Category: About my cancer

… and I still don’t know if it was the right thing to do!

Last month I went on my first ever ‘protest march’ with a bunch of wonderful stage 4ers. We met at the entrance to parliament. And marched up the short path to parliament. It still counts right?

The march was to deliver a petition for Pharmac to fully fund two breast cancer drugs – Ibrance and Kadcyla – that can extend the length of the disease free period for stage 4 breast cancer (Ibrance or hormone positive tumours and Kadcyla for HER2+ tumours). While there is some Pharmac funding assistance provided, for Ibrance you currently need to pay for 11 cycles at c$6,000. Per cycle. So $66,000 in total. Then Pharmac will fund any additional cycles beyond that if it is still showing a benefit (no idea how that is proven!)
As shown in the recent report ‘I’m still here’ published by the Breast Cancer Foundation, the survival rates of stage 4 breast cancer are pretty woeful in NZ, with a median survival of 16 months from diagnosis (overseas rates are much higher, I found one US report stating median survival of 36 months). I’m Still Here states there are around 700-1000 people (99% women) living with advanced breast cancer (ABC) in NZ. Around 3,300 people are diagnosed every year with 300 at the advanced stage. Around 600 people will die each year. (The stats are all generalised, what does that tell you…). There are numerous different types of breast cancer which means these drugs aren’t for all ABC patients. Best guess is that around 250 might need Ibrance and considerably less, maybe 50, need Kadcyla.

Continue reading “I joined a protest march….”

This is a question I get a lot (yes, yes I know, so do you. Just work with me here).  It’s usually in one of two situations: firstly from someone who knows me but hasn’t seen me for a while – ‘hey so cool to bump into you! How are you???’
Or else it’s someone who knows what’s going on and asks with both interest and concern, ‘so how are you’. In both situations an actual proper answer is required. In the first, there’s usually an awkward pause while I decide what to say, and then I launch into a full blown, detailed update, throwing the person into a slight tail spin, swamping them with unexpected and gruesome details until I finish with something along the lines of ‘but mostly I’m good’.
The second situation can be harder. The person knows the context but possibly not exactly what the last few days have entailed. Mostly, if I’m out in public it means I’m physically okay. Not always amazing but at least okay, and seriously grateful for that. If it’s my bad week, then I’m probably curled up in a ball and easily upset (in which case why are you asking?!). Again a detailed answer is seems appropriate but at least this time gruesome isn’t necessarily awkward or unexpected. But once again I finish with ‘but mostly I’m good’.

Continue reading “How are you?”

So I though I might write a brief little history of my cancer so far. Just in case I have accidentally managed to not tell someone absolutely everything (I don’t over share that much do I???)

So anyway, turns out my family is good at cancer. Two aunts and (I think) all four grandparents died of or with cancer, and numerous others have had or are still dealing with the hideous disease. Oh and two of my sisters have had precancerous growths removed this year.
So it should be something I knew stuff about. But really, no, I knew nothing.

Continue reading “A little bit about my cancer so far”