Some of you may have seen 60 Minutes on Sunday evening. It featured the story of ‘Patient 71″, a woman named Julie Randall who was diagnosed aged 50 with metastatic melanoma. She found a place on a US clinical trial and is now in excellent health. There is much that is great about her story. She was very much her own advocate and aggressively sought out treatment options. But the rhetoric around the story was less than great.
The 60 Minutes Story ran a very strong line that Julie refused to die and leave her teenage children. As if it is really a choice. I now know far too many mothers and fathers who have died leaving children much younger than Julie’s. Not one of them wanted to leave their children. I suppose I shouldn’t expect much more of 60 Minutes than the trite and cliched. And yet it annoyed and upset me.
It is similar in some ways to the battle metaphor for cancer. Sure, down in the depths of illness and treatment, it most certainly feels like a battle. But the inference that a metastatic patient has that level of influence over whether they live or die offends me.
My great grief if this disease takes me too soon is that I will be leaving Violet before she is grown. Because of this, I go back uncomplainingly (mostly) for more and more chemotherapy. I sign up for painful and risky surgeries to buy me possibly some more time. I have unpleasant treatments that mean I can’t hold Violet for a number of days. And I will keep choosing these until there is no more choice.
It is pure luck that at the moment in time science has some temporary holds for my tumour. As much as I have sought out treatments, advocated for myself and sucked up unpleasant side effects, painful treatments and actively tried not to die, I can only give myself so much credit. That I am still here is mostly luck – luck because the mutations in my cancer respond to existing treatments, luck because I am young and physically strong and luck because I have the range of financial, intellectual and social resources required to navigate the medical system.
I’m in a funny limbo at the moment. I’m waiting for scans on the 14th that will determine whether or not my liver and lung operations can go ahead. I’m very tense and consequently seem to be attracting bad luck – crashing cars into fences amongst other things.
If these surgeries go ahead they are unlikely to be curative. But they should buy me some time. The thought of having time is wonderful and terrifying. I am trying very hard not to let myself make plans for this possible time. It will be another grief if it doesn’t happen. But after living such a narrow life since diagnosis, the thought of having agency again to choose and make decisions beyond life and death is very tempting. The thought that it may almost but not quite happen is gruesome.
The saddest word
in the whole wide world
is the word almost.
He was almost in love.
She was almost good for him.
He almost stopped her.
She almost waited.
He almost lived.
They almost made it.