I chat with Lz & B in the morning and when they leave on a bike ride to Chelsea Sugarworks I go and get my weekly blood tests done. I am loving having Lz & B here and they are very easy people to be around but I’m knackered just from all the socialising. By the afternoon I am so tired I decide to lie down for 30 minutes. Just to rest – I know I won’t sleep. 

After about 10 minutes the phone rings. It’s Dr Sk. Unexpectedly. What is she calling for? I answer, exchange pleasantries and then she tells me my PD-L1 test has come back negative. So that means immunotherapy is, once again, off the table as a treatment option. Part of me is relieved that we won’t have to find $80K to fund treatment, but I also find myself surprisingly upset. It’s just another dead end, another line crossed off the list of possibilities. I bypass Lz & B in the living room, find Susannah in the office and tell her. I can’t help myself. I cry a little. It’s so frustratingly unfair. Still, as Dr Sk says, with my neuroendocrine differentiation the potential effectiveness would be unknown until tried, so at least we are not just throwing money away. I’d pretty much chuck money at any possibility now though, I think.

I pull myself together and start making dinner – or should I say heating dinner as it’s already prepped. We watch The Hunt for the Wilderpeople – a nice piece of kiwiana for the Canadians and a welcome distraction for me. It’s also cool because, like me, the character of Ricky Baker uses haiku to process his thoughts and emotions. I get it Ricky, I get it. I write a new one.

Haiku 11

It’s one more dead end
Another option now gone
I will not give up!