Write What You Know

To write what you know is one of the biggest nuggets of writing advice that comes from authors. It doesn’t matter if the writer is published or unpublished, well-known or obscure, or a beginner or someone highly established. Writing what you know allows the writer to draw upon personal events where details can appear more naturally and make the writing feel more authentic. This advice applies to so much more than just events. We feel a wide spectrum of emotions ranging from euphoric to gut wrenching as we live through these events. Writers know emotions and must write those emotions. I believe this is why we get hooked with a story we feel has nothing to do with our lives. It isn’t the mob lifestyle or unspeakable events from Nazi Germany during WWII that pulls readers into a story. We identify with characters who feel what we feel.

As a teacher teaching second graders, this often meant I read lots of informative pieces on playing with pets, narratives of a summer trip where a flight was as exciting as the destination, and realistic fiction stories about camping, sports, or school. Most kids have fairly similar experiences coming from the same geographic area and being so young. The joy of writing, experiencing success, and becoming more independent writers were always wide-ranging goals in any piece. I wanted kids to write what they knew. Writing about what they didn’t know was a blank page.

It’s the same with me.

As a reader, I look to sources who are experts. Mitch Albom. Sue Monk Kidd. Brené Brown. I go back to favorite authors as well as whomever I’m reading at the moment to reread passages and examine what made them effective. I read like a writer. I love words and storytelling. Even when reading fiction, I understand authors research their topics to make stories credible and realistic. Many factors make writing come alive.

I ask myself, as a writer, what do I know?

Cancer

Unfortunately, I know too much.

My mother had uterine cancer that was successfully removed through surgery. It gave me an early example that disease would always be caught early and without much inconvenience. I recall a couple of years later telling friends she had been diagnosed with breast cancer and that it was going to be harder but that she’d be okay. It was harder. Mom had a partial mastectomy followed by chemotherapy and radiation. I became an expert on her health and breast cancer knowledge. Information was power and I wanted to understand all of it. All was good for years. Golden years.

And then it wasn’t. She wasn’t.

Looking back, I’m not sure if she cared for all my pearls of wisdom that I’d learned. I likely was annoying. It’s very different when the shoe is on the other foot and you have been diagnosed rather than a family member. I want my information but have a bit of an inner attitude when someone who isn’t an authority drops false information at my feet.

My metastatic breast cancer diagnosis came about a month or two later on the heels of hers.

There is a lot I could write about from my experiences with cancer with my mom and from my own. I haven’t mined memories of it with my mom because of the pain. I don’t feel as much pain with my own. I’ve found it to be cathartic and a home to give voice to the pain and whatever other truths need speaking.

Others write from a very factual perspective of their experience. Expert background experience support their writing. They write from legal, medical, patient experience, and personal experience perspectives. Others share raw emotions and reactions to what’s happening in their lives through poems and deeply personal reflections. I tend to write about cancer from the lens of what happens to me and my thoughts about it. Factual information gets sprinkled here and there as it impacts my chosen subject or theme. We’re all invited to sit a while with these perspectives and stories of shared experiences.

Write what you know. I know cancer.

Feelings

Emotions were mentioned at the top of the piece. We all experience universal feelings. Fear. Despair. Loneliness. Humor. Love. Hope. Spirit. A small event of forgetting music at a piano recital can pack some huge emotions of not feeling supported, being humiliated, and hearing your parents lie to you about your achievement. It’s still a tough memory for me. This story can be more powerful than a story that retells a death in the family that is void of emotions. Emotions and feelings spill over in writing because the goal is for someone else to understand and connect with what was written. When I think of a common quality that’s at the core of favorite books, or dare I say even things I write, is the desire to be understood. We crave that as writers and readers.

Feelings are our emotional truths.

Stories of good times on Grandma’s farm help me preserve memories that I want to remember. Her home is a strong example of how emotions create the writing. I took a photo of her farm from out in the field one winter. My grandma, dad, and mom were all warm inside visiting after our Sunday meal. I wrote about how the people I loved were in the photo even though I couldn’t see them as part of an assignment in college. Later, I wrote a poem about it. Years later, this house is in disarray. Raccoons have taken over and hauntingly walk on keys of the damaged piano in the night. A cousin’s son and his wife moved onto the property into the more modern home across the drive when they married. They see the old house as dilapidated and scary (I do too) but more of my emotions are grounded in Sunday visits, time with Grandma, and playing with the farm cats. I sent my cousin’s son a copy of the poem so he could see the abandoned house as a home for a few brief moments.

Write what you know. I know my feelings.

Experiences

Small experiences can have big impacts. I remember winning a cake at a cake walk when I was about six and it was the first thing I ever won. It was a carrot cake with nuts. I was allergic and unable to eat it, but I had won something and felt special. Memories playing at the playground across the street fill many childhood memories. Camping in Girl Scouts. Family vacations. Being bullied. Never knowing if you really fit in. I remember holding my dad’s hand in the ICU and watching it shake trying to find mine after one of his heart surgeries. I have entertaining experiences throwing dinner parties, both fun and disastrous. News of a good scan. Not so good news. There are arguments and celebrations. Little events make a life. Although short, this brief list weaves together experiences with emotions. Most are waiting to be written.

Hope isn’t an experience as much as it is a belief. This belief has been a driving force in some of my experiences and many of my thoughts. Links are provided if you’d like to go back and read past posts. Hope is what I know.

Hope, Belief, and a Monthly Planner

Doom Dibbling or Hope Harvesting

Write what you know. I know my experiences.

Teaching

I know a few things about teaching after twenty-three years in the classroom. Best practices in curriculum and child development have come and gone. Co-workers and students have provided so many stories that you can’t make up. Classic one liners that still make me laugh. One year each child reminded me of a different breed of dog. I loved that class. One year there was a child who had some obvious unidentified emotional issues but who could work quite successfully under his desk. I loved that child as challenging as he was. Another year there was another child who inched her way closer and closer to the door and thought she was hiding. She was a character. I remember mistakes I’ve made like working with glitter as part of projects. I could write about lockdown drills. There is endless material. I can remember where I stood when I learned my dad had died. I know where I was when I got the call that my mom had taken a turn and the end was near. I can bring up the moment where a friend told me she was pregnant. The day I shared with my students I had cancer and couldn’t be with them is still fresh. So many nonteaching things happen within the walls of a school. The things we’d hear if those walls could talk.

I was happy teaching. At times I was frustrated. I felt successful, secure, and safe. Teaching was home.

Write what you know. I know teaching.

I’m not the only one who knows these things.

What do you know?

Toxic Positivity

I am a positive person. I am not doom and gloom. Hope is a theme that is front and center in most of my thinking and plans. I believe a positive perspective increases my chances of success in whatever I endeavor. It isn’t that I have to exercise; it’s that I get to exercise. The snow is still the same amount whether I like it or not. I choose to enjoy it and cross country ski when I have the chance. I am not trapped in my home all these months during COVID-19. I am safe.

Living with metastatic cancer makes seeing the bright side harder. I usually am still able to see it. I am grateful I don’t have to work while trying to manage my health. I have a home where I’m more than comfortable. I feel so fortunate to be near top-tier health care. Yet, life isn’t all bright and shiny and lucky me. I still have cancer and cancer sucks. Sucks hard. But I’m still here and that fact is pretty sparkly in my eyes.

I experience the dark. When I’m there, I know that’s where I need to be for a period of time until I’m done with the darkness. IF it’s something I share, and that’s a big if, I need people to acknowledge how crappy the present moment is and that they also feel bad about what’s happening. I do not need to hear Pollyanna BS. Sometimes I need an objective viewpoint, but objectivity isn’t necessarily overly positive.

I have seen comments lately from a few who live at Our Lady of the Perpetually Positive on social media when someone else in the cancer community is in the dark. It isn’t helpful to respond with some never give up mantra when someone is in deep despair about the latest development with cancer when things aren’t going well. A treatment isn’t working. There aren’t options to try. Someone is experiencing physical pain. It is torture to read such news.

People need space held for them in this scary unfolding.

I recently read one such toxic positive comment as a response to another’s bad news. The advice given was to be happy and positive. It’s worth noting the responder is a long time breast cancer survivor and doesn’t have metastatic breast cancer. Does that matter? I’m not sure. There still can be pain and permanent issues as a survivor. I can’t think of a fair comparison. I have a dear friend who is a two-time survivor of breast cancer. I know I can talk to her about things and she listens and responds sensitively. She would never tell me to be happy and positive when something has me devastated.

Perhaps it’s also worth noting this kind of “be happy” response is this person’s go to reply from other comments she’s made. She means well. I have no reason to believe otherwise. Yet, it’s repetitive. It rubs me the wrong way, so much so that I’m writing about it. One of us is missing something in translation. It very possibly could be me.

And yes, I am well aware that I can’t control how another person responds to something. I am used to people not responding the way I think they should in life. I can only control my reaction. There are plenty of opportunities in my life to practice how I react. This is one such opportunity.

So, what is an appropriate way to respond to this perpetual positivity? Perhaps it is simply to mind my own business. Some people have a gift with responses that honor what was said and still offer comfort and that thread of hope. That thread of hope is important to me. A lot of the time I don’t know what I can say that would help someone else feel heard and less alone. Most of the time I think I do okay. I’m more at a loss as to how I’d appropriately respond if I were to receive some of these over the top positive comments.

What is best?

Empathy/Sensitive: Thank you for caring. This advice is truly more upsetting to me than helpful.

Blunt: You so don’t understand. I’m unable to feel the way you are about my impending doom.

Expletive: One or two choice words may communicate feelings effectively.

Short and Sweet: Thank you. It acknowledges the original comment with gratitude and no judgment.

No response: Sometimes ignoring is a fine way to let go and move on. No response is a response. I remind myself I don’t have to share my every thought and reaction, especially if it may be something I could come to regret.

I can only speak for myself, but I would want supportive comments that meet me where I am. I posted a photo of my hand at the end of summer. I set a clear boundary with what I wrote in that I didn’t want pity, advice, or to be reminded I was tough. I wrote I wanted people to know that there were many of us who go around rather quietly but still have a hard time dealing with side effects of our treatments. I wrote more was needed for Stage IV. My friends knew it was uncharacteristic for me to share a hardship. Comments let me know people understood, that I was heard, that cancer sucked, and that I was loved. I didn’t get one single suggestion to go make lemonade with my lemons. Making lemonade would have been fairly hard for me since squeezing lemons would hurt.

There are also cancer magazines that emphasize coping positively with cancer. That’s perfectly fine as there is nothing wrong with positive thinking. However, it became a little less fine one day when I read one such magazine’s submission guidelines that stated they strived “to remain upbeat and positive. Therefore, articles about death and dying are generally not accepted.” I am deliberately not mentioning the name of the publication. I haven’t read many of their articles and want to give them the benefit of my doubts. Death and dying sure isn’t upbeat but it does happen in Cancerland. I have a choice whether I read certain articles and comments or not. Perhaps they aren’t coping too well themselves by forbidding topics that may upset readers.

As I said earlier, I’m not doom and gloom, but it strikes me as highly insensitive to tell someone to be happy when they share they are almost out of options. It is as inappropriate as peals of laughter would be if receiving news like this in person. There is a time for happiness and a time for sadness. There is a time for sunshine and a time for rain. There is a time to ditch toxic positivity and that time is now.

It is okay to not feel happy all the time.

Please leave a reply and let me know your thoughts on dealing with blinding comments from the sunny side.

Wigs and Cancer

How much do I have to say about wigs? I’m not even wearing one thanks to my cold cap. Surprisingly, I still have quite a lot to say. I have four wigs. Three of them work well for me.

My experiences at the wig salon located within the Carbone Cancer Center have been wonderful. Over the last eight plus years, my stylist Stephanie has been warm, empathetic, helpful, and has made a real connection with me. She is interested in my life, not just my life with cancer.

Because of our friendship, I’ve done a couple of interviews recently to help promote the wig salon. My main goal was to emphasize the high-quality wigs and personalized service provided there. Inevitably, the reporters also wanted to talk about my story. Both interviews have happened when I’m not currently wigging which made them slightly awkward for me. I feel it pulls away from the focus of highlighting the wig program offered. It’s pretty easy for someone with hair to talk about her memories. I can’t help but think of myself as hypocritical. Admittedly, I do not understand when others walk down memory lane and sound wistful. I just don’t get it. Perhaps someone currently going through chemo induced hair loss would have told a more poignant story for my most recent interview. Anyway, I’ve tried in each of them to come back to the role wigs have had in my experience.

My last interview was done over the phone. I was asked how wearing a wig made me feel. Did it make me feel more normal? I knew what the student journalist was asking, yet normal wasn’t the right word. I know I’ve used the word normal before to describe how wearing a wig made me feel, but the thing is it’s all relative.

When I first dabbled with the choice to wear a wig or not, I did not wear one. I hated it. Wraps made me feel normal. Being bald from time to time made me feel normal. Later in life when faced with hair loss again, a wig made me feel more normal. Comparing these two situations, I figured out what I really meant by feeling normal.

Normal meant comfortable. At one point in my life I was more comfortable in wraps and scarves. Another time I was more comfortable in a wig. I was in different places with different comfort levels. Comfort in this instance means both emotional and physical comfort. A wig was a physical manifestation that brought me inner comfort. It was easy to wear.

There was safety in that comfort.

Digging deeper, I realize the word normal also correlated with a need for privacy. I wanted to go about my business without drawing attention to myself. Losing hair is such a public side effect of cancer. Wearing a good wig made me feel less on display. I was able to keep my private life more private to those who didn’t know me. I looked like everyone else and that is where the word normal fits because it is a norm for women to have hair.

There is also safety in that privacy.

Safety is a big thing for me. Cancer doesn’t make me feel safe.

Another question I was asked was whether wearing a wig made me feel more confident. I know I’ve also used this word in the past to describe wearing a wig. During the second interview, I realized confident was not the right word either. I felt the journalist wanted me to use it per the way she was asking the question. I also felt like I wasn’t giving her what she wanted, but I couldn’t agree with her if I wasn’t feeling it. In the end, the published article made only a passing reference to me with a supporting comment I provided about the wig stylist. That’s fine as the wigs and stylist really were the focus. I benefited from our conversation because I finally figured out my feelings on wigs.

Wigs absolutely can make someone feel more confident. Couldn’t they also make someone feel like a fraud? Again, it’s all relative. I struggled when someone commented how nice my short hair (wig) looked years ago in church and thought it was probably so much easier to style. Sure, it was easier, I took it off a wig stand each morning and that was pretty much it. But I said thank you and left it there. I didn’t know her well enough to confide more.

Confidence doesn’t hinge on whether someone has hair or not. I was confident enough being bald. I just didn’t want to be bald. I wanted to have options. It takes confidence to be seen without a wig and not a hair on your head. I was confident enough in wraps and scarves. It takes confidence to know you are rocking your wrap. Confidence is internal. I think it’s based on your personality and a person’s experiences.

If I had been asked about how metastatic cancer steals identity, I would have a lot to say. The same would hold true if I had been asked how metastatic cancer affects my confidence. My sense of identity and confidence have changed throughout my years living with cancer. Sometimes I’ve been a mess. Other times I feel I know a few things about myself and about life. I wobble. I reset. My thoughts can drive me crazy within the course of one day.

I have been comfortable in a wrap, being bald, and in a wig. I’m extremely comfortable with my own hair. Go figure. Normal is as normal does. Normal can be felt at each of these times. Everyone knows what normal feels like and yet it can be hard to put into words. I have felt privacy consistently only in a wig and when my hair has been long enough to be wild and crazy. Comfort and privacy go a long way in helping me feel normal.

Cancer and Treatment Fatigue

I am tired.

I think we all are tired. It’s no wonder because 2020 has thrown so much at us.

Last month on the news there was a story on what health experts in my area referred to as pandemic fatigue. It refers to people being tired of following recommended safety guidelines so strictly. As a result, they’ve let their guard down in terms of masking and social distancing. There is a spike in numbers of positive cases of COVID-19 where I live. People are being stupid. The local health expert said that through contact tracing they’ve learned people have contracted the virus when they have gone places without a mask. Guards have been let down when in small groups. People have become weary after seven months. Here we are at the end of October and Wisconsin has become a hot zone with numbers in the thousands for positive cases on a daily basis.

I’m tired of masking. I’ve planned a few more outings than in spring and summer because I want to enjoy the fall season before the cold of winter arrives. I seriously considered an outdoor activity where I knew there would be over a hundred strangers who may not be following all the safety guidelines while there. Well, I wanted to go. I’d be careful. It would be okay. I’ve been okay so far. Those were major rationalizations on my end. I decided I couldn’t go. No way.

I know it isn’t a contest between cancer and COVID, but many reading this have lived for years with cancer. The fatigue from years can’t compare to fatigue from seven months. Yet, we all can empathize because 2020 has been a rough year.

The National Center of Biotechnology Information (NCBI) is located within the National institutes of Health (NIH). The NCBI defines treatment fatigue as “decreased desire and motivation to maintain vigilance in adhering to a treatment regimen among patients prescribed long-term protocols.”

Treatment fatigue from ongoing cancer treatments absolutely counts.

I copied this next quote a while ago and thought I had copied the source. Upon finding it for this post, I see I didn’t get the source included. I’m sorry. I have searched in good faith to find it. If anyone recognizes it, please let me know and I will happily edit to include proper credit. With that disclaimer, here is a definition for cancer-related fatigue from someone somewhere:

The medical term for this is “cancer-related fatigue.” It is a feeling of physical, emotional, and mental exhaustion even though you are getting enough rest and sleep. Cancer-related fatigue can affect your daily life. And, some people may experience this kind of fatigue for months or years after finishing treatment.

Months or years after finishing treatment. I will never finish so I must endure.

Different drugs have different schedules of repeating cycles. The schedule depends on what drug is being given. Treatments can happen daily, weekly, bi-weekly, every three weeks, monthly, and quarterly. Oral medication is often prescribed to be taken daily. I believe there is a solid correlation of treatment frequency to fatigue. It’s been that way for me.

Aspects of cancer that are not treatment involved also cause cancer fatigue. There are office visits with an oncologist to schedule, labs involved, and prescriptions to keep filled. Scans and tests get squeezed into non treatment weeks and these depend both on a regular schedule and how things are going. Side effects are carried both visibly and invisibly. Even all the needle pokes for all the necessary reasons gets tiring.

There’s always something.

That something becomes exhausting.

One of the biggest something is when someone in the cancer community dies.

Other big somethings are progression, generalized anxiety, and getting through hard days.

It is just too much.

Breast Cancer Awareness Month has broken me a couple of times this year. I just can’t. I’ve been both reassured that there are always strong forces to keep walking the walk when I can’t and people who say they’ve got me when I need support. These friends recharge me.

Constant advocating wears on me like a frayed pink ribbon. What I do is small compared to the efforts of some of the women I know. I don’t understand how they do it because it appears they never rest. I know I don’t even see all they do. They amaze me and they have made big impacts. I have made a difference but it’s on a smaller scale. The advocacy hat serves a powerful purpose. I can’t wear it all the time.

My body needs time to rest and heal from cycle to cycle of each treatment. Sometimes it doesn’t feel like I am getting much of a break. Especially when fatigue is a major side effect itself. Rather than dissipating, it intensifies. The resting and healing in between cycles is hard on me because I mark time trying to ensure my issues with hand-foot syndrome don’t flare and trying to protect myself from COVID-19. I want to make the most of my time between treatments and I don’t feel I do.

Cancer and treatment fatigue goes beyond fatigue from a treatment regimen. There is emotional fatigue.

I am tired.

It does get harder the longer I do it. Appointments don’t stop. I’m never given much of a break. The grind is ongoing daily. I can never get away from it.

Cancer doesn’t take a day off.

It hasn’t stopped during the pandemic.

And yet, I’ve heard explanations regarding slowdowns said to my face “because of the pandemic” that fall flat on my ears. What I hear is that I’m not important and don’t matter after all. My house continues to burn but the firefighters are fighting a bigger fire.

Managing all my stressful emotions contributes to fatigue. My anxiety over the last eight plus years has increased. High anxiety over a long period of time stresses the body. A person cannot be on high stress mode all the time where they are constantly fending something off. Remember there is always something. I work hard to lower it during scary times so I can find some stretches of calm.

Scheduling my many appointments is another source of emotional fatigue. The schedulers overall do a good job, but they often don’t have all the facts or the facts they have are incorrect. Yet, they are the gate keepers that keep my calendar moving smoothly or create an additional and unneeded obstacle I have to clear. Billing and insurance complications raise the hurdles here, too. Over time, I have collected a couple of phone numbers of people who seem to know how to help me and make problems go away.

Not being treated like a person is one more area that weighs on me heavily.

I am tired of so much fatigue. I give myself breaks whenever I can. I laugh. I eat. I exercise. I enjoy nature. I look for beauty and comfort. And I keep on finding a way.

Always.

The “I” in Patient

We all know there is no I in TEAM.

But there is an I in PATIENT.

I am an integral part of my care team.

I am the reason for my team.

I am the team member who is affected by decisions.

I care the most about those decisions.

I understand my health well.

I know how I feel.

I track my side effects.

I notice minute changes in my body and how I feel.

I take charge of my health.

I don’t accept no easily.

I believe in science and in myself.

I should not be discounted.

I won’t stay in my lane.

I participate in my care (which is my lane by the way).

I advocate for my needs.

I ask questions.

I don’t just have cancer.

I have feelings.

I use my voice.

I get tired from having to push so darn hard to be seen and heard. My biggest annoyance lately has been feeling like my voice doesn’t matter because I am the patient. There have been a couple of recent instances where I’ve literally had to say something along the lines that I could be consulted and believed. I had helpful and needed information. It’s hard for me not to let anger filter through some responses. Information I bring to a conversation isn’t validated until it can be cross-checked with my oncologist or my record. Some information isn’t entirely correct in my record. It needed to be written a certain way as it was the lesser of two evils. I understand facts are not up to interpretation, but not all of them are black and white. Facts have circumstances. Specifically, facts can change in terms of what I was given in initial scans versus what I need currently.

It took me about 5 phone calls over 3 days to get my last set of scans scheduled. I’ll try to be concise. I had heard nothing after a week. I found that unacceptable and began going through the proper channels so I could get them on the calendar. A recent conference call with a scheduIer in imaging and scheduler from my oncologist’s office upset me. I began to lose it after about twenty minutes of the run around and some misinformation in the initial orders (a case of botched facts). I’ve paraphrased two especially bothersome exchanges.

Imaging Scheduler: It says here you need a premed.

Me: No, I usually don’t take anything.

Imaging Scheduler: If the oncologist believes you need medication for the scan, they will order it.

Me: I don’t need anything because I don’t get the additional contrast dye. You might want to ask me as I’m the patient being kicked around. I know what I need. I won’t consent to take something that I don’t need.

The conversation kept deteriorating. I was close to tears and knew I was getting stuck with the short end of the stick. We all knew I needed accommodations and yet I felt I was being blamed because slots were full. I had been trying for days to make progress with getting these tests scheduled.

Oncology Scheduler: We can proceed with your next treatment only if you can get your scans before your oncology and treatment visit. Otherwise your treatment will need to be pushed to the next week.

Me: Well, that’s a real shitty deal for me, pardon my language. My treatment is a pretty big deal. I need it on time. I’m being treated like I’m not even human. Now, I can come in on two separate days so I can fit these requirements because several people have dropped the ball in getting the scans to happen.

My frustrations were understood.

Right.

We scheduled scans at inconvenient times on two separate days because I had little choice and needed to set definite dates and times. I would do what I had to do. Always do. Always will. The imaging scheduler was going to keep working and see if she could get them on the same date. I wasn’t going to hold my breath. I would place a call to the patient relations department and let them know that known scans needed to be scheduled as soon as possible after an oncology visit so the patient isn’t left burdened for no valid reason. They could do better. I also wanted to suggest beginning the scheduling process sooner for myself if I needed accommodations. You can bet I’ll be bringing this up sooner than is needed so the process is easier for me next time.

My phone rang the next morning. It was the imaging scheduler who had found a way to get my appointments to work with the accommodations I needed, at my preferred location, and on a date that didn’t interfere with my treatment. I scarcely believed it! I felt much better about the fit I pitched a day earlier. I thanked her repeatedly and let her know how much it meant to me to have her work so diligently on my behalf. She made my day and I told her I hoped she would treat herself to something enjoyable, whatever that might be.

Sometimes I feel very Jekyll and Hyde. I am really quite delightful when my buttons aren’t being pushed. I would rather work toward solutions amenably. Life is smoother for everyone that way. However, I can unleash my fury quickly when I’ve had enough. I had had enough. I feel like I’m like my own attack dog when this happens. I am all I have.

Then there are the times I feel like I’m not an agreeable patient. I wouldn’t describe myself as noncompliant, maybe some medical professionals would. Too bad. I ask questions and advocate for what I need. Cancer has taught me a lot.

I am a patient.

Listen to me.

Include me.

Value me.

Merchandising Cancer

I am pretty sure I’ll offend people today.

I offend myself. I have reservations if I should even post what I’ve written. It looks like I have despite my doubts.

I know my thoughts surrounding merchandising cancer have an angry tone. I am not sorry for it and won’t apologize. I get to feel angry that people make money off a disease that kills. I get to feel angry that people buy t-shirts and mugs rather than donate directly to research. I get to feel angry that I put myself through agony in an effort to change even one person’s attitude about breast cancer merchandise.

Offensive Section

Are you someone who feels okay with pink ribbon shirts? Somehow these are big business whereas merchandising other demographics would be abominations.

Think about these scenarios:

Alcoholism and drug addiction merchandise. Those who conquer these demons work hard every single day. It just isn’t necessary to wear their sobriety on their sleeve. Chips are awarded as small recognition for major achievements. The first chip is earned after 24 hours. It’s not a market for profit. April is designated as Alcohol Awareness Month but it doesn’t garner the same kind of attention that cold beer at sporting events attracts.

Where are the COVID shirts? It’s current and global. Or would those be in poor taste?

Yes, they would be in horrible taste. Sadly, there probably will be some that eventually surface. Maybe they already have. The 200,000+ who have died won’t be given a second thought. The global death toll has topped over a million.

Where are the shirts featuring funeral homes, coffins, or grave markers? We all will use these in some form or another at some point. Why not celebrate it with cute shirts? People wouldn’t have to worry about what to wear to funerals. This captive audience isn’t being targeted.

Because it’s wrong, offensive, sick, and unthinkable.

Pinkwashing

Pinkwashing is when a company uses breast cancer to promote itself and its products or services. Often there is no support of breast cancer charities at all.

None of what I suggested should be merchandised. Somehow though, it’s allowable to profit off cancer.

You may see pink. I see death. I see the coffins and the funerals. I see visits to cemeteries. I don’t understand why someone needs a shirt to celebrate every day in October. I have read such stories from people who own a pink shirt to wear each day in the name of awareness.

A t-shirt typically is priced around $25. It totals $775 if you have a different one for each day in October. Ask for a donation to cancer research and it sounds like a bizarre idea to some because nothing tangible is gained from donating.

Facebook Comments

I see too many ads on Facebook that have around 2 thousand comments. Merchandising cancer is a business, pure and simple.

 If two thousand people put $25 each toward metastatic breast cancer research, it would total $50,000.

The following are actual comments from Facebook with names removed. They all push my buttons in some form. My takeaway is there are an awful lot of people who easily fall prey to a pretty pink product and pink messaging and all the pinkwashing that Pinktober brings.

Sending prayers to all my tired 6 years ago but I won …hang in there lady’s you can beat it to

(We all make an occasional typo, but lack of punctuation and correct grammar makes this hard to decipher. This is how the comment was written word for word.)

Be strong you! You can order this shirt here:

Omg love this….. it’s so true!!9 years and counting.

Love this shirt! I need this!!!!!

I need this for October which is breast cancer awareness month

My daughter is fighting right now she has her last chemo treatment on the 17th this is what she would say. I just pray we can say it’s gone and she can ring that bell… god bless you all ❤️❤️

OMG I NEED THIS SHIRT!!!!

So cute!

Beautiful

Fight!Fight!Fight!!!!

ABSOLUTELY love this, I’m a 35plus year Survivor, I’m getting this 

I am in that fight myself, but I have God on my side.

Quite a few just type words like blessings, prayers, hugs, or use several prayer and heart emojis.

There are a couple emojis I have in mind that I am tempted to use. Yes, those.

I’ve ranted on a few of these sites out of frustration and anger. I don’t think it does much. Direct replies to others’ comments are my new strategy. By focusing on individuals, I hope to make a difference one by one. Information presented without my angry tone may be more effective. I don’t mind if anyone reading wants to join me and use my comments.

Here are a few of my attempts:

I can understand if wearing a shirt helps you feel strong right now. None of the proceeds from these shirts go to breast cancer research. I feel strong when I advocate and donate for more research.

Have you considered donating to breast cancer research? Thank you if you already have.

Nothing from sales goes towards research. Nothing! If two thousand people put $25 each toward metastatic breast cancer research that would total $50,000. Is wearing a “cute” shirt that “you have to have” really the way you want to go? There’s nothing cute about cancer. Having this shirt does nothing for research. Many thanks if you’ve donated to research. Always check where your contributions go and how they are used.

A more recent trend has been for people to comment on their breast cancer status and their diagnosis. There is no mention of their interest or thoughts on the advertised shirt. The comment is entirely focused on their personal experience. These folks are looking for a support group. I fail to see the connection to an ad campaign where their experience has not been solicited. These comments usually get a comment from the company as a reply with a link to order the shirt. That is really inappropriate. It’s especially low when someone has commented someone died from cancer and it’s clear they are in pain.

Businesses profit off cancer. They don’t care.

A charity or fundraiser makes money to benefit cancer care or research. They do care.

Is there a place for pink?

Are all shirts and other pink merchandise inherently bad? No. I will admit there are a few I like that convey hope. I still won’t order one based on principle and my goal to support research. I understand there are people who buy them in the name of advocacy and believe they are promoting awareness by wearing them. Maybe they have. I have yet to read a valuable comment that connects wearing the shirt to advocacy plans.

I am not against awareness. Walks and runs are important. They give hope and a sense of agency. They raise money. Fundraiser dinners and events do the same thing. Awareness must be tied to action that directly supports the cause and purpose at hand.

I am also not against pink. There are several women I know who have used it for the right reasons and recognize the metastatic community is part of their work. I am grateful for them.

If t-shirts were the answer, I would have been handed one upon diagnosis and sent on my merry way. Pinkwashing makes me blue. Mostly red with anger. Merchandise isn’t lifesaving. Merchandise lines the pockets of the business executives. Merchandise follows demand. I dream of the day when there is no demand because there are cures for all cancers.

Research can save lives.

Not pink.