We need to pace ourselves at the onset for what may be a much longer race than we anticipated.
I have not only witnessed so much as the sister of a cancer patient, but also through my work with the Leukemia and Lymphoma Society and as a nursing student. As somebody who was so unfamiliar with cancer when my sister was originally diagnosed, I think about how different my perspective of cancer is now.
With my own family, it altered the dynamic within our home and changed the relationships that we had with each other. It also fractured a unit that I had once thought was unbreakable. As well as, in both good and bad ways, it has provided a future that none of us could have ever foreseen.
In the beginning, we came together and focused all our energy on her. That included being present, supporting her and doing anything and everything that we thought would help the situation. As time wore on, all of use made different choices as to the degrees that we have been involved. All of us had our own reasons and rationale for doing as we did, but in the end, I landed on the far end of the spectrum. I took the role of caregiver and all that entailed throughout her journey.
While I think each family member had a moment when they knew they needed to step back, that time did not come for me until quite recently. I think there were a multitude of reasons why everybody chose what they did. More than anything though, we all underestimated the energy that one exudes during this process. It takes stamina and strength to get through the long and hard days. For us, we lived like it was a summer's run when in reality, we should have been preparing for a world class triathlon.
The initial results were so dire and after those proved wrong, I think there was a sense of caution. Not to assume that the doctors were always wrong, but to be cautious when receiving both good and bad news. At diagnosis, there is so much confusion and emotions are so high that you do not really take the time needed to absorb the news that has been given. A cancer diagnosis is a life-altering event and processing through that is something that nobody really gave us direction with.
Personally, getting swept up in what was happening was simply easier than dealing with the fatigue, exhaustion and worry that was consuming me. I spent more time by her bed than in my own, and so I was never able to fully recharge. As time wore on, it became evident that it was not a healthy way to live life no matter how “functionally” I seemed to be doing it.
I think as a family member, it’s hard to set aside that guilt and the list of things to do in favor of taking care of ourselves. When nurses told me that I needed to put myself first, I took that to mean I needed a break. So, I would go for a walk or spend one night at home instead of at the hospital with her. In reality, that did not even begin to make up for the fact in the lead up to those conversations, I usually hadn't been outside in days or slept at home in weeks. Just as the loved one that you are supporting, you need to be at your best to aide them in their fight.
I am not sure that there are any easy solutions or a checklist that you could write as to how best obtain all the things that one needs to take care of themselves. I began with the small things, like getting that breath of fresh air every day and eating three times a day. From there, I built to sleeping in my own bed more often, having a social life and returning to work.
As my family and I have been at this for quite some time now, I have had plenty of practice with the concept of trial and error. It was not easy and I had to figure it out along the way. I know, it may seem like you don't have the time to do these things but please believe me when I say they are worth it. No matter how much you think you have to get done, nothing should ever be higher on that list that taking care of yourself.
Cancer is a long journey and sadly, no matter how you go through it, whether walking or running, we have no choice but to compete in that race. I have found that it is far better to pace yourself and take time to enjoy the scenery when possible and give yourself a break every now and then along the way.