10 Most Important Things Every Cancer Patient Should Know

#009 Lisa Spain shares the 10 most important things every cancer patient should know — lessons shaped by 20 years of walking alongside patients and families since losing her friend Rexanna to lung cancer. From asking for a second opinion to accepting help, grieving what's changed, and finding hope in uncertainty, this episode offers honest, hard-earned guidance for anyone facing a diagnosis.

📒 Show Notes & Resources 📒

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Danny, a good friend of mine, he's battling pancreatic cancer and he shared with me, I'm starting to think about how to fill my days since I've decided to start living like I'm not dying anytime soon. He's thriving. He's not just surviving. I'm so happy for him. His mindset helped transform his journey. Hey everybody, it's Lisa Spain. Welcome to the Hope Forward Podcast. I've been doing so much reflection lately since it's been 20 years since Rex Anna passed away from lung cancer. Since Rex Anna passed away, my life has been transformed in so many ways I could not even begin to describe. And many of them for the better, but that doesn't mean I don't desperately miss her. And I don't think about her every single day. Grief for me is so weird, it comes in waves like the ocean. But in my reflection recently, I was thinking about the times in the evenings because there were many times that she couldn't sleep at night. And we would stay up and watch David Letterman. Now I know many of you out there are going, who is David Letterman? And I'm completely dating myself by referencing him. But anyway, he ended every one of his shows with a top 10. So I decided to do my own top 10 of the most important things that every single cancer patient should know. Trust me, this is not an end-all, be-all list, and I'm sure that many of you have plenty of other items you would add to the list. Feel free to leave those in our comments. But I took a stab in it, so let's get started. So, first, number 10, your quality of life is just as important as your treatment. Many patients believe they should just push through, they should suck it up through the treatments, assist symptoms, and avoid mentioning any of the side effects. But you guys, you can't do that. Many times when you're trying not to complain or you don't want to interrupt the treatment, you guys, that's not good. In reality, your healthcare team needs to know anything that is out of the ordinary. So when you're going into a new treatment, you can ask, what are the side effects I should expect? But what are the side effects that I should let you know about? When should I call you? Make sure that you report those to the doctors because many times pain, fatigue, anxiety, depression, changes changes in your sleep patterns, all of these could be items that should be addressed. Maybe it's appetite changes, shortness of breath, neuropathy, brain fog. Again, talk to your oncologist to let them know. The earlier these symptoms are treated, the easier they are to manage. Good symptom control can help patients navigate a treatment and stay longer and improve your outcomes. Too many times patients think that they need to tough it out. You guys, that's not always the best. Remember, you deserve to feel as well as you possibly can while you're fighting cancer. Number nine, accepting help is a strength, not a weakness. One of the hardest lessons for many patients is to learn to receive. Friends often ask, what can I do? How can I help? Instead of saying nothing or I've got this, give them something specific. Here's my tip I give to patients all the time: have a list. Have a list of things that are easy to do. You don't need to give them a lot of explanation for, and that they can choose from. And when somebody asks if they could help, text them the list. Say pick one of these things, and you just share that list. For example, your list could have pick up groceries, drive you to appointments, walk the dog, prepare dinner, sit with you during treatment, watch the kids, help organize your medicines, send encouraging texts, pray for you, simply just keep you company. But if you have a list, you can just text it to them, give it to them, email them, whatever. It surely makes it a lot easier. You guys allowing people to help you will reduce the stress. And it reminds everyone that they're all in this journey with you together, and they have a role in that journey. Sometimes the people closest to you feel the most helpless in the journey, and you're really giving them the gift of action. Number eight, movement is medicine. I have to remind myself of that all the time. But you guys, you don't have to run marathons. One oncologist once told me that moving from the couch to the recliner every so often even helps. Even small amounts of movement can help. They reduce the cancer-related fatigue, they improve your mood, they preserve muscle strength during this time, they improve sleep, they reduce anxiety, and they increase your energy. They help improve your balance. And you guys, they give you that independence that we all want and need. Sometimes this could mean walking five minutes a day, could mean just gentle stretching at your home, could mean just sitting in that chair but exercising, moving your legs, moving your arms. Maybe it's light yoga. Maybe you could participate in physical therapy. You guys, the goal isn't to be running the marathons or fitness fanatic, but the goal is really about function. Now, certainly, if you are into fitness before the diagnosis, then completely maintain your routine with your oncologist approval. Keep doing you, but always discuss any activity with your healthcare team. But just remember, especially you can move anyway, any amount, and it's really going to be the best medicine for you. Number seven, your emotional health deserves treatment too. This is so critical for us, you guys, because cancer affects far more than our body. Many patients experience fear, anger, grief, isolation, scanxiety, uncertainty. Then we have survivors' guilt of the ones that are thriving because they were able to have surgeries. There's also depression that's associated with cancer. Every one of these feelings are absolutely normal. And there's someone out there fighting cancer right now that's having those same exact kind of feelings. You do not have to carry those alone. There are so many helpful resources. Maybe it's oncologists, oncologist social workers, could be counselors, there's support groups, there's patient navigators, there's advocacy groups, spiritual care. You could journal, meditation, a trusted family and friends. There's so many people that you can connect with. Don't stay in isolation when you're struggling. Mental care, mental health care is taking care of yourself during cancer. Number six, be your own best advocate. You guys, everybody knows this is really important for me. Ask questions, request clarification, because no one knows your body better than you. Keep a notebook. I did an entire Hope Forward podcast on being your own best advocate because that's how important it is to me. Plus, I wanted to repeat it today. But while you're advocating, make sure you're getting your biomarker tested. Make sure that you're taking this life-saving measure, especially for the cancers like long that need it. You guys keep notes, questions for your healthcare team. Make sure you have the medicine list, you have side effect list of when you're eating certain things and you're seeing different impacts. Keep up with your test results, all your appointment notes, and never feel guilty about asking questions. Can you explain that in another way? Help me understand. What are my options? What happens with this treatment protocol? What are the side effects? What are side effects I should be worried about? What are side effects that I should expect? What are side effects I should report to you? Let's discuss a second option. All of these are questions and conversations that you as an advocate should be happening. The most informed patient is the most empowered patient in the journey. Remember, you're a partner in your care, not just a recipient of it. Number five, nutrition is about nourishment, not perfection. You guys, cancer treatment often changes our taste, our appetite, our digestion, all of it in the treatments, it can be very impactful to how we navigate our journey with nutrition. There are days when feeding with eating can seem like an absolute challenge for you. Instead of striving for the perfect diet, sometimes you just need to get nourishment inside of you, right? Eat small, frequent meals. Stay hydrated as much as you possibly can. Prioritize protein to help you maintain the strength to support your healing. Enjoy the foods that appeal to you. Sometimes when you're struggling to eat, find anything that tastes good to you. Even if your preferences change, you got to roll with it. That's the other thing. Our taste buds change. So try foods that you may not have liked before. Sometimes you're looking for foods that have more seasoning because you want the flavors. You guys, whatever it takes, do it. Work with an oncology dietitian. Many of these medical support teams have someone for nutrition to help you navigate this journey. Make sure you're asking for a nutritionalist to support you. You guys, some days it's not about just healthy eating, it's about eating to support your body through the treatment. Number four, your support system matters. It really matters, probably way more than you realize sometimes. Studies have shown over and over again that strong social support improves our emotional well-being through this journey. And it helps our patients effectively cope with everything that's going on. Support can come from so many different ways, you guys. It can come from family, immediate family, extended family. It can come from friends, it can come from faith communities, it can come from advocacy groups, there's cancer support groups. Right now, there's so many Facebook groups for cancer. You can find a group that aligns with the type of cancer you have and connect with people that are going through the exact journey you are going through. You guys, you do not have to do this alone. Find fellow survivors that are navigating this journey. Don't isolate yourself. One meaningful conversation a week can completely reduce your feelings of loneliness and remind you you're not walking this path alone. Number three, ask for a second opinion. Another one I know you guys have heard me say over and over again, but it deserves the mention. It is a complete mantra of mine. You guys asking for a second opinion is not challenging your doctor. You know what it's doing? It's adding to your team. It's adding another team member, it's adding knowledge, it's adding diversity, it's adding experience. Always, always, always ask for a second opinion. Number two, it's okay to grieve your life that has changed. You guys, cancer brings so many losses, including your loss of health, including your loss of independence, changes in appearance, maybe it's financial stress, career interruptions. The changes and losses vary depending on the person and where they are in the process. Sometimes it's altered family roles, missed milestones, uncertainty about the ch future. All of this is changes. Grieving these losses doesn't mean that you're giving up. It means that you're acknowledging something important in your life has changed. You're putting a name to it. Giving yourself the permission to experience the sadness, the frustration, the disappointment without judgment is huge. Healing emotionally begins when we allow ourselves to be honest about the feelings that we have. And you guys, these are real. But I want you to know that hope can also coexist with all of this uncertainty. Hope changes throughout a cancer journey. Hope at sometimes, at first, it could be I'm hoping for a cure. Later, hope can become maybe you just want good scan results. Maybe you want more treatment options, more time, less pain, attending a graduation or a wedding of a family member, watching a grandchild grow, just enjoying an ordinary day, finding peace in the journey. You guys, hope is not pretending everything is okay, but it's choosing to believe there is still something meaningful in every day that we can find in every day ahead. Many long-term survivors have said they've learned to celebrate the small victories. These small victories could be a lab report, it could be a walk outside, it could be a meal that tasted really good, it could be laughing with your family, it could be the bucket list trip, it could be cle completing another treatment. All of the moments matter. Lean into them, capture them. And number one, you guys, cancer may change your life, but it does not define who you are. There is life beyond cancer. You're still a parent, you're still a power a spouse, you're still a friend, a grandparent, a mentor, a daughter, a son. You're a person with dreams, talents, and purpose. Your diagnosis is just one part of your story, not the whole story. Quality of life is measured by how fully you continue to live, to love and to connect and find meaning in every single day. Continue to celebrate those birthdays, take the family photos, laugh often, plan the small trips, watch the sunsets, read the books, finish the degrees, listen to the music, spend time with the grandchildren, plan the trip for next year, create the memories. Cancer deserves your attention, you guys, but it doesn't deserve every single bit of it. Your life is still filled with so many moments worth living, relationships worth investing in, and dreams that are absolutely worth pursuing. Danny, a good friend of mine, he's battling pancreatic cancer, and he shared with me, I'm starting to think about how to fill my days since I've decided to start living like I'm not dying anytime soon. Man, Danny, so glad to hear that. Danny just graduated in May with his doctorate degree as he is progressing in this journey with pancreatic cancer. He's thriving, he's not just surviving. I'm so happy for him. His mindset helped transform his journey. He doesn't have that positive, I've got it all taken care of mindset every day, but he leans in when he can. I'm so excited for him. So let's do a quick rundown of Lisa's top 10. Number 10, your quality of life is just as important as your treatment. Number nine, accepting health is a strength, not a weakness. Number eight, movement is your medicine. Number seven, your emotional health deserves treatment too. Number six, be your own best advocate. Number five, nutrition is about nourishment. Number four, your support system matters so much. Number three, get that second opinion. Number two, it's okay to grieve the life that has changed. And number one, cancer may have changed your life, but it does not define who you are. Now for the action item. Every podcast I have one action item I like to live with you, leave with you. I want you to think about these top 10. Which one of these do you need to lean in a little bit more? Which one needs your attention? Maybe you're a caregiver or support system. What's one that you can really help encourage your patient with? Take the time this week and address the one that can be the most helpful for you in this journey. If you could leave one message for every single patient in their diagnosis, what would it be? Where would they need to leave in? How could you encourage them using these top 10? You guys, hope isn't about denying the reality of what we're facing. It is absolutely believing in the joy, the purpose, and the meaningful moments that really matter for us. Even in the midst of cancer, there is so much left of life to live. Thank you so much for joining me on the Hope Forward podcast today. We've focused on my top 10 for the most important things that every cancer patient should know. You guys, if you know somebody walking through this journey right now, a friend, a patient, a caregiver, anyone, please share this episode with them. Share it because we want to make sure we create a community. We want to provide the best support we can for every single person navigating this disease. We want them to know they're never alone in this journey. You guys, we're creating a community with this podcast. The goal for this podcast is to make sure everybody navigating the disease has the support, the encouragement, the hope, the education to make all the difficult decisions they need to make. And sometimes we just gotta lean on one another to bring those nuggets of hope and joy. So until next time, absolutely lean in on the moments that bring you the greatest joy. I know that there's realities with you facing and battling cancer, but together we can keep learning, we can keep sharing, and we can keep supporting one another. And when we do that, we absolutely move hope forward.