You Have Cancer—Now What? Finding Your Voice After Diagnosis

#004 A cancer diagnosis can leave patients and caregivers feeling overwhelmed, unheard, and unsure of what comes next. In this episode of Hope Forward, Lisa Spain shares practical ways to advocate for yourself, ask better questions, stay organized, and build a care team that truly supports you. From navigating second opinions to protecting your mental health and inner circle, this conversation is about helping you find your voice and move forward with clarity, confidence, and hope.

📒 Show Notes and Resources 📒

✅ Contact Rexanna's Foundation
https://rexannasfoundation.org/contact/

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https://instagram.com/rexannasfoundation/
https://facebook.com/rexannasfoundation/

Transcript

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When you hear you have cancer, what happens next can be absolutely overwhelming. Appointments, scans, medical terminology, I mean the fear, the decisions, the weight, and everybody has information they want to give you, right? But somewhere in the middle of all of that, many patients begin to feel they're losing control of their own story. This episode is absolutely about you reclaiming that story. You guys, your voice matters in this entire journey. Your questions matter, your instincts matter, and your caregiver's voice matters too. The strongest thing a person can say is I have questions. And you guys, the most powerful thing a caregiver can say is you're not facing this alone. Hi everybody, it's Lisa Spain, Executive Director of Rexana's Foundation, here for our latest episode of Hope Forward. You know, one of the most important parts of cancer treatment is learning how to speak up, ask questions, organize information, and build a care team that listens. Today we're going to walk through practical ways that as patients and caregivers, you can advocate for yourself, that you can prepare, that you can persist, and you can create a partnership that truly matters to help you navigate this journey. Unfortunately, a cancer diagnosis, it changes life instantly. I've seen it personally on so many levels. The parts you remember sitting in that room when the diagnosis happens, the silence, the look on the doctor's face, the doctor's expression, all of it create memories. But sometimes we don't remember what they've said. What we don't realize is the first few weeks after the diagnosis are often the most emotionally charged, disorganized periods of the entire journey. I always am talking to patients and I'm telling them, you know, because the stress level that exists when you're diagnosed in those first few weeks prior to getting a plan, those feel the most stressful. And that's when you really need to stop and breathe. You guys, you may not remember the information clearly. You may be feel pressured to make quick decisions. And that is a place that I need you to call a timeout. You may be hesitant to ask questions. I know I've been that way before because I was taught, man, the doctor's the expert, and the doctors are the expert, but that doesn't mean we should hesitate to ask questions. It doesn't mean we should hesitate to have our voice. We want to make sure we're our own advocate. This advocacy, you guys, matters from day one. Not because you're there to fight or create tension between the medical professionals and the doctors, but because cancer care is absolutely complex. The best outcomes happen when there's a partnership between you, your family, and you become active participants in your care. In each of our Hope Forward episodes, I take a three-to-one approach. Three facts or pieces of information, two perspectives, and one action item for everybody to take. So we're gonna get started. First are three facts. First of all, the first step in finding your voice is organization. And I know everybody pretty much knows their personality, right? You know if you're an organized person or not. But if you're not an organized person, that's where you need to bring into your inner circle someone that is, someone that can help you navigate this journey and stay organized. Those of you that are very organized, there are ways that you can navigate this and ways that you can support your journey. Because you guys, when the emotions are high, when the stress level is high, organization absolutely matters. You guys, here's the truth. Patients who stay organized often communicate way more clearly. They reduce the mistakes, they relax, and they feel more empowered during treatment. You guys, the first thing that I'm gonna suggest in this organization create you a command center. I call it command center. Pick out the terminology that works for you. But this can't command center, let's talk about a few things. It could be a designated place in your house. You're gonna have many doctors' visits, you're gonna have hospital visits. Have a place in your house where you already have that mini backpack that's prepared. Have a place in your house where you have the binder, the notebook, whatever it is that keeps your information. Now I know we're in a digital world. There are lots of shared caregiver apps that you could also keep that information. Sometimes I keep notes on my phone. There are plenty of ways that you can do this. You want to keep the details that you are experiencing when you go to your doctor. You want to keep the diagnosis details. Maybe it's your medical list. Today, just as a blast to the past, you know, Rex Hanna's foundation was named for my very best friend who passed away of lung cancer all the way back in 2006. Now, Rex Hanna and I were both organization fanatics. So I have to tell you to be prepared. So when you see some of the examples, but I kept all of the information I had because now I'm 20 years later, but I'm still a passionate patient advocate for patients that are out there in their families to help them navigate the journey. And you guys, I can tell you from 20 years ago, what we did to organize ourselves was exactly what we needed at the time. And some of it's still valuable information. So let me share with you. This is actually the notebook that we used that was Rex Anna's notebook in 2006. We created this notebook in April 2006 for Rex Anna's journey. And I'm gonna share with you some of the things. The very first page was important information that you need to know. Let me tell you why this notebook was important then as well as it is now. You're gonna have caregivers around you, and caregivers, I'm talking to you now too. Caregivers, it's an emotionally draining responsibility as well. You're in it for the long haul. You're there to support the patient, but sometimes you need breaks too. So this caregiver book, this notebook, this guide file, whatever you want to call it, is something that you could leave there. So if the caregiver that is your normal caregiver, like I was for Rexanna, is not there, and somebody else comes in, so your caregiver can have a break, it still gives them the details and reduces their anxiety, gives them confidence in the journey. But again, this is general information. Uh, you guys, even caregivers that are at the house, some things that you may not think about, like I kept a list. Here's the day that there's maybe gonna be housekeeping, maybe it's the day that your pup goes to the kennel. Uh, maybe if you have a pool when the pool people are coming, your yard people, whoever's gonna be in and out of your home, it's good information for whoever's gonna be there. Another piece of information, we created a grocery list. Um, I think it's outstanding for you and good advice if you keep up a list of the foods that work, they don't work, keep a journal of what you eat because different treatments affect you different ways. So we put a list together of the foods that really work for Rexanna. Obviously, you want to keep a list of the medicines that you're taking, maybe the amounts. Also, if there are certain side effects, because if there is somebody new in the house and doesn't realize there's gonna be redness in an area, maybe you're given injections for that day. Um, also, Rexanna was on a study. If you're on a study, there are surprisingly medications, things you cannot take. So that's important to keep up with, too. So we actually kept a list of things to avoid during her trial. Obviously, you want an emergency contact list, a problem list. We also kept a list for the pharmacy numbers. Um, I had a list of her favorite takeout places for food that she still liked. Again, it was a quick resource. I kept a copy of every single business card, of every single doctor, professional, mental health support, every single person that was in our network at that point. Again, it's a quick, easy place to go to. Um, nutrition was really huge. It still is, you guys, what we eat, the intake. So we kept up with just nutritional um lists that work for Rexana. Um, on this, I have on chemo treatment days. We actually had the foods that worked because we kept a list of foods that Rexana could handle when it was chemo days. So again, those are things. Um sometimes you get sores in your mouth and your throat becomes sores. What could we avoid? Again, you learn this in the process. Obviously, some people can give you your doctors can tell you some suggestions to begin with, but every individual it handles very differently, impacts very different, responds differently. So you want to keep up with your own list. The last thing that we have here is the bag that we had packed for when we were spending the day at the hospital. And this was everything from the little things Rexana wanted, chapstick, to um directions to get there, where our favorite parking spaces were, where we wanted to be, her snack bag, you know, anything that you can think of that you would need. We also had a list for what we wanted packed for overnight stays in the hospital. Again, just tips that you can use for how you can organize yourself and really make a difference in this journey. Also recommend, write down every single bit of information you get. And now it's amazing because I make recommendations to patients. Record the doctors, just tell them I would like to record your responses and record what they're saying. That way you can go back and listen to it. And especially, I know everybody doesn't have somebody with them all the time at every single visit. So that recording would allow you to play that back for whoever your family member is that supports you, your caregiver. Just don't assume that you're gonna remember everything later because none of us can. We can't remember everything on a normal day, much less at the stress level when you're navigating this journey. Also, you got to remember your physical, you're tired, you're mentally stressed and exhausted. So writing things down, recording information is so much better. So, number one, organize yourself. Now to number two. Number two is the power of your questions. One of the greatest mistakes patients make is they stay silent. They sit there and they listen. Many people are afraid to ask the questions. Can you explain that again? Help me understand. What are my options? What happens if we wait? What if I take some time to get that second opinion? Is there another treatment that's available? What are the variety of treatments that are available? I absolutely want a second opinion. Let's discuss my options. You guys, asking questions is not disrespectful. It's responsible. You are advocating for yourself. Some questions you might add to your list. I got to thinking. Let's talk about at the diagnosis. What type of cancer is this exactly? Did you complete genetic testing? What were the results? What's the stage in my cancer? Has it spread? Where has it spread? What tests still need to be done? Let's think about at treatment. What are the goals of this treatment? Are they curative? Are they management? What are the side effects that I should expect? And what symptoms should require emergency? Who should I call if something is going sideways? Let's talk about quality of life questions. How will treatment affect my work, my everyday life? How will treatment affect my sleep? What about my appetite? What about the foods that I eat? Is there things that I should consider relating to nutrition? What about my mental health? What could I expect from that perspective? What about relationships? You guys, all of these are questions that you should ask. You want to be involved about that. And especially when you are navigating this journey. Let's talk about the timing because this is where a lot of patients feel very anxious that they need to make decisions immediately. You need to ask, is this something that's urgent that I need to make the decision immediately? You need to have time to think about it, time to approach a second opinion. I want to approach a second opinion. Will you help me navigate that so I can make sure I'm connected with a teaching, learning, research hospital, especially if you're at a community hospital? And then you need to ask about the clinical trials that are there. And when we're talking about timing, think about the timing in your life. You need to ask questions about if you've not been pregnant before, whether you were going to save your eggs, sperm, all of those are types of questions that you need to ask initially so you understand how you navigate this journey. You guys, a good doctor is never gonna be threatened by informed questions. A good doctor should not be threatened by a request for second opinion. And I'm gonna tell you this is just Lisa's opinion, but if a doctor is hesitant about a second opinion, you need to change doctors. You need to get the right care team that welcomes engagement, that welcomes a team approach. So number two is all about asking questions. So let's go to number three. Number three is about speaking up and using those questions. Advocacy does not require confrontation, you guys, but it does require confidence and consistency. If something feels wrong, say it. Let them know. If a symptom worsens, let them know. I can say this from experience and also working with Rexana and supporting her and many other patients that I've been a caregiver for. Sometimes we have the mentality that we need to suck it up, that we need to battle through the pain. You guys, there are times when you have to get strength and stability and the, I don't know, I would call it the capability of navigating this journey through some of the pain, but there are absolutely symptoms that you should not ignore. There are things that worsen that you should not ignore. You need to report them. And if you don't understand what the doctor tells you or whoever the physician is, then ask the questions. Practicing, advocating for yourself are things that you can do. There are some key terms or phrases that I would say put in your pocket and always have available. One is help me understand. Stop. That's a way it's not abrasive, it's not confrontational, but just look at that medical team and say, help me understand what you're saying. I need you to break that down. Maybe I don't fully understand this option. I need more details. I need clarification. Would you repeat that? I need to understand exactly what it is you're saying. What would you recommend if this was a member of your family? What would you recommend and do if this was you? I'm concerned something has changed. Can we talk about that a bit more? I'd really like another opinion before deciding. All of these are self-advocacy phrases that I think you need to consider. But you guys, at the end of the day, your intuition matters. Patients often act recognize and feel the changes within them before scans appear. Do not minimize your symptoms, especially if they feel very strong. Because your strength and is your honesty, your strength in navigating this will make a difference. So the two things I want you to always remember is as we move forward in this, I've given you the three. First of all, you need to ask questions. You need to be an advocate and a voice for yourself, and you need to get clarity. But let's talk about the two things I want you to look at. And these are the perspectives. Today I'm going to share with you two areas that I think would bring a better perspective to your journey. The first area I want you to think about is the mental and emotional advocacy. You know, cancer is certainly not just physical, it's emotional, it's mental, it's financial, it's spiritual, it's stressful. Advocating for yourself means protecting your emotional health. Ask your doctor what's available at the hospital. Talk to your insurance company from the very beginning to find out what is available to support you. There are so many programs out there that many patients have no idea are available to them through their insurance, through their doctors, through their medical agencies. Make sure you check. There's some important supports that I want to share with you about. There's counseling, there's support groups, there's online groups and discussions. I guarantee you with your same exact type of cancer. Make sure you reach out to them. Knowing and talking to someone that's in the same journey as you somehow relaxes and provides a level of stress release that makes a difference because you can talk to them one-on-one about exactly what's happening. There's also nutritional support out there, how to navigate this journey with what you intake for food. There's mental health therapy. There's so many options. So please check out what's available. You guys, you're not failing if you're asking for help. Nobody is meant to carry this journey alone. That's why we started this podcast because we wanted you to know we're creating a community of hope for each other. So the second area is in this mental help journey is building your inner circle. You guys, you need to choose people around you that bring peace instead of panic. You need people that are willing to help instead of overwhelm. And certainly we want people that are willing to listen. They encourage you instead of draining you. You guys, your energy is a valuable asset in the journey of battling cancer. It is critical for your energy during treatment. You've got to protect that. So you've got an inner circle, you've got this team that's with you. It's all right, all these other people. You are just limiting your inner circle to those that are with you day in and day out. You want to be very considerate of who is attending appointments with you because of how they navigate this journey. So those are our two. It's focused on the perspective of mental health and your inner circle. Now we're down to number one. The most important thing that I want to tell you today, and it's the action item I have for you. It's to give yourself grace. Man, you are going through a lot right now, a lot of changes, a lot going on. But I want every single listener here today to remember you're still you. It's you. The diagnosis changes your schedule, it may change your priorities, it may even change your perspective, but it does not erase your identity. And I know that's so important. Even for you guys that are listening out here, how do I interact with patients? You guys, sometimes they want somebody to listen to them, they want somebody to talk to them about the medical journey, but sometimes they still just want to go to dinner with their girlfriends. They still want to go to the movies, take a hike. You guys, movement, physical fitness, all of that is so important during this journey. You guys, you deserve respect. You deserve all the information that you want. You deserve compassion, you deserve clarity in this journey, you deserve a partnership, and you absolutely deserve hope. Finding your voice does not mean pretending you're never afraid. All of these questions, I know the angst is there, I know fear exists, but it means choosing to participate in your care, even when fear is present. And there's nothing wrong with saying you're afraid, voicing it, voice it to your medical team, voice it To your inner circle, let them know that way you can navigate it with somebody together. You guys, thank you so much for joining me on this episode of Hope Forward, where we focused on finding your voice. If you know someone walking through cancer right now, a spouse, a friend, anyone, or you're a caregiver, please share this episode with them because the strongest thing a person can say is I have questions. And you guys, the most powerful thing a caregiver can say is you're not facing this alone. At our website, RexanasFoundation.org, there's a contact us link. You guys go to that link. If you want more information, if you'd like me to share some of these questions, we have plenty of information we can share with you. Please reach out. Give us the information that you need to help you navigate this journey. And if you're on YouTube, please share your story with us. How did you find your voice? What is your best tip that you can give to others? We're absolutely listening. You guys, this isn't just a podcast. We're creating a community. You guys, my goal for this podcast is everybody that's moving through cancer or supporting someone battling cancer will have the clarity that they need, the support and information to make those courageous decisions. Until next time, please keep asking those questions. Keep learning and keep finding your voice because when we advocate, when we have clarity, when we find our voice, we are definitely moving hope forward.