To Know and Not to Know

A very wise client of mine, Elizabeth Al-Khalifa, who headed up equality and human rights at the Department of Health, once told me that the key to surviving at the top of the UK civil service was ‘being comfortable with ambiguity’. This struck me as both true and peculiarly ironic in my current life, given that it came from the government department perhaps most focused on certainties.
You’re either healthy or sick. Alive or dead. With cancer or without.  The evidence-based trial system will provide irrefutable answers. Objectivity, evidence, data, and outcomes outcomes outcomes rule.. And yet… the more I delve into my condition and experience my experience, the more I hear Elizabeth’s words ringing in my ears.
I feel fine. I’m on the ketogenic (Atkins) diet. Starving cancer cells by eliminating sugar and carbs and eating only protein and fats. (Bring on the steak and salad). My energy’s up, waistline down, skin clear and eyes shiny. The electronic helmet is a major pain in the wotsit, but a manageable pain in the wotsit. The immunotherapy is a breeze, even if the hours and hours of inexplicable waiting I go through each time I wait for an infusion is an exercise in patience-stretching.
OK so I’m more tired, but that’s why we got the huge bed and the AC. And OK so I can get glum, hence the purchase of a huge ball of fluff aka Jazz, a wheaten terrier I defy anyone not to fall in love with.
So I feel fine, but am I fine?
Of course I want to know that the treatment I’m having is working.  $12K worth of nivolumab (the immunotherapy I’m taking) courses through my veins every month. Turns out we have no way of knowing if it’s working without looking at MRIs. And even then the MRI might show a flare that could be anything from the after effects of radiation to my immune systems flaring at the nivolumab, before embracing it to fight the cancer. The only indications we have of how I’m doing are things like whether I’m having more headaches, can follow the nurse’s finger as she moves her hand (I have to suppress a giggle each time as my father used to test my sobriety as a teenager back late from the pub by waving two hazy fingers and asking me to count digits. Yup, I invariably failed the test). Or my favorite, which provoked an ‘oh god’ reaction from Ed was when I was challenged to recite the months of the year backwards. Of course MRIs do tell us a lot, but it’s not definitive and not embracing of all the treatments I’m taking.
So I’m living with uncertainty. I know we are all in this club, but the scale and stakes of difference between certainty and ambiguity for me is much bigger than yours. And I’m finding navigating this terrain tough.
Frustrated by the familiar tale of the more I find out, the more I appreciate I don’t know. Unclear about how I can use my patient-power to accelerate progress against brain cancer. I’m on an uncomfortable see-saw, where some of the time I feel confident and full of clever insights into how if only the medical profession could become truly patient-centered all would be fine, or if only it would apply universal design principles and crack the hardest cancer first (rather than ones that impact on the largest number of people) and so on… and then the see saw swings abruptly and I’m met by insurmountables, like the bloody blood-brain barrier, unique in the human body, and both its most valiant protector as well as its built-in suicide bomber. Or how my own fixation on all things brain cancer might not be shared in equal measure by y’all.
Sometimes I feel that it’s contradictions, not ambiguity, that are driving me most nuts. Rest so I can get over the radiotherapy; exercise so I keep my immune system fit for chemo. Stay away from the online community to stay sane; get support from fellow travellers offering the solidarity of those in a horribly elitist club. Add to the cocktail with supplements and therapies – they can’t do any harm; keep focused on the main treatments and don’t spend precious $$ on things that are unproven and have little effect.
I’ve got to get to the top of the class. Navigate the ambiguity and see it as an opportunity to make headway. Here’s what I do know for certain:
–          We need more big bucks to crack brain cancer – one of the hardest cancers to treat, but affecting one of the smallest patient groups and therefore too often under the funders’ radar.
–          We’re in a Catch 22 where funders won’t fund ideas that have no evidence of potential, but without the funding it’s hard to explore potential, let alone secure the evidence.
–          There’s a wealth of evidence out there from the online patient community that isn’t captured or used. Because I can access knowledge of treatments, fellow patients and carers, and track my fitness online, I’m managing my health in ways impossible for previous generations.  So there’s bounty out there and I want to figure out how to get at it, so we accelerate progress towards cracking brain cancer.
My Doctor quite rightly stresses that anything I do to encourage patients to share experiences has to be easy, simple, practical.
Cancer can be inscrutable, incorrigible and inexplicable, and brain cancer perhaps the most complex cancer of all. There is a beauty in facing up to the behemoth and challenging its clever, wicked ways by saying the answer to TEF starts by putting human beings and their 360 degree oneness at the center of the plans of attack, understanding every facet of their experience, and letting mad and meaningful innovation flow.
I love the writings of John Maeda, author of The Laws of Simplicity. I can’t read this sentence without nodding vigorously: “We seem to forget that innovation doesn’t just come from equations or new kinds of chemicals, it comes from a human place. Innovation in the sciences is always linked in some way, either directly or indirectly, to a human experience.”
And I’m living it.

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