Cancer Caregiving: Perspective in Retrospect


Johnson writes about seeing clearly when the storm clouds settle.

Of all the things that got to me during my sister’s endless hours in hospitals and clinics, it was the cliché sayings that were all around us. “Stay strong.” “Be positive.” “It’s not how many times you fall, but how many times you get back up.” I am sure that many of you could add to that list or have seen quotes all around you since the day that you or your loved one was diagnosed. However, no matter how inspirational they may be, none of them seem to sum up cancer. In the two years that my sister had cancer, I have come to see the disease in such a different light. Cancer is a battle. It is a tough and seemingly endless journey that you are always fighting to win.

When my sister was in the hospital, a certain rhythm took hold. A daily grind of the same thing occurred and became a part of normal everyday life. It isn’t something that I ever thought would be a part of my family’s life, especially not to the extent that it has. That, in part, is why I decided to start sharing our story here, to help all of you who also never thought that it would be you and to serve as a reminder that while we do not expect it to happen, it does happen.

I do not know why, but on that first night I wrote, I had so many random thoughts running through my head that I just wanted it out. Everything went on to paper. I doodled and journaled the hours away in anticipation of a diagnosis. It became a daily ritual that was far more cathartic than I ever thought it’d be for me. I put pen to paper and wrote words that I’d have never dreamt of telling another soul. They were things that I feared and didn’t want others to hear, yet things that I needed to remove from my head. Of all the things that I have done for myself, I think that writing has been the most beneficial.

In July, we came up on the two year anniversary of her diagnosis and I read back through my journal. It was eye-opening to go back and relive all that happened and compare how I felt then to how I feel about it all now. Some of my fears from the beginning became my reality several months later. Cancer was so much more than the medical illness that I had once thought that it was.

Of the fears that haunted me the most, it was that people died from cancer. Yes, people still do. However, the survivorship rate has grown and continues to do so. While you may lose the battle, the important thing is to never lose hope that you can win. In the darkest of times, it is hard to have hope and to believe that you or the one that you love could be a survivor. The odds may not always be in our favor, but there is nothing more satisfying than proving every person, statistic and piece of data wrong. When my sister is 65, she can say that she is a survivor and with much help and a community support system that rivaled all others, she beat the odds. And I don’t have to say that my sister had cancer, she is here to say it herself.

One thing I did not know, it is that you get attached to doctors and nurses. The care team that my sister was lucky enough to get will always have an incredibly unique place in my heart. They gave so much to her, to us. They are the ones who ultimately saved her. While it is their job, they have become like a second family. The words “thank you” will never be enough to express my gratitude to each and every one of them.

Finally, the most important thing that I have learned from this is that life happens. I have watched as my friends hit milestones such as marriage, kids, graduation and wondered if my sister will ever get to have those moments. The world is so full of wonderfully beautiful things. Those things continue to happen, even in the face of such darkness. What was once important may not be anymore. What is important, is to remember that while your loved one battles, your life needs to go on.

Their life is not over, it is on hold. You may need to slow down and adjust to a “new normal,” but things aren’t over. The day they are diagnosed, it may have felt like the world stopped, but it didn’t. It was probably the scariest thing that you have ever heard, and it will change your life. That does not mean it is supposed to be the end of it.

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