This is an update from Rainer. I'm sitting with Emmaline at Caritas Christi where she's getting respite care. She's not feeling well enough to update her blog, but has asked me to do it for her.
Through March Emmaline continued on her gruelling course of the chemotherapy drug ifosfamide. But on 10 April she had a CT scan which showed that the drug wasn’t working and that her disease was progressing. She stopped taking the ifosfamide, and took a break from treatment to recover and take stock. However through this time she continued to get increasing pain. On 6 May we had another appointment with her oncologist and we talked about what to do. The oncologist suggested two possible courses of further treatment: a combination of Gemcitabine and docetaxel, or pazopanib. Alternatively she could just stop or postpone further treatment. The combination therapy has a higher chance of reducing the size of the cancer tumours, relieving her symptoms and extending her life by some months, but is also more likely to have unwanted side effects. And a significant proportion of people receive no benefit. The pazopanib is unlikely to reduce tumour size but will probably inhibit their growth, and the percentage of people who have bad side effects is a lot smaller. But the studies on which the relative probablities are based are small and full of unknown variables. It’s impossible to know what the best choice is. What Emmaline is clear about now, especially following the experience with ifosfamide, is that she wants to maximise her quality of life in the time that remains. She doesn’t want to hold out hope for some remote reprieve, if it means trading in or risking quality of life now. We all decided, hesitantly, that she would take pazopanib.
However, that same night, before commencing the treatment, she started getting overwhelming breakthrough pain. We contacted Melbourne City Mission who were able to act quickly, sending out a nurse to administer intravenous pain medication that provided relief. After a couple of days they arranged for Emmaline to be admitted to Caritas Christi Hospice for respite care, and she has been here ever since.
In many ways it’s confronting being in a hospice, but the level of care and comfort that they can provide is so much higher than what's available at a regular hospital. Emmaline was expecting to come in for a short time, but it's really starting to drag out now and she's keen to come home. She's been having a difficult time with pain, fatigue, and lymphoedema in her leg which makes it difficult for her to move around. The current plan is to stabilise her medication and return home. This could be in the next couple of days or early next week.