Cancer Communication Advice – guest post

Sometimes you find just some good straightforward advice. Our Canadian blogger and cervical cancer survivor writes at the journey | Life as I know it!.

Often, as I sit in the examining room, anxiously waiting for my oncologist to join me, I study the walls, and I wonder how many conversations they have silently participated in. If those walls could talk, what stories would they choose to share? After all, they have heard and seen it all – tears of anger, worry, fear and joy. Expressions of happiness, sadness, anxiety, stress. Numbness, fatigue, rage and relief. Raw courage and blatant confusion! They have heard about every possible side effect from treatment, and every argument regarding the potential benefits of both conventional and alternative medicines. And countless times they have listened to a patient ask, “How will I tell my family?” Or issue the plea, “Please don’t tell my family! I don’t want them to worry.”

The examining room walls have functioned as a support for those patients who bravely enter the room unescorted by a loved one, providing an armless embrace and bearing silent witness to the news that is being delivered. They are non-judgemental and they are devoid of emotion.

As a patient, family member and friend, I am often challenged with how much information I want to share with those people who I am closest to. When I was first diagnosed, I was so confused and frightened that I only wanted my siblings to know about my illness. I asked that they not share the information with our Mom. It was my older sister who sagely advised me, “You have to tell her. She has a right to know. And you have to talk about this with others. It will help you!”

That was probably the best advice that I have ever been given, though I must admit, depending on who I am talking to, I still screen a lot of information. Cancer continues to be a word that, because of its unpredictability, strikes fear into the hearts of mice and men. For patients, each new process that we go through is foreign to us, and as we listen to the doctor describe what is necessary to save our lives, we become immersed in panic. We have all heard the countless horror stories about radiation burns and chemo nausea. We have all been told by well-intentioned friends or family, of the hordes of people who have died as a result of our particular cancer! And we all assume that our families have been spared those same nightmare stories. It is easy to understand why we to try to hide our fears from our families. We don’t want anyone else to experience the emotional roller coaster that we are on.

In terms of non-family members, again, I initially did not want anyone to know about my cancer. If truth be told, one of my greatest fears was that I would have judgements placed upon me. And that does happen – I have been asked, “Were you a smoker?” “Did you not get regular check-ups?” “How could you not know you were ill?” I learned to take those questions for what they are – fear on the part of the speaker. After all, if I, who lived a pretty healthy lifestyle could get cancer, what did that mean for them? Though it took some time, and a lot of work, I learned to detach my emotions from their questions, and to speak casually and honestly about my disease.

For patients, cancer is always front and center in our minds. I have given up trying to block it – thoughts, fears and worries will inevitably force me to acknowledge them, so I am better off to do so in the moment. But I am not always strong enough to bear the burden of them alone. I sometimes need help, particularly in that moment when I am most panicked, yet trying to present a rosy picture. It is then that I remember that I am connected to family by more than DNA – they have a personal connection, and they are able to read my emotions. They do not need to be told that something is seriously bothering me. Withholding information from them, results in their assuming the worst, magnifying the reality in their own minds. Sharing my concerns relieves the burden of weight, and it is freeing for all parties. I have learned that people can handle the truth. And they want to be there for us. They want to be those walls, strong enough for us to lean on when we are weak. We give the people in our lives a gift by making them a part of our medical teams.

But I guess that I am a needy kind of girl! In addition to talking to my family and friends, I needed to find another effective outlet for expressing and exterminating the negative emotions. I needed a wall that I could punch, and I opted not to use a family member for that purpose! (They are all grateful to me for my decision!) One solution that I found, which proved to be very effective for me, is blogging. I can vent and rage to a computer screen which, like the walls, is a silent companion, standing by me day and night. I am fortunate that I have the ability to block out the idea that people actually read my blog, giving me total freedom to express myself in an open and honest way. It is therapy in a keyboard! And the knowledge that most of my family members do not read the blog alleviates worries that my writing will magnify their concerns for me!

I encourage anyone who is going through a cancer diagnosis to find an outlet for communicating that works best for you. Join a support group, or contact the Canadian Cancer Society to be matched with a peer support (someone who has survived your type of cancer). If you are still not ready to talk to another person about your fears, seek out and read credible books on the topic and keep a journal of your thoughts and feelings. Take up blogging – you will be amazed at how supportive this community is! From any of these, you will learn some excellent strategies that will help you to share with your loved ones. It is a freeing experience when you can speak openly without fear of your words alarming the listener. And we have enough to deal with without having to worry about others!

And for loved ones of the patient, my best advice is that you be honest with the patient. If you find their emotions too uncomfortable to listen to, you need to be open about that. Just as you can read the patients emotional state, so too the patient can read yours. Be real – if you are sad, say so. If you are angry, share that. Express your concerns and your joys (doctors notes are great for these!). Be encouraging, but be honest! You will open all kinds of doors to communication that way.

~ the journey | Life as I know it!

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About Dennis Pyritz

Dennis W. Pyritz, RN, BA, BSN, has been a cancer nurse since 1987 and a cancer and bone marrow transplant survivor since 2004. In December 2001 he was diagnosed with t-cell prolymphocytic leukemia (T-PLL), a rare aggressive form of chronic lymphocytic leukemia (CLL). Dennis was treated with the then new monoclonal antibody, alemtuzumab (Campath) as this disease has a median survival of 7.5 months. He achieved a 26 month remission but relapsed in February 2004. He was retreated with Campath and went into a second remission. In August 2004 he underwent an allogeneic peripheral blood stem cell transplant with his brother, Mark, as donor. Dennis has remained in remission since - a near miracle. Throughout his career as cancer nurse and patient, Dennis has had the opportunity to speal to both lay and professional groups. Dennis has spoken on cancer topics and survival issues across the country as well as in the United Kingdom, Norway, Austria, Portugal, Honduras, Panama, Guatemala, Trinidad, United Arab Emirates, Jordan, Cyrpus, Israel, and India.

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