Hi all…it’s been awhile since I posted.
I was diagnosed with Chronic myeloid leukaemia June 23 and struggled with side effects of bone pain and fatigue which Ive got used to.
Lately I’m feeling so anxious …my bloods are stable but recently numbers of wcc and leukocytes are increasing each draw…i also have really high ferritin levels 980 and recent had a LDH blood test of 270….
My heam nurse isn’t concerned as my wcc still around 10.5 which is normal …I’m fretting as each time I have bloods they have increased.
I’m so tired of feeling tired …struggling working full time but can’t afford to drop my hours at the minute …
Just feeling low and struggling to lift my mood….sorry for moaning …I know it will be ok just going through a mental dip 
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Oh @Beagle you are definitely not moaning, I think a lot of us will relate to what you call your ‘mental dip’.
Yes, I really know that feeling of feeling so, so tired.
Then it is that feeling of feeling low and struggling to lift my mood.
That is what I call my fatigue.
(Sorry for using the word feeling so many times)
I will copy you the Blood Cancer UK details on fatigue and money and work
Fatigue | Blood Cancer UK
Blood cancer: money and work | Blood Cancer UK
I am so glad that you posted, you knew where to come.
I know your job and finances constrain you, but I wonder if your employer might be able to help under ‘reasonable adjustments’ say for you to have more, but shorter breaks, if that might help.
Please do let us know how you get on but we are always here for you.
Be ever so kind to yourself and really look after yourself
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Thankyou Erica …I just needed to share how I was feeling …I will take a look at the resource …thankyou for everything you do xx
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Hello @Beagle, I wanted to thank you for having the courage to share how you are really feeling at the moment. Apart from hopefully helping you, I think it will help others (me, for one) to accept and understand that it’s okay to not be okay all the time. Our emotions and mental health is equally important as our physical health, in my opinion, and the two work hand in hand. It has taken me many years to give myself permission to acknowledge this and to be kinder to myself, so thank you for your honesty. Warmest wishes Willow x
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Dear @Beagle,
Thank you for sharing how you are feeling. That in itself is a huge step.
I can relate with what you say. I was diagnosed with Chronic myeloid leukaemia 13 years ago. Like you I struggled with chronic fatigue as well as adapting to my diagnosis and living with Chronic myeloid leukaemia. I was doing well in terms of responding to treatment but I hadn’t anticipated the impact on my mental health. I kind of felt that I had no reason to be feeling low or tired given from a medical perspective things were improving, which of course was not true.
You’ve already been given some great advice and words of wisdom. The key thing for me was to really listen to what I needed rather than just pushing on. It’s not easy, I know.
It is definitely worth having a conversation with your work to see if they are able to make some adjustments. When I was first diagnosed I took some paid sick leave as part of my contracted entitlement (I appreciate this differs with employers). I was very fortunate that my employer was very understanding and allowed me to return on a reduced schedule for a period as part of the sick leave. By talking to them you can help them to understand what you are dealing with, particularly when to the outside world you likely look fine.
Through my care team I was also fortunate to have access to some counselling to help me adjust to my diagnosis and understand how to better manage the fatigue. Perhaps it is worth speaking to your care team to see if this something that they can support you with. It is certainly important to make them aware of the struggles you are facing both physical and psychological.
And of course, keep sharing with us here. Just getting the feelings and thoughts out in the open can really help. Be reassured that you are not alone in what you are experiencing and that it will improve. Give yourself time and kindness.
Take care,
Maggie x
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No apologies needed! We all understand how you are feeling and this journey is a roller coaster of emotions.
Feeling anxious can affect so many aspects of our life can’t it. I know when I feel like that sleep is such an issue which impacts work and home life.
I can see others have given lots of advice and understanding which is what the forum is all about.
I’m glad you felt able to share how you are feeling. Sometimes it can help just getting it out there. And remember, it’s ok not to be ok X
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It’s the narrative of it’s the good cancer …I beat myself up telling myself there’s nothing wrong with me …then I get pain and so so so tired …I wasn’t well and had an infection of unknown source which then dropped my mood which I’ve struggled to pick back up …just tired and need a rest …when I’m tired and bloods all over place makes me fret ..:I sleep so well as I’m exhausted but still wake up tired 
Hope you are doing ok x
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I have some reasonable adjustments in place and able to work from home and take breaks…however….i push through as I don’t want people to think o can’t do what’s expected of me …this then resulted in my taking a two year degree in my own time on top of working full time as my appraisal objective was to do a leadership course ….maybe I have taken on too much…the assignments and on top of full time management nurse role making be getting to me x
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I’m sure I will pick myself back up I just needed to reach out …others don’t understand how I feel ….thank you all for supporting me …it’s means so much xx
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My anxiety and lack of sleep are my biggest problems at the moment. Diagnosed Jan 2025 so all still raw. Fortunately I’ve recognised the anxiety side of things (never suffered with it before). It’s so debilitating. I’ve reached out to the professionals and am starting to get counselling. Again, I’m not a big believer in things like this but I’m trying everything. Determined not to let the anxiety and sleep deprivation be the things stopping me doing anything. I’m neutropenic too at the mo so not being able to go out much or mix. Again not good for mental health. Self care is massive. I’m trying hard to be kind to myself too. If you need help ask for it please, or communicate here. I’ll always reply.
Diane
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Please don’t push yourself to hard. We have to give ourselves a break sometimes - as we all say, be kind to yourself. It’s hard but important x
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