A Remarkable Campaigner on Turning Her Own Adversity into Connected Triumph

I went from hiking with friends to life-threatening brain surgery in the space of 36 hours.

If I had been born an animal, I think I’d have been a workhorse. Yup. I’m strong, sturdy, and when others get sick, I stay stubbornly well.

That is until I was dumbstruck by a diagnosis of a Grade 4 brain tumor – think Senator McCain, British Baroness Tessa Jowell – in January 2016.

I went from hiking with friends to life-threatening brain surgery in the space of 36 hours. The exertion of the hike created pressure in my brain which, crowded by the tumor and inhibited from swelling due to the skull, caused a brain bleed. Which led to a seizure. A scan. A surgery. A diagnosis.

I live in New York, and am lucky enough to enjoy good medical coverage. In the city of shrinks, brains are well taken care of. There are a plethora of amazingly well qualified neuro-oncologists. I’m receiving the best treatment in the world.

And yet I have a less than 5% chance of surviving five years from diagnosis.

The Failure of Western medical models

The western medical model is failing me. It takes too long, costs too much money, and even trials that show promise don’t offer a cure. The median survival rate for people with my condition is just 14 months. The time it takes to get a new treatment from inception through to phase 111 clinical trial and FDA approval is way, way longer. So that’s just fundamentally wrong. A system designed to find treatments to save my life, takes longer than the life time I will most likely have.

We need a new approach.

Ethan Basch, MD, of Memorial Sloan Kettering Cancer Center (MSK) and UNC Lineberger Comprehensive Cancer Center, unveiled some fascinating research last year. He ran a project that gave cancer patients a digital device that they could use to transmit symptoms to nurses in real time. Creating this ability to inter-act so quickly led to improved overall survival.

“Although symptom management is a cornerstone of high-quality cancer care, prior research has shown that doctors miss up to half of patients’ symptoms during cancer treatment,” explained Dr. Basch. “Patient Reported Outcomes empower patients to actively report their symptoms and allow doctors and nurses to intervene early when necessary, ultimately improving the quality of life for patients. With these new data, we can now confirm the overall survival benefit as well.”

My non-medical brain reads this and thinks – yes, here’s what happens when you allow patients to articulate their sense of how their disease is affecting them every day. Inform their clinicians about their perspective. Get immediate feedback. Adjust your treatment plan. Stay conscious of what’s happening in your body.

Focus on feeling

I’ve founded a non-profit – OurBrainBank – that enables people like me to monitor our symptoms on an app made by utomotif, so that the objective measures long valued by medical professionals and regulators can be further enriched by the reality of the patient experience. Much of the feedback we’re getting from people using the app is about how helpful it is to focus, just a few minutes each day, on what they are feeling. It makes them feel more on top of the terrifying disease when they input their symptoms every day. Using the app makes people feel they’re controlling their disease, not the disease controlling them.

Stephen Jay Gould, paleontologist and educator at Harvard University whose paper The Median Isn’t the Message re-wrote the rule book on how to interpret statistics, had a fascinating take on this. He wrote:

“Attitude clearly matters in fighting cancer. We don't know why (from my old-style materialistic perspective, I suspect that mental states feed back upon the immune system). But match people with the same cancer for age, class, health, socioeconomic status, and, in general, those with positive attitudes, with a strong will and purpose for living, with commitment to struggle, with an active response to aiding their own treatment and not just a passive acceptance of anything doctors say, tend to live longer.”

Putting the patient front and centre

Setting up a non-profit, empowering patients by inviting them to share their symptoms, giving value to their lives in data form that can, in time, influence the shape of new treatments for glioblastoma, is all core to my own treatment plan. As we develop our plans, we will enable app users to connect to each other, and with our medical advisors, creating a collaborative force that can advocate for a new approach to cancer research. One that puts the patient at the heart of all our efforts. This isn’t just about health in the form of medicine. It’s also about the social health of individuals and communities with a shared desire to kick cancer. And what a prize that will be, whenever – if ever – that day comes. 

Social Health

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