Doing pirates

My mother travelled from Australia to look after me when I started treatment and her phone did a great autocorrect last week when she told my sisters on our whatsapp group page that I had a glow in my cheeks and was looking so much better since I started doing pirates.    As interesting as I think that might be, and who knows it might even help my recovery,  she was actually referring to my new found love of pilates.

My friends all chipped in to give me a wishing well to spend in London when I left Australia 3 months ago (thanks again girls) and I finally found something to put it to good use with a course of private Pilates sessions on reformer machines.  The sense of well being and strength I’ve found from this has blown me away – I can see why my friends have become addicted to this wonderful workout.


Today, two days after my first treatment my South African instructor Karen took me through a gentle workout – actually she wasn’t that gentle!   It felt good to get my body moving again and I was perspiring much more than usual – I think the obinutuzimab is still in my system.  She could see the changes in my body since last week – my abdominal lymphadenopathy had given me a bloated look.   I’m hoping the strength exercises will help my poor veins recover too before next week’s treatment and it’s great to leave the studio with that “I’m very much alive” feeling.  Now time for a long hot soak in the tub and a lie down!

3 thoughts on “Doing pirates

  1. You are looking fabulous and taking such good care of yourself Darling Just occasionally remember to take time to breathe and smell the roses. Love you


  2. Just started following your blog. I am currently almost 4 years out on 300mg of Abt199/daily. I too was dx fairly young (47) and am now 60. I too failed FCR and several other trials and was headed to Stem Cell Transplant when I was offered the single agent Abt199 trial. I have no side effects, except some mild tummy issues,my blood remains in normal ranges except my low ALC, I hike, bike and live a normal life. I think you are going to be very pleased with your decision and your outcome. Thank you for being willing to be in a trial, we all benefit from this! Continue to take good care of yourself. Thanks for sharing your story….it’s gunna be a great one!!!

    Priest River, ID


    1. Oh thanks Wendy and thanks so much for sharing your story on the CLL Forum – it was instrumental in making me chase this treatment in the first place and you were much braver than me – joining the trial of this drug in it’s earliest development – I keep thinking of Randy too – wish he was still here going strong x


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