We Versus I: Forming a Team as Patient and Caregiver
My daughter, Crystal, was diagnosed with Hodgkin lymphoma in 2016 at the age of 25. It was one of the hardest times in our lives. My husband and I were beside ourselves wondering what we would do to help her get through this tough time. Luckily, my job allowed me to take family leave and so we decided that’s what we would do. Once this was decided, I became Crystal’s primary caregiver and personal driver when she went to treatments and doctor visits. It was at this point that Crystal and I became a team of two and ‘I’ turned into, ‘we’.
Whenever she had to go for chemo, we went together. The same was true when she visited the doctor, had to go to the emergency room, got hydration, and mostly everything else related to her cancer treatment. It would have been hard for her to go by herself and I wouldn’t have been able to bear the thought of her being alone. Although she was a grown woman, she was still my little girl. Working together, I knew we would do what we had to... to beat this!
Spending time together as patient and caregiver
As a caregiver, I think it’s important to let our family or friends know we are there for them. Finding out you have cancer is tough enough, but thinking you may have to go through it alone must be even harder. I didn’t want Crystal to have to go through any of it alone and I wanted to be right there by her side through it all.
It was definitely tough sometimes, but being there for her was so important to me. I remember finding out that her sisters were going to go to one of her treatments with her and I felt a bit sad I wouldn’t be there. It was great for Crystal to have this time with her sisters. But, I worried if her sisters would know what to say if there was a problem, and did they realize how sick she got during treatment? Of course, it turned out fine, but I still worried. After all, no one could take care of her better than her mama!
My role as a Hodgkin lymphoma caregiver
Helping Crystal through this period in her life was hard on her. At times, she felt like a burden. We all want to be self-sufficient, but there are times we need the help of others. I was so glad she allowed me to be there and help her. Sometimes it was hard but it would have been even harder to have not helped. I would have been worrying about what was happening, how she felt, and if she could make it home ok. Things were pretty tough for her on treatment days. Although we tried to do some fun things, we both knew what was to come. Part of being a caregiver is letting the person know you are there for them and wouldn’t have it any other way. I hope I made Crystal feel this way,
The benefit of a team approach
When you have cancer, I think having a team is a good thing. Mostly, I was the only one that went with Crystal. Luckily, I had the time to take off and my job allowed it. For us, Crystal and I became a ‘we’. If you can get the whole family involved, that’s even better. Just know that they need you and becoming a team of ‘we’ will help you all get through this awful time.
Have you used CAR T therapy as a treatment for blood cancer?