It’s our journey – co-survivors matter, too

When my doctor relayed my diagnosis to me, all I heard was, “You have an estrogen positive breast cancer – gobbledygook  – receptors – gobbledygook times two – treatment plan – times three – blockers – whawhawhawha – we are very positive about your chances – gobblegobblegobblegobble”.

This sound familiar to anyone? It is overwhelming, right? All I knew was that I had cancer, and even though it was detected early, it was cancer! Who the hell knows what to do with that? I was shit-your-pants terrified – my diagnosis summoned a form of anxiety I will never forget, and hope to never experience again.

To make sense of all the gobbledygook, I did what I always do when I want to find out more about anything. I turned to the Internet. And learned how dangerous that really is when you are panicked beyond imagination and have no idea what you are looking for.

Google netted hundreds of results with links to sites with information about breast cancer, including lots of scary pictures of tumors, surgery scars, women and men in chemotherapy chairs with needles stuck in their arms or chest smiling for the camera, and even more gobbledygook. I didn’t get past the first website I clicked on. I shut my laptop, burst into tears, hyperventilated a bit, and then puked.  I knew so little about cancer despite my mother’s own diagnosis three years before. And now here I was about to deal with it myself.

In a previous post I wrote about one of my coping mechanisms:  to take control of the things I could to establish my path to survivorship. And while that was something that worked for me, in all honesty I was petrified of the unknown, of what I thought I knew about the disease, and I was even more petrified of what I didn’t know.

But I wasn’t alone. I wasn’t the only one that was afraid of what was to come.

If there is one thing I learned about my journey is that I am a lucky girl. I had people around me, my family and friends, who made it their mission to make my life easier, to help me understand the disease I had, and to help me cope with the minutiae of the many cancer-related details that constantly came my way – especially in that first year after diagnosis.

My family formed the foundation of that support network. My late mother was fighting her own cancer battle at the time, but she was there to hold my hand – and shared the unique, yet unwanted bond with me that cancer had caused. And my siblings formed a protective fort around me. As an aside, I often picture them in superhero costumes – my sisters as Wonder Woman and Spider Woman, ready to fight for the little guy, and then my brother-in-law swooping in as the Flash to “zoom’ all the bad stuff away. Ha! I just figured out what I’m getting them all for Christmas this year! Sizing requirements to be sent in via email please!

Anyway, they did everything they could so I was able to focus all of my energy on healing me. And I did need my energy to fight. This was tough treatment, and when it took every ounce of oomph that I had, it was hard to focus on anything other than myself, and only on the things I needed at that moment in time. It was easy to forget that my family was as impacted by this disease as I was.

For me, I might have been dealing with the physical impact of a bastard disease, but my family shared the emotional impact with me. They shared the fear of the unknown, the anger, and the acceptance. And they shared my determination to fight.

And even though there are support services that were available to them, my siblings’ focus was on our mother and me. The need to care for their own emotional wellbeing seemed to be secondary to ours. It’s almost as if they told themselves that they weren’t the ones fighting the disease, so why should they make themselves a priority.

How wrong is that statement? Am I the only one to think that co-survivors tend to put their own needs aside because they believe their needs are not important? I would be interested in knowing from others if they experienced this, both as fighters/survivors and as co-survivors.

The shared experience with my family, coupled with the loss of our mother twenty months after my diagnosis, is what finally encouraged me to open my eyes and see the path that I needed to follow. It is not enough that I survived.

There are support organizations out there that focus on helping everyone impacted by cancer that needs more visibility and marketing, be it through funding, advocacy or simply gathering volunteers to help. There are opportunities for advocacy that can be taken up, to promote better-centralized information sources, for more family support services, and to continue fighting for funding for cancer research – in any country.

My way to help is to get involved with these support organizations, and to write this blog and share it on social media in the hope that others – that you – are encouraged and feel empowered by my story, regardless of whether you had or have cancer now, or whether you are the person holding someone’s hand.

And, if you are able to, that this helps you take that next step to advocate for more support services for everyone impacted by cancer.

I hope that this gives you extra oomph to keep fighting to eradicate this disease.

I believe that oomph is what helps us fight for our right to live.