As a psychotherapist, I work often with individuals experiencing grief and quite regularly, find that people do not realize they are going through the grieving process when they are experiencing something that is not related to death. When we think of grief, we think of funerals and tears, not the loss of a friendship, the loss of a job, or our own health declining. On July 27th, 2020, at 8 am, I was beginning my workday when my phone rang. The voice on the other end of the call was the same warm, comforting voice that helped me stay breathing during my colposcopy only a few weeks earlier. “Your test results have come back. I am sorry, but you have cancer, and we have sent your paperwork up to an oncology team…” I spent the rest of the day, with a best friend by my side, staring at the floor in silence. I had no clue how my life would change or that grief would be part of my journey in some of the worst ways.
The next few weeks went by quickly, meeting my oncologist, setting up a treatment plan filled with backup plans, and many tearful calls with my mentor, Dr. Steve, who was also a cancer patient. I realized quickly what I am sure many others in this community have, cervical cancer is addressed but not often or in-depth enough, and breaking the rules I was given: DO NOT GOOGLE YOUR DIAGNOSIS, I immediately began feeling confused, ashamed, and guilty as I read everything I could find: HPV caused this? No one even told me I had HPV. I attended my exams as recommended, there was never a mention of abnormal pap, just a sore lower back and a lot of confusion. After diagnosis, there are a lot of questions that go through our minds such as: Am I going to die? What if my treatment has complications? Will I still be able to have children? What will happen to my body from the cancer? From my perspective, as a cancer patient and in working with cancer patients, rumination is our best friend and worst enemy.
So many of us in the cancer community have experienced “cancer ghosting” to some degree. When we need people the most, where are they? Quick to offer a kind word and prayers, but when we need help at home after surgery or a ride to and from chemo, where are these wonderful people who offered their support? We grieve the loss of friendships we thought we had. We grieve the way our bodies change from treatment and the loss of our hair from chemo, we grieve the time we lose during active treatment. And sometimes we develop friendships with some people we always wish we knew, and then they are gone. There are so many ways in which we grieve during this experience, and it seems to me that we only understand that grief as we go through it. We grieve how difficult it becomes to relate to others who have not had the same experiences, how could they possibly understand? When I first got sick, my mentor, Dr. Steve, told me, “…with cancer, sometimes we will come to deeply love someone only to lose them, and sometimes we are the ones they lose”. Sadly, we lost Dr. Steve in June 2023 to both
multiple myeloma and pancreatic cancer. I did not realize at the time that he was preparing me for losing him and, of all the things cancer took from me, losing him to cancer while I was still in remission was the hardest pill to swallow.
In connecting with other cervical cancer patients throughout the several months following diagnosis, there was a common theme of being fixated on the HPV portion of the diagnosis. Some said to me that it made them feel shameful because of language used such as “promiscuity” and “contracted through sexual partners”. One woman told me they could not stop fixating on the number of partners she had, a small amount, and began to feel anger toward previous partners. When I addressed the cancer diagnosis as a traumatic experience to this individual, I was met by a baffled expression… “I do not have PTSD”, they told me. Recent research will show that a vast majority of individuals dealing with cancer have either a prior diagnosis of a stressor-related disorder such as PTSD related to experiences in early childhood or will begin to develop symptoms during active treatment which makes the process, and survivorship, a sometimes very difficult period to navigate. To this, the best recommendation I can make is to take care of your mental health in any way possible beginning with your initial diagnosis. If you are a survivor and still feel lingering emotional pain, Psychology Today is a great resource in which you can find a trauma-informed counselor who specializes in working with illness.
Elizabeth Kubler-Ross, a psychiatrist, identified that there are five stages to grief: denial, anger, bargaining, depression, and acceptance in her book “On Death and Dying”. One important thing to acknowledge is that though there are stages listed, they are not linear, and some components can strike even years after finding out we are free of disease. When we think of the moment that we found out we had cancer, can we also recall the emotions surging through our bodies? For me, it was denial followed immediately by depression, and now, three years later, there are more moments of acceptance, but still periods of deep denial, almost to the point where I feel like an imposter. A cancer imposter. Some clients of mine have shared ways in which bargaining presented for them, feeling though if they had just done something differently, they would not have been “punished” with cancer. And that’s the thing about grief, and with cancer, it is not a punishment nor is it something to feel ashamed about. Cancer and loss are things that happen to you, but they do not have to be what defines you.
Through community, we can begin the healing process. The best thing I did for myself when I was diagnosed was to work with a mental health professional individually to process the changes I was about to endure; for my clients, we talk as little or as much as they want about what cancer is doing to them emotionally and/or to their loved ones, and I encourage them to use resources for support such as groups available through the Bright Spot Network, local therapy offices or their cancer center, and programs such as the Cancer Support Network. When someone we love passes, or we have a terminal diagnosis, I encourage joining groups through local hospices, a great and not well-known source in terms of support. It is important to not be fixated on one specific type of therapy, as there are many options, and while something like EMDR may seem appealing, it may not be an appropriate fit at a specific point in time but something such as trauma-focused cognitive behavioral therapy may be. Connecting with others in the cervical cancer community, or the cancer community in general, can be tremendous because it allows us to see and truly feel that we are not alone regardless of where we are on our journey. Cervivor is the best resource, in my opinion, for those with a cervical cancer diagnosis, not just because we are meeting others who had or have cervical cancer, but because we truly are a group of sisters who stand behind and support one another in a way I have never seen elsewhere. There has never been an unkind word from one sister to another because of things such as different treatment, different stages, different complications, just pure and unconditional love and support.
Another thing I often find myself suggesting to clients is to read books on grief, and at times, stories of others’ journeys through cancer. A friend of mine, Gina Moffa, LCSW, is a grief and trauma specialist who recently published a book called, “Moving on Doesn’t Mean Letting Go”, which I initially began reading to help me through the loss of my mother, my best friend Andrew, and Dr. Steve, who all passed within a 10-month period of one another not long after I finally began to feel consistently healthy. Her book provided tools and insight into the grieving process that helped me reframe my entire cancer experience, and through the loss of my loved ones, and continues to inspire the way in which I approach grieving. One thing that makes her book so special is that it feels as though she is speaking directly to you and could be encouraging to those who are still unsure about meeting individually with a counselor, with the reminder that in fact, moving on or through our grief does not mean we have to let go of what occurred in order to move forward. With clients who have loved ones with cancer, are experiencing cancer or grief themselves, I have recommended books such as, “When Cancer Strikes a Friend,” by Bonnie Draeger, “The Grieving Brain” by Mary-Frances O’Conner, “The Beauty of What Remains” by Steve Leder, and “Between Two Kingdoms” by Suleika Jaouad. These books can be read at any point and maintain relevance in many ways as we go through our grief or cancer journey. It is important to remember that our journeys are individual, what may help one may not help another, but encourage you to remember that there are many paths to healing and you are never as alone as you may feel.