Sorry Not Sorry

Recently, an article went around my cancer circles titled ‘I’m sorry I didn’t beat breast cancer. The author commented on the feelings she experienced when she progressed from an early stage diagnosis to metastatic status. It is an interesting perspective, but for the most part, I respectfully ask that the issue of progression be considered from another angle.

I’m not sorry. Not sorry at all. How very un-Canadian of me, some might say.

For me, being sorry that my cancer eluded doctors and medical experts during my initial treatment phase implies that I had anything to do with the process. Maybe I missed appointments. Or didn’t follow protocol. Or didn’t take care of myself. That perhaps I didn’t do ‘the things’. I didn’t eat enough kale or do enough of the baking soda thing or eat a lemon every day. I did all of the things. On time. Followed ‘Standard of Care’ to a tee.  I was a model patient.

I can’t (and won’t) own the fact that the cancer cells in my body did not respond to the treatment as hoped. I can’t (and won’t) own the fact that doctors did not know enough about the characteristics of these particular cells to know if they already seeded and hid and regenerated long before the first cut of surgery.

I do feel sadness still – several years on – that the promise of early detection and early diagnosis and early treatment was not meant to be. This promise, the ever-pervasive narrative that you’ll be fine so long as you find your cancer early. However, despite it all, this cluster of cells – slightly bigger than the size of my thumbnail – would not abide by the rules of the game. Imagine. My thumbnail. And look at the collateral damage it has done.

I cannot stay silent when the comment ‘thank goodness you caught it early’ rings so very hollow to me. I had heard it for four and a half years. And now what? Was I to have found my cancer earlier? When it was the size of the nail on my middle finger perhaps? Is this where I erred?

Does this make people uncomfortable? Yes, and for that I’m sorry. I know what the fear of recurrence feels like. I know how debilitating the mental impact of a cancer diagnosis can be after treatment ends. There are therapists and treatments to help with these feelings.

The statistics peg a metastatic recurrence in 2-3 people (out of 10) who initially received an early stage diagnosis. Consider the incidence of breast cancer diagnoses, and these numbers should be cause for concern. And change.

So my story will not be one of apologies. I’m not sorry for bringing attention to the plight of the metastatic community. I’m not sorry to point out that our Canadian system is lacking in some key areas of treatment – personalized care; an investment in genomics; access to innovative medicines; a basic understanding by the medical community that young people get cancer too; and that a young person’s cancer can come back. In the healthiest of people. Who followed all the guidelines.  It happens to more people than anyone would like to admit.

My wish is for metastatic breast cancer to be cured. And if not cured in my abridged lifetime, then render it chronic; managed by treatments, and unable to take more than it has already taken from my life. Ambitious? Maybe. But things certainly won’t change without change makers making noise, shifting opinions, and challenging the status quo.

So, I really can’t say I’m sorry if my cancer story doesn’t fit your cancer narrative. It was never supposed to be a part of my story either. But this is my reality; the hand that I’ve been dealt. And apologizing for this part of my story won’t help any of us move the dial of progress forward.

Vesna Zic-Côté is a member of Rethink’s Metastatic Breast Cancer Advisory Board. Initially diagnosed with breast cancer in 2012, Vesna is now in active treatment for Metastatic Breast Cancer (MBC) since early 2017.