One Week In

Last updated: March 2019

I’ve been on my new drug for a week. And I can’t believe it, but I still feel like me! I’m drinking far less caffeine. I’m not needing to eat so many snacks either. And I can get through the day on 9 hours sleep AND FEEL GOOD IN THE EVENING!!!

Trying out a new leukemia treatment

I can’t put into words how this makes me feel. What this could mean to my life. To not have to make a transplant decision.  To not potentially make the decision that would kill me.  To potentially have to deal with debilitating graft versus host disease.  To be able to achieve all that I want to. That I can. That I haven’t been able to.

To not worry about bedtime or the impact on tomorrow of not getting at least 10 hours sleep but really needing nearer 12 hours. Of being able to stand up on public transport. To not worry about getting a seat. I haven’t worn my ‘please offer me a seat’ or my ‘Cancer On Board’ badges for about 2 weeks because I haven’t needed to.

I can see friends in the evening and go to them rather than making them come to me. This is a big deal as most of my friends live in southwest London and I’m in east London. So to continuously ask them to come to me isn’t fair. And it adds around 2 hours to my day with travelling there and back.  But it’s ok!  I don’t begrudge it or have to bully myself into it.  I can do it and do it happily.

Occasional aches and pains

I have noticed little things. My legs have been achy. My knee hurts a bit. I did get a shooting pain down my head last night. But, yesterday I took the dog for a half an hour walk. Did some work. Went and met my cousin for lunch with a 20-minute walk there and back. Walked 40 minutes each way to my co-working space and went to my friends for supper and stood on the train for 20 minutes and didn’t get home until 10:30. I actually can’t remember the last time I could do this on treatment. I don’t think I ever could.  And I don’t think I have been able to do this since, well, at least 2009.

So, I’m ignoring the aches. The skull pain is because I have been heeeeeeectic. I need to be sensible and have a couple of early nights. Only getting 6.5 hours sleep on Saturday night is still having an impact. But, I don’t feel like I used to... I feel happy and upbeat and energised.

Hoping things continue to go well

So I just pray to the gods that this drug is maintaining my leukaemic rate and it hasn’t shot up. And that the accumulative effects don’t build up like they have on others.

It’s been a long 11 and a half and a bit years. But to get to a drug that works AND I get my life back... well, it was worth the wait.

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