A pediatric oncology nurse’s experience came full circle following her own bladder cancer diagnosis, followed by serving as a caregiver to her husband who faced the same disease 6 years later.
As a pediatric oncology nurse, hearing the words, “You have cancer,” did not register with Karen at first. Instead, she thought, “You have to be kidding.”
After experiencing bladder cancer firsthand, she faced a similar challenge 6 years later, serving as her husband’s caregiver when he was diagnosed with the same disease.
In an interview with Oncology Nursing News, Karen discusses her journey as a nurse, patient, and caregiver — all while looking back at the advice she would have given her younger self.
Oncology Nursing News: What ran through your head after you received your diagnosis, and later your husband’s?
Karen: With me, I am an oncology nurse, so I was kind of like, “You’ve got to be kidding me.” You just know so much as a nurse and then you are put in the patient role. The very first things that I thought about was that I was going to die and that this is it. I even thought about having to talk about hospice care with my husband and making sure he knew all about that.
Then, when (my husband) was diagnosed, the very first thing that I thought of was, because we were going to the same institution, that they made a mistake and that they must have gotten the names wrong. The sample must have been under my name or something. It was just kind of crazy what goes through your mind initially. Then, of course, since I had already been living with the disease, I was hoping it would be the exact same type as mine. I was hopeful he would be able to be cured. Unfortunately, that wasn’t the case.
As an oncology nurse, how did that prepare you for both experiences — as a patient and a caregiver?
I certainly knew all of the basic concepts. I know a lot about the drugs, how they are given, side effects, how to manage them. So, that was all a part of my wheel house.
What I was unprepared for is that I am a pediatric oncology nurse. There are very few cases of bladder cancer with children. So, I was learning from scratch. The thing for me is that I have connections and people who know people. So, that was really helpful to me and being able to find the right resources.
Can you tell us about the “With Love, Me” campaign and why it’s so important for the cancer community?
The campaign is really about emotional support first and foremost. It is under Merck’s Your Cancer Game Plan and is a collection of heart felt stories and letters that patients and caregivers have written to their younger selves, talking about what they learned, what they wish they had known at diagnosis.
Looking back, what is something you wish you knew when you were diagnosed that you know now?
It’s really important to surround yourself with as much support as you can. When I was first diagnosed, and I think being a nurse, I was just kind of like, “Oh, you can handle this. This is something I should be able to handle on my own.” But with that support, you get to the best medical healthcare that has a specialty program in your disease to partner with the physicians and the nurses at the center. To be able to make that connection and the rest of the support, you accept the help. That was one of the hardest things for us to do, but when we did it made life so much better, fuller and richer. We were so much more comforted when we allowed people to come in and do stuff for us.
And since you switched roles, what is something you took from your cancer experience and used it in being a caregiver for your husband?
We didn’t leave any stone unturned. If there were symptoms, we kept asking questions and tried to get the answers rather than be at home with a symptom that needed to be addressed. Sometimes during my diagnosis, I might have been feeling things and I sort of discounted it and I wouldn’t have pursued it. But with (my husband), we made sure we pursued everything, asked questions and that was something that we did differently. And the support, we really got much more involved with the Bladder Cancer Advocacy Network as a support for us. That is how I got involved with the “With Love, Me” program.