I never received a manual on how to be a caregiver.
— Lisa Yen
Becoming a caregiver to someone living with NET cancer looks different for each person. Some embrace this role enthusiastically, while others assume it reluctantly. The relationship with the NET patient may be that of a spouse, sibling, parent, child, relative, or friend. The responsibilities of a caregiver vary and may include physical care, advocacy, research, navigation, collaboration, education, logistics, or communication. (For simplicity, we will use the term “caregiver.”) The common thread is that NET caregivers are vital in supporting a loved one living with NET.
This is my story…
January 2, 2015 was the day my life was forever changed.
That was the day my husband was unexpectedly hospitalized for the first time in his life. Overnight, I took on a new role—caregiver to my husband. I suddenly stopped worrying about everything that used to worry me – big, important things including my career, goals, and ambitions. I also stopped sweating the small stuff—turning 40 with increasing white hairs and unmet goals. It all faded away. What mattered to me became crystal clear. I was 100% committed to walking alongside my husband and supporting him in his NET cancer journey.
Although I knew who was most important, I didn’t always know how to best care for my husband. I never received a manual on how to be a caregiver. There have been periods where I’m unable to consult with my husband when he’s simply been too ill. There have been other times when I focused on physical or medical needs and missed the emotional support he longed for. While it’s been a challenge for both of us to learn about NET and how to live with a cancer diagnosis, I recognize that I’ve also been on a separate journey of discovering how to best care for someone living with NET. It’s complicated and ever-changing, full of nuances and shifting roles and responsibilities. It cultivates patience and sensitivity. It deepens intimacy. It’s both hard and rewarding. I could never have imagined I would be in this place. Yet, I’m certain that if my husband must live with NET, there’s no other place I’d rather be than by his side.
Many of us serve as partners in the NET journey and yet, our journeys are also our own. LACNETS understands that NET caregivers need care too and so, we are committed to addressing their unique needs. Caregivers often grapple with identity, self-care, and isolation. Caregivers may have questions such as, “Do other people struggle with the same things I’m struggling with and if so, how do they handle it?", “Who can I talk to about my concerns?”, and “How can I be a better caregiver?” We at LACNETS desire to support caregivers by providing opportunities for them to discuss their concerns and experiences.
To this end, we invite you to join us for our monthly virtual support group for NET caregivers. This is a 2-hour private forum just for caregivers facilitated by palliative care physician Dr. Chandana Banerjee and psychiatrist Dr. Kim Shapiro. Our meetings are typically held on the last Saturday of every month. RSVP by clicking here.
One of the most important lessons I’ve learned in becoming a caregiver is that self-care is now part of the job. It’s no longer optional; it’s essential. Self-care includes receiving our own support and connecting with others with similar struggles. Sharing experiences and insights with others builds inner strength and resilience.
We might still not have a manual for how to be NET caregivers, but we have each other. And together, we are stronger.
For caregiver resources, visit our LACNETS caregiver page.
Written by Lisa Yen, NP, NBC-HWC
Director of Programs & Outreach, LACNETS