There are many times in life where people are just trying to get through the day. I am not up for attempting to change the world or my little part of it when I have one of these days. On other days I can be quite formidable. It was on one of these more rebellious days I heard a good old Johnny Cash classic come across the radio – Walk the Line. Do we do what Johnny Cash advises in this song and stay in middle ground area to play it safe? There are advantages to not creating a fuss and staying socially accepted. Respecting boundaries is huge with me. I am not looking to cross any clear boundaries that have been made or have mine crossed. It’s tough for me to hold others to some I have made, but I have gotten better. I can say NO and mean it. Boundaries are meant to mark the limits of an area, to keep us safe, to enable us to play by the same rules.
But there are times you don’t get the notice you deserve if you walk the line all the time. Being a cancer patient is no time to walk the line. Cancer patients must dare to cross it. We must make a fuss because it’s our health that is on the line. Cross it, blur it, erase it, and boldly step into territory where you ask for what you need. New limits may need to be marked and a new set of rules written. These are a few of the times when I think it’s appropriate to advocate for yourself and dare to cross the line:
Cross the line when someone tries to make you feel “less than” because you have cancer, or that you’ve done something wrong because of it, or that if you just did this or that it would go away, or that you aren’t thinking clearly, or that you just aren’t good enough. None of these things are true. There are many pesky questions. These comments are a reflection of the person giving them. Just because I’m thinking about something differently doesn’t mean I’m not thinking about it clearly. It’s insulting to infer my mind is affected because I’m making decisions that don’t jive with decisions someone else would like me to make. I won’t be gaslighted. I believe some comments that fall into this category are made in an attempt to feign that the person speaking them cares or to somehow make themselves look good. MAYBE they are sincerely trying to be helpful, but I don’t get it. You can’t lift yourself up by putting someone else down. Call these folks out while you’re at it. Possible responses may include:
- Why are you asking?
- Where did you hear that?
- That’s not true. (I’m not interested in debating it.)
- I disagree.
- Let me answer your question as it pertains to me.
- I choose not to discuss my health.
- Choose more of an impolite response of your own choosing.
Cross the line when you feel your treatment plan may not be giving you its best. Patients never fail treatments. Treatments fail them. It’s more than okay to ask questions. Secondary cancer does not equate to substandard or second-rate care. We are not any less deserving than early-stage patients. Treatments need to be given in the spirit of the best possible outcomes as they are for everyone else. Sadness, pain, and suffering are all real feelings that don’t discriminate based on stage or prognosis. We should not have to ask for compassionate care or if something more effective may be available, but if these things aren’t there, cross the line. Keep asking if new treatments are available. You might not know if you don’t ask. Doctors may not know you’re interested in other options if you don’t speak up. Doctors may need nudging. Lots of nudging.
Cross the line if you do or don’t want to do something. This could be socially or medically, especially if you have questions about plans directly involving you. Remember it’s okay to change your mind. Everyone can change their mind and it doesn’t mean things have taken a turn for the worse. Everyone’s interests change and evolve over time. You can have energy one moment and none the next. You have a right to talk more about your treatment if concerns and questions have cropped up after agreeing to or starting something new. You are not being difficult. You are being an informed and empowered patient, a good patient in my opinion.
Cross the line when someone talks about someone who has died from cancer and then tacks on in a hushed voice that he or she was Stage IV. I mean no disrespect – but withstanding complications of surgeries or infections – of course they were Stage IV. It isn’t exactly a newsflash. I know I’m sensitive to those words. It always strikes me as somewhat insensitive and unkind to whoever died. Why does it need to a qualified by a stage label? Someone still died. Yes, life changes with a metastatic cancer diagnosis. I feel the time has passed, long passed, for people to whisper the words “Stage IV” after someone’s name. I’d feel better if they expressed more anger and outrage, asking instead WHY or HOW in this day and age hasn’t more research been directed to lower the number of deaths from metastatic breast cancer. THE NUMBER OF DEATHS HAS NOT GONE DOWN SINCE 1995!! I haven’t figured out a way to effectively address this growing annoyance I have with the whispers. Perhaps my first step is to find out why it matters to them to include the information of a Stage IV label with a lowered voice before I go on the defensive. It’s possible I’m misinterpreting their intent based upon the lens from which I hear it. I could then go on to explain how I’m living strong with a Stage V mindset.
I appreciate that people care about me. Most of the people in my life are not intrusive. Those folks get the boot. I have reached a point though that when I encounter someone who is either speaking about me or for me by way of assumptions or falsehoods that I won’t let it pass and be quiet. Perceptions about secondary cancer must keep changing. I felt such a wave of relief and support from a friend I had lunch with a month ago who listened with empathy as I shared how I felt about comments I heard about those with Stage IV. She said she knew LOTS of people who were living years past the five-year survival mark. She should know people like me because she’s a director of development with ties to events and donors at the hospital where I receive treatment. I know there are more people like me who are living by example and changing the perceptions, definitions, and conversations around metastatic cancer.
I am done walking the line.
Words are powerful. They entertain, inform, and persuade. Whether written or spoken, words communicate. Something.
Writing is a way to self-reflect, express my beliefs, and share my voice with others. Tara Parker-Pope wrote an article in The New York Times titled Writing Your Way to Happiness. One path to happiness is through writing a personal story.
The goal is to create an “optimistic cycle that reinforces itself.” She explains that although our inner voice is choosing the words as we write, we can go back and edit our story. For example, I may choose to write a story about a session with my trainer, or planting morning glory seeds, or being kept awake by a thunderstorm. Rewriting it can bring about behavioral changes, improve happiness, and lead to better health.
Bringing about behavioral changes, improving happiness, and working toward better health are all important to me as someone trying to live well with cancer. I’ve written quite a bit about the progress I’ve made with my trainer. Through the rewriting process, I discovered how negative self-talk hinders me in my training sessions and then I made some changes. Maybe I’ll write a story about morning glories and understand why they make me so happy. Writing about sleepless nights during bad weather may motivate me to sleep in my basement where I can’t hear anything which in turn makes me feel a lot better the next day.
Stories lead us to better understand ourselves.
For anyone interested in journaling specifically about health, consider the following prompts:
- What changes do I want to make in my behavior? Why do I want these changes? What is it I am hoping to gain? What is my plan? How can I take the first step?
- What things make me happy from the inside out?
- What small goals do I have that can lead to better health?
Or write a story about morning glories or something you think is entirely irrelevant to your health. After it’s written, you can look for possible connections that you didn’t see at first.
Timothy Wilson has researched writing as a way to change core narratives successfully and calls the process “story-editing.” His background is in social psychology and focuses on self-knowledge and behavior. I recommend one of his books, Redirect: Changing the Stories We Live By, for further reading if interested. He sees writing as a pathway to bring about change. A writer writes for about twenty minutes a night for three to four nights, and each night goes back to edit the narrative. The outcome is that a more honest narrative is written through reflection on consecutive nights.
It’s an enlightening process.
Try it out: Think of a recent situation where you felt some anger.
Anger is a wonderful feeling to use for this exercise because you have automatic conflict.
On the first night, just write a very brief account to get the bare bones of the event written. It’s nothing fancy. Focus on your feelings another night and how to convey those through descriptions or specific actions. Add dialogue another night. Or just see where the writing takes you each night. You really don’t need a plan if you don’t want one. Just write.
Sometimes I wind up with an entirely different piece of writing than when I started.
I see writing your way to happiness as much more of a “revisioning” of a core narrative than editing, especially where endings are concerned. Revising involves bigger changes. Some parts stay, some go. Ideas are expanded. You try things out and see if they work. In Wilson’s book, one of his exercises is called “The Best Possible Selves.” He asks a writer to imagine his or her life twenty years from now and write about how everything has gone as well as it possibly could. Details about how the events of things happened are to be included, as well as meaning, hope, and purpose. Again, writing for twenty minutes a night for three to four nights is part of the directions. It gives your subconscious time to ruminate and work through whatever needs more thought so you can make more progress the following night. I think this is the same reason you are asked to write in the evening.
The part about including details about how future events happened is important. Being specific helps you form a picture in your mind of what you want. It makes a picture with words. Adding meaning, hope, and purpose also makes your vision super clear. Clarity in meaning and purpose makes what you want more probable.
I can tell you in my version I am completely healthy, retired, and enjoying every day doing the things I love. Writing sets a powerful intention more than thoughts or spoken words. It involves being really clear on what you want and organizing your words in the best possible way to express your specific intentions. I found that reading what I wrote out loud to someone after I completed the exercise also very revealing because my soul really responded to the core beliefs that I hold the dearest about my future as I put it all out there to the universe. Writing your way to happiness is one positive affirmation after another.
Writing something down tells your brain that your ideas, thoughts, and goals are important.
Writing engages us with our thoughts and helps us process emotions. It makes those thoughts concrete. It prepares those thoughts for becoming actions. Writing really serves as a blueprint or map for all that unchartered emotional and mental territory. Regular journal writing about feelings or uncomfortable events can help lower anxiety and help a person sleep better.
In the world of living well with cancer, I have both read and written. I am still learning how to write what I know and believe about cancer.
This is how I break down words about cancer:
- Medical journals/scientific articles on cancer findings/advancements. I’ve avoided reading many of these articles and journals as they aren’t written for patients. Once it was suggested I read one per month, but I found them confusing. Or upsetting. Or not applicable.
- Test results also can be confusing (or upsetting, or have unclear applications), however, these are much more important to understand because they affect the patient intimately.
- A personal health journal to document the factual side of a cancer diagnosis. Surgeries, treatments, radiation, medications, side effects, tests, appointments, and schedules fall into this category.
- Diaries/journal writing from survivors, thrivers, lifers, however a person best identifies. There are narratives filled with tips. Some write about living with cancer. Some write about beating cancer. Some write about dying from cancer.
- Fictional stories where characters have cancer. They read differently than biographical accounts but contain many of the same sentiments of life and/or death. Some hit the mark – others do not.
- Advocacy writing that argues for better research and treatments for later stage cancer patients. In my opinion, the world needs more of this kind of writing. People focus on the wrong drivers of “awareness” or accuse women and men of being “negative” if they write about the hard, scary, and ugly parts of cancer. Change will come through advocacy. Current widespread attitudes need to be challenged.
- Celebrities sharing their “I never let cancer get the best of me” stories. How courageous . . . and . . . inspiring? I think it’s just ducky if they never experienced one moment of fear, doubt, or anger. If you can’t tell, I don’t believe them. I would be more impressed if they used their platform in the public eye (that is much more far-reaching than mine) to put a mark on metastatic breast cancer that can’t be ignored or dismissed. It makes me sad. I feel like they don’t understand. Maybe they can wear pink and that will make it all better.
- Private writing reflecting on some of the questions above or your own.
- A few write blogs. 😉
Am I missing any?
Writing forces a person to process a pesky thought that has been floating about unrecognized or undefined. Once on paper (or the computer), it lets you see what you were thinking or feeling. If it isn’t quite right, you revise until your inner voice has spoken.
I end this post how I began it: Words are powerful. They entertain, inform, and persuade. Whether written or spoken, words communicate. Something.
Sharing your story is one way to heal. Shared stories create healing both for the storyteller and reader. I wrote about my first kayaking experience in 2013 after I returned home from spending time at a breast cancer recovery retreat on Madeline Island. Madeline Island is one of the Apostle Islands in Lake Superior.
It was a cold and rainy day in July that many would want to forget. It became a story I wanted to share because of the healing properties of being on the water. The experience taught me I could do anything and be stronger because of the experience.
I was delighted when I discovered the piece had been passed on to a regional magazine and published. Well, mostly delighted. I would have appreciated it even more had the intermediary party involved told me it was in print.
At any rate, it was shared, and it may have contributed in some small way to someone else’s healing that read it. I hope by sharing this personal narrative again that it may be helpful to someone.
Kayaking: A Metaphor for Peace and Healing
Breast cancer survivors don’t understand the word no. We’ve heard it too many times. The cold gray sky said to stay inside. A steady mist fell. It definitely was not the warm, sunny, end of July day everyone expected while at our breast cancer recovery retreat. It was, however, our kayaking day on Lake Superior. The weather would not stop us – instead it would make us stronger. Everyone agreed to go. Each of us had faced, or still faced in my case, cancer and screamed NO at it with all our might. A little rain would not interfere with our plans.
Kayaking was a structured activity and part of our learning at the retreat. To be part of nature. To do something physical. To do something spiritual. To listen to the water and to listen to ourselves. Kayaking encompassed all these and more.
Lake Superior is a place of story and spirit, along with the islands that make up the Apostle Islands. Our guide took us to a beautiful inlet on Madeline Island that eventually led out to the much larger lake. The tranquility was beautiful even on a rainy cold day. The inlet protected us from the strong wind and rocking waves. Each of us was about to write more of our own personal cancer story upon the Lake Superior water.
A steady stillness surrounds you when you’re in your kayak and on the water. The oar slices through the water silently and your kayak soundlessly skims across the top. You are submerged but not submerged – on the surface but not on the surface. A kayak puts you in the moment more than any other activity I can imagine.
There is a peaceful oneness with the water. The rhythm of paddling along with the inhaling and exhaling of all that fresh air creates a meditative state.
Kayaking changes perspective. You see everything from the middle, not from the shore. You are almost eye level with the water. You have control over where your kayak ventures to and at what pace. There is empowerment in a kayak.
Kayaking heals. Cancer, surgeries, treatments, and medications take a toll on bodies and spirits. Fear creeps in. It settles in and eats away at your hope. Yet, water has its own purification and renewal powers. Water replaces fear with hope and life.
Water trickled down from the oar I held and onto my legs. The mist coming down, sideways, from every direction cleansed spirits. Kayaking connected the healing aspects of physical, emotional, and spiritual together. Every stroke made me feel more powerful and farther away from cancer.
When there is a storm, kayakers are supposed to raft up . . . to come together and hold on to the ropes of all the kayaks and ride out the storm. You don’t try to paddle anywhere. You just stay together, all in a tight bunch. The point is to make the group look bigger for large boats to see you and to rescue you.
However, there’s another point, too. In life’s struggles, don’t you want to raft up so you can help one another through the storms? You do. The concrete becomes another part of the metaphor.
After about an hour, our group came together to assess our progress and make decisions. One kayak was filling up with water and in constant need of the hand pump. The mist had changed into rain. You could see by the wind moving it slantways. We headed back in silence to reflect on our experience.
Kayaking proved to me once again I could conquer my fears. Not just conquer, but excel, in this new experience. Every inch of me was soaked, yet I felt fantastic! I was stronger both inside and out.
Once out of the water I started to shiver. Yet, I knew this was not the toughest part of my retreat. The toughest part for me was earlier that morning as I took an emotional risk when I shared scary parts of my cancer story with my fellow retreatants. Emotional risks are scary.
I will paddle on in the warmth and sunshine.
I may paddle again in the cold and rain.
I can do anything.
And I will.