The Fight Against Cancer: Pacing Yourself

Article

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.

Related Videos
For patients with cancer, the ongoing chemotherapy shortage may cause some anxiety as they wonder how they will receive their drugs. However, measuring drugs “down to the minutiae of the milligrams” helped patients receive the drugs they needed, said Alison Tray. Tray is an advanced oncology certified nurse practitioner and current vice president of ambulatory operations at Rutgers Cancer Institute in New Jersey.  If patients are concerned about getting their cancer drugs, Tray noted that having “an open conversation” between patients and providers is key.  “As a provider and a nurse myself, having that conversation, that reassurance and sharing the information is a two-way conversation,” she said. “So just knowing that we're taking care of you, we're going to make sure that you receive the care that you need is the key takeaway.” In June 2023, many patients were unable to receive certain chemotherapy drugs, such as carboplatin and cisplatin because of an ongoing shortage. By October 2023, experts saw an improvement, although the “ongoing crisis” remained.  READ MORE: Patients With Lung Cancer Face Unmet Needs During Drug Shortages “We’re really proud of the work that we could do and achieve that through a critical drug shortage,” Tray said. “None of our patients missed a dose of chemotherapy and we were able to provide that for them.” Tray sat down with CURE® during the 49th Annual Oncology Nursing Society Annual Congress to discuss the ongoing chemo shortage and how patients and care teams approached these challenges. Transcript: Particularly at Hartford HealthCare, when we established this infrastructure, our goal was to make sure that every patient would get the treatment that they need and require, utilizing the data that we have from ASCO guidelines to ensure that we're getting the optimal high-quality standard of care in a timely fashion that we didn't have to delay therapies. So, we were able to do that by going down to the minutiae of the milligrams on hand, particularly when we had a lot of critical drug shortages. So it was really creating that process to really ensure that every patient would get the treatment that they needed. For more news on cancer updates, research and education, don’t forget to subscribe to CURE®’s newsletters here.
Yuliya P.L Linhares, MD, an expert on CLL
Yuliya P.L Linhares, MD, and Josie Montegaard, MSN, AGPCNP-BC, experts on CLL
Image of a man with a beard.
Image of a man with gray facial hair and a navy blue suit with a light orange tie.
Image of a woman with black hair.
Related Content