June – still off treatment

Surprisingly I am still not on any new treatment. While my ratios are bouncing up and down like yoyos, my kappa levels were stable at my previous appointment and went down a bit this month. Difficult to know what is happening. Angela, my consultant has decided we need to take a look at my bone marrow as it’s ages since I last had one, and also to do a full x-ray skeletal survey. Also a synacthen (adrenal gland) test, as my blood pressure is still very low and I’m very tired.

I had a bit of a weird day as I went in for my Zometa drip, blood tests (all fine) and to see Angela. Then  I zapped into town to visit the TUC Austerity Bus which I had helped to organise, and to top up my parking. I then went back to haematology to do a blood pressure postural survey which meant a 15 min lie down and then BP measured lying down and then standing.  As soon as I lay down my heart started thumping away for no apparent reason, which lasted 15 mins. My pulse rate was really high when my BP was measured. The BP itself was well up on normal, with a 7 point drop between measurements.  So no idea what caused that, unless it was all the activity combined with the Zometa.

Since then I have ached very, very badly – only just seem to be getting better. Also felt a bit like I was having a low dose of flu, which is usual for me after Zometa and also a bit anxious. Having looked up the side effects again I see low blood pressure is one, so may be a contributing factor.

Will write again probably after my colonoscopy.