Looking back on the hardest of conversations during cancer treatments
When my sister was diagnosed with cancer, I did not know much about hospice. At 23, I had never been exposed to something that required any further knowledge. So, what I thought I knew was that it was where people too sick for a cure went to die with dignity. I was naive and simple, but before this experience I did not know any different.
When she was diagnosed, the doctors seemed to have it all planned out. Take 12 rounds of chemotherapy and her life would go on and she would be no different than anyone else. It was obviously scary because anything that you hear after “you have cancer” or “your loved one has cancer” usually is. But it seemed that this would just be a footnote in her story. Not a chapter that didn’t seem to want to end.
Sadly, the ABVD chemotherapy regimen didn’t work and neither did the DHAP that followed. In fact, both came with complications that made things significantly worse. So, in late March of 2015, I sat down for a consult to discuss if it was that time. Time to say enough, discontinue treatment and move into the next phase of care: hospice care.
My sister was unable to choose this for herself for a multitude of reason. But sitting in a room down the hall from her, less that two weeks after her 28th birthday, discussing the end to her life was beyond difficult. To date, it is still one of the hardest conversations that I have had with medical professionals in regards to her care. Even though it was reality, looking back on it now it still seems to surreal to me.
We were lucky enough to have palliative/hospice a part of her team when she reached this place in her care. I was never more grateful for that than I was in that moment. Because in a moment of pure vulnerability, I wasn’t sitting amongst strangers. I was surrounded by knowledgeable, compassionate nurses and physicians whom I trusted. These people had shared in the same goals with us from her diagnosis.
The palliative nurse, Kate, told me that is was OK to be scared and to ask questions no matter how hard they might be to answer or how morbid they may have sounded in my head. She knew that I was exhausted and how much guilt I was experiencing from potentially choosing to stop treatments. With more than 25 years of nursing experience, Kate had done many consults like this one. What was important is she knew that it was my first consult and treated it as such. She told me that no matter what, we would not face the end alone.
If the treatments were discontinued, nobody knew when she might pass. So for me, of everything, the hardest part was that making a decision didn’t mean any less uncertainty than what we were already facing. She said that no words could properly prepare for what watching somebody you love pass might be like. In January of 2016 I learned that to be true, as I watched as a young boy pass away and valiantly lose his battle with cancer. It was in that sacred moment that her words rang true for me. My appreciation for her pure honesty grew exponentially afterwards.
Although my sister did not enter hospice, but continued with palliative and made it to remission, that time during her treatment taught me a lot. That waiting is incredibly hard, but can also be humbling. You learn that time passes just the same, but in the end, it is always what you do with time that matters most. Witnessing pain and prolonged suffering of one that you love leaves an impression on one’s mind. The experience with palliative, hospice and cancer profoundly changed me. It made me better realize who I wanted to be and how I wanted to live my life.