What the Resource Gap Looks Like From the Patient Chair
Today is Columbus Day. Most of us learned the classroom version, where Columbus sailed into the unknown to find a new land. We know now that story leaves out a lot, starting with the people who already lived here, which is why many places also honor Indigenous Peoples’ Day. But one piece of the old story sticks with me. He set out sure that something was waiting for him, and when he finally landed, he didn’t even know where he was.
That’s what a new cancer diagnosis feels like. Deep down, you know help is out there somewhere. What you don’t have is a compass, and the people you expect to hand you one, your care team, often don’t. When I was diagnosed with non-muscle invasive bladder cancer in 2018, nobody handed me a list. Nobody said, “Here’s who can help with bills,” or “Here’s someone who’s been where you are.” So I went home and started finding cancer support on my own. I kept searching for the next eight years.
Wayne Mylin, an integrative cancer coach, recently wrote a LinkedIn article called Good Resources Are Not Enough. His point is simple. Hospitals often have counseling, financial navigation, support groups and survivorship programs, but patients finish treatment without ever hearing about them. The resource exists and the need exists, but the two rarely meet. He’s right, and I want to show you what that gap looks like from the patient chair, and then from the advocate side where I sit now.
The Voyage You Expect and the One You Get
In a perfect voyage, someone meets you at the dock on diagnosis day. Your care team hands you a map with the help already marked on it. A social worker points you toward money for bills and gas. A nurse navigator connects you with a mentor who had your same cancer. Later, when treatment ends and the fear of recurrence creeps in, someone reminds you that support is still there. Some patients get that voyage. For a lot of us, the real one looks different.
You set out with no map, so you start searching on your own. The first website you find hasn’t seen an update in years, and half the links go nowhere. You call a phone number and learn the program closed long ago. Next you find a grant that looks perfect, then read the fine print and learn you don’t qualify. A support group sounds promising until you see it meets an hour away on a weekday morning. That works for retired patients, but for a younger patient who still works full time, it’s not an option.
If you have a lesser “popular” cancer, you meet amazing people, but they cannot relate or answer questions you have about your specific type. And peer support from one organization does not know where to send you for your specific need. You take what you can get but the gap shifts just beyond the horizon. So you turn the ship around and try again. Before long you’re circling the same few websites and landing on the same empty shores. Eventually you stop searching, because you’re too tired to keep sailing in circles. That’s the gap I lived in for eight years.
Eight Years of Searching
About six months after my diagnosis, I found the Victory Center in Toledo, Ohio. It was a local cancer support center, and the people there became my soul support. They got me through that first year.
Then life shifted. I moved to Georgia only weeks before my one-year cancerversary, and I felt like I had to start all over again. A few months later, a Facebook search led me to Beyond the Ribbon in Gwinnett County, Georgia. They were kind and welcoming, but the support stayed on the surface of general emotional care. Nobody there knew what bladder cancer felt like from the inside and I was the only one there with bladder cancer.
Meanwhile, the other gaps kept piling up. I searched for financial assistance and couldn’t find a single program I qualified for. Peer mentors? I never knew they existed. I didn’t find a local support group until two months ago, when I was on the brink of starting my own. That’s when I learned two had existed for years!
I also knew about BCAN, the Bladder Cancer Advocacy Network, but I stayed away. I thought it focused on people who had their bladders removed, and that wasn’t my story. After many years, I clicked a link about new treatments and started paying attention. Now I see all kinds of benefits there for me. I just found them about eight years too late. I’m so glad they updated things, and now I send the people with bladder cancer I support straight there.
The Beacon Came From Other Patients
Here’s a truth that stings for me. I didn’t find any of my support through my doctors. I found it on my own and after I became an advocate, through other patients and survivors who shared what helped them. It was mostly other “Sickfluencers” who helped me understand my disease better. And I’m pretty resourceful, so digging is kind of my thing. If it took me eight years, I worry about the person who is worn out and searching from a phone in a waiting room.
Wayne wrote that many programs depend on one champion, and care becomes fragile when they do. For a lot of us, that champion turns out to be another patient. Today, I’m looking towards the nine year cancerversary, and I mentor newer patients through BCAN, Imerman Angels and my own advocacy work online. It’s the same kind of support I never knew existed when I needed it most.
Too Many Small Boats
When you’re like me and you see the gap, you try to fill it yourself and pull other people into the boat. The trouble is that a lot of us do this at the same time, so you end up with dozens of small groups doing the same work and sharing the same links. From the outside, you wonder why they don’t join forces and spread the support further. Instead, an unspoken competition creeps in over whose group is better, and some leaders get so focused on owning the space that the people they set out to help get lost in the turf wars, silos and the scarcity mindset.
Even Good Lists Can Overwhelm You
I have to be honest about my own work here. Plenty of organizations post resource lists, but many haven’t touched them in years. Links break, programs close, and nobody goes back to check.
My own list at Cancer Support Studio has over 700 resource links, and I know it can feel like a big wave coming straight for you. A patient searches once, and then goes down the wrong path, and they forget where they found that one helpful link. Then comes the point about timing. You won’t search for housing help or a ride to treatment until the day before you need one. A resource that means nothing to you today can become urgent next month. I can’t know what is needed when they land on my page, another clear gap that I am working on. What I do know is what people ask me for most: financial help and emotional support, then treatment information, in that order.
How to Use My List Without Getting Lost
My resources page is a growing list, and you don’t need to see all of them today. Start by bookmarking cancersupportstudio.com/resources so you can find it again later. Then search one need at a time. Type a single keyword into the search box, like Financial, Mental Health, Mentorship, Local or your cancer type, and open only one or two links from what comes up. When something looks helpful, write it down with the date you checked it, so you’re not hunting for that link again next week. If it starts to feel like too much, close the page and walk away. The list will still be here when the next need shows up, and I keep adding to it..
Until Every Patient Has a Compass
Good resources aren’t enough on their own. Healthcare networks need clear paths that bring patients to the help that already exists. You go to the doctor for help, so you should leave with a map of where to go next. Until someone builds those paths, patients and caregivers drift out to sea alone. They keep searching for that one bright star to guide them toward help. Meanwhile, we advocates will keep lighting the way from shore, one shared link at a time.
In Part 2, I share what healthcare teams can do to hand every patient a map from day one. If this helped you, send it to someone who’s searching right now.
We got this friends! <3