Day +16 – Wednesday

So skipped writing yesterday as spent about 20 hours of the 24 hours sleeping – could not stay awake to save my life. I think the previous 6 days had caught up with me. Have felt so much better today, not back to normal but I’ve been able to stay awake and even got stuck into some admin chores, I couldn’t even face doing the cognition tests yesterday. So I’m feeling brighter and have done my hair and makeup for the first time in days too.

My partner Nicholas is crossing the days off the calendar – day 16 is past the half way point for issues to happen – I’m told the first 28 days are the most dangerous for CRS and neurotoxicity and I’m hoping I’m through the worst of that.

I do have weird aches and pains. The lymph nodes under my left armpit, which is where the lymphoma part of my disease always seems to take off, are very sore today, and I’ve got joint pain in my shoulders, elbows and hips. Yesterday I also had a headache and pain down the left side of my face, jaw and neck – again this is where I’ve had problems with lymph nodes filled with cancer in the past so I’m hoping it’s the CAR-T doing it’s thing on my disease.

Who knows what tomorrow will bring? I’m back in the Peter Mac for bloods, an ECG and a check up with Carly, my trials nurse (she’s photoshy but I’m working on her!). Hopefully I’ll get more results tomorrow.