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Seven Tips for the Newly Diagnosed

Seven tips for the newly diagnosed.

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 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 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 seven 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.

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 did/do you find the best support?

Cancer or no cancer, how have your self-advocating skills evolved, or have they?

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Carol Miele

Wednesday 22nd of May 2019

As usual Nancy, you're right on the money! These tips are great for the newly diagnosed who are so overwhelmed. I love reading your words...always sincere, to the point & comforting. Thanks for all you put out there for us.

Nancy

Thursday 23rd of May 2019

Carol, Thank you so much for your kind words.

Rebecca

Tuesday 21st of May 2019

Something I think we all face early on is dealing with thoughtless remarks made by well-meaning people. Everyone has to craft their own way of coping with them and responding, or not responding. I only know that, whenever I hear platitudes and - to be judgmental, sorry - just plain stupid comments, I am far less polite about what I have to say than when I was first diagnosed over 20 years ago.

Nancy

Thursday 23rd of May 2019

Rebecca, You're right, everyone has to craft their own way of coping - with a lot things! Thank you for commenting.

Nancy Greene

Friday 4th of May 2018

Still have not found much support so in turn it is a very lonely time family and friends don’t realize what is going on only people who have been there breast survivor 24 years lung ca 2015 surgery left lobe removed no treatment 2017 recurrent lung cancer in chest inoperable chemo radiation together now immune therapy every 2 weeks stopped treatment once because of balance mri brain and 3 other body parts pet yesterday find out results Tuesday very over welmiing any one else going through something like this

Nancy

Friday 4th of May 2018

Nancy, Very overwhelming indeed. Have you tried an in-person support group? Online support is there. I hope there's someone or some place you can find the support you need and deserve. Thank you for sharing.

Areena

Friday 10th of July 2015

I wish I had been told That it was going to change A lot of things. I truly believed I would have the surgery, a time of recovery, and be the same. I was not prepared for Breasts that felt like dense pockets of tissue and that they would have the sensation of wearing a bra all the time, no more relief of removing the bra after a long day :(. I also wish I had been given some direction about challenges, what to call in about, and which Dr.was best to take care of what kind of problems that could show up.

Nancy

Saturday 11th of July 2015

Areena, I think many of us think things will pretty much get back to normal... Survivorship issues are under-discussed and under-addressed IMO too.

Mae

Friday 3rd of July 2015

This is great advice Nancy! Have patience with the process, it's not an easy fix back to health.

Nancy

Saturday 4th of July 2015

Mae, Thank you and thanks for adding your tip, which is so important and so very true.