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Kim was a caregiver for her sister while she battled stage 4 Hodgkin Lymphoma for nearly five years, from diagnosis through an autologous transplant. She turned her experience into change and has since become an activist in finding a cure for cancer. Kim has worked in politics and assisted in the passing of numerous legislative pieces impacting patients with cancer and their families. She is an activist in the field of oncology, nursing and beyond. Additionally, she is a volunteer and champion for a cure with the Leukemia and Lymphoma Society's Light the Night Campaign. Kim has shared her experiences with cancer as a contributor with Cure and through public speaking engagements throughout the United States.
Cancer-related decisions put strain on relationships between myself and family members.
The realities of cancer impacted our family in numerous ways from the date of my sister's diagnosis. Although ill in appearance, there is something entirely different in thinking a loved one has cancer and hearing the actual diagnosis. It was life-altering in ways that none of us could have fathomed at the time. In the days and weeks that followed, many conversations were had that were not easy.
Initially, it was thought she had non-Hodgkin's lymphoma, and her prognosis was bleak. After thorough testing, we learned it was not non-Hodgkin's lymphoma but Hodgkin's lymphoma. While we were assured that was a better diagnosis, it did not feel better, because although the type of cancer had changed, the reality that it was an aggressive, stage 4 cancer remained the same. No treatment options were discussed; An aggressive chemotherapy regimen known as “ABVD” was presented as plan, and her infusion began just two days after her diagnosis.
Simultaneously with her treatments starting, our family had an internal dialogue about the next steps. As would become commonplace throughout cancer, there were many opinions and almost no ability to come to agreements. Initially, it did not matter much because her care was reasonably straightforward, and we relied heavily on medical advice for guidance. Fast forward five months, and complications of bleomycin toxicity resulted in my sister's inability to navigate her medical decisions.
As her primary support system and caregiver, I stepped in to fill the role of power of attorney. This led to tremendous conflict between myself and our parents because we did not see eye to eye regarding my decisions related to my sister's care. I always tried to create a space for them to verbalize their thoughts, feelings and wants. But ultimately, it was my responsibility to do what I saw was in her best interests, regardless of differing wants or opinions. Unfortunately, that severely fractured familial relationships.
An even more complex situation arose roughly nine months into her cancer battle. A CT/PET scan revealed that her cancer had stopped responding to treatment and metastasized. Since her treatments had failed the goal would now be a bone marrow transplant to gain remission.
Following this news, her care team advised that it was a real possibility that she would not survive cancer. This was a complicated conversation that was had on multiple occasions and one that our parents refused to participate in, as if ignoring the reality before us was somehow going to alter the truth of our situation. Instead, their actions, word choices and lack of presence hurt my sister and me incredibly.
Throughout these challenging periods, I am grateful for the advice and guidance that was given to me by her nurses. I do not know how I would have been able to navigate some of the conversations I faced without the support I was given.
None of the conversations as a caregiver through cancer were easy to have. By far, the most difficult ones were the ones within our family. It was far from easy and proved to be a constant trial and error of putting it into practice.
Ultimately, I was able to learn to take ownership of my part and know that I could only control half of the dialogue and have confidence in my choices and decisions. Getting to a place of serenity surrounding these things helped to make the difficult conversations around cancer slightly easier to have and for that I am most grateful.
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