The Big Sleep

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.

7 thoughts on “The Big Sleep

  1. You’re doing so well, Deb. And looking great (as if you could ever look otherwise!). Keep up the good work, CAR-T! xxxx


    1. You are looking amazing and as Sam Upton said “you never look otherwise!” Keep on keeping on Darling! Love you, Mum 💕🌈🙏


  2. Great to see your face, Deb. Keep at it. The blog is a wonderful, but both awe inspiring and scary thing to read. Thinking of you and the very best wishes.


    1. Thanks Will! Definitely looking forward to getting to the other side of this. Day +18 now and still in the danger zone for the next 10 days or so but fingers crossed I’m feeling a lot better and am with my children this weekend which is always good for the spirits x


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