Donna is a former Hospice Social Worker, a former Elder Law Attorney, and an ovarian cancer survivor. Her website www.survivingtoflourishing.net is coming soon.
All of my life I have been a master planner. So when I was diagnosed with ovarian cancer, my preparation skills kicked into high gear.
I researched how diet could help with the side effects of chemo. I purchased special skincare products aimed at chemo patients to protect my skin and cookbooks for recipes that help with side effects. I cooked. I had a freezer full of nourishing soups ready before each round of chemo. I drank mineral broth both before, during, and after chemo. Did it work? Who knows? Fortunately, except for round four of six, my side effects were tolerable.
What I was not prepared for was the aftermath of emotions once I got the coveted “No Evidence of Disease” (NED) after my first scan.
At first, I was overwhelmed with relief and gratitude about the scan results. I was shocked that my aggressive ovarian cancer was quelled for now. What I was not prepared for, was the wave of emotions after my scan results. As a social worker who helped clients through grief for almost a decade, I should have been aware that I was in a state of shock and survival during chemo and that it would only be after the shock wore off, i.e., after treatment, that I would deal with the emotional upheaval of everything that I went through. But I didn’t remember that and I didn’t apply it to myself so when the flood of emotions occurred, I was caught off guard.
Boy did the emotions flood in, like a tidal wave. I was hurt by the people that didn’t even bother to reach out with a simple “thinking about you” while I was diagnosed and going through treatment. The hurt came out as anger. It didn’t matter that I had an amazing support group that got me through. I was angry at those who ignored me during my time of need when I was there for them during their time of need. I didn’t know then that it was so common for cancer patients to be forgotten or ignored by their friends and family. Not that it makes it okay, it is just comforting to know that it’s not personal to you.
Most of all, I felt lost.
I remember sobbing in my Oncology Nurse Practitioner’s office. I knew I should be happy, there were so many people in the room just next door hoping for my results, but I was not happy and I felt guilty about it. I didn’t know who I was anymore. I physically could not do many of the things that I did before. I was having trouble word finding and remembering. I couldn’t fathom that this would be my life now.
I was reluctant to go to therapy for a while even though I knew I needed it.
I was the therapist and caregiver, not the patient. I eventually relented because I knew that what I was doing by myself was not working and that I needed help. Therapy helped me tremendously to process the trauma of facing my own mortality. For me, it was a why me, but it’s not what you think. It wasn’t why did I get cancer, that was not a question I ever asked. It was a why am I responding to treatment when I had a dear friend with the same cancer who wasn’t responding?
Survivor guilt is real among cancer survivors.
I had to work through those feelings of guilt and accept that everyone’s body is different, everyone responds to treatment differently, and that there really are no answers to that “Why me?” question. Cancer teaches you to live in the unknown.
Therapy also helped me understand that sometimes people not responding to you has nothing to do with you. Maybe they don’t know what to say. Or maybe your cancer journey brings up things for them they are not ready to face. I have learned to forgive, most of the time, and to move on. Forgiveness has allowed the anger to subside and now it is much easier to focus on what is in front of me and all of the things and wonderful people in my life that I have to be grateful for.
The biggest adjustment has been learning to accept my new limitations.
While therapy was working, I was still struggling. I discovered Epic Experience during a Google search. Their mission is to empower adult cancer survivors and thrivers to live beyond cancer. I watched their YouTube video, cried, and immediately knew I had to apply to their adventure camp for survivors. I was fortunate enough to attend camp this past winter. Camp pushed me to do things physically that I wasn’t sure I could do, but mostly it helped me to accept that I can do things, just maybe at a slower pace than others. And that is okay. Camp allowed me to embrace the life that I have.
Focusing on what I can still do instead of what I can’t do helps me remain positive. While I still have physical limitations due to stamina and fatigue, I now give myself permission to rest instead of feeling guilty about the need to rest. I still have trouble word finding and remembering, but it is improved. My healing is definitely a work in progress, but most days, I am happy. And I definitely don’t take a moment of being alive for granted.
I am not sure if knowing the tumultuous storm that comes after treatment would have helped.
I am not sure that there is any way to prepare for that. I am just grateful that I had a care team that was as supportive after treatment as they were during treatment and that I was able to get the care I needed to start to heal the emotional upheaval that is cancer.