Part 1: The Emotional Pain of Cancer

By Debbie Kerr

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Before Diagnosis
The emotional pain associated with cancer starts long before an actual cancer diagnosis. Just hearing the ‘C’ word can trigger fear. I can attest to this. I remember (even six years later) the first time I heard a receptionist answer my call with “Odette Cancer Centre”.  Hearing the word ‘cancer’ made the possibility of that diagnosis even more real to me. It was unnerving. I sat at my desk and the tears started, seemingly out of nowhere.

But fear wasn’t the only pain. Many cancer patients (me included) find waiting for everything to be painful. You wait for an appointment to see a doctor. You wait for dates when you will have tests done. You wait to see your doctor again so that you can get the test results. Depending on those results, you may be sent for more tests. You will, once again, wait for appointments and results. To those involved, it feels like some kind of mental and emotional torture. This period of limbo (not knowing whether or not I had cancer) was my biggest stressor. I just wanted answers; even if the answers I got were not what I wanted to hear.

Diagnosis and Treatment Plan
While some people talk about the shock of a cancer diagnosis, I don’t even know the date when I was diagnosed. In my heart I already knew I had cancer. In fact, I would have been more shocked to find out that didn’t.

Although not the result I wanted, I was just glad to have an answer so that I knew what I was dealing with. The diagnosis meant the uncertainty leading up to the diagnosis was gone and I could now start taking steps to get rid of the cancer in my body. That’s not to say that there wasn’t uncertainty during each phase of my treatments, but some of the uncertainty was now gone. I felt even better when I had a treatment plan.

My treatment plan involved surgery, chemotherapy, radiation, and then long-term medication to help keep the cancer from returning. Not everyone has all treatments. Some patients have additional treatments, while others have their treatments in a different order. Your treatment plan is unique to you and your circumstances, and so are your emotional responses.  

Emotional Rollercoaster
A cancer diagnosis results in a range of emotions that can seem to change at will. You can be in the middle of an ordinary conversation and then suddenly have tears falling down your cheeks. The littlest thing can make you angry. You may wonder what’s wrong with you when your best friend gets some good news and, while you’re initially happy for her, a small part of you envies her ‘normal’ life. You may ask yourself, “Why me?”

As you try to work your way through these emotions, you may want to be with someone or, like Deban, you may need to be alone. “I physically could not leave my house. I was not brave. I felt great emotional pain and terrible fear. I did not go online, did not research anything. I did not want to know anything about the cancer. I just wanted to cocoon.”

Although you would not normally use the word ‘cocoon’ as a verb, it is a great way to describe the process of shutting yourself off from the rest of the world to deal with your emotions until you go back into the world to face your new reality.

On the bright side, you will not always be at the same level of emotional turmoil. The intensity of your emotions will change. Like a roller coaster ride, some parts of the ride are low-key, while other parts are intense. Ann, another cancer patient, describes her experience in a similar way. “I found the emotional pain evolved and came and went in waves, depending on what stage I was in. At time of diagnosis, my emotional pain was almost unbearable and was anchored in fear and anger.” 

Believe it or not, laughter can be part of the cancer experience. It was a pleasant surprise for me. Once I got used to having cancer, I found reasons to laugh. My most common sources were wigs and fake boobs (foobs). There's so much that can go wrong. I know from experience.
      
Don’t worry. There are no right or wrong reactions to cancer. Everyone responds differently. You can’t do cancer wrong.

Reactions from Friends and Family
As friends and family hear the news, some will know what to say and do, but many won’t. Instead they will either say nothing or say something that may hurt or anger you. Some people’s reactions may surprise you. Those people you thought would be your support may abandon you while others will surprise you by becoming your greatest allies. You will discover that no one truly understands what you’re going through except those people who have been through it. You may find those people in person or online.

The stress of a cancer diagnosis can either bring a family closer together or tear them apart. There’s the stress of not knowing how everything will turn out. There’s the financial impact of cancer and its treatments. There’s the chaos that takes everything that was once normal and turns it on end. There’s the emotions that ebb and flow. In one day you may go from laughing to crying to getting angry at the world for what you’re going through. Your family may be going through the same range of emotions. It’s the perfect storm for conflict and misunderstandings. It can also be a commonality that helps you to appreciate what the other person is going through. It can bring you to a closer together.

The Internet
If you want to look for support online, you may want to look for breast cancer groups on Facebook or forums like cancerconnection.ca. These people know what you’re going through and can provide the answers and support you need. 
      
I discovered these groups long after my cancer treatments were done. Before I was even given a cancer diagnosis, I made the mistake of going on the internet to look up information. Ultimately, I found myself overwhelmed by the volume and inconsistency of information. It would have been better if my doctor or nurse navigator had given me a list of useful sites where I could find the information I needed and know that the content was accurate. For some women, doing a search on the internet resulted in enough fear that they never went on the internet during the rest of their cancer journey. I was one of those people. I was amazed at what was available to me online once I worked up the courage to go online again. 

Fear of Recurrence
Cancer never truly leaves your life once you’ve had a cancer diagnosis. Even after the treatments end, the emotional element continues. Every time you have a health issue, you start to think your cancer has returned. My back always bothers me so I wonder how I will know if my cancer comes back in my bones. This uncertainty even impacts how you refer to yourself after your treatments end.  Are you a survivor? It’s the term used, but I only think of myself as someone who survived the cancer treatments. In my mind, I’m not a cancer survivor until the day I die from something other than cancer. 

You may struggle with what to tell people when they ask about your cancer. Do you tell them you are cancer-free? Do you tell them that you’re in remission? Do you say that there’s no evidence of disease (NED)? There isn’t one right answer. It’s a personal choice. And even though I lean towards NED, I’ve never said it to anyone. I just stick with saying that I had cancer. It’s what makes the most sense to the people around me. It also allows me to feel like I accomplished something. Saying I had cancer feels a lot better than saying I have cancer. 

Post-Traumatic Stress Disorder (PTSD)
Just as the emotional element of cancer starts even before a cancer diagnosis, the roller coaster ride continues even after active treatment ends. The simplest of things can trigger a cancer flashback. For me, it was sitting in a green recliner is a hospital waiting area. Suddenly I started feeling anxious. I started to cry and I felt panicky. I was anxious and wondered if I was going to have to move to another room to take me out the setting that had triggered my flashback. Considering my last chemo treatment was six years earlier, I was surprised by the strength of my reaction. I was calm during my cancer treatments, so I was surprised at this response, especially so many years later.

Your Emotional Rescue
When I asked current and previous cancer patients for their stories about the pain associated with cancer, nearly everyone talked about the emotional pain. As Ann says, “I heard that a cancer diagnosis is 10% physical and 90% emotional or psychological – too true.”

Since there are so many emotional elements to cancer, here are some tips that may help you with your own rollercoaster ride:

• Don’t let the fear of the unknown overwhelm you. Focus on what you know and tell yourself that everything will be okay until proven otherwise. This was my saying. It helped me to stay in the here and now; it allowed me to deal with one thing at a time.
• Find the right balance between letting your emotions out and dealing with them and letting your emotions totally run your life because you don’t take the time to deal with them. As Eddy-Joe says, “You can take yourself to some very dark places with uncontrolled emotions.”
• Tell people what they can do to support you. If you just want someone to sit with you for a while without saying anything, tell someone that’s what you want. If you need a hug, ask for a hug. If you want to talk aloud to help you process and deal with your emotions, tell someone that you are going to talk and that you don’t expect them to try and make you feel better. Their only job is to listen.
• Ask for professional help if you need it. Being emotional is not a sign of weakness.  There are women who turn to their doctors for medication. There are also support people at various cancer centres. Deban recognized she needed help. “Anti-anxiety medication, prescribed by a psychiatrist, helped with my fear, rational or not. I still needed to function. I tried to learn how to breathe without hyperventilating.”
• Ask your doctor, nurse navigator, or cancer centre for a list of websites you can safely go to for information. Also ask for information about support groups (both online and in person).
• Recognize that you will have good days and bad days. Accept them for what they are. There are no wrong emotions. Cancer is a very personal disease but you have to recognize at what point a particular emotion is doing more harm than good.
• Remember that laughter can be the best medicine.  

Part 2: Cancer and Surgical Pain, What a Drain
Part 3: Chemo Pain…cancer’s untold story
Part 4: Radiation…cancer’s sunburn
Part 5: Cancer, the gift that keeps on giving
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