None of us wanted it, Cholangiocarcinoma has thrust us, kicking and screaming into the role of potential superheroes. Let me explain…
These are tough times as the world locks down. I'm sure many of you have already seen posts or heard from friends how they are struggling with the anxiety of not knowing what is going to happen.
If you're reading this post, though, you've either helped someone or have been helped by someone fighting that exact same feeling. Let's pay it forward and share what we know with our friends and family.
Cancer has been a hard, but effective teacher for me. I'd go as far as to say, it's forced me to consider being a superhero. I hope you'll heed its call-to-arms as well.
Here the top three learnings that I'll be sharing:
How to wash hands like an oncology nurse
How many people have you seen over the years who swish their hands under a running tap and think their hands are clean? Even the global directive to wash hands for 20 seconds doesn't quite do the job, does it? Not if you've ever spent a minute in an oncology ward.
I start and end every communication these days with a reminder to wash hands. Today I'm changing my email signature to have a link to a demonstration.
I admit that it used to drive me crazy that we could wait for two or three hours for our chemo appointment. I was grumpy right up until the day Joshua (my son) went into anaphylaxis during treatment. His oncologist dropped everything and stayed with him until he was breathing normally.
Scanxiety, blood results, chemo appointments and all the rest have taught us how to live in that netherworld of acute anxiety coupled with boredom.
I'm encouraging all my friends to have a list they can add to every time they get a good idea and return to when they feel they need a diversion.
They don't have to spend the time slumped on the couch watching Netflix (much).
Ignore the part about killing my neighbours. I like my neighbours.
Offering and receiving help
Josh fought stage 4 cholangiocarcinoma for 364 days. It's so rare here that I couldn't find anyone locally who knew what it was. I was scared and ignorant. Online, I found two amazing resources.
First I got a mentor - you can find out about CholangioConnect, the Cholangiocarcinoma Foundation's mentoring program here. I urge you to request a mentor or offer to be a mentor depending on your position.
Second, I joined some Facebook groups devoted to CC. What an amazing community you have turned out to be. You've helped me with everything from stopping nose bleeds, to chemotherapy suggestions. Overnight, Josh inherited a hoard of aunts, uncles, and grandparents. He didn't post but he had me read your comments every day.
Why am I telling you this?
First, because viruses don't have feelings. They don't hand out get-out-of-jail-free cards because you're already here. This family-we-didn't-choose knows so much. We can continue being abundant with knowledge and support.
Second, I bet there isn't a CC patient or caregiver who hasn't been surprised by the folks that pitched up and who disappeared after the diagnosis. Mostly, people didn't have the resilience to cope with such a grave illness. In fact, most people don't exhibit much resilience at all. That's because the way you learn to be resilient is by living through some kind of devastation. There isn't a single person in the CC community who isn't emotionally stronger and more resilient than they thought they could be. We know how to do it. Others don't.
As I'm writing this, I'm dreaming up ways I can use technology to support my friends as they get a crash course in resilience. I see Facebook has a new "get together" button which I hope will allow for some virtual coffees.
How would you recommend we go about making ourselves accessible to give support to our frightened communities?
Are you ready to put on your cape and become a superhero with me?
Please share your ideas on how we can be helpful for our friends and neighbours during the lockdown.
Penny Castle ran a successful executive coaching business with a focus on using positive psychology techniques to help employees be happier for more than a decade. She suspended her practise in 2018 when her son was diagnosed with stage 4 cholangiocarcinoma.
In January 2020, Penny re-opened her business to provide support for individuals suffering with complicated and anticipatory grief (including anxiety). Her clientele spans the globe which allows her to work online. She spends her free time with her husband, surviving son and a fleet of out-of-control pets. Most days you can find her working to help Reclaim Your Happiness here.