Hi, Steve. I am in Melbourne, my ‘Miss Cholangio’ was diagnosed in Oct 2015, after I had symptoms of menopause, it was already 7cm x 8cm in the liver, and wrapped around all three major blood vessels, so no surgery for me. And a liver transplant was out of the picture, because the anti rejection drugs would cause any metastatic cells to grow, even if nothing else was visible on imaging. All clear on CT, and PET, so started on gemcitabine and paclitaxel, which gave me numb fingers and feet, but got rid of the hot flushes and night sweats, and skin lesions. Then radioactive seeds implanted into my liver, May 2016, finished chemo March 2016, liver tumour now 6cm x 7cm. June 2016, loss of balance, headaches accompanied by projectile vomiting (just like a hard night at the pub: except I don’t drink), yay! Scored a brain metastasis, which is really rare in an already rare tumour, brain surgery 1/1000 chance of death) and radiotherapy in August/October 2016. Recurred in January 2017, more brain surgery ( you may never get out of bed again) in April, one day short of the 12 month anniversary of my father’s death from pancreatic cancer, and two days before my mother’s birthday on Good Friday (6 years next month since she died of brain metastasis from her breast cancer, which had been deemed ‘cured’), more radiotherapy in July 2017, as the brain metastasis was back. Again. Now, I am on a trial drug at Peter Mac, since I have a rare (don’t you just live that word?)mutation, but seems to be controlled at the moment. But constant fatigue and numb feet and fingers, loss of balance. No more playing hockey, need to resign from work (the kicker: I was the dentist at Peter Mac, trust me, head and neck cancer side effects are even worse), need to do rehab. exercises (saw a third exercise physiologist today), can’t drive, play with the boys (13 1/2 and 15), even doing the dishes knocks me out for the day, can’t cook…but still alive…some days…

Elishka Cross (Marvan)
elixian1@bigpond.com