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After being a cancer caregiver, it is important to take time to recover and have hope for the future.
When my sister was diagnosed, her disease was thought to be terminal. When you hear that word, the feeling is unimaginable. It is never something you expect to hear. It doesn’t matter how sick I thought she was, or even that we knew she had cancer. It still felt unreal.
All of cancer is hard. But to sit by and bear witness to the ravages of the disease, being forced to come to terms with how powerless you are is particularly difficult. You live life somehow trying to have hope, yet not create false hope that will lead to disappointment. Even though you’d give anything to change all the bad, sometimes there is nothing that can be done. In some cases, you run out of options.
Although Hodgkin’s lymphoma is considered a very curable form of cancer, we were told that for whatever reason it wasn’t for my sister. She was going to be one of the unfortunate souls that would fight and endure but lose the battle. She might not lose it today, but her diagnosis showed that at some point this affliction or a complication would steal her away.
For me, by far the hardest part of the journey was trying to accept that she was actually dying. I had guidance and the advice often given was to do my best to not grieve before she was gone. I am beyond grateful for that advice because she did reach remission. I spent a vast amount of time with her, and the memories made mean a lot to me. I can only imagine how much more they might mean had she passed away.
Though she has been in remission for over a year, a degree of uncertainty still remains. A clean bill of her health does not simply negate all that happened. I felt so powerless to the situation that was unfolding. I wondered when, where and how her passing would occur. I worried if she would experience pain or know what was happening. Living in anticipation of death isn’t something that just goes away. It has had a lasting impact.
From the onset of her illness, I made a decision about the role I was going to play. That choice in no way prepared me for anything that happened. While I was clearly not equipped for all that was happening, I wanted to be the one next to her while it did. Even though she was diagnosed terminal four times, I do not think that I ever reached a level of acceptance with her death.
Instead, every time we faced a terminal diagnosis, it came with a fierce desire — a desire to help her fully live out the remainder of her days in the best possible way, and to prove everybody wrong as she did the time before. But most of all, I had a desire to fix her. From that first diagnosis, I learned all that I could about Hodgkin’s lymphoma. I wanted to stay just one step ahead of the disease as it progressed.
By throwing myself at the forefront of her illness, I somehow thought I could be prepared. While I am lucky to say that I did not lose my sister to cancer, I have lost many close to me these past few years. In doing so, I now better understand that you can’t prepare for death as I once thought was possible.
As her disease ebbed and flowed, I watched her change. Her fatigue was always so great, and early on, she lost her desire to do the things she used to do. It was difficult, but cancer requires one to push on. It meant excepting the new normal and excepting that too would often be changing. When things were at their worst, we were, in essence, just trying to prolong her life. These were the hardest moments for me to witness, both as her caregiver and as her sister.
Like many before her, she was afraid to die. I, too, was afraid for her to die. To her, that fear meant trying anything to hold on and have as many days as possible. For me, it was hard to watch and I had ruminating thoughts about how much harder it was going to get. I was warned that she seemed to be a patient who would fight the process of death, and for good and bad, she wanted time. So, it would be a battle to the end. My main concern was what that battle might look like.
We had spoken about death with her team on a few occasions. It was a surreal experience to have been discussing a young woman’s passing, especially as it was for my sister who was just four years older than I. It bothered me that she did not care to participate in these consults and often refused to attend. While I can’t imagine how difficult it must’ve been, I don’t think she ever realized that it was also difficult for her family, too.
As I look back on far we have come, it is some of these reflections that hit me hardest. It is not forgotten how incredibly difficult this journey was to get through, nor is it forgotten how little time has passed. Thinking back on those darker times brings me back. It reminds me of all the challenges that were overcome. It also reminds me of the work that there is left to do.
During cancer, time seemed to be a curse. Time was this invisible enemy that we fought while we also fought cancer. Afterwards, since taking a step back from my sister and focusing more on myself, I see the immense impact cancer had on my own psychological health.
I can also now see how time is not the enemy, but a gift that we are blessed with. My sister is now healthy and we have been given time with her that we once thought we wouldn’t have. Now that she in remission, I also have the time to begin healing from all that happened. Knowing that I have time provides hope for a happy and healthier future for the both of us.