Being Organised In Cancer Chaos!

I’m never surprised at the incredible members of the #CancerCommunity who are constantly resolving problems they encounter, and sharing the answers with the world! Ensuring their experience is used positively to make life easier for others. It was therefore wonderful to be contacted by Samira, who found a problem staying organised during such challenging times.

This is a problem for most of us, once the wheels of cancer treatment start turning, life turns into one large blur! For Samira, this project became a focal point and a great distraction from the treatment itself. It is always a pleasure to admire people with different skills to your own, and she has produced an incredible product which will help so many people in the future! I would like to say what a real honour it is to share the story of how the ‘MantaPlanner’ came to be!

“We aim to live the life we planned for. We identify goals, make resolutions, celebrate birthdays, measure our progress, track our successes, and hope for a happy year. There are planners – physical books and digital apps that help us keep things organized. We value productivity, working hard and getting things done. I too was (am) a ‘get-things-done’ designer working in healthcare. I’d worked at a myriad of startups – designing and building products to make our lives healthier. 

Then cancer struck. My life, as I knew it, came to a screeching halt. Weeks were spent getting diagnosed, weighing my options, identifying a treatment plan, communicating the uncertainty, and not-planning for my future. The period of overwhelming emotions, endless tasks-lists, complex research, and gathering opinions had begun. 

As a healthcare designer it began to dawn on me that this system wasn’t designed to bring me, the patient, along with it on this ride. By the time my 3rd round of chemotherapy had come around, I had gathered enough battle scars to know that I needed to do something to gain back a semblance of control.  The pre-cancer me got through life because I planned my days. The cancer-me didn’t know where to begin. In my appointments with the care teams I took notes on my phone, my tablet, my laptop, the back of a few receipts, in one of the red-manila Stanford Healthcare envelopes, and on the back of my hand. 

I needed a central place to capture instructions from the numerous doctor appointments, track my ever-evolving symptoms, gather my research, plan my treatment options, and check-in with myself. I looked at the few cancer-diaries on the market only to realize that none of them would suit my needs – A structured planner that allowed me to make it my own. 

Most nights after infusion, insomnia would strike. After watching all the Harry Potter movies (again), I decided to design a treatment planner that patients like me could use.  I designed the planner to be a treatment companion – a place to capture notes, research, questions, to track my symptoms, and to take a moment for myself. 

A few weeks later, I printed 3 copies and I started taking it to my appointments. 

With the planner and my warm hat, I soon started to feel…

• A little less overwhelmed – I wrote down the questions I had for my next visit with my doctor
• A little more in control – I wrote down notes from my doctor visits 
• A lot more grateful – Daily, I journaled the 3 things I was grateful for  (e.g., being able to drink water that doesn’t taste like mercury)
• A lot more hopeful –  Daily, I wrote the 3 things I was looking forward to (e.g., being able to feel like I want to go for a swim) 

More importantly, I began to believe I was receiving better care. I was able to become my doctor’s partner by advocating. The planner enabled me to track my symptoms over time, and how I was treating my symptoms. For example, I was able to tell my doctor that on day 10 after chemo round 4, I had terrible GI symptoms that lasted >24 hours, that didn’t resolve with the over-the-counter medications she had prescribed. This led to my doctor changing the dosage of chemo I received on round 5. My ability to advocate for myself changed. I felt more confident, able to voice my concerns, and able to communicate in a data-driven manner. 

My oncologist, my nurses, my infusion therapists, and my caregivers were thrilled. They encouraged me to print more planners and see if other patients wanted to use it too. I printed more and now have received positive feedback from others on this journey. For me cancer tried to press pause on my life. The planner gave me a lifeline. It allowed me to become a “patient-designer”. As a member of this community I know that each of us are battling this disease in our own way.

Here we are a few months later — the Manta Planner is available to the cancer community. I chose to call it a Manta Planner in memory of Manta Rays. These beautiful creatures are able to glide through the various weathers in the ocean. No matter how rough the current, or how strenuous the swim, these gracious animals spread their wings, harness the power of their environment, and easefully move forward. My hope with the Manta Planner is that patients and caregivers find a similar easeful path through this chapter.  I offer this planner as a token of gratitude to belong to this community.”  

You can get one online at https://www.mantaplanner.com/

You can follow us on facebook at https://www.facebook.com/mantaplanner

I’m delighted to report that Samira is making good progress during such difficult times!