Hi all
Last November I was diagnosed with Acute promyelocytic leukaemia (APL), I was treated with Atra and Arsenic over a number of months and I reached remission in June.
Since then I have been trying to get back to ‘normal life’ but In the last 2-3 weeks I have been struggling with extreme tiredness, Is this something everyone feels? I have tried to reach out to my Leukemia Nurse at the hospital but haven’t heard anything.
Any advise would be great
All the best
Sam
A great big welcome @Sambu I always do think that it is worth contacting someone on your medical team if you get a new symptom or a symptom changes.
I see you have already done that without any response.
After a reasonable time (remembering the holiday season and strikes etc.) I would chase them. Next I would go to their department, then the hospital PALS (Patient Advice and Liaison Service) for assistance.
I would keep a dated diary of what you are doing and also when you feel extremely tired.
You might want to add a sleep pattern as well.
I find it good for showing cause and effect.
It is always concerning to me when I get lumps and bumps and symptoms too.
I find my fatigue is always worse in the hot weather.
Please let us know how you are getting on and if you would like to talk to someone the Blood Cancer UK support line is there for you on 0808 2080 888.
Be kind to yourself and please let us know how you get on.
Hi @Sambu,
I hope you are doing okay today?
It is great news to hear that your treatment has placed you into remission. However we can appreciate how worrying it can feel when you start to notice changes within yourself.
Side effects and symptoms can certainly both remain & fluctuate after treatment has ended but as this is a new symptoms for you it is important to raise it so that you can be checked over.
You have absolutely done the correct thing in attempting to call your nurse specialist. I wonder if this is something you can continue to do as it is likely they will come back to you. In the meantime however, it would be an idea to reach out to your consultant. You can do so contacting the haematology secretary if you have contact details for the team?
Failing that Sam i would also encourage you to access support from your GP as they may be able to escalate and push for communication within your team.
Please do know that if you wish to talk things through with us or have any more difficulty in getting in touch with your team, please do call our support line on 0808 2080 888.
Take Care, Lauran
I’m noticing how stress brings on fatigue, I find if it gets too much, if I can, I lie still for ten mins and it gives me that little break and I can continue what I was doing. Not that simple sometimes but it helps. Best thing is to be kind to yourself, not to beat yourself up and allow yourself to rest.
Hi @Adman what a brilliant idea, thanks so much.
I also attach a link to the Blood Cancer UK mind and emotions.
Blood cancer: mind and emotions | Blood Cancer UK
I will copy this for @Sambu as well.
We all need to follow @Adman thoughts
Yes, be very kind to ourselves