Going to my first chemotherapy infusion, I felt like a ball of nerves. The shock of being diagnosed with lung cancer was still fresh in my mind, and I didn’t feel ready to start this terrifying journey. But I had my wife by my side, and an army of friends and family praying for me, so I felt like I had everything I needed.
While having to go through chemo and radiation at all is not something I’d have chosen, my experience couldn’t have gone smoother. Now that it’s all over, at least for now, I’d like to pass along my experience to others and prepare them for what’s to come. Here are my top ten recommendations for those preparing for chemotherapy.
Take notes
My wife did an excellent job of documenting every single appointment in a notebook. It was so helpful because it’s easy to forget details when your mind is consumed with surviving cancer. Many times, I forgot what the doctor told me and when my next appointment was. I also forgot what questions I had for my doctor and my nurse, so writing them down was critical. As soon as I arrived at the Cancer Center for an appointment, my wife wrote the date at the top of my notebook. When a question popped into either of our minds, we wrote it down. When the nurse told us something important, we wrote it down. If the doctor spoke to us that day about something new, we wrote it down. Even information that seemed trivial, we wrote down because maybe tomorrow it wouldn’t seem so trivial. There were days we never wrote anything under the date, and that was OK too.
Trust your doctors and nurses
The physicians and nurses at Metro Health are fantastic! When you’re there for treatments every single day for weeks on end, it’s hard not to build relationships with them. They were there on my darkest days, and they cheered with me on my best days. Find that one nurse or staff member who makes you feel the most comfortable, and confide in them. The staff at the Cancer Center is so knowledgeable and they don’t mind answering questions like: What’s in my chemo infusion? What does this machine do, or why is this process done this way? I took advantage of the financial and social work counselors, and even chatted with the pharmacists making my infusions. They’re all so professional, so caring and they truly have the expertise to treat what you’re going through.
Resist the urge to feel overwhelmed
Appointments, exhaustion, stress and anxiety can all seem overwhelming throughout this process. You’re in a battle for your health, and your loved ones are fighting alongside you. The small stuff can turn into big problems if you let it. Allow your friends and family to keep you grounded. Don’t let the weight of it all consume you. Metro is there for you too. Whatever burden is weighing heavy, if possible, let them handle it. If you’re concerned about finances, talk to the financial counselors. If you’re feeling low, speak up to the social workers. You don’t have to do this by yourself.
Listen to your body
Don’t try to be a hero! To fight this enemy raging inside of you, you have to have courage, strength and determination, but you don’t have to pretend you feel fine. If you feel tired, sleep. If your body says stop, then stop. That’s not a sign of weakness, it’s being smart. It’s making your health and well-being a priority and ensuring that the treatment you’re getting has the best chance of working.
An open infusion room isn’t weird
At first, I thought it was strange to have a bunch of sick people in an infusion room together, but it’s actually the opposite. It would be so isolating and lonely to endure hours of infusions in a room by yourself. Metro’s infusion suite is wonderful. The space is comfortable, and being able to walk outside into the healing garden on a nice day was fantastic. I loved watching the nurses working around me, and I enjoyed talking with patients next to me. Hearing other people’s stories and what they’re going through creates camaraderie amongst us all.
Navigating Lung Cancer
Don’t let cancer define you
Cancer is what you’re going through, it’s not who you are. You’re a cancer patient, yes, but outside of the Cancer Center you’re still you. Use whatever energy you have to live life. Do the things that make you happy. Don’t forget to show love to your family and friends. Treatments will take up a lot of your time, but allow yourself moments of enjoyment too. Simple things like getting a good cup of coffee, visiting a friend or walking the dog can remind you that you’re still you.
Both patients and caregivers should read—and use—the Cancer Center journal
Metro gave me a great big binder of information before I began treatments. It’s a lot of information, but it’s extremely helpful. My wife and I both agree that patients and caregivers should take the time to look through it and use it. Even though my wife was the one who kept track of documents and wrote notes in the journal, it helped me too. Whenever a nurse or doctor gave us an appointment sheet or test result sheet, we three-hole punched it and put it in the journal. That not only ensured we didn’t lose the sheet, but we could reference it later in case we forgot something.
When treatment is done, you may feel sad
That statement sounds strange, but let me explain. Showing up for treatments nearly every day for six weeks felt almost like a job, and the people there felt like family. Graduating from treatments was a wonderful feeling, but there were also mixed emotions. We miss the nurses and staff we grew to love. We miss the friends we met in the infusion room. We established a routine in those six weeks, and going back to “normal” life felt weird. Eventually, we got used to the “new normal” but don’t be surprised if life after treatments feels odd at first.
Establish an army of support around you
If possible, always have someone with you during your treatments. If my wife couldn’t come, we always arranged for a family member or friend to take her place. It’s helpful to have someone advocating for you and keeping track of updates. Plus, it makes treatments go by faster when you have someone to talk with. Even outside of treatments, you’ll need support around you. Identify those people, and don’t be afraid to confide in them.
Bring your own snacks
This is something the folks at Metro will tell you as well. When you’re spending hours a day at the Cancer Center, you’ll want to not only eat healthy, but eat something you know you like. The last thing you want is to be forced to use the vending machine every day. Also, caregivers, don’t judge too harshly the foods your loved one wants. Healthy foods are important, but some days you just need something sweet or comfort foods to get you through the day. Additionally, don’t bring stinky foods! Nobody wants to offend a bunch of nauseous people all sitting in one room.
I hope this helps you if you’re preparing for, or going through, chemotherapy treatments. It’s a scary time, no doubt about it. And all the preparation in the world may not prepare you completely for what you’ll experience. These ten things helped me, and I hope they provide you with some comfort along your journey as well.