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You know when it starts, not when it ends: The ongoing horror of cancer survivorship

People with cancer - even if "cured" - still have to confront their end- of-life experience.

Photo of Anne-Laure Fayard
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When we think of end of life, we tend to focus on terminal experiences. However, in some cases, the death experience can last for a while. B.J Miller in his TedTalk shared in the challenge brief mentioned that his formal experience with death started with his accident. This is also the case with people with cancer (or similar diseases): "The ongoing horror of cancer survivorship is a big, dirty secret, full of tests and fear, as the stereotypical survivor remains inspirationally uplifting." was the summary of an article written in The Guardian a few days ago.

I think it highlights what Miller describes as the "unnecessary suffering" that the system sometimes creates - e.g. the waiting room, the way the information is provided.

It also highlights the difficulty for survivors to admit their fears and anxiety in 'light of the stereotypical survivor'. 

"After the first event, a 45-minute blood draw with an IV, I texted Anya again. “I cannot wait to get out of here,” I said.

Anya was confused. All my advance talk of “practically a spa day” – the robe; the free tea – and the movie banter had led her to believe that, seven years on, cancer was in my rearview mirror. I would’ve thought so too.

But it always follows me. I try to fake it out by pretending things are OK. If I pretend, I can sort of believe it too, for a time. So I pulled Anya into fantasyland with me, until I couldn’t." 

This reminded me of Emily's cards and the possibility to create conversations - possibly with humor to counterbalance the fear. It also suggests a difficult and subtle balance between not being only a patient (this is why often people might not mention their fear and anxiety) and acknowledging that while you are the same, you still are anxious and scared.

It also reminded me of Ned's point about "vulnerability": how to nurture vulnerability and the possibility of admitting fear and anxiety.

What is a provocation or insight that might inspire others during this challenge?

How to create a space for patients where they can admit their fear and anxiety without necessarily becoming only someone with a disease?
How to diminish suffering at all stages of the journey? Survivors are still scared...

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Photo of Aaron Wong

Hey Anne-Laure Fayard , great post expanding on the idea of creating a space where patients can be  vulnerable and honest. Furthermore, I think we need to create space where everyone affected, not just patients and survivors can feel safe and talk.

Check out rebecca brown 's post Don't mean to dwell on this dying thing  and
MyGrief Angels 's "Just Get Over it - He is Buried & Gone" - Lets use Mobile Technology & Our Grief to HELP Each Other - "80+% of US Were NOT Prepared"  post.

Photo of Anne-Laure Fayard

Hi Aarron, thank you for your comments and the two connections.
These are interesting posts and I agree that the family and friends of people who passed away is clearly something we should explore... In fact, I would argue that it is not only about how to cope with grief, but also how to cope with the person's health deteriorating.  
I guess my point was also to invite us to explore the definition of end of life: when does it start? a survivor can have a heroic aura but still experiencing "the end of life". 

Photo of Shane Zhao

Anne-Laure, I'm glad you highlighted the example of waiting rooms being part of a larger system that contributes to "unnecessary suffering." There are things in the healthcare and hospital system that don't meet the emotional needs of patients and their families — which leads to more fears and anxieties. As we move into the idea phase, this thought of creating an out for people to unleash their fears will be something important to think about! 

Photo of Anne-Laure Fayard

Shane, I agree with you that waiting rooms are a major "touch point", and unfortunately pain point too for patients and families. I experienced it spending long hours waiting in various services and hospitals with a dear friend who unfortunately passed away last summer.

Photo of Aaron Wong

Great point! When does "end of life" start... Perhaps we should start planning earlier - while our health is still good, while we still have the power to move and create new habits and traditions. Might that help ease us into uncomfortable positions?



You might find What Happens After 40?  interesting as well (: