Morning, In August i was diagnosed with Chronic lymphocytic leukaemia (CLL) fortunately my levels are low and i am on watch and wait.
I have read up on all the information that my consultant advised and a bit more.
Lots of the information relates to fatigue and tiredness can this actually be the case with low levels or would this be if and when treatment is required.
The reason i ask as since my diagnosis i seem to be tired and get stressed, i dont want to change my job although it can be stressful.
thanks in advance Andy
1 Like
Hi @AndyC a great big welcome to our forum, I was diagnosed 20 yrs ago with Chronic lymphocytic leukaemia (CLL) and I have always been on ‘watch and wait’ or ‘active monitoring’ as I call it.
Fatigue is my main symptom.
I have really got to know myself over the years.
Since my diagnosis I have never dealt with what personally stresses me well and it fatigues me.
My fatigue also comes on after I have overdone it medically, emotionally, physically, psychologically and practically and it can come on immediately or up to 48hrs after the event,
Sometimes I need a nap, sometimes a duvet dive or some fresh air and appropriate exercise.
I think that everyone is a unique, special person with their own medical history and a medical person takes a lot into account in making a decision on a patients way forward.
I say long may I stay on active monitoring.
Do your employers know about your diagnosis?
I could not explain to work what I did not understand myself.
I think we all thought that I would be treated, cured and we would all go back to ‘normal’
As an example I could attend local meetings, but I could not travel across London in the rush hour as I got feint when standing on public transport in the rush hour.
The Blood Cancer UK support line is there for you on 0808 2080 888.
I am happy to answer any questions you might have.
Give yourself time and be very kind to yourself and please do keep posting
2 Likes
Thanks Erica, i have notified my employer and will look to discuss further ways they can assist as working 8 hours daily is definitely taking a strain on me more mentally than physical but i do feel its wearing me down.
2 Likes
Hi @AndyC we are covered under the Disability Discrimination Act 1995 and the Equality Act 2010 as employers have to make ‘reasonable’ adjustments for us, what is reasonable depends on many circumstances.
Mind you I found I did not want to permanently cut down my hours as it would have affected my final pension.
My trick was to be pleasantly assertive, but look at it from both sides, and try and keep communications amicable and ongoing, your needs might change.
So please do take advice from your union, ACAS or Citizens Advice
Look after yourself and please do keep posting
2 Likes
Hi Andy,
Welcome to our Online Community. I’m so glad you felt able to post and share what’s happening for you. Fatigue is something that comes up a lot here as does work, so please know you’re not alone and you can find other posts about these by using the search bar at the top.
I can see that Erica has given you some great advice already. I just wanted to also share our information on Blood cancer: money and work | Blood Cancer UK in case there’s anything further here that can help your conversations with your employer.
You mention that you’ve notified your employer already. This free information booklet may also be useful to share with them as it explains more about blood cancer and your rights at work: If your employee or colleague has blood cancer | Blood Cancer UK Shop Hopefully you can have a conversation with them to make work more manageable and support you in your stress. It’s only been a few months since you were diagnosed and there’s a lot to get your head around and work out what works for you in terms of managing your fatigue with your work.
Take good care of yourself,
Kind regards,
Ali
2 Likes