Accepting Advice as a Cancer Caregiver

Sharing my perspective has been important to me for many reasons. When I began in the role of caregiver, I felt so alone. I would come to learn that not only was I in the minority for being a caregiver, I fell into an even smaller vector because I was a young adult caring for a sibling. Although a complex story to share, it is one that I hope has helped others to cope better than I did through my journey as a caregiver.

My sisters' struggle with stage 4 Hodgkin’s lymphoma was difficult from day one. It is a journey that so many people have taken with her. During this twisted adventure, I was her caregiver. As with most patients, she was quite often consumed by worries and fear. She was so scared to lose the battle that no matter what, she fought for time. Although everybody went along with her requests, it was not easy to watch. Treatment regimens were anything but kind and her body consistently betrayed the desires that lay in her heart.

At the time of diagnosis, I was in complete shock. Although I had assumed it was cancer, hearing the words was still unexpected. I could not even begin to fathom what our lives would look like without her here. I am often left with fragmented thoughts of what may happen if she is to one day relapse. When that occurs, it can be a rabbit-hole of sorts where endless scenarios play on repeat in my head. At times, it is still hard to believe that all of this happened. Even harder to believe is that we made it and she is now cancer free.

Though some may find it a stretch to say we’re lucky, I do count us lucky. I couldn't imagine walking this road alone, and so I would not let my sister do so, either. Our family dynamic can make life hard at times, but it was also a blessing. I was able to provide constant care and attend all treatments, tests, appointments, procedures and hospitalizations because our family did everything else on the home front. This is a luxury that most do not have that I'm eternally grateful for.

Not knowing the length and complexity of the battle influenced my choices at diagnosis. Although I cannot go back, in hindsight I would have done things differently. I can see now that my actions contributed to making my sister overly dependent. That made it harder on a multitude of levels for her to partake in self-care. She came to expect me to know her body better then she knew it herself, making our relationship as sisters a very difficult thing to maintain.

I don't regret my choice to be a caregiver, but that is not to say that things were always easy. When making some choices, I didn’t know what they’d come to mean later. It was a challenge to put my life on hold in favor of trying so hard to save my sister. At times, I was lost in confusion and utter frustration by her actions. She was unwilling to do what was needed, yet so upset when she was told that she wasn't improving. I never needed nor wanted a thank you from my sister. In those moments, when I was doing all that I could, I just needed to see that she was willing to fight and do all that she could to win against cancer, too.

It did not go unnoticed by her clinical care team that I was constantly by her side. Much advice was given on how best to take care of myself. I was made aware of caregiver burnout, illness, long- and short-term effects of lack and sleep and the undesirable effect that it could have on my health. The thing is, I was 23 and did not think that anything that was being said applied to me. The most commonly given piece of advice was to “take time for yourself.” I balked at that idea, because others simply didn't seem to understand how impossible that felt for me.

What I now better understand is that as a caregiver, the best thing that you can do is to listen. I am not talking about listening to the one you are caring for. I am talking about listening to those in the field of medicine, the people that love you and are trying to take care of you while you take care of another. You don't have to take all the advice that is given, but you can learn a lot if you simply listen. I know that I did.

Cancer affects everybody, and my sister and I just so happened to be fairly young when it entered our lives. As hard as we tried to maintain normalcy, nothing about cancer is normal. On that summer day, she became a full-time cancer patient and I became a full-time caregiver and advocate. As that was happening, I consistently tried to remind my sister that while she had cancer, she was not cancer. Somehow, I forgot the same was true for me. Although I was caring for her, I was not just a caregiver, but still a person, too.

So much of what I have learned in my life is because of what has happened along the way. As time-consuming as cancer was, the world did not stop spinning. From diagnosis to now, our world has changed exponentially. I now know firsthand what it is to be a caregiver and that getting advice on how to care can be insulting for those of us who do it. But getting advice can also be very valuable. We need to share because there are so many out there that are just like I used to be. Somebody who has no idea that one day they will be a caregiver.