Cancer Words

Words can cause comfort or discomfort, happiness or tears, calm or incite. What upsets one person may not phase another. Words in the cancer world are no exception. Today, I look closely at a few of these words that bother me or cause debate among those who live with or have experienced cancer.

Cancerversary

Cancerversary is not one of my favorite words. It is used both by cancer survivors and those living with metastatic disease. For survivors, cancerversaries mark one more year of a return to health, one more year away from a bad dream, and one more year far, far away from cancer. One childhood friend once referred to her cancer experience as a blur. My life before cancer often seems like a blur. I often find these people seem to define a cancerversary in terms of good health. Photos and comments concerning cancerversaries are happy.

Cancerversaries mean something different in the metastatic community. Degrees of health vary. Some see improvements from year to year. Some are stable. Some notice declines. The following year is a hope but never a certainty. There is joy in seeing another year. Understandably, there is sadness because so much has been endured and the future is a big question mark. Happiness still exists, but it is different. Perhaps I can explain the difference of seeing someone else play with a puppy and being able to play and snuggle with a puppy yourself. A photo of a puppy is different from one in your arms that’s napping or licking your face. We can all love puppies but have different experiences with them. Levels of joy with cancerversaries for those with metastatic cancer are different.

I represent only one view, my own. One thing I learned along the way is that everyone brings their individual experience. Everyone’s opinion has value. When I hear the word cancerversary, I think of wedding anniversaries. Wedding anniversaries are happy days for married couples.

Not all anniversaries are celebrated. Some are endured like those that mark a diagnosis, a divorce, a death. We mark the bombing of Pearl Harbor and observe the terrorist attack on 9/11. COVID death benchmarks are marked with a heavy sadness. Flags are lowered. These dates show there are events attached to the word anniversary with tragic loss of life. Perhaps the word cancerversary isn’t so out of place. I’ve accepted this term as I’ve evolved to a place where I’m not going to spend energy arguing over a word. I am fine with whatever term others want to use. You can’t tell someone else how to feel and there are feelings attached to the words we choose.

I’ve called them survivorversaries since I was diagnosed. The word survivor has different interpretations in the metastatic community as well. It works for me. In the same vein that a wedding date is celebrated, I can get more behind honoring my surviving another year. I won’t celebrate cancer which is a big part of why the word cancerversary rubs me the wrong way. I’d like there to be a couple moments where I can focus on the fact that I’ve stayed alive up till now and not have the cancer word slip in uninvited. I acknowledge the day. I do share with others that I’m past the median 2-3 year expectation and well past the dismally low 5 year survival statistic (28%). But it’s tough when most people I know who were diagnosed after I was have already died. Survivor guilt can be heavy to carry. I look to people who are still around and living well at ten, fifteen, and twenty plus years with metastatic disease. Since I’m examining words, the word unicorn has been used to refer to these people. It is similar to an outlier and pretty spot on for what it represents.

Still, when that looming date arrives once a year, I do something special for myself, feel a sense of achievement, and march onward to the next big date. I may light a candle. It’s a good day for reflective writing. It’s a good day for a treat or a good workout. I’ve been lucky enough to see my first robins of the spring return on my survivorversary.

The term Diagnosis Day is growing on me a lot. It’s factual. It doesn’t feel like it needs to be celebrated or grieved. There isn’t a prior association to an anniversary. It’s just there. Its meaning is clear without explanation. It’s not a mouthful like survivorversary. I’m going to start using Diagnosis Day more and more. My Diagnosis Day is March 14th.

Yes, today.

Nine years.

Survivor

The word survivor rubs many the wrong way. I don’t mind this one as much. The issue with this word seems to be metastatic people are included in survivor language to a point until we aren’t welcomed in a conversation, group, or study because of our status. The second I was diagnosed I became a survivor. When I’m no longer surviving, I’m no longer a survivor. One size does not fit all. Others prefer words like thriver, endurer, haver, metser, or refuse to be labeled at all. I haven’t really found a term I feel suits me. I just want to be me and not always the person with cancer. It’s hard to escape from since I go everywhere I am. Go figure.

I commented recently a new word was needed to replace thriver and now I think better of it. A new label is the last thing we need. I think thriver may have started out with positive connotations because it differentiated from survivor in a way that was meant to be a compliment. Thriving means something is flourishing or prospering. Surviving, thriving, striving, etc. all have positive enough meanings that sour when attached to cancer. Not everyone feels they are flourishing who lives with metastatic disease. It doesn’t take long for a word associated with cancer to take on negativity. Cancer takes perfectly good words and ruins them. Look at the word pink. It’s a perfectly good word until used in conjunction with breast cancer. Then it becomes a debated and sometimes hated word and color.

Battle and Fight

Battle imagery bothers me. Again, it probably started out as a way to honor or pay tribute to someone who had died much as we would honor a fallen soldier. The problem is most people who die of cancer aren’t soldiers. I know there are some. Saying someone lost their battle or fight to cancer is disrespectful. There is not a winner and loser. When someone dies who has cancer, so does the cancer.

Isolating the word fight itself somehow doesn’t annoy me as much. It’s used in many different contexts. Siblings fight. Football teams fight for an inch of yardage. We fight (stand up) for those who can’t fight for themselves or for core beliefs. Politicians fight. A lot. You bet I’m fighting to stay alive. I’m certainly not resigned to whatever fate falls to me. I fight in some of the typical ways, but I also fight with hope and joy. I fight with knowledge, science, and research. That gets hard to explain to others because you don’t throw a punch of hope or pummel joy. Just as people get to choose what they’d like to be called, we can choose how we fight.

What works instead of battle or fight when someone dies? Just say died like you would when others die. If the person is still living, then say they are living with cancer rather than battling or fighting cancer. I’m living. The name of my blog is Finding A Way – Living with Cancer and Living Well – not Fighting Cancer and Fighting Well. I can’t even imagine it.

Journey

Journey is the word I find most annoying. Sometimes I wonder if smoke doesn’t fire out of my ears when I hear someone talk about their cancer journey or refer to my journey. Cancer isn’t a vacation, adventure, trip, odyssey, or journey. My former oncologist referred to unpleasant developments as new territory. I often replied I was staying put in my own territory and he needed to get himself back to where I was. The only travel motif that even slightly works is passage. Passage can be part of a path or journey (groan). That would mean cancer is a way to move from one place to another. It’s more of a transition. What that transition means is different for everyone. I feel I’m in constant transition. A state of transition can be either fluid or final.

If stumped for a word, just say cancer is part of someone’s life. Nothing else really works because of all the negative association. It isn’t a chapter, an act, inning, quarter, course, gift, or any other metaphor to mask someone has a scary, awful, life-threatening disease. It certainly isn’t a journey. A dream vacation to Tahiti is a journey worth taking. Weekly trips for cancer treatment are not the same. The weekly trips are highly worthwhile because I like breathing, but I’d love to wake in an overwater bungalow and swim in warm turquoise waters. Cancer is a part of my life.

Abigail Johnston (who writes No Half Measures) has used the word experience instead of journey. A cancer experience is to the point and its meaning can cover a wide spectrum of experiences whether they are good or bad. I referred to my friend’s time with cancer as an experience earlier in this post. Experience is a word being used by many these days. Cancer experience is going to find its way into my vocabulary more and more in the same way as Diagnosis Day. My opinion is these are better words.

Words carry a lot of power. I don’t think I’m going to change anyone’s mind about their personal preference. What I can do is communicate what words I prefer and use them on my Diagnosis Day and all the days I am living with cancer.

Are there words in the cancer world you wish would disappear? Hopefully, one day the word cancer itself can disappear.

Reclaiming October

Breast Cancer Awareness Month is almost here. An inundation of pink will accompany promises that a cure is just around the corner and that change is imminent. Everywhere you go, there will likely be some campaign to raise awareness with the belief that a contribution to the cause will go to research that will find a cure. It all will be so happy and upbeat because pink is pretty. Some will reminisce and post photos of life going through treatment and compare before and after photos. The media will highlight survivor stories.

Fine.

Really.

I am not trying to take away from someone else’s survival. There is room for everyone. I am trying to shift the focus and include a greater focus on metastatic breast cancer.

I know I am beautiful but I don’t post before and after photos because I still wear my wig. There will never be after photos for me because I will always be in treatment. I do hope to ditch the wig. I don’t think there is a lot that’s pretty about what I go through month-to-month, or even week-to-week. October is a tough month. It’s hard like a brick wall.

But I’m a wrecking ball.

Here I come.

I am gearing up for one hell of an October.

I’m taking the month back and making it about metastatic breast cancer. It’s a golden opportunity to put MBC in the spotlight.

I am renaming it Metastatic Breast Cancer Action Month.

#ActionMBC

Throughout October (and beyond), I will be taking action directed toward change. I will tweet, post, blog, and talk about the facts of MBC in attempts to create visibility and push for more attention, funds, and research to be directed toward this group of the breast cancer population. I’ll write letters and talk to anyone who will listen.

It’s vital I reach people who know little about this world. Many do think awareness is the way to end cancer. I disagree. Giving people accurate information about metastatic breast cancer is part of recruiting support for needed change. Facts on MBC will become tweets and posts. A few unsolicited opinions may be inserted. I’ll also display them on public bulletin boards and maybe even plaster them on bathroom stall doors to provide some meaningful literature in all of the finest restrooms I frequent. Yes, I did just write that. A person might as well spend a couple of minutes learning while occupied with bathroom business.

It amazes me how people don’t know some of the things I thought they would. They may even work in the healthcare industry and still be somewhat uninformed about the effects of metastatic breast cancer. They may be survivors and completely oblivious about the chances of recurrence. I don’t understand everything there is to understand about cancer. It’s my opinion the general public doesn’t have accurate information on secondary cancer and I would like to reach this audience.

Preaching to the choir doesn’t do much. Providing information to people who don’t even sing has the potential for change.

I want to provide information this month that:

  • Metastatic breast cancer is with those of us who have it for the rest of our lives. We will still have it after October.
  • No one has done anything to get cancer. It affects people of all ages, races, sizes, education levels, languages, and incomes.
  • People who have gone five years being free from cancer after treatment ends can still have a recurrence and develop metastatic cancer.
  • Metastatic cancer kills people.
  • 10% of patients already are Stage IV upon diagnosis like I was.
  • 30% of earlier stage breast cancer patients will become metastatic.
  • There is no way of knowing whether a patient’s cancer will metastasize.
  • It’s projected that 116 people per day will die from metastatic breast cancer in the U.S. in 2019. Five of those who die each day will be men.
  • The bulk of breast cancer donations go toward prevention and early-stage research. The percentage of donations going toward MBC research is typically in the single digits.
  • People who have any type of cancer, or have had cancer, or are labeled as having a pre-existing condition, deserve health coverage from insurance companies. Affordable health insurance is a basic human right.
  • Awareness and prevention programs have done nothing to lower the number of deaths from MBC.
  • We need more research, more treatment options, and more effective treatments for metastatic breast cancer.

We need more attention from others outside of the metastatic breast cancer community. I often feel like we are shouting from the rooftops from only our own village. It takes more than a village. It’s going to take all the villages.

I regularly hear that we need more research devoted to metastatic breast cancer. It’s often my own voice I hear saying it. I’m not just talking the talk, but now I’m walking the walk. A few months back I created a fundraiser through the UW Carbone Cancer Center where I receive treatment.

Click here to access my fundraising page. My plan is to devote a separate post about my goals for this at the end of the month. I encourage you to make a small donation and feel nifty with me. You’ll see what I mean after viewing my page. Don’t delay. Don’t put it on your “To Do” list. Once it’s done, it is a proud part of your “Ta-Dah” list. I am grateful for your support.

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Click here to watch a video about UW Carbone.

I am committed to raising money for research.

I am committed to making my voice heard.

I am committed to doing more.

I have plans to speak at several places in the community. My story will be displayed in a couple of businesses in October. I’m busy networking to keep the momentum going after October and for the better part of 2020. All this takes me quite firmly out of my comfort zone. My health often causes me discomfort anyway, so I might as well find ways to show it I am still the boss of me. I can wrestle and rumble with it and make it uncomfortable with me.

 

Please consider responding:

  • Please chime in with other MBC needs that I haven’t mentioned.
  • How can you use your platform and advocate for change this month?