Tuesday, September 1, 2015

What I Wish I'd Known When I Was First Diagnosed

A few months ago, after being asked for the umpteenth time what advice I'd give to someone newly diagnosed with advanced breast cancer, I reached out to pose the question to the women in my online support groups.

I can never think of just one answer to this question. I say things like:

  • Be your own advocate.
  • Ask for help from those who love you. 
  • Try to make the most of each day, even when you feel terrible. 

But it never feels like quite enough. So here's what other women who've been down this rough road have to say on the matter.

{photo credit}
Find support! Cancer is hard and stage 4 is even harder. I always suggest breastcancer.org. -- Jenny

Prioritize carefully. -- Jimmie 

I've been sitting here for 15 minutes, trying think of some all-encompassing wise thing to say, and I've got nothing. But I fully agree with "find support". I was completely unaware that groups like this existed for the first 8 months of my diagnosis. I wish I'd been able to connect with other stage IV women sooner! -- Marisa

I have nothing profound. I tell them: 1. Breathe 2. Worry when you have to 3. One day, one step at a time. -- Leslie

The only thing that I can think of is Do Not Stop living your life. What you loved doing before do it after the diagnosis. -- Chantal

get rid of drama (including people)....simplify.....and live your own truth, your way, in your time. This is no one else's life but yours. -- Lesley

Don't look at statistics, don't read negative stories. Everybody has their own race to run, and many of us live a long time with mets. Mine is liver and I'm 6 years and going strong. Not without some seriously rough patches - but you never know if you'll be in that category. Live your life, enjoy your days and try not to live in the future. -- Ann

Learn to advocate for yourself. -- Karen

Don't be afraid to ask your doctor to prescribe something for anxiety. The first few months are really hard. Allow yourself to grieve, but not forever. Surround yourself with people who lift you up and find things that make you happy. -- Donda

Something for anxiety AND a sleep aid. -- Susan

Each day is a gift no matter your circumstances. And really thinking that everyone is terminal in a sense helped me as well. No one really knows how long they have, no one! -- Emily

I always stress the second opinion and finding Doctors you have full confidence in. -- Colleen

Don't just try traditional medication. Go Asian, drink juice, exercise, and pray...pray like never before! -- Melanie

LIVE, LAUGH, LOVE, each and every day, I am. -- Theresa

Get copies of the pathology reports, join an online group such as this one, and ask how long people are surviving with this disease, particularly those with similar dx. You may be looking at several years rather than months. It took a long time to understand that at first. -- Theresa

Keep meticulous records of drugs & reactions. You may end up on the same drug again in the future. Always get a copy of your scans on a disk. Keep all reports, especially pathology! -- Lynn


The first year will most likely be the most difficult for acceptance/denial. Look into disability benefits early and start making fun plans! -- Bethany

There is life after the diagnosis, and it's possible to live a good life despite the prognosis. We are not a statistic, and don't ever think that you will fall into the stats. Day by day, moment by moment, relish it and enjoy the little things...always find a snippet to your day that brings a smile to your face. Cancer will not define me as a person, but it will enhance the way in which I choose to live. -- Judit

Ignore all statistics. I have been enjoying a good quality of life for 4 yrs, still working, traveling, having fun. Everyone has a different cancer journey. But, the first year is definitely the hardest! -- Donna

Mine to share would be to "Expectations breed limitations...be present!" Finding yourself and trusting yourself is very liberating. -- Wendy

You MUST be your own advocate. -- Jody

Be your own best advocate. Research, read and ASK QUESTIONS!! -- Tricia

I'd tell them it is not over. Keep going, keep getting out of bed everyday and trying. It is possible for women to live several years with Stage IV cancer. -- Jaymi

Absolutely be your own advocate AND remove all negative people from your life. -- MaryAnne

We never have another chance at today, so make the best of it! -- Catherine

I would recommend getting multiple opinions on route of treatment. It is hard to not want to rush into something, but a second opinion on how to get started can help set your mind at ease (I ended up waiting 4 months for a second opinion and wish I had done it at first). -- Mandi

LIVE every day! -- Kelly

Find a doctor you love and trust. It makes the ride less horrible. -- Beth

Get a therapist if you don't have one already. Metastatic disease takes you to dark places; you need someone who will not only go there with you, but who will remember to bring the flashlight so you can both come back again. -- Kathleen

Take a deep breath and a step back. Your life isn't over yet. Live each day to the fullest. If you can do a happy dance then DO IT WELL and if all you can do is lie and feel weak then it's time to read that book you've been meaning to or watching a good comedy. Get your paperwork in order but don't pay the undertaker just yet....you're probably going to be around much longer than what you think. -- Annelie

I would add to make sure you have a great support system around you. From family to friends to medical to other supports. -- Laura

Don't panic. -- Anne

BREATHE! -- Jessica

6 comments:

  1. Thank you soo much for sharing! I loved this.

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    1. Thinking of sharing it on HuffPost -- would love to hear your thoughts on that! XO

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  2. All great advice. If I have to pick a favorite, it would have to be Lesley's ("let go of drama, including people..."). I would also like to add "allow yourself to experience ALL the emotions that come with a cancer diagnosis. Don't let others dictate how you should feel or act. Only you know how to deal with your own cancer mess. Plus there's no 'right way' to do cancer."

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    1. YES! You must be true to yourself. As a mom, I sometimes feel extra guarded about my darker emotions, but I think my son still sees all of it, for better or worse.

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