Hi everyone - I wanted to post my own update to let you know how I'm doing but most importantly thank everyone from the bottom of my heart for your overwhelming support and generosity.
My heart has been bursting with love and strength reading all the messages and seeing the support come in. I have been crying happy tears daily and I feel truly blessed and humbled at the kindness of family, friends and strangers who are trying to help me pay for unfunded drugs to help save/extend my life.
It has been just over a month since my cancer diagnosis and subsequent bowel surgery. A week ago I had “Portia” the Port-A-Cath inserted and then a whole day of chemo. One of the drugs I received was the unfunded Avastin (the first little bag cost $3500 per hit!). The chemo has made me feel pretty sick but I'm feeling better heading into week two and I'm thinking, if I'm feeling the effects, it's working!
My brother Kris loved surfing and the past four weeks I’ve often felt like I have been riding the mother of all waves at a place called Porridge he used to go. (And not in an exhilarating way!) However, along that whopper wave there have been moments of laughter, love, tenderness and care that I guess I always knew surrounded me but not to this extent.
There have also been, I believe, little moments put in my path deliberately to ease my mind and let me know the (universe?) might just be watching over me.
One of the most recent was getting “Portia” inserted. That was done under a local so while I was sedated I was wide awake (in fact I suggested they top me up as I didn’t feel the effects at all...I had to remind them I was a heathy-sized Southern girl who would take a lot to tranquillise!). Anyway, they kindly topped me up but i was quite coherent through the whole thing to be able to quiz the doctor about his life and career. He just happens to also have an interest in liver cancer and has some (non funded) procedures he does in NZ one of which can be done on people with more than three lesions on the liver (me!). Rest assured, that doctor will not forget my name. An Irish nurse whipped off her mask after he left and told me “you were meant to cross paths with that doctor today...he rarely does these procedures these days”.
Other drugs I am likely to need after this round of chemo in three months are FOLFOX-BEV $19,320; BEACON $62,600; and STI-PEM $126,600 ... so I am extremely grateful at every single contribution helping me pay for these drugs. It is quite frightening having to rely on the kindness of others to help pay for drugs that can potentially save my life.
I'd like to leave you with a quote that I serendipitously read in the author's note while heading home from hospital last week:
"...to all my fantastic readers; if I have learnt one thing from the past year, it is that the moment is truly all we have. Try, if you can, to relish it, in whatever circumstances you find yourself, and never give up hope - it is the fundamental flame that keeps us human beings alive."
(Lucinda Riley, June 2018)
Thanks for helping me ride this wave everyone, Jo xxx
