a colorful patchwork of hair reveals two versions of the same woman. one version is exhausted and one is smiling and happy.

A Mixed Bag

Last updated: July 2020

I’m tired. I’ve been tired for a while. I had a very busy month a while back with the flat that I rent flooding in crazy rain that we had which has meant that I’ve had to stay with friends for a few weeks whilst that’s been sorted. Whilst it's been amazing that I have people I can stay with in London and carry on with my life, it's still tiring not being in your own space and living out of a suitcase.

Life catching up to me

I also flew to the states back in November and whilst I don’t really get jet lag, traveling is exhausting. Whilst I was able to have chill time when I was away - I basically spent 5 days at my best friends house (who lives in the States so I went to see her after the Health Union conference), chilling on the sofa, and not doing much other than a longish walk every day to hit 10,000 steps (because I’m mental), and I still felt tired.

It might of course have been the travel out, concentrating at the conference, and a mental 2 weeks beforehand catching up with me. The following week, I was exhausted! Admittedly, I had hit the ground running since landing back home. A few days later, it felt like I had been back for a month. So that weekend I needed to do nothing. I started doing nothing after my meeting that Friday morning. I know without a doubt the 16-hour door to door journey and only 2 hours sleep on the night flight back hit me just 2 days after getting back. So I’m really hoping it’s life and not my drugs.

And finally, some good news!

On a happy note (yes, I do have them occasionally!) my leukaemic rate is behaving! Or rather, the leukaemic cell number is. Over the last 4 check-ups, the number of leukaemic cells has been doubling each time - the leukaemic rate has been fairly stable, only changing by 0.001 of a percent which is basically nothing; but the number of leukaemic cells increasing caught the attention of my consultant, and not in a good way.

I had a check-up a couple of weeks ago and she said that I might have to increase my dose if the leukaemic cell count increases again because it’s not a pattern that she wants to carry on until I stop being in major molecular response, also known as remission. So I emailed her and see how it was and... THEY HAVE GONE DOWN! Which is AMAAAAAAZING!!!!! I was really dreading increasing my dose and the potential impact that was going to have on my energy levels. So fingers crossed it’s all settled and under control.

Hoping for a change in my energy levels

I've also started taking my drugs at night instead of in the morning to see if that helps with my energy levels. The reason I didn't do that from the start is because of the fasting window around them. I can't eat anything for 2 hours before taking it (or an hour after), but my consultant said that I didn't have to be too strict about it. Which made me much more relaxed about taking them in the evening and not worrying if I eat later than normal because of going out.

My next check-up is in 4 weeks so I will get those results in 6 weeks. Time will tell with both the leukaemic cells and my energy.

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