The Rollercoaster No One Expects

Kidney infections, kidney stones, menopause, hair loss, osteoporosis, septic shock, ostomy, depression, body image issues, and mental health struggles.

None of these words would typically be used in the same sentence when describing a young adult, but they are common when describing a young adult cancer patient/ survivor. My name is Allison Rosen, and I am a 10-year stage 2c colorectal cancer survivor. The above are just a few of the issues I deal with now as part of my survivorship journey. Don’t get me wrong, I am grateful that I am alive and beyond indebted to my healthcare team who I admire. However, once I was cancer free and the acute support provided to me started to dissipate, it was then that these symptoms along with other issues started to arise. I often say that the physical and mental health support you get during treatment needs to continue long after you are declared NED (no evidence of disease). I’m sure many survivors can understand that after you are told you are cancer free, the intensive support slows down. People just assume that you are “all better” and can just resume life as it was before cancer. For many, if not all survivors, this is unfortunately not the case. Yes, I was alive, but now I was dealing with the long-term struggles I wasn’t necessarily warned about or ready for.

To start, my kidneys and ureters were damaged from abdominal and pelvic radiation as well as multiple surgical interventions. As a result, I now had to deal with recurring infections and kidney stones. The pain from these rivaled anything I had previously felt, and I became a regular visitor to the ER. I added a urologist to my rolodex, and over time, I have been able to deal with these issues with medicine, hydration, and various procedures.

The other aspects of survivorship that are not often discussed with young adults is our fertility and sexual health. I was single and have always dreamed of being a mother. Thus, I asked about fertility before my treatment began and had a plan to preserve my eggs. Unfortunately, I got very sick the night before this process was to begin. After a lengthy discussion with my family and medical team, we decided I needed to start cancer treatment ASAP. This decision was one of the hardest and most agonizing I have ever had to make in my life. I distracted myself with the day-to-day treatment. I couldn’t process this decision until premature menopause started and my treatment was over. As you can imagine, when these emotions finally came out and I was able to grieve that loss, knowing that I will never have a biological child, I couldn’t stop crying. The mental toll of what I had gone through was the worst. To deal with this, I chose to seek professional help and a local young adult support group. I loved my close friends and family who provided massive support, yet the support of perfect strangers helped me deal with these struggles because other patients and survivors understood what I was going through and, sadly, many could relate.

Before cancer, I worked out all the time. Now—with a permanent ostomy and osteoporosis— I have the body of someone much older than my chronological age. I still work out, but I have to be more careful than someone my age typically would need to be. The lessons I learned to help with this came from others in the cancer and ostomy community. Strength can come from connecting with others. This has been a lifesaver for me. Intellectually, I knew I wasn’t alone. But it wasn’t until someone else could relate—in real time—that I knew I really wasn’t alone. Often, you have to be your own advocate when it comes to issues like this. I knew my life would never return to how it was before, but I was determined to engage in the activities and hobbies I once loved, including exercise, adventures, and traveling.

The long-term survivorship issues after cancer are both physical and mental. They clearly deserve more attention from the medical community. I’m an example of someone that sadly experienced and still deals with these struggles on a daily basis. I have found ways to cope and deal with these issues, however, I would like to see a comprehensive discussion of life after cancer, or long-term survivorship with metastatic disease, to be discussed earlier and more readily. For me, quality of life is so important. There are so many items on my bucket list that I am determined to do and check off my list. My determination and drive to return to the best quality of life didn’t happen overnight. If you are currently in the first few months/years after cancer, know you are not alone and that there are others just like you who are struggling. I am so proud that cancer taught me to never say no to an adventure! I have been able to go surfing with a group of cancer survivors with First Descent, skiing with Send it, went on my dream trip to South Africa, and hiked Table Mountain. Besides these adventures, I have learned to tackle my mental health issues head on. I know one day that I will be a mother, it might not be how I had originally expected, but there are options out there for me. My body may never be the same and my ostomy, which I once hated, gave me the freedom to travel without worrying about where the toilet was.

The AYA cancer community is often filled with a display of toxic positivity. Therefore, I always make sure to share both the positive along with the negative, in hopes others can relate to my struggles and successes. If one person can benefit from the lessons I have learned and from reading my story, then that motivates me to continue to share. As crazy as it might sound, helping others has helped me heal in the years post cancer.

This article was featured in the March 2023 Unseen Challenges of Survivorship issue of Elephants and Tea Magazine! Click here to read our magazine issues.