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Building a support network after being diagnosed

#IHopeThisHelps, written mostly with newly diagnosed Winship patients in mind

In my life, professionally and otherwise, I spend a lot of time thinking about how to organize and share information, and that has extended to my navigation of my diagnosis and treatment. Here are some things I did and learned while doing that, in case they help.

First of all let me say that, after raising kids, teaching students, and building friendships living in the same place for basically 20 years, I have a deep community and lots of family in the area. I realize that isn’t the case for everyone, or even many people, going through what I am going through, so if this isn’t the case for you, feel free to skip this one if you feel like it doesn’t apply.

However, whether you have deep family/friend support or just a handful of ride-or-dies, everyone will say some version of this to you: how can I help? Having been on both sides of this statement now, I know they really mean two things: 1) I really want to support to you and 2) I don’t have any clear understanding of what you need. So, think about these things and about what you want or think you’ll want.

One thing I didn’t want was a lot of food being dropped off that I might not be able to eat (I get it though, I’m that guy who always wants to bring food to sick or grieving people). Another thing which I would usually like, but knew I sometimes didn’t want was a bunch of unstructured hangouts with friends while I was not feeling good, so I didn’t want to build a social schedule of people “dropping by” when I was not sure if I’d be up to hanging out.

Here are the things that were immediately clear to me that I DID want:

  1. Rides to appointments. As someone who has made not owning a car a priority (for a variety of reasons I’ve discussed elsewhere on my blog), I wanted to see if I could legitimately cover all 35 days’ worth of pickups and dropoffs without having to call a bunch of Lyfts or ask family members for weeks’ worth of daily support (which can really drain anyone).
  2. Chemo day guests. I wanted to be intentional about who sits with me at those appointments once a week, preferably family. Before I reached out to a wider group for chemo day support, I asked my family members who could take which days, and between everyone choosing their day and my partner Jenn, thankfully, taking several, I had them all covered.
  3. Keeping weekly family dinners. Since all of my kids officially moved out of the house last year, I’ve tried to maintain a once a week family dinner at the house where they all come to me and I cook. I look forward to this evening all week. Starting treatment, I knew, would threaten this tradition, so I decided that instead of having people bring food for me that I didn’t know if I could take or use, I asked my friend network to take on providing this weekly dinner (that fluctuates between six and eight people). I also wanted whoever brings the food to feel comfortable staying and eating with us, so I leave that option open to them.

My colleague and friend Heather offered to be the volunteer organizer early on in these discussions. She built a spreadsheet that articulated these “asks” over a 7 week period, and a week before treatment started, I sent out an email to a bunch of people (pro-tip: use a “bcc” email for this; you don’t want to open anyone up to fishing or spam, and also the group reply messages can get cumbersome for many of us). Like a bunch of people, maybe 45.

These were a mix of friends and out of state family who, for the most part just want to keep up with the story and details of my treatment. But some people want to be part of the support network, and you don’t know who falls into what category. For example, one of your closest friends who you’re hoping is going to really plug in has a sick kid, or their annual review due, or is going through something no one knows about. Your friend up the street that you usually just see at parties and catch up about neighborhood news will decide to give you a couple of rides — totally unexpected. Throw a wide net, let that email have both an informing and support component, so that people can ask to be put on the support list, and take it from there.

You may be surprised by what happens when you do this. I was. With 35 treatment days and seven family dinners for 8-10 people, my spreadsheet had 77 slots on it. Family claimed their spots before the spreadsheet went out via email (so 7 were pre-claimed). The rest took only five days to fill. It was overwhelming, and I have heard from several friends who were glad that I was clear about the kind of support that I most wanted and needed.

In the beginning, I didn’t realize one hidden problem this plan was solving for me. Under the surface, I was worried about losing a sense of community in my family, friend, and professional networks (these bleed into each other a lot for me). But in giving all these folks opportunities to be part of the support and part of the story, I get to share a little of what it’s like going through this with them. Might I feel differently in two weeks when side effects really start kicking in? Absolutely. And everyone involved knows that this plan will need to be flexible. I do feel confident as things get started, that I’ll have the alone time that I need to heal and the community time that I also need to heal.

Published incancer treatment
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