Caregiver turned patient: “Dear every cancer patient I ever took care of, I’m sorry. I didn’t get it.”
The patient’s voice is more than important to any discussion about health care. It is essential, because there are some things that patients understand better than all the experts.
One nurse, who has worked in oncology nearly her entire adult life, recently shared that perspective in an incredibly moving blog post. “Dear every cancer patient I ever took care of,” caregiver turned patient Lindsay Norris wrote, “I’m sorry. I didn’t get it.”
Diagnosed with stage three Rectal Adenocarcinoma, the mother-of-two described what it’s like to go from caregiver to patient.
“I didn’t get what it felt like to actually hear the words,” wrote on her blog. “I didn’t get how hard the waiting is… I didn’t get how awkward it was to tell other people the news… I didn’t get the mood swings… I didn’t get that it hurts to be left out.”
“I didn’t get that it never ends. Never. I used to tell you that cancer will be just a phase in your life. Just like high school or something ― it seems like it drags on and on when you’re in it, but soon it’ll all be a memory. I’m sorry if this made you feel marginalized ― it is not a phase. Yes, there are phases ― the treatment won’t last forever, but you are changed now. The worrying won’t stop, the uncertainty won’t stop, the fear of recurrence or an awful end won’t stop.”
Read the entire post at Norris’ blog, Here Comes the Sun.
The Power of the Patient’s Voice to Start a Conversation
Patients have a special power to educate and inform the most critical conversations about health care. They also inspire more people to join the conversation.
Thousands of people around the world were touched by Norris’ words, and were inspired to speak up. Here are just a few of the topics discussed in the comments inspired by her letter.
- Need to improve communication during diagnosis: “Some thing that has been bothering me that my chemo Dr said that I haven’t really talked about was that he felt good about my diagnosis and that it was just a common case of breast cancer. Like I had a common cold and just needed some vitamin c.”
- Importance of empathy in providing care: “This made me cry. I’m not on the cancer side of things, but rather the nursing. I’m only a nursing student, graduating in May. But this touched me on a deep level. I think this principle can go towards anything a patient is going through. At the end of the day, as much as we try, we just don’t get it. I try to be as empathetic as possible, but that still doesn’t mean I get it. It’s an amazing eye opener to realize that I will never be able to fully get it. I just have to do my best to be there for my patients and understand as much as possible.”
- Tendency for care to become cold and clinical: “No one gets it, Sweetie, until it happens to them. First, lots of tears; second, lots of questions; third, more tears and fright; fourth, treatment. Nurses can be very clinical – it’s their shield but a few poke through that shield to make the patients comfortable, holding their hand no matter how briefly. I’ve had both types and prefer the latter. I’ve been cancer free for 12 years and counting. Thanks to everyone involved, even God.”
- Recognizing emotional rollercoaster after diagnosis: “2nd time around for me. This time it’s an incurable version. My addition? I didn’t understand that some meds might make you uncontrollably angry and hard to live with (Dexamethasone). I didn’t understand that your own anger then depressed you. I didn’t understand that patients have to be allowed to talk about their own shortened life, they may need to let you know they are reconciled to their fate and not hear platitudes.”
- Helping caregivers: “My mom was diagnosed with terminal stage cancer. Reading this helps.”
We want to hear from you!
We’re committed to advancing the patient’s voice to the forefront of every discussion about health care. We’d be honored to hear from you.
Send us an email by clicking here. Are you ready to join the conversation?
- Become a Patient Advocate: Join our team of patients advocating for health care reforms that put patients first.
- Share Your Patient Story: Tell your story or experience that can help other patients or policymakers understand the patient’s perspective.
- Get Help Overcoming a Barrier to Access: If you are facing a barrier to access, we want to help you overcome it.
Get involved. Speak up. Join the conversation.