We should have cancer registries, and also maybe "showers"

A great new tool to organize knowledge and resources, and tales from my Chemo Christmas

Baby showers and registries are wonderful social and material technology, and I think cancer could benefit from something similar.¹

Before I get into that though, let’s look at what baby showers accomplish more specifically (my friend

Priya

just had one, so I saw the efficient deployment of this social tech very recently).

What baby showers accomplish

Generally speaking, they take all the work of preparing for a child, and spread it out among a whole community, using a social protocol that everyone understands. Everyone also understands that someone else should plan the baby shower for the parents-to-be. Many hands, light work. More specifically, that means:

• Logistics: decentralized acquisition of everything expecting parents need for their child. This is especially useful for first-time parents, and is aided by using tools like a registry.

• Information: first-time parents don’t always know what they need, and other people and parents have more collective knowledge. A baby shower, especially combined with a registry, helps parents get things they didn’t even know they needed.

• Forcing function: they also serve as a forcing function; if you know you’re having a shower, you need to ask for things, and you have a reason to make a registry.

• Framing: showers turn an event that’s all about helping someone with material items into a celebration, like a birthday party. It’s the difference between “help these parents get what they need so they don’t have to spend so much money” and “happy birthday, here’s that thing you wanted/needed!”

• Norm reinforcement: showers reinforce norms around celebrating birth, new life, and parenthood. And in places where adults don’t come into contact with children, they keep having children on the table as an option. It’s easier to contemplate having children if you see others preparing for, and doing, the same thing.

A word about registries

We use registries for baby showers and weddings, and in both cases they can wildly improve the efficacy of the events. But you might not know how they work (and why would you if you haven’t had to use one), so here’s an overview informed by Priya.

Babylist.com is for baby showers, and if you follow the link you’ll see a ton of resources. Not only do they give you things like “Your Pregnancy Week-by-Week,” with attendant checklists of things you need to have and do, they give you sample registries! (Some even have browser extensions that allow you to select things from any webpage you visit and add it to your registry.) Every woman’s pregnancy is different, and babylist.com provides a wide array of examples to cover everyone’s needs.

When Priya was building her registry, she also reached out to other friends who had had babies, and they sent her their old registries and ideas for items to put on her registry. So, not only are the registries themselves helpful, but by creating a registry you’re creating an artifact to pass on to someone else in the future.

As you can quickly see, registries draw information out of everyone in a decentralized way—way more than they’d otherwise give—and organize it.

Finally, registries are great for the people who want to get you things. They get guidance on what you specifically ask for, and registries display which things someone has already purchased for you, minimizing duplications. If someone sends you a package directly, you can also track it.

Cancer registries: a helpful new approach

Imagine having this kind of information and material coordination for cancer! It would dramatically improve the cancer patient’s experience—minimize work and maximize help—and allow others to help them more easily. Instead of asking “What do you need?”, they could just ask for a link to your registry.

Further, you could probably deputize a friend to make your registry for you, or at least make most of it with your final sign-off. Registries allow a cancer patient to hand a lot of work off to someone in a way that isn’t really possible right now absent a large effort.

I’m imagining how my experience of Hodgkin’s lymphoma would have been different if I could have gone to a cancer registry site, clicked on the “Hodgkin’s lymphoma” section, and seen: sample registries, other people’s registries, checklists made by doctors from my cancer center depending on the nature of my disease, and the ability to just publish a list of stuff and give it to a friend to distribute.

Some very kind people reached out to me after my diagnosis—they’d previously had cancer, and they let me know they’d be there to talk if I wanted. I didn’t actually have the time or the mental space to take them up on their offers, but it would have been great if they’d sent me their old registries (if only they had the opportunity to make them)!

Cancer patients need help determining what they need

From the outside, it might seem like cancer patients know what they need, even if they have a hard time getting it—this is not true at all. Cancer patients often have very little time between their diagnosis and the beginning of their daunting treatment, and they will be shellshocked for at least some of that time. They have an immense amount of financial, administrative, interpersonal, and life decisions to make (for example, I had to decide whether to freeze sperm before my chemo began, and I had to do it quickly).

And because cancer is not a monolith, there is rarely a standard playbook you can pull off the shelf to make this work easier (although registries could help):

[Cancers] have different stages of progression, different subtypes, different treatment regimens (chemotherapy, surgery, radiation, and more), different survival rates, different symptoms, different chores (administrative and medical), different treatment side effects, and different social awareness and acceptance.

Cancer patients are usually just as blindsided and ignorant as anyone else, but there is no standard social protocol that makes getting information and resources easy. If anything, we have the opposite: people are afraid to interact with cancer patients, either due to their own fear of death, or the fear of not knowing what to say.

I sent this essay to my mother to review (after all, she had a front row seat to my own cancer journey), and I’m just going to quote her email comments directly and at length on cancer registries:

The cancer victim could gather input from others who have experienced the same or similar treatment regimens, and come up with a list of what others have experienced to be the most helpful. This, of course, would take into consideration living conditions—Are you by yourself? Do you have children to care for? Do you have family nearby? What are the day-to-day things needed to maintain some normalcy on autopilot? You have laundry to do: ask for laundry supplies so that you don't have to remember to purchase them.  Ask for anything that chemo-brain makes you totally forget—Personal hygiene: a shit-load of your favorite toothpaste, deodorant, shampoos, toilet paper, etc., whether for yourself, or for others in your household as well. Children's school supplies, OTC medications, paper plates and cups...

Then there's the usual comfort care items: foods, warm blanket, extra pillows, heating pad, moisturizers...You know—you've experienced it all.

I've read that to provide help to those grieving a death or serious health circumstance, do not ask them "what can I do to help" or say "if you need anything at all, please let me know."

The grieving have no idea what they need—they simply are temporarily brain dead. Instead, just go grocery shopping, supplies shopping, get gift cards to favorite restaurants, etc., and drop it off at their door. If what you've given them is not to their liking, no harm, no foul. They simply don't use it! 

Not only do I fully endorse all of that, but you could bake much of it into a registry. I’ll also note: there are many services, like laundry, that would be great to have on a cancer registry. My laundry became quite backed up, especially after my second dose of chemo, and I paid for a laundry service with a small monetary gift from a friend. It was an immense boost to my quality of life.

A word of thanks to my friends and mother

Despite not having a registry, I still got similar results in effect. I am surrounded by kind, generous, well-adjusted people (I live near my friends, after all); they gave me money, time, their spare rooms, fraternity, their minds, and physical items/food according to their own capacities. They also treated me the same, not like an alien.

I even had one doctor friend offer to be my liaison between me and the hospital if the medical administrivia became too much (she also volunteered to do any medical research I wanted). Since a lot of my treatment happened in the winter, I called all of this my “chemo Christmas.”

But the experience could have been optimized with a registry, both from the perspective of the helpers and the one needing help. I likely would have gotten more of what I needed—but didn’t know to ask for—and a lot of things that would have just made the whole experience nicer. For example, my AirPods case is mostly broken, and doesn’t charge very well. New AirPods would have been great, but I didn’t think to ask for them, because they weren’t like money or food. It would have felt strange.

And for people who don’t have such a strong social support network, registries make it easier to ask for help; they lower the logistical and emotional friction to assisting cancer patients. They are also another way to get resources besides a GoFundMe, which, while helpful, comes with psychological friction for many cancer patients.

More people are likely to order something off your registry (including Visa and store gift cards), where it can be sent directly to you, than independently figure out what you need and mail it.

But what about the event: the cancer shower

My friend Hailey came up with the shower/registry idea at Priya’s baby shower, and it really does make sense. When I was diagnosed with Hodgkin’s lymphoma, I would have liked to have had an event where everyone got together for food and good times, especially before my hair fell out (but after would have been OK too). Following the template of a baby shower, I could have also asked some friends to throw it for me.

Of course (and to put it mildly), cancer showers would be different from baby showers.² They’re about helping to mitigate a bad thing, rather than facilitate a good thing. The psychological aspects are also different: when do you have the shower?³ Do you have it before or after you start chemo (especially because there’s not that much time between diagnosis and the start of treatment to plan things)? What if you don’t get chemo, but surgery? What if you have a cancer with a challenging survival rate—how do showers fit into that picture, as opposed to a cancer like mine, which has a high rate of cure? What if your cancer treatment lasts a long time, and you need more things (do you have a cancer sprinkle?). These things need to be worked out, but they are workable.

I can imagine some people would want a shower-type event, and some people would just want a registry.

Either way, the norm of a cancer shower/registry would be better than the current state of things, a common example of which is laid out plainly by Caitlin Flanagan:

Are you someone who enjoys the unsolicited opinions of strangers and acquaintances? If so, I can’t recommend cancer highly enough. You won’t even have the first pathology report in your hands before the advice comes pouring in. —“I’ll Tell You the Secret of Cancer”

If you want to help make this happen, or you have a friend who needs one of these, drop a comment or forward this post. I’ll be working on it.

Thank you to Hailey, Priya, and Mother for helping me think through this post, and for providing the inspiration for it.

1. From Samo Burja’s Great Founder Theory manuscript, “Social Technology,” p. 22:

It’s important to note that all except the simplest social technologies are designed. Though many of our crucial social technologies seem like natural parts of reality today, this was not always so. At some point they required intentional construction and adoption. Many social technologies we take for granted, including the very idea of having such critical systems as currency, law, and government, were born from concerted human agency. It is for this reason that we call it social technology, rather than social “norms”, or take a broader anthropological or philosophical approach. Much like material technology, social technology is designed, adopted, and scaled. It is proceduralized and documentable.

Social technology is a tool that directs people to knowingly or unknowingly take certain actions, and in so doing it has the ability to shape an extremely broad range of human action. It can be used to reduce coordination costs between people, causing them to work together more effectively towards a goal, but it can also be used to restrict collaboration and action.

2. Maybe you don’t even want to call them “showers,” but I know people who would!

3. There is a similar element here for pregnancy. When is “too early” to have a shower? Should you wait until you get certain genetic tests back? After your first trimester, or your second? You get the idea.