If you or someone close to you has been diagnosed with cancer, then you know that dealing with the emotional aspects of cancer can be a roller coaster ride during the diagnostic stage, or even sooner when symptoms first appear. I experienced many different emotions and a myriad of “what ifs.”
For me, the emotional aspects began with the suspicion of what might be the cause of my swallowing problems. I experienced denial: a refusal to admit that my dysphagia could be something more than just careless chewing habits.
I procrastinated going to my GP because I was afraid of the diagnosis and prognosis. I felt as though I constantly had a dark cloud hanging over me.
I was relieved (prematurely) when the Ear, Nose and Throat Specialist told me that it wasn’t cancer, even though he used a scope to look down my throat. I’m still confused as to how he could have missed it.
I experienced anger when I was told that my gastroscopy revealed that my esophagus “looked like a dog’s breakfast”. What kind of doctor says this to a patient? I got even angrier when I found out that a thoracic surgeon had been lined up to remove my entire esophagus without anyone discussing treatment options with me.
Relief again, when I was referred to a specialist who told me that I didn’t fit the demographic for esophageal cancer. Apparently if I’d been a 300 pound man of a different ethnic background, a heavy smoker, and a nonstop drinker of very strong coffee then my diagnosis would have been believable. Being a small-framed woman who never smoked a day in my life and didn’t like coffee just didn’t fit the bill.
Anger again, with relief and a touch of hopefulness, when the specialist also told me that the biopsy samples taken from the gastroscopy were given to a lab technician who specializes in uterine cell biopsies, and clearly my esophageal samples didn’t match anything he was used to seeing, so he diagnosed cancer. Subsequently a second gastroscopy was scheduled to do another biopsy. I recall quite clearly the specialist smiling and joking in surgery about how this would soon be cleared up and he was positive that everything would turn out fine, and then I was asleep.
Devastation. No other description fits. Instead of getting the “all clear” when I awoke from anaesthesia I was told that yes, indeed there was a tumour. It wasn’t in the esophagus as was previously diagnosed, but in the larynx bordering on the esophagus. He showed the pictures to my husband, but I couldn’t bring myself to look at them.
During all of this the fear never left, but now I had to deal with a new emotion: worry about the “what ifs.” I was worried about how to break the news to my family. I was worried about how my husband was going to manage “everything” when I would no longer be able to help him. I was worried about my parents, about the family pets, about the loss of income during treatment, I worried about everything. I was given a one-in-three chance of survival, and I felt helpless and full of despair. I worried that I would no longer be around and I was very very afraid.
I tried to be strong at work and not wear my emotions on my sleeve, but my coworkers noticed that I was withdrawn and not myself. At night I couldn’t keep the emotions in check. I cried at length, and constantly asked “why me”, and “what did I do to deserve this”. I’m ashamed to admit that in fits of rage I would ask “why didn’t this happen to so-and-so instead?” My husband was amazing, and we found that when one of us was weak, the other was strong and comforting.
I also questioned my faith: in God, in the fairness of the universe, in karma, in myself; everything that I believed to be good was shaken to the core.
Breaking the news to my family, needless to say, didn’t help the emotional wreck that I was. My parents took the news amazingly well: all things considered, they were strong and supportive and maintained a positive appearance, and they hid any signs of grief from me although I could tell they were extremely worried. It helped me to stay stronger. I would not show them tears, I didn’t want them to worry more than they already would be. They helped me break the news to my siblings who cried with me. One of my sisters was already a cancer survivor who welcomed me to “the club”. She wisely said that just as I was having to deal with cancer, my family would also be dealing with “emotional cancer”, and I hadn’t thought of it that way before.
Out of all of the emotions that I was forced to face, fear was the most powerful. The immensity of my fear kindled a strong will to survive that triggered the fight within me. I knew it would be a fierce fight, but I became determined to win. I would not be the first sibling “to go”. I would not abandon my husband. No parent should ever have to bury a child and I was determined that mine would not.
Dealing with the emotional aspects can be very difficult but you don’t have to do it alone. It helps to be surrounded by an army of support, and it might be your immediate family, close friends, or your place of worship. You might also like to reach out to one of the wonderful support programs out there, such as Gilda’s Club, or Canadian Cancer Society. My cancer treatment centre also provided me with a team that included a Social Worker and Therapist. Hopefully you’ll get more help than my first therapist who simply told me to “empty your emotional bucket.” If not, then get a new therapist. Now I feel regret for not making more use the many resources that I had at my disposal.
It’s important to note that during this time of emotional upheaval you may want to consider having a second person accompany you to all appointments. My own experience taught me that I wasn’t anywhere close to being in the right frame of mind to absorb all of the information given to me, and it was helpful to have a second set of ears and eyes (my husband Seaghan). He also thought of pertinent questions to ask that I hadn’t even considered.
I still feel fear. It’s been over a year since the end of my treatments, but I’m still afraid. My anxiety level goes through the roof before every routine follow-up and test but quite frankly I’m my own worst enemy in this regard. I’m told that the fear never quite goes away, although it does diminish over time.
Next post: Second (and third) opinions.