Transitioning From Patient to Survivor

Kim Johnson

Throughout my sister’s battle with cancer, we discussed the goal of remission. Although there were many times that neither I, nor her team, thought that she would reach remission, her bone marrow transplant made us realize that it might be possible. Towards the end of transplant, we all sat down to discuss what life might look like for her after cancer.

We discussed seeing her oncologist monthly in the first year, then three times a year for year two, four times for year three and once yearly for every year after that. It seemed like a wonderful change, considering that in the last three years, we had spent more time in clinics and hospitals than at home. But for my sister, it still seemed like too much. She lived in fear of what every lab test might show. In truth, for the longest time, I was terrified too.

But in that time, I learned to put it all out of mind and focus on the facts. Because despite everything, she no longer had cancer. Having spent so long worried that she would never make it past cancer, I did not and do not want to spend my life worried about it coming back. And more so, I did not and do not want her to live life in fear, either.

With the word remission came the title of survivor. It is a word used often within the oncology community, but to me it is quite ill-defined. For my sister, even though treatments stopped, her complications continued – as did her emotional roller coaster.

No matter how hard we try, in a way, my sister will always be a cancer patient. Despite the effort towards finding a cure, very little has been done to address the complexities of transitioning from patient to survivor. While her cancer is physically gone, it very much still remains a part of her daily life.

She has been diagnosed with post-traumatic stress disorder (PTSD) and has had issues overcoming the mental challenges that enduring cancer can carry. Aside from the fear of cancer returning, a large part of who she was lost upon her diagnosis. Those who are not close to her or those who did not witness the daily struggle simply don't comprehend why it so hard to move past cancer and why, after four years, she still struggles to be anything but a patient.

Much like cancer itself, the change from patient to survivor can seem isolating. I have come to think of enduring cancer as a grieving process of sorts. You are one person before the diagnosis comes, you are another person during the journey and you are different person when remission is gained. That is not to say that certain pieces of you don't remain, but I feel it nearly impossible to go through this journey unchanged.

Much like going through cancer, I think it is imperative to reach out and understand that despite how it may feel, you are not alone.


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