I’ve reached a milestone I’ve been waiting for a long time for – a change in the frequency of treatment for my desmoid tumour.
I have been given the go ahead by my oncologist and the scientists behind the trial I’m on to see how I go having the infusion every three weeks (I have been doing it fortnightly for over 2 years!)
I had been hoping for every 4 weeks but I’ll happily take this in-between.
It does bring up the frustrations that rare disease patients like me face. I’m part of such a small study (there are only 4 people on the same treatment as me), and my tumour is still largely unpredictable – so knowing how soon to make changes to the regime that 3 other people have been following isn’t something that can be answered, or rushed in to.
So it’s inevitable that while I’m so happy to get this extra time off, I also have started pondering to myself..
- When will I finish treatment?
- Will I be on some sort of treatment for the rest of my life for this tumour?
- If I do go onto watch and wait down the track, how will my tumour respond? I still fear at the back of my head the tumour growing aggressively again, and being stable for so long has lessened this fear greatly but I do wonder what it will decide to do if not being attacked regularly by this super drug!
I know that all will become clear down the track and need to remind myself to live in the moment, things are good right now and that’s evident by the fact I can reduce my treatments.
My tumour is stable, I get an extra week of my life back before having to think about treatment and who knows what I can do for self care and my wellbeing to celebrate this extra time.