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ADVOCACY, LIVING WITH BREAST CANCER, METASTATIC BREAST CANCER, RESOURCES + TOOLS

“You Have Metastatic Breast Cancer: Wait… WHAT?”

By Rethink Contributor June 27 2019

By Judit Saunders

“I’m sorry to say, but you have metastatic breast cancer.”

Whether this comes months or years after an early stage breast cancer diagnosis, or maybe you’re stage IV from the get-go – these words echo in your ears for the rest of your life. How do you pack years of living into a condensed life, yet have zero clarity to the length of time you truly have?

That first moment when you find out is a moment that becomes so engraved and etched in your life you can categorize it in your memory and remember every aspect of that day. Who told you. Who was with you. Heck, I remember the weather that day because somehow you become hypervigilant while your head is spinning from the news. It feels earth shattering. The enormity of the diagnosis, whilst feeling completely frozen in time, and yet the world continues normally around you. Many times, minimal words are spoken initially as it can take a moment before your tears merge with your reality.

I remember that day with such clarity. That division of my life from curable to suddenly having a statistically grim probability of living until I was 30. Within a moment, every fabric of my being changed. WHAT??!! How could this be MY life??!! I’m healthy, I’m young and I’ve done everything right in my life. I’m a good person. HOW?? This is a mistake, right? I am just starting my adult life; how can it already be ending??? This was something I had seen happen to others and in a split second it was now me. Suddenly my life as I had known it for 28 years became foreign and unknown.

After the initial shock, complete sadness, and far too many google searches looking for some disparities in survival rates for the better, which led me down a rabbit hole at 2am, and left me wondering why I couldn’t sleep as I laid there contemplating my mortality… Every day after that diagnosis I would wake up hoping it was all a bad dream, but it all felt like groundhog’s day. Every. Single. Day. I woke up and felt this heavy burden where I was left lost. My career was over. Future was a word that became almost mystical in nature as I never really knew how much of it I would have.

After this point, I realized I could arm myself with information so I could become a partner in making shared decisions with my healthcare providers or I could simply wallow and let the immense burden of the diagnosis consume me. I realized that I had no choice in the disease, BUT I sure had a choice in the treatments, and It was my responsibility to tell my healthcare team what was important to me, my life, and my values.

I truly felt that getting this diagnosis, sped up my feverish approach to living, yet froze my life and halted its growth. To go from making plans to start a family, to getting slapped with the stick of reality and realizing that plan A was gone. In fact, Plan A was like watching your house burn down, but oh so much worse. You lose every aspect of who you are, and watch your future suddenly disappear right in front of you. Just like that. Time for Plan B. But let’s be real, who ever truly plans for Plan B?? What even is Plan B?? I was just beginning my plan A, so how could I have such a detour so early on?? Just as with death, learning you have metastatic breast cancer leads you to grieve the life you once had, whilst trying to create a new beginning, all the while having zero certainties to the actual length of your life. Perfect. The level of stress that accompanies the diagnosis is next level, hive inducing sort of stress.

On Experiencing Glimmers of Joy

With all that said, once the shock, grief, and anger subside (or just level off) and you get past that first scan, and if it shows your treatments are working, there is a sudden glimmer of light that gives way to hope. You rejoice as if you’ve won the lottery, although I will say it’s better than winning any lottery. And slowly but surely you start to crawl out of the immediacy of the overwhelming sorrow of the diagnosis.

So if you have just heard the words: “you have MBC:” Breathe, surround yourself with people who want to help, accept help (I’m 5 years in and still struggle with this), and don’t ever forget you are not alone, you are not a rarity, and although life with MBC is indescribably chaotic and uncertain, there’s beauty in the most unexpected of places. Grab onto your life and turn all your pain into a purpose.

On Finding Purpose

You start to try and wonder what life should look like? Where should I invest what time I have left? Whether that be with those you love or pushing for change for the MBC community through advocacy, your mind shifts from basic survival to lamenting what your Plan B will be and how it’ll unfold. Sometimes those days turn to months which turn to years, and you realize that life continues just as it did the day of your diagnosis.

On Reflecting

You always remember ‘the day,’ and you look back and wonder how the shattered pieces of your heart have somehow been glued back together by the community around you and you see just how incredibly loved you are…how much goodness still exists in the world and suddenly your time becomes your greatest commodity.

On Finding Community

I promise there is a community of those who went before you who will help pull you out of the rubble and help you find your footing. You need to find your people. Your community. And remember, although you feel the enormity of the world crumbling around you, you WILL stand up one day and hopefully extend your hand to those who come after you so you can pull them to the surface and help them see the light because in the end what truly matters is knowing you helped others find that glimmer of hope too. Sometimes that’s all we have left to grasp onto.

And Remember

Don’t ever forget when you are diagnosed with MBC that your voice matters just as much as your physicians, and don’t ever feel scared or ashamed to have honest and open conversations with your oncologist.

To read more stories about Metastatic Breast Cancer, click here.

 


Two years after Judit was diagnosed and treated for locally advanced breast cancer at the age of 26, she learned her cancer had recurred and metastasized. In hopes of sharing her story, the former Registered Nurse at the Alberta Children’s Hospital launched a blog and public Facebook page, and quickly realized the sheer magnitude of how many people, from so many walks of life, were affected by this disease. This was the catalyst to her involvement with MBC advocacy.

Bio continued here