Cancer Speak: Not OK, Somewhat OK, and More than OK

By Debbie Kerr

Just as cancer and the reactions to it are different for everyone, the words that irritate you during your cancer experience may be totally acceptable to someone else. The following are my lists of words and phrases that were not okay, somewhat okay, and more than okay.

Not Okay

• Relax – If you’ve ever been told to relax, did you find that, if anything, it made you a little more uptight? Did the person who told you to relax see you tense up so they told you to relax again? It can be a vicious cycle. Cancer is a stressful experience and it’s up to you, as the patient, to find your own method of relaxing. Personally, the large quantity of Benadryl  I received during chemo also helped me to relax, even when I wanted to stay awake.  
• Just – The word ‘just’ combined with any word is an injustice. It’s ‘just’ breast cancer. It’s ‘just’ stage 1. It’s ‘just’ three more treatments. It’s ‘just’ me being emotional. The word ‘just’ minimizes the importance of events, emotions, and people. You shouldn’t minimize what you feeling and others should not try to make you feel better by using the word ‘just’ as a form of encouragement. For example, while other forms of cancers may be perceived to be more difficult to treat, no one wants any kind of cancer. The anger, fear, and frustration all come with the territory and there is nothing ‘just’ about it. 
• It’ll be okay. – No one knows whether this statement will be true; however, you have hope and faith that everything will be okay or there’s no point in continuing treatment.  I’m okay with telling myself that things will be okay, I don’t want someone else to tell me. 
• I know how you feel.  – Until someone has had cancer they can’t possibly know how you feel and, even then, what one cancer patient feels will be quite different than what another patient feels.
• Shortly or Soon – These words are relative. What is ‘soon’ for one person is an eternity for someone else. When I was trying to book appointments to get my lungs and heart tested, I discovered that some telephone recordings included misleading information. For example, I heard the following recording for nearly an hour, “Your call is important to us. Please stay on the line and someone will be with you shortly.”  While I demonstrated that the call was important to me by staying on hold for nearly an hour (with no music), I failed to see evidence that the call was important to ‘us’.  I also felt like the use of ‘shortly’ was a blatant lie and used to lull me into a false sense that something would be happening soon if I just waited a little longer. When I ultimately got a recording to leave a message, I followed orders and left a message that expressed my ‘concerns’ about how their phone system worked. The only ‘F’ word associated with my message was ‘feedback’.  
•  At least it’s over.  – Many people who have not had cancer don’t understand that it’s never totally over. While active treatments like surgery, chemo and radiation may end, the journey itself doesn’t. There can be long-term results to those active treatments. There may still be medications to take in an effort to reduce the chances of the cancer coming back. The side effects from the medication can be chronic. There can be the continued fear that every symptom (bone pain, trouble breathing, headaches) can mean the cancer has returned and possibly spread to another part of your body.  You have to decide what you can do to live your life to the fullest instead of letting fear be your life.

Somewhat Okay

• Chemo Suite – Every two weeks I went to the ‘Chemo Suite’. The word ‘suite’ was definitely a misnomer. The suite was one large room with lots of people and two bathrooms. Throw in the fact that everyone was being filled with fluids and you had the potential for pushing and shoving to get to the bathroom first. In fact, with chemo, the pushing and shoving is usually you, as the cancer patient, moving the IV stand with you as you manoeuvre to the bathroom. 
• Recovery Room – Until June 19th, I believed the recovery room was where you went after surgery to recover from the anaesthetic. This is what happened for all my previous surgeries. Unfortunately, with my last surgery, the Recovery Room didn’t work for me.  Now I can say that I’ve experienced the adrenaline rush of complications after I had my salpingo-oophorectomy (also known as having my ovaries and Fallopian tubes removed). Ironically, the surgery I was dreading in my last blog post went off without a hitch; instead, it was recovering from my anaesthetic where I missed the mark (well at least the correct room to recover in). Instead, I caused a bit of excitement and waited until after I was wheeled to the Emergency Room to start my recovery process, which included the ability to breathe. While the room was wrong, the final result was what truly mattered. I came home and it was like nothing unusual had happened. I had no pain and I was able to do what I needed to do. We as cancer patients can deal with the many bumps in our journey as long as we reach our destination of having no evidence of disease (NED)/cancer-free. 
• Specialists – Sometimes ‘specialists’ don’t recognize that since they specialize in one field they can’t possibly know all things about everything. For example, during my chemo treatments I expressed a concern about how treatments were impacting my epilepsy.  When I asked the medical oncologist to talk to my neurologist she refused. She told me my neurologist didn’t know anything about cancer and that she had a team of experts at her disposal who knew all about medications. Unfortunately, I couldn’t make her see that she didn’t know anything about the intricacies of how my brain works.  While no one completely understands my thought processes (me included), my neurologist would be the best one to help come up with ideas to help lessen the impact of the chemo on my epilepsy. This consultation never happened. Ironically, my surgeon (non-ist medical professional) reached out to my neurologist without me even asking. My conclusion was that anyone with ‘ist’ in their title does not willing admit that they don’t know everything. I had the urge to say, “Why don’t you just get over ‘ist’?” 

More than Okay

• No words or saying “I don’t know what to say.” – Sometimes the right words are the absence of words. Sitting in silence with someone can be just as effective as saying words that are hollow or a source of irritation.
• I can’t possibly know how you feel but I will do everything I can to support you. – It’s even better when the person follows through.  When this happens, and I was lucky that it did for me, there is no greater gift.
• Waiting is the worst. – There is not a truer statement when it comes to the diagnosis process and getting the pathology report. It’s not always good to have an imagination when it comes to waiting and no one likes being in limbo. The longer you wait the more time you have to think of what-if scenarios. When I was early in my cancer journey and I talked to other cancer patients, this was the statement I heard the most frequently.
• I felt better when I knew for sure what I was dealing with. – While no one likes to be told they have cancer, once I had a plan of action and direction, I felt much better than the chaos of not knowing.
• I love you. – After surgery, during chemo and/or radiation, it’s always nice to know that you’re loved regardless of your appearance, your potential outbursts, and lack of physical stamina. It’s always nice to be loved for who you are at any given time.

What did and didn’t work for you?