When I was first diagnosed with terminal cancer, I had the mistaken idea that I would have professionals who would help me understand what was happening and what I/we would do about it. I felt I needed someone to hold my hand and lead me along.
It was confusing to know if my primary care doctor was involved or not. As it turns out, he is sympathetic and is available to me, but not really a main player in my cancer treatment. The medical oncology department maybe was my go-to now? While staff there is friendly and efficient for appointments, getting answers in between appointments can be frustrating.
I finally realized I was going to have to educate myself and become my own advocate. Once I figured that out, I started asking for what I needed and I organized my own care. I have cancer related forums and the internet and medical family members who have helped me see what I need.
Here’s what I’ve learned.
I will say that my primary Oncologist is less than helpful in managing my overall care. I am trying to stop complaining about his lack of communication, but it is a challenge at times. Now, I have learned to ask for the services that I need. He is willing to give me referrals when I ask for them. And he can prescribe the treatments that I need so for that, I am thankful.
A second opinion, not local, gave me the confidence to stay local and to accept my diagnosis. That particular doctor, a national expert in urologic oncology, has continued to be a support to me through telehealth appointments and some procedures.
He has told me that I have put together a good team and that they are there to help me. He is kind and responsive and his nurse gets back to me, sometimes in minutes.
Early on, I asked for a physical therapy referral. I had a terrible pain in my hip and I hoped that physical therapy would be beneficial. I went for several weeks, but nothing really helped. I finally learned that my pain was from a cancerous lymph node that had wrapped itself around a bundle of nerves. No physical therapy was going to change that. I chose to stop PT on my own. No one quizzed me about it.
Next, I asked for a referral to palliative care. Our daughter-in-law has a board certification in palliative care and hospice, and she educated me that palliative care can happen at any point of need. You don’t have to be ready for hospice to tap into palliative care expertise. My experience is that the palliative care team has been the closest I have gotten to care coordination. They are available, responsive, and they communicate that they care.
Just yesterday, I had a new need for palliative care, and the nurse who responded to my portal message was someone who had helped me six months ago. “It’s so good to talk with you!“ I told her. “I know,” she replied, “but I always think that if I haven’t talked with you that means you are doing well and that is a good thing.” The simple fact that she remembered me was a comfort.
Whatever need I have had for pain management, and at times, a listening ear, palliative care has been there. I have a nurse, a nurse practitioner, and a doctor all on my team if I need them. They might be my favorites! When I need hospice, they will be my first call.
My cancer is bladder cancer so urology is another specialty important to my care. Unfortunately, my confidence in my local urology options is low. Fortunately, I have a nurse practitioner here who knows me and is responsive. The doctor in Chicago, the specialist, is a go-to for me with urology procedures as they arise.
During months of attempting chemotherapy, I got to know the nurses in the infusion center. There are a lot of them, and they were all knowledgeable and kind. One day I was having a mini-meltdown (mainly prompted by the lack of communication from the oncologist) and one of the nurses knelt beside me, heard me deeply, and told me to be in charge of my care even if it meant changing doctors. I am deeply grateful to her and I’ve told her so. She boosted my confidence to be in charge of my own care.
After chemo didn’t work, I was referred to a radiation oncologist so I could start radiation along with immunotherapy. My first appointment with him, which was mostly informational, was scheduled for an hour, as a recall. Really? That had never happened before. He was thorough and kind and smart.
At an early meeting with him, he said, “We need to do something about this kidney of yours.” From the beginning, my left kidney had been enlarged but no one had commented on it beyond my scan reports. I wondered what we might do? Well, he explained, they could put a drain in it. “So, can you make that happen?” I asked. Indeed, he could and he did.
Within a few days, I had an appointment with Interventional Radiation and had a tube in my back that drained that kidney into a bag. A nephrostomy. Why no one else had thought it important is mystery to me (and adds to my belief that I need to be my own best advocate).
At one point, I tried to move my care to a medical oncologist in Chicago (I’m in central Illinois, so a 2.5-3.5 hour drive, depending on which clinic) but she told me it doesn’t make sense. I can get the care I need, albeit with less personal connection, here, locally, and that is worth a lot.
She would not do anything differently than what I get here, and she is available to me anytime. She has even called me randomly to check on how I am doing and told me to consider her a team member. I’m content here near home again, after my appointment with her.
Educating myself and asking for what I need has made a huge difference in my mental health. If other needs arise, I am confident I will find a way to meet them. So, I am content and grateful to stay close to home for regular care now that I have built a team and know I can access them for what I need.
Have you had to build a health care team on your own? Did you find helpful professionals? Did you lack communication? How did you solve any issues that arose and how did you manage to get what you need?
Tags Medical Conditions