Hello all!
We asked in a recent poll, which topic this community would like to see for our next ‘Ask the Nurse’ thread, and managing fatigue received the most votes!
If you’re struggling with fatigue, whether as a symptom of your blood cancer itself, and/or as a side effect of treatment, you’re not alone.
If this is something that affects you, as it does so many with blood cancer, feel free to use this space to ask the @BloodCancerUK_Nurses any questions you may have here
Please do feel free to also share tips with others about what has worked for you when it comes to managing and coping with fatigue.
Hi , I really struggle with fatigue and seem to be regularly needing a nap , have never experienced that before!
Unfortunately I am struggling to sleep at night even though I still feel exhausted, what’s recommended in this instance
I have Chronic lymphocytic leukaemia (CLL)
Many thanks
Thanks so much for posting. May I ask whether you are on treatment or on ‘watch and wait’? Have you discussed your fatigue with you Haematology team? I ask this as they may be able to support you around this and perhaps review your blood counts, in particular your iron and vitamin levels?
If fatigue or tiredness is new for you, or it gets worse, tell your healthcare team so they can assess whether it indicates a change to your health.
If you experience fatigue as a result of your blood cancer or treatment, there are things you can do to manage it. All the tips here have come from people with blood cancer.
Balance – You need both rest and activity to fight fatigue. It may sound strange, but being more active actually reduces tiredness.
Learn what’s doable for you – Keep track of how you feel each day and week. You could use a fatigue diary or an app. Tell friends and family what works for you and plan rest in between activities – video calls can be draining!
Be kind to yourself – You’re not being lazy. You don’t have to be grateful and positive all the time. If you need a rest day, have one – because looking after yourself is a priority.
Take care of yourself – Living with fatigue can make you feel down. Feeling depressed or anxious can also cause fatigue. Find out more about getting support for your mind and emotions.
It is understandable that you are struggling with sleep, there is some guidance around sleep hygiene here from our colleagues at Macmillan: Difficulty sleeping (insomnia) | Macmillan Cancer Support. Having a sleep routine is really important but I would suggest talking to your treatment team or GP if this continues despite your efforts.
Thank you for your help and speedy reply
I am currently on watch and wait but have an appointment with my consultant in June due to developing some enlargement in my lymph nodes
I heard doing exercise can be helpful and try to walk daily, I used to run but can’t do this at the moment
I will ask and discuss my fatigue at my appointment, there are days I feel as if an elephant is sat on my chest and I struggle to move …
Thank you for all the information, really appreciate it
My 82 year old dad is suffering from extreme fatigue at the moment and we’re really struggling to work out what is causing it.
He was diagnosed with Acute myeloid leukaemia (AML) in December 2022.
Then had six rounds of Venetoclax and Azacitadine until August 2023 which got him into remission.
He continued to have blood transfusions until October 2023 and was feeling pretty good up to about a month ago. His bloods are the best they’ve been since diagnosis so we are baffled.
He’s been getting terrible neck and headaches that make him dizzy too.
My partner is literally driving him to the hospital for another blood test as I type, but I wondered if the fatigue months after treatment was common.
I will copy your question to the Blood Cancer UK nurses @BloodCancerUK_Nurses for you.
I hope your dad has told his medical team all about his terrible neck pain, headaches and dizziness.
Take lots of care of yourselves and please do let us know how he gets on
Thanks so much Erica. Haven’t had the blood results back yet, but the nurse took one look at him and said he needs a blood transfusion. So it seems there probably is an explanation for the recent fatigue. We just need to get him through the night at home and then back to the hospital in the morning.
Then we deal with what the potential suddenly drop in his blood count means.
Good afternoon @Ilona ,
I am so sorry to read your posts here, I do hope your Dad was ok over night and has made it in for his transfusion today, hopefully he will feel much better with the blood top up.
I hope the hospital are able to explain a little about the blood results today so you can have a better idea of what is going on.
Do contact us if you want to talk through anything, we are available on our support line on 0808 2080 888 and would be happy to chat with you.
Do let us know later how things went today.
Best Wishes,
Heidi J (Support Services Nurse)
Thanks so much for the reply Heidi. Unfortunately the bloods showed the Acute myeloid leukaemia (AML) is back, very suddenly and it looks like has Tumor Lysis Syndrome too.
The doctor sent an ambulance at 3am to get him so I’ve been at the hospital with him since.
He’s having treatment for both in A&E and we are waiting for a room up on the haematology ward.
So the fatigue has been explained! Just not in the way we hoped.
@Ilona I am so sorry to read this. I do hope he gets up to Haematology soon, you must all be utterly exhausted. He is in the best place now and getting some treatment which is good, hopefully he will at least feel a little better from the fatigue/symptoms, although I am so sorry that this wasn’t the news you had hoped for. Do make sure you get some rest when you can, have you got some support around you?
Do reach out if we can help with anything at all.
Best Wishes,
Heidi J
Thank you. My mum is here too and remaining remarkably strong. My partner is home at mum and dad’s and he’s fantastic. He used to work in cancer drug development so understands a lot of the medical stuff when we don’t. And he’s very calm in a crisis. So we’re doing ok.
Hi, not sure if I’m posting this on the general chat or as a response….sorry, useless with technology! I’m a Non-Hodgkin lymphoma (NHL) patient. I suffer with bouts of fatigue and the annoying thing is that I don’t even sleep well at night. Recently I turned to Sleepstation to help with my sleep issues. I have found it so helpful in re-educating me on sleep and delighted with my progress (initially on the insomnia scale but have recently broken through to normal sleep). So I know it’s not necessarily addressing fatigue but it has helped me to get a better nights sleeps. I did have to pay to join (about £160 with the NHS discount) but for me it’s been worth it. It may not be for everyone but just thought I’d mention it. You can watch some of their videos free of charge that take you through their approach. Just thought I’d mention it. All the best to everyone. Sue
PS for those interested, just google Sleepstation.
Great to hear from you again @Hillssy but so sorry to hear about your fatigue and insomnia sleep problems, it must be miserable for you, but glad you have found a website that is helping you.
Don’t worry about your technology skills you are doing absolutely fine in my book.
The important thing is that you do post.
In the last couple of years there is definitely a swing towards the benefits of fresh air and appropriate exercise to help with fatigue upon occasions.
Really look after and be kind to yourself
Thank you very much Erica. Yes, your suggestion of fresh air and gentle exercise is a great focus. I recently had a post viral fatigue syndrome that really knocked me out for 6 weeks (and was unfortunately hospitalised for tests during that time). My energy levels were so low, and I was initially exhausted all the time….but still couldn’t get a good night’s sleep (hence joining Sleepstation). For the fatigue it was recommended that I tried to get out of the house for frequent but short periods with a graduated exercise routine. At first I could do very little, a 5 minute walk from the house and back, if that. But gradually it’s become much longer. The advice was not to do too much so as not to suffer the consequences the next day but to pace myself instead. It did help. It was difficult not to get frustrated when my mind wanted to do simple things, like a bit of gardening or a coffee and cake out with friends, but my body wouldn’t let me. I gave myself little goals and gradually built on them and I’m feeling much better. I also made sure I ate little and often and gave more attention to my diet/food intake (introduced more plant foods and reduced gluten). I appreciate post viral fatigue is different from “blood cancer fatigue” but maybe both can be helped by these management techniques. Just thought I’d share my experience. Sending best wishes to everyone x
Dear @Hillssy,
Lovely to read all your really helpful tips and tricks here, I am sure they are going to really help some of our forum users.
I am so glad you are doing well and it sounds like sleepstation is really helping you, I hope you continue to make good progress.
Best Wishes,
Heidi J (Support Services Nurse)
Oh @Hillssy it sounds as if you are doing brilliantly and really trying to help yourself.
Yes, I did the same with exercise, just building it up slowly.
Do you know the saying ‘slow and steady wins the race’
Your experiences are so valuable on our forum, thanks so much.
Be kind to yourself and please do keep posting.
Hello I’m Paul, Diagnosed with Myelofibrosis last December. I am on watch and wait. Next hosp appt on 1st July. I was prescribed Steroid Dexamthasone at last Hosp appt in March. Initially I felt normal (I am a keen Walker and love the outdoors.) Over the last six days I have developed shortage of breath. Moving short distances causes me to start panting, I have no energy. Should I request an earlier hosp appt. Due to go on a weeks holiday in June when I had hoped to do some walking but this is not possible with the way I feel now. Any advice appreciated, thanks.
Paul
Hi @Paul2 I am glad you have posted.
I am not a medical person.
Please do try and get a quicker appointment with your consultant, but it might not be possible.
Alternatively your or a specialist nurse is often a useful contact.
Or perhaps try and get a GP appointment in case they can help you.
Be kind to yourself, I know what it is like as I was the same as you over the Christmas period.
I would struggle a little way down the road, then stop, and pretend to look in my bag for something or look at my mobile.
This was under very different circumstances and I have now built my walking back up.
Just my thoughts, be very kind to yourself and please do keep posting how you are.