Hi everyone, I’m almost 2 years post stem-cell transplant to cure Acute myeloid leukaemia ('AML'). And I’ve noticed something. I can be very aware when my time is being ‘wasted’ now.
Wasted as in putting effort in to do something and it doesn’t happen. Or if I put time aside to have some personal hobby time, if that gets thwarted by something else … I can start grumbling. And if I deem I have wasted my own time, well personal kindness kind of evaporates.
Or sometimes if I am trying to focus and getting interrupted…
Before all this started, I was generally not like this.
I went through a lot before, during and after the transplant. A chunk of about 2-years cumulative spent either in hospital or home isolation. Still masked up because my immune system is still rebuilding with new inoculations going in. Energy management is still a work in progress - still very easy to get it wrong and crash.
Has anyone else who has experienced this? If so, any suggestions? Thanks and best of luck to you all.
When I was first diagnosed with Chronic lymphocytic leukaemia ('CLL') it was a time when I reflected on my life and priorites.
I quickly learnt how to say ‘NO’ and give up roles and commitments that I was not enjoying.
I reassessed my relationships and what I wanted to do and with whom.
I am far less materialistic and realised that the best things in life are free like good family and friends, music, nature and walking,
I manage my fatigue on a daily basis.
Yes, and I begrudge anything or anyone that changes what I want to do and when, I try and keep my life as destressed and decluttered as possible. I call it my self care !!!
@DuncanB and @Erica have spoken to this brilliantly from their own experiences, and I hope it helps to know the feeling you’re describing often seems to come with the territory for many people after everything you’ve been through.
I wanted to share this piece on our website from someone who had a stem cell transplant for Acute Lymphoblastic Leukaemia. He talks about the strange frustration of that in-between stage and some of what shifted for him over time.
And if you ever want to talk any of this through with someone, our Support Line is there - you can call on 0808 2080 888 (option 1) or email support@bloodcancer.org.uk.
Thanks Erica, there are some people it is very difficult to say no to, but I am working on that.
I admit that when I have looked into how to manage my fatigue and understand it, a lot of the answers are to record a fatigue diary which doesn’t work for me. It just seems like another task to mash in to a day of tasks and energy management anyway. Can I ask how you manage your fatigue?
And I appreciate the link. I am looking at restarting a home exercise regime and these will help.
During the first year after transplant, I definitely had chemo-brain-fog moments. And yes the first 4 months after being discharged were a slow trawl. I wonder when I stopped taking one day at a time ..
And I have good support - my fiancee is my best cheerleader
Thanks for a beautiful post @Catwithahat I teach courses on psychological aging, and one idea from that (and from my own life) is that when we have events that remind us of our own mortality, it changes our perspective on life. We often realize how precious life is and that we don’t have an endless supply of it. This can make us focus on making the best use of our time to do things that matter. Another interesting part of this that you didn’t mention is that we often prune our social relationships a bit, wanting to spend time to people we are really close to, not being as interested in being around lots of people. That has been true for me.
Good for you for not putting up with things and people that interfere with living your best life
