Well, something quite monumental happened recently, in a positive way! I received my LAST chemo prescription for hopefully a REALLY long time! I was quite sad when I took, what was meant to have been, my last chemo tablet from my last prescription that I got before all the COVID-19 nonsense and finding out I had to stay on treatment for a while longer. But, my results have stayed really good this year, which is fab because you never know, so my consultant is still happy for me to come off treatment.
If my consultant had said that I couldn’t for whatever reason, or said I could but not for another year, I would have lost my sh*t and I probably would have come off treatment regardless and probably not told the man and tried to get pregnant that way. And yes I know, that’s full of ethical no-no’s and going against the advice of my consultant, etc. But luckily, I don’t have to do all that as she is still really happy with where my results are. YAY!
Avoiding another stem cell transplant
It’s also good because my fatigue has been getting worse and I don’t know if I could stay on this drug for the foreseeable future, as I know I just get worse and worse as time goes on, and I am at the moment, out of options to try anything new. And I don’t really want to have to think about a stem cell transplant again, not now that I have baby stuff in place for next year. I couldn’t do the transplant with a baby. I mean, I know that people do and they get through it, but to choose to do it with a newborn would be a pretty bonkers option. So luckily, I don’t have to do that.
This is also the longest I have been on any treatment, since around 2011/2012 which is also pretty amazing! I still can’t really believe it. I also can’t believe I’ve been on it for just over 2 years. I vividly remember getting it for the first time and it feels like a few weeks ago. But then again, January 2020 feels like it was about 5 years ago. It’s very odd.
I don't mind being at the hospital much
I’ve also been down to three monthly checkups this year and this is the first time this has happened since 2011/2012 too! For the last 8ish years I have been at the hospital between weekly and 8 weekly for most of it, which you really wouldn’t expect as most people after a year or less with chronic myeloid leukemia (CML) are down to quarterly or even 6 monthly.
I don’t mind having been at the hospital this much over the last however many years. It’s just a side effect of changing treatment so much and being so unhappy because of fatigue. It also means that when I am off treatment, it won’t be a shock to be back at the hospital probably fortnightly for a while as I’m monitored off treatment. I’ll also be there frequently for fertility stuff, so it’s a good thing I don’t mind being there.
Have you met another blood cancer patient?