Patience can be thin, 2 years post transplant

Living with and after blood cancer
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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.

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Hi @Catwithahat

I’m so sorry to hear that you’re having a tough time.

The road from Stem Cell Transplant is indeed a very rocky one.

I had my transplant just over a year ago

The first few months were hard going for sure.

I found setting myself small targets helped.

A few more steps of walking.

I also started doing the exercise videos on this site which helped a lot.

Pacing yourself is important in my experience.

I’m still masking up when in shops or cafes and tend to avoid busy times.

At present doing well but never take anything for granted. One day at a time is definitely my approach these days.

I’m hoping that you have good support around you.

Hope this helps. Go easy on yourself and take care

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Hi @Catwithahat great to hear from you again.

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 !!!

Be kind and look after yourself @Catwithahat

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Hi @Catwithahat,

@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.

Take care,

Ceri - Blood Cancer UK Support Services

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