After you hear those words, you have cancer, it can seem like the floodgates have opened up because in a very real sense they have. Suddenly, you are forced to deal with countless medical appointments, personnel and procedures. You are poked, prodded, examined, questioned, analyzed and subjected to all kinds of potentially embarrassing, yes even humiliating situations. And not just once, but over and over.
On top of all that, you must absorb tons of often-times confusing information, try to formulate at least semi-intelligent sounding questions about all of it and then make life-changing (and often body-altering as well) decisions you never wanted or intended to make.
It’s overwhelming and then some.
During all of this chaos and confusion, you are also somehow supposed to morph into some sort of super-hero-like self-advocate, which is hard enough during relatively calm medical times, but after a cancer diagnosis, it can sometimes feel next to impossible.
Everything happens so fast, but at the same time, you might feel as if you’re moving in slow motion – at least that’s how it was for me.
But then somehow you get it together (more or less anyway) and begin to navigate the maze that is your cancer.
What choice do we have, right?
I do not have any ground-breaking, never-before-heard-of tips, and there is no particular way to manage the chaos that follows a cancer diagnosis anyway. There is only your way. Still, sometimes a few suggestions from others who’ve been there can come in pretty darn handy.
So here are a few tips for the newly diagnosed which might be helpful:
1. Self-advocate with as much gusto as you can muster because let’s face it, this is your life.
But remember, self-advocating is a learning process too; you will get better at it over time. Trust me. You will.
2. Don’t allow yourself to be rushed into decisions before you are ready to make them.
And it’s perfectly fine to have things explained over and over until you understand the information or are satisfied with the answers. I always maintain it’s a good idea to ‘sleep on it’ before you make a big decision.
3. Take someone with you to appointments IF you want to.
Also, take along notepads because you will be writing stuff down and, of course, write your questions out beforehand. And remember to take your questions with you.
Writing down answers matters, too, ‘cuz when you get home, you might not remember them. At least I didn’t and often still don’t.
Some doctors don’t mind if you record meetings, but some do, so it’s best to ask first.
4. Get second opinions if you want to and if your insurance allows for it.
5. Remember there are no dumb questions, plenty of embarrassing ones, yes, but no dumb ones.
6. Get organized with medical files or have someone else do it for you.
Ask for printed copies of reports, put them in labeled folders when you get home and consider signing up on an online patient portal if your facility offers this. This allows you access to at least many of your medical reports 24/7 and you can email your doctor too. I love this access.
7. Seek out support. It’s there.
I wish someone had told me this one at the start of my personal cancer shit storm. Family support is vital, but it’s so helpful to talk with others who understand whether it’s online, at an in-person support group or with a trusted friend who’s been there. Spreading the support around even just a little helps not only you, but also “lightens the load” a bit for your friends and family members.
Following a cancer diagnosis, things will sometimes feel undo-able. At times, you may feel overwhelmed, angry, frustrated, scared, cornered, lost, helpless, and who knows how else.
But somehow we muddle through.
And you will too.
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What piece of advice do you wish someone had given you early on?
Where do you find the best support?
Cancer or no cancer, how have your self-advocating skills evolved, or have they?
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