Today is day 7 of chemo - I am slowly starting to feel sane and regain some much needed energy!
The last few days I have had intense spinal back pain, tightness in the chest and breathing difficulties after minimal activity. Yesterday for example, slight exertion would see me reaching for Panadol Osteo capsules (I am determined to keep the morphine based Kapanol in storage for as long as I can), a heat pack to put on my spine and alternate with my tummy/chest area lying flat for a little while with of course, Charlie by my side (Charlie is my beautiful siamese cat). Having no steroids with this chemo has meant that I am able to sleep for most of the night, waking up every few hours but at least being able to go back to sleep which never happens while having the steroids.
My appetite is not good at the moment however in a few days it will come good. I am missing my antioxidant green tea as my taste buds are simply not there yet!
Sunday afternoon we were invited to our dear friends home who live at Mt Macedon - where the air is beautiful and fresh, the gardens Edna Walling designed and just so lovely to walk around. It was their birthday afternoon spent with friends - altogether about 10 were there making it so nice to enjoy each other's company where the vino flowed freely, good conversation and beautiful food including paella to die for and an orange cake out of this world! Unfortunately I spent most of my time lying on the sofa by the open fireplace with a hot water bottle on my spine taking in the wonderful and beautiful energy in the room thinking just how lucky I am to be sharing in this special day.
We are heading over to Tasmania (Tassie) tomorrow night (Weds) on the car overnight ferry that takes 12 hours. Charlie will be well taken care of at home thanks to our wonderful neighbours and good friends too, and wonderful family as well. We have family who are house-sitting our home so Charlie will be okay and not miss us too much. Heading back to Tassie is a retreat for us both - beautiful wilderness walks on the beach, walking in the national park and of course frequenting cafes and Launceston with the beautiful Cataract Gorge. I am delaying chemo once again - as my oncologist and us (Keith and myself) agreed - it is quality over quantity. Alan my oncologist also said it is life enhancing! I know I will come back refreshed with more energy and vitality to continue living with mesothelioma. In the meantime I will have my laptop and mobile phone so I will still be able to keep in touch with the meso community and raising awareness etc.
On a positive note - it is wonderful news that Mavis Nye in UK - a brave meso warrior has had good news after a scan while being on the MK375 PDL1 trial drug. I am just so pleased for Mavis and to another warrior Alistair who has received similar results while on the same trial.
Unfortunately I am not a candidate for this trial having both peritoneal and pleural mesothelioma plus extensive surgery and treatments over the years. However I have every faith in this current chemo reducing further fluid for me.