Going through chemotherapy is an incredibly complex thing. I know this and I haven’t even started yet. The second thing I did, after first crying, when I found out that chemo was in my future was look for an app to help me manage it all. There’s nothing. Not for Apple, Android or the web. Nada.
I cheated and looked ahead at what was coming my way. The BC Cancer Agency has a list of chemotherapy protocols, with both patient and clinical versions of the handouts. (Warning – they are quite detailed and can be very scary.) I wanted to know all of the moving parts so I could put a plan together.
The project management professional in me really wanted to do a project plan for the next two months, complete with work breakdown structures and tasks and resource assignments. As a single person living alone with no family in this city, I am 100% dependent on my extended family of friends to help me get through this. I am very conscious that I have to manage everyone’s time well, including my own. People are taking time off work (some will take several days over the next two months) to help me, and I really needed to know what was coming and who would do what when.
The other thing pulling a plan together would do for me is give me back some control over what was happening to me. Or at least some semblance of what was happening. A certified control freak, it’s very difficult for me to let someone else have such momentous and total control over my life the way the people who will be administering chemotherapy toxins to me will be doing. Having a plan, and an active part (other than showing up with an available vein) in managing my well-being is important to my sanity. I can cede control over the big things if I feel I have some control over something. Cancer really does suck on so very many levels.
So I went hunting for an app to help me manage the medical appointments, the daily measurements and drug reminders, the data recording I’ll have to do to make sure I’m not getting an infection and am eliminating the chemo drugs as quickly as possible. Couldn’t find anything. I considered using a spreadsheet, but it just didn’t fit the purpose.
So I designed my own app. It’s paper-based for now. But it’s like a diary/journal, with key reminders of what things I need to do on specific days. The usability person in me designed so that it has a consistent user interface, is a simple as possible to use, and helps to build necessary habits that could literally save my life over the next two months.
Chemo, at least my course of chemo for my type of cancer, requires that the day before I get my infusion I do certain things at certain times, including getting a blood test for my white blood cell count, taking pills that will help my body manage the poisons they’ll pump into me the next day, and a few other things. The day of the infusion I have to add a couple more procedures to the mix, and the ten days following the infusion I have to take another drug to help stave off infection, plus I have to remember to stop taking the drug I started taking the day before the chemo session on the second day after my chemo session. All this while you feel like shit, hurt all over, are tired and nauseous and cranky and maybe even depressed. This is a situation that begs for an app to improve the patient experience and healthful outcomes!!!!!
Once I have time to turn this into an app, I think all kinds of beneficial tools can be part of it – reminder alerts, the ability to notify a friend if you need help, the ability to send data to medical staff who can intervene via text or call if necessary. Plus a few other things that can leverage the way we use smartphones today.
Cancer sucks. Chemo sucks. I am so not looking forward to this at all.