This post has been revised since its original publication.
I'm sitting here trying to write something, and I honestly don't know what to do. I've worked hard to unhook from the devastations of cancer and find my new normal, including having a voice to help others. And somewhere along the way, my own dirt got some of my readers dirty. As a patient and now survivor, I often experienced the feeling of being "not heard" by those around me and literally being dismissed and passed over so someone else could talk about their problems. It feels terrible to be the one passed over and "not heard."
Because this dynamic came through in my blog "The 6 Injustices of Cancer," some important people who have been impacted by and suffered with thyroid cancer now feel dismissed, passed over and not heard. This was not my intention. For all of you who experienced pain after reading my words, please forgive me. Your journey is your own and I want to acknowledge you for bravely living (and sometimes) dying with this type of cancer.
My intention was to write an blog that people could relate to about the frustrations and hardships of having cancer. I didn't mean to belittle anyone on a cancer journey, and it was an unfortunate choice of wording when I used thyroid cancer as an example. Your comments have made me see. I'm so sorry I didn't see before.
Please know I am hoping for the best for each one of you and will work with the Thyca community (http://www.thyca.org) to change the stereotypes that go with thyroid cancer. I will begin by writing a new blog inspired by one of your comments: "You must have no idea what it's like to live without a thyroid." Well said!
So, as of today I am officially requesting that each of you, if you feel like it, send me a paragraph or two about what it has been like for you or someone you love to live without a thyroid or with the disease of thyroid cancer.
Please read Reimagine founder's response to this article: "To everyone hurt by Cindy's article..."
I went through a helluva time with my cancer right after my baby was born while my young family watched (my youngest son an infant, my eldest son age 4 and my daughter age 6). What's more is that two guys with M.D. after their names completely missed my problems for months, although I had explicit complaints of chest pain, dry coughs, night sweats and exhaustion.
Unexpectedly, at year five of remission, I also became a heart, liver and lung patient because of earlier cancer treatments. Open-heart and then open-lung surgeries saved my failing body. Along the way I have identified several common but troubling "injustices" that most of my fellow patients experience.
1) When it's over, it ain't over.
Remission does not mean recovery. The medical community pronounces patients "done" once their final treatments of chemo, radiation or surgery are over. However, for most people with cancer this is where the real challenges begin.
Social, emotional, psychological and spiritual problems related to cancer show up all too often for most patients. For instance, one of the most common concerns survivors and caregivers encounter is anxiety about cancer related health issues long after they have recovered. This problem is so real in our society that the Institute of Medicine published a lengthy report on this topic called "Care for the Whole Patient" and said, "If we are not treating the psychosocial distress of patients then we are not treating cancer." (2007)
The formal name for this type of challenge is called psychosocial distress, and the practitioners who treat it work in a world called "psycho-oncology." Some of the most common stressors named among psycho-oncology clinicians and their patients are concerns related to the experience of medical traumas, fear of recurrence, low mood, spiritual disillusionment, sleep difficulties, relational distress, sexual dysfunction, identity crisis, problems with body image, disability, infertility and more.
But why is this an injustice? Here's why: Most patients are never told that they may encounter debilitating problems after cancer nor are they directed to any sort of help. Typically, rather than attending to a patient's mental or spiritual health, a patient's doctor will "medicate" their distress with a prescription rather than helping them to unravel their concerns at a core level.
Since the IOM report in 2007, most major medical centers have tried to provide more whole-person care by designating at least one person on staff who is supposed to help patients with their psychosocial needs. However, because of lack of training or time, this type of care tends to be more form over function. I have heard reports of this designated "helper" simply handing patients a pamphlet about depression or adjustment after cancer but never truly assisting them once they leave.
2) Cancer now could mean more cancer later.
While we would all like to believe that survivors are now and forever cancer-free, this might not always be the story. Recurrence of cancer, either the same or another type than you had before, is a viable concern. Incidents of secondary or later cancers are very real. Also, one type of treatment now can be related to causing other types of cancer later on.
For instance, I had a friend who underwent a bone marrow transplant for his lymphoma only to develop leukemia one year later as a complication from his original treatment. When I was about to go through my radiation treatments my oncologist had me sign a consent form acknowledging I was choosing to have "toxic" treatments and that the risk of secondary cancer as a result was pretty high. Namely breast cancer. Remember, chemotherapy is actually a "Spray and Pray" technique. Spray it on and let's all pray it kills the cancer but doesn't cause any more damage.
3) Your doctor may dismiss your concerns.
If you know someone who has cancer you have probably heard at least one person say, "Doctors did not find it the first time." The Internet is full of horror stories about people who had a headache, a backache or an actual lump and were passed over again and again by their physician only to have it found later. My own story was similar. I was in front of two physicians during my pregnancy that dismissed my complaints of aches, pains, coughs and exhaustion only to later discover that an eight-inch tumor was sitting in my chest and had been aggressively growing the whole time. You are your own best expert on what you're feeling. If your symptoms are not normal for you and your health care team doesn't seem to hear you, make an appointment someplace else.
4) Cancer is humiliating.
If you haven't found this out already, be prepared. When you undergo tests, scans, biopsies and treatments all dignity is gone. No part of your body is off limits to the eyes of everybody in the room. Once when I was admitted to the hospital for chest pains after complications from my cancer treatments a doctor brought his new medical students into my room to teach a lesson about my particular illness. He then proceeded to open my robe, expose my bare breasts and write a diagram across my chest in a large tip Sharpie marker. No, I'm not kidding.
If a lot of people haven't seen your body parts by now, you might not have cancer. One way to fend off the effects of this injustice is to insist that you remain as covered up as possible at all times. Also, extra people do not need to be in the exam room. It's your right, especially at teaching hospitals where they often have extra personnel always wanting to learn something new, to be able to say "no" to interns, study groups, residents, extra technicians, medical students, chaplains, social workers, janitorial staff, the billing department and the like. Your body, your choice.
5) Some cancer patients get off really easy.
Face it, cancer ain't cancer anymore. With new innovations in treatments and a very wide spectrum of what gets defined as "cancer" you are surely going to meet folks who think they've had a cancer experience just like yours. But they didn't.
I know folks who were so knocked down by their treatments they couldn't walk and others who continued to go to work during their ordeal and rarely felt sick. Here's the deal, millions of people get cancer and it is usually a very hard experience for most. Some cancers are more easily treated with a small surgery or a little pill. However, on the spectrum of "treatment experiences" most of us fall somewhere in the middle.
If your cancer experience was a horror story, stand tall and proud that you made it through. But keep yourself in check. If you've never had cancer of the lung, rectum, brain, pancreas, head, neck, anus, liver, breast, one that requires a transplant or cancer of the female reproductive organs, count yourself lucky. Not only are many of these types of cancer quite deadly but they are also among the most uncomfortable to treat. High on pain and often low on quality of life afterwards (if they live), these folks represent the worst among us. If you're not one of these folks, perhaps you should be quiet and sit down and let someone else tell their war story.
6) Your friends may not understand.
No one around you can truly comprehend what you're going through so stop trying to tell them. I'm serious. As cancer patients many of us have a strong desire to share every detail of what we're going through with those around us. However, this isn't good for you or for them. Why? Because it freaks people out. Haven't you seen people's eyes glaze over when you tell them about your surgical drains, emergency room visit and your port? Stick to your own kind for moral support. Its enough for your tribe to bring you a meal, hold your hand when you're scared and give you rides to your next chemo appointment.
In the well-known movie, The Bucket List, corporate billionaire Edward Cole and auto mechanic Carter Chambers find themselves sharing a hospital room while they both have cancer. While there were medical staff and family that wanted to help, it was really only the two of them who "got it."
Ultimately, all of these injustices (if they don't kill you) can and often do make you stronger. However, fleshing that out on the hot pavement of real life is different for everyone. Some folks find ways to heal up after cancer by paying it forward. The fact that their story can help others seems to be its own remedy and they find peace of mind easier than others just knowing they are making a difference for someone else. The "make my suffering count" people are often the ones we find racing for a cure, writing articles to fellow survivors or volunteering at their local hospital.
But there's another type of person who survives cancer as well. With cancer, like so many other traumas, everyone heals differently. Some of my friends who have walked through the terrors of traumatic illness for themselves or with someone they love and simply want it to be done and over with. No heroics. No silver linings. No cancer telethons. Just let me be normal again.
Deeply feeling people, these tenderhearted survivors quietly tuck away their tragedy and try to reclaim life, or some semblance thereof. The wicked kick of this type of approach is that in their "It was what it was, now let's move on" mindset, their deep and profound wounds can lay beneath the surface, unhealed, quietly infecting every part of their lives. Too often, I have seen untreated trauma that can turn into long-term depression, relational demise, intense hostility, existential despair, loss of faith or substance abuse.
Remember, one man's brick wall is another man's springboard. You've heard the one about the pony and the room full of manure, right?
Whichever type of survivor you are, take some time to unpack the trauma and injustice of your illness with a few other people who "get it." As a clinician and trauma survivor myself, my rule of thumb is to "Spread it out." If you have three or four really great people in your life, share a little bit with each one. No one person can hold all of your crap. Not your spouse, not your BFF, and not even your therapist (they have limits, too). Share a bit of your struggle with a few key people. This will speed your internal healing and you won't burn out any one of your friends or family along the way. Then, set an intention to find the springboard that takes you to your pony. Life will smell better once you do.
The information provided in this column should not be used for diagnosing or treating a physical or mental health problem, disease, or condition. If you have or suspect you have a medical or psychological problem, please consult your medical doctor or psychologist or appropriate health care provider. If you think you have a medical or psychological emergency, call 911 immediately.