When I started treatment for a bone cancer diagnosis at the end of my senior year in college, I was grateful to meet other cancer patients who shared their experiences, tips and lessons. While nothing can completely prepare you for the wild ride called cancer, it helped to have some knowledge to lean on, and mostly just know others had lived through this horrible disease. But the one thing people didn’t really mention was life after treatment, and the side effects that often come with it.
I supposed when you’re going through treatment, your medical team (and you) just want to get you through it. Focus on kicking cancer to the curb. And that’s a great focus! As more people survive cancer (yea!), research and focus is shifting to life after cancer and long term health. And this is awesome. With more than 16 million survivors in the United States and more than 32 million worldwide, these are conversations needed in the medical community and among us cancer survivors.
Perhaps we don’t talk much about side effects after treatment because we don’t really know what may happen after our bodies begin to heal. But it is a conversation to have so other survivors know they’re not alone in challenges and can receive support and help.
I still face side effects from the four chemo drugs that made up my life-saving cocktail. My ears have been ringing since that first dose of Cystplatin, and caused some minor hearing loss. I took almost the max lifetime dose of Adriamyocin, which can cause heart damage (part of my hesitancy to have children since pregnancy can cause stress on the heart). The titanium rod in place of my femur and top part of tibia gets annual checks to ensure the pieces are all snugly still attached to each other and my remaining bones (I had the first rod replaced not even 18 months after treatment ended due to a fall). And while these side effects and others can cause me to roll my eyes, cry tears of anxiety or scream into my pillow, I also know I will take these side effects every day. Because you know what? I’m alive to experience them. I survived an aggressive cancer that too often kills people. So if I’m inconvenienced a bit because I have to take a day off from activity to let my leg rest or have to get an echocardiogram to ensure my heart is functioning, then I’ll take that inconvenience.
Here are a few tips that may be helpful whether you’re in or out of treatment for cancer, or another health issue:
Use resources. There are so many resources available to those going through cancer treatment. I wish there had been half of these when I was sick! It can get overwhelming to find a few good ones. I like the tips and resources offered by cancer/health-related organizations, such as LIVESTRONG, American Cancer Society, Live Better With Cancer, Nutmeg Aspirin and the Cancer Support Community. There are also many blogs (like this one!) and online community forums that provide first-hand insight from other cancer survivors.
Talk to your doctor about what to expect. I’m a planner, even when I was 21, so I wanted my doctors to give me info to prepare mentally and physically (knowing that cancer causes major disruptions in plans!). Being aware that my blood counts were greatly affected by each chemo drug, for instance, helped me sort of know when I might need a blood transfusion (I had 40+ during treatment) or be wary of infection. Definitely bring up any changes or new conditions to your doctors, as they may be able to help minimize or stop side effects. Even though I’m 20 years out of treatment (yea!), I have an annual check with my oncologist at the hospital’s long term clinic. This allows me to ensure my body is still healthy, monitor my heart and ears (most affected by my chemo), keep my medical team in the loop on my health and changes, and of course, socialize with the team who saved my life!
Be proactive. Since I know that my chemo drugs can cause heart damage, I am dedicated to regular cardio fitness. It helps that I love to be active, but that thought about heart damage is in the back of mind when I slack. My cardiologist is pretty impressed by my heart health (and who doesn’t like to impress your doctor? Um, just me?). I also make choices, knowing I’m my own advocate. For example, flying in airplanes isn’t great for my ears (the ringing gets crazy after a flight!), but I love to travel so not flying isn’t an option right now. I weigh the pros with the cons. Instead I limit what I can control – I love live music, but try to attend open air or large venue concerts where the noise isn’t so concentrated, wear earplugs and wander outside of the concert for quick breaks when possible. I also am cautious about certain physical activities, weighing risks to my leg.
Focus on what you can do. I can’t ride horses, run or be super physical due to the titanium rod in place of my femur. And there are still days those limitations frustrate me. I’ve cried about missing horses, been self-conscious or annoyed with myself when friends race into an activity I can’t participate in, and even kicked a pillow in frustration a time or two. But after a moment (or admittedly a few moments) of feeling low for myself, I remind myself (or my mom, sisters or some fabulous friend does) of what I’ve overcome, can do and accomplished – hiking in mountains, rock climbing, cycling, dancing and so much more. Life has taken something or someone from all of us. That’s part of….well, life. And while we should acknowledge those losses and frustrations, I’m also a believer in embracing optimism and positive energy. It’s personally how I get through all of the ups and downs in my life. Sometimes that accomplishment is getting out of bed, brushing your teeth and maybe even taking a shower.
Talk to other cancer survivors. Who better to learn about cancer and side effects than from someone who has lived through it? While you should keep in mind that people experience different side effects and outcomes, it can be comforting and helpful to know someone has experienced your pain, rash, vomiting and whatever else. With technology and social media, you don’t need to live nearby to get support. I am eternally grateful for the support, encouragement and advice I received during and after treatment. It’s a big reason that I’m so open about my experience – hoping to help ease someone else’s anxiety, frustration and confusion. Here are a few other quick tips that I learned through chemo:
Vitamin E oil on your bald head and nails. Maybe it didn’t help stimulate growth but the massages felt pretty awesome!
Lightly pat eyebrows/lashes to help slow or prevent them from falling out. I couldn’t stop the hair on my head from falling out but being gentle on the eyes helped prevent complete fall out.
Polish nails – not sure if this kept my nails from thinning and breaking but I felt pretty.
Avoid carbonated beverages before and during chemo. While I still got sick from certain chemo, I felt like avoiding carbonation minimized the upset feeling.
Stay active to help keep your body and mind strong. I was on crutches for the first six months of my 13 months treatment. I was used to being an active college student. I walked, even on crutches, through the halls of the hospital floor, up and down my parents’ long driveway, wherever I could, even if it was only from my bed to the bathroom or couch. I simply had to move. Once during treatment, I was hooked to a heart monitor so figured it was a good time for leg lifts, tricep dips and crunches – my nurses didn’t agree but my cardiologist chuckled. Being active helped remind my body and mind that we were fighting.
What tips do you have for managing side effects from cancer treatment (or similar)?
*In the spirit of being real, I’m a volunteer for LIVESTRONG and ACS Cancer Action Network, and part of the writing community for Live Better With and Nutmeg Aspirin. No compensation, simply love what they offer to the cancer community.