I didn’t know what my ring tone sounded like until this spring. Most people don’t call me, and I figured that, if anyone did, they’d leave a message and I could call them back later. Once your number starts getting around to various medical professionals, you have to start answering the calls.
For one thing, you can’t always just call someone back. The number that shows up on the phone, usually labeled healthcare so at least you know it’s not spam, isn’t a direct line. Sometimes it gets you a menu, and other times it’s a recording informing you that this particular number is never answered. At least if you get the message (and listen to it or have a good transcription), you’ll have the direct number for the service in question and you can save it to your directory for future reference.
Other times you want to answer at the initial call because you want to get the next thing scheduled right now so you can plan things out. Even the soonest available appointment can often feel like it’s too far in the future (don’t these people know you have cancer?) so answering and getting that conversation going means making your wait time as short as possible. Honestly once you know there’s cancer in there somewhere, you just want it out.
It’s not just about answering your phone and keeping track of the information coming in, though. You’re not merely becoming the expert on your cancer and your treatment. You also have to immediately become a teacher.
“Oh, it’s going.”
Telling people you have cancer sucks. You’re just going about your day, someone hits you with the usual “Hey, how are you?” greeting and you have to make that decision: tell them? Don’t tell them and have them find out later? Duck into the nearest sewer grate and avoid them for the rest of your life?
I knew there was no way I’d be able to say it out loud to many people, but even once you’ve decided on texting, there are still so many questions. How much do you say? How do you even start? What order do you text people in? What if you miss someone important in the first round? Seriously all the logistics of trying to inform everyone you think feels like they deserve to be informed directly so you don’t offend them on top of sharing your cancer news is ridiculous. Like you shouldn’t really be concerned with propriety in the middle of all this, but hey, you’re going to live through it, so you’ll be potentially dealing with their hurt feelings for decades. Right?
At first it didn’t seem like such a big deal. I went ahead and drafted a text, just to get it down, and decided I’d just sent it to everyone. At that point, “everyone” was basically anyone who texted me on a semi-regular basis. The number wasn’t that large, so it was easy enough to do: copy, paste, send. Paste, send. Paste, send.
Not everybody chooses to make their diagnosis public, so that’s a personal decision, but I opted to write a Facebook post about the situation. Basically I decided I wanted to eliminate the awkward “How are you?” conversations as much as possible. It didn’t quite end up working the way I thought it would—I still had to tell all of my high school students, one class at a time—but it did help get the news out there. Part of that made it feel more real, so of course I wasn’t in denial or anything, and part of it was just the act of doing something when what I was really doing was waiting for a call from the surgeon’s scheduler. I had the news, and I had nothing pressing to do, so I told everyone.
Part of what I said in that initial post was that people didn’t have to respond. They could hit the heart react, and I’d know what they wanted to say. Again, this was a two part deal: I didn’t want to have to come up with a response to every single comment, and I didn’t want to force people to think of something to say.
What do you say when someone tells you they have cancer? I don’t have a right answer, but I do have a wrong one: the number of people who rushed to reassure me that I’d be fine was, uh … not reassuring. It felt dismissive, like they didn’t want to be bothered thinking about what I was going through and therefore decided that I had to be fine, so they wouldn’t have to worry about it. And honestly, I’d already gotten the wrong end of the odds with the cancer diagnosis. Who were they to say that the next step in the process would turn out sunny-side up?
This isn’t to say, of course, that I think all these people honestly felt this way. I think it’s simply hard to know what to say when this situation comes up, and the first instinct is to be reassuring. I would suggest, though, that all well-meaning reassuring people start practicing a variation on I’m here for you, no matter what comes next. Even relating a story of a friend’s or relative’s experience isn’t necessarily reassuring, because every cancer experience is different and, especially early on, there are just so many directions our lives could end up taking.
Over and over again
You’d think that telling people would get easier, but I don’t think it has. I just met up with someone for the first time since before my diagnosis and had to go through the whole story again as part of our catching up. I may be guilty of avoiding people on days when I simply don’t have the energy to go through it all again: telling someone. Dealing with their initial reaction. Usually reassuring them so they don’t have to feel bad. At times listening politely to advice that simply has no bearing on my situation. It’s a lot, okay?
I try to remember that it’s the first time for everyone I tell. They haven’t had to internalize this and make this a part of their everyday life. It’s not something anyone expects to hear from someone who seems to be healthy. But it’s still such process, and some days I just don’t have the energy to guide someone else through it after all the informing I’ve already done.
From the initial texts and Facebook post informing people of my diagnosis, things just got more complicated. There were updates to share after every appointment, and even though I tended to keep specifics to texts and only share more general updates on Facebook, more and more people crept into my to text list. I would leave an appointment, sometimes overwhelmed by more than an hour of information, and type up a summary and the next steps. I could copy and paste again, but as I kept pasting and sending, more people would respond. I’d have to go back and make sure I didn’t forget to send anyone the initial message, and then also make sure I’d responded to responses, at least with an emoji react. People who care want to know what’s going on, but man, it can snowball.
Most people are lucky and don’t know all the steps involved in getting a breast cancer diagnosis and proceeding with treatment. They are lucky people, but this just means a steeper learning curve. After I’d spent an hour or more—I think the record without a break was three hours, but I’ve had two appointments per day more than once—answering questions and getting things sorted out, I had to distill it into something that made sense for everyone who received my texts. Spoiler: it rarely did. Follow-up questions were the norm.
I had one person (a cancer survivor herself) offer to pass on the information to a branch of my support system, and that helped a lot. She did try to warn me about how overwhelming it would get, but it’s hard to imagine it at the beginning, and then you’re already stuck in your new “usual” procedures. Could I have changed things up? Sure, but it would’ve taken too much energy, and by that point I needed to save every spoon I could.
And again and again
Part of the overwhelming nature of a cancer diagnosis is the simple number of new people you meet. They all want to help, but you’re also kind of at the worst point in your life, so it’s hard to be grateful … especially when they’re coming at you yet again with something sharp. It also means explaining to other people the difference between similar-sounding titles, or why different appointments are necessary even though, yes, of course you know it feels like things are just being delayed. I’ll give an overview of all the different appointments and professionals in my next post, but until then, do something kind for yourself today. Memento vivere.
Rebecca Frost 