A Week of Worry
INTERESTING STUFF – 9 February 2019

Oops. Sorry About My Wednesday Mistake

On Wednesday, I told you I would get the results of my latest CT scan yesterday, Thursday. Wrong.

Right here on the desk in the notebook where I keep important information from meetings with doctors and nurses, in big, black letters, it says:

“Dr. will call Friday with scan results.”

I would like to blame chemo brain for my mistake but it had been two weeks since my last treatment so that is probably not the cause. Chemo brain can make you stupid for a few days but it had subsided by the time I was screwing up the Wednesday post.

So, assuming I do hear the results sometime today and to spare you, kind and gentle readers, any test-results-wait-anxiety I may have infected you with on Wednesday, I will slip in the salient information on the Interesting Stuff post tomorrow.

Meanwhile, I ran across a recent BBC story about “cancer cliches” - words and phrases that many cancer patients reject.

We discussed this a bit last August when I explained why I dislike phrases like “battling cancer” and “fighting cancer”. BBC cites a survey of 2000 people who have or have had cancer, reporting that I'm not alone.

”Calling a person's cancer diagnosis a 'war' or a 'battle' and saying they had 'lost their battle' or 'lost their fight' when they died, were other unpopular descriptions, according to the poll carried out by YouGov.

“Articles in the media and posts on social networks were found to be the worst offenders for using such language.

“Mandy Mahoney, 47, has incurable metastatic breast cancer...Mandy said it was not necessary for people to 'swallow a textbook and come up with all of the key phrases' to talk to someone with cancer, and it is fine to not always know what to say.

"'If you tell me it's awkward and you don't know what to say I will find a way to make that right for you, and actually on some occasions I might say 'we don't have to talk about it'.

"'But just be real.'"

There is more detail and a different opinion from a body builder at the BBC site.

I know there are a number of TGB readers who have or have had cancer. How you do you feel about these words and phrases?



Comments

As a non cancer sufferer:

1) Anything that projects the talkers feelings onto the person with the diagnosis... (eg you must be devastated... not for the speaker to say how the listener feels...)
2) Anything that takes autonomy away from the person with the diagnosis (eg your should eat this/do that...mustn’t ‘give up’ - as if you’re at fault for your death if you elect to pass any any of their proclamations... )
3) listening while waiting to talk. rather than listening with the presence of mind to hear.

From a well-meaning friend, I heard, "You'll be OK. You're a fighter."

Fight cancer? CANCER? Heck, I don't even know how to fight a sore throat or a broken leg, much less cancer.

Sigh.

I don't know whether or not this tendency to idealize life's trials is an American thing or more global, but I'm not a fan. I was more pragmatic: this is what it is and these are my options. I didn't enlist for it or anything. I do know at least one who appears to me (at least) to be in denial but it's not for me to judge, and for all I know, mountain biking may be therapeutic.

My own experience with cancer was brief and totally eliminated with surgery in 1994. Not to say I won't get a different variety in years ahead. I've never cared for the analogy of "battle" in regards to disease. I suppose because doctors frame it as "attacking the immune system", patient's see a horde of Orcs silently running amok in their bodies?

What I do appreciate, Ronni, is this place to let our walls down, discuss and cuss without fear of alienating someone. Death in our culture is so mysterious, hushed, hidden, and whispered. Glad TGB has a full shining sun on this natural event. Scary and hard to face, but this support group lifts every ship.

Much love to you all.

Especially like SM's #3, "listening while waiting to talk rather than listening with presence of mind to hear."

People will ask if they want advice. Sometimes people just want to be heard and talk out their thoughts and feelings without interjection. I'm too often guilty of trying to help when that is not what is needed.

Love your forum here, Ronni.

I dunno... the doctors "fight" the cancer (cold, flu, etc) to some extent. The body might actually do its own fighting on our behalf. But other than that, these seem like simple euphemisms which serve as convenient substitutes for a conversation that would soon become way too complicated for afternoon tea. I recently underwent two surgeries for esophageal polyps that, apparently, were malignant. Luckily, I stand "cured" at the moment. But, of course, the doctors can only predict based on what they can see... and sometimes nature has a mind of its own.
I can see where the concept of "fighting" might be a misnomer. If physiology were to turn against me at some point, I would hope that I could accept my fate without throwing a tantrum but I also realize that, at some level, there is a "fight" going on (perhaps the chemo versus the rogue cells... perhaps just the doctor's hopes versus reality) so I wouldn't object to someone saying of me, after my demise, that "I lost the fight" because, regardless of how Stoic I may consider myself to be... in the end, we all fight to survive at the very core of our souls. To do less would be to be less than human...

I recently went to the Wende Museum in Culver City/Los Angeles and saw an exhibit about how the Cold War infused our language, our toys, our business life and our culture in America and abroad. Until I saw it laid out before me in the exhibits I never realized how much my childhood was infused with military ideology, language and values. Even the “rocket ship” in the park near my house was an exhibit on how children’s worlds were quietly infused with military icons.
I think the idea of the “fight” with cancer comes from the same ideology....
Those of us who’ve had cancer know that getting the diagnosis is terrifying and getting the treatment is simply a must do. I agree with the other comments here, that I don’t “fight” a cold....nor did I “fight” cancer.

All the scary, disturbing, threatening things in our culture (maybe in most or all cultures) seem difficult to face squarely for most people, and I'm wondering whether that's because we lose or give up too much agency to the medical professionals. My experiences with cancer are mostly second hand so far, but one that particularly moved and impressed me recently was from a young girl, who I think was ten at the time.

I was doing some work a few months ago with a woman whose granddaughter had been newly diagnosed with cancer after a lump in her thigh was found and biopsied. The little girl had been going through treatment for a few months at the time of this particular discussion at the time of this discussion between her grandma and me. Apparently the little girl was receiving injections regularly a children's hospital in a large city, and when she met a new technician on her most recent visit at the time, she was very clear about how the procedure was to go. Her grandmother said that the words from her granddaughter were something to the effect of , ". . . you show me the needle, I scream and then you give me the shot."

Short, direct and pretty matter of fact, but a remarkable display of that little girl's agency and control in the situation, despite her need to scream. I thought that was amazing and I hope that's becoming the norm, especially for children. I'm still more familiar with old-school practices of patients being expected to shut up and accept what is done to us, without questions in spite of our own individual need to scream.

I had some of the same feelings when my little brother committed suicide. The “it’s God’s will” statement locked me up internally and I wanted to scream. Being real and being a listener to a person who has been diagnosed or is full of pain is the key.

I never liked the war/battle reference. I also never say I "beat" cancer. I had cancer, and now I don't. I survived it. But I might have cancer again in the future.

I don’t look at it as fighting either. That implies fault if you lose the battle. Similar to what another reader wrote, I had a ‘friend’ say to me “Well, if it had to happen to someone, you’re the best one to have it because you are so strong and and capable”.

As I noted in an earlier comment, I didn't "fight" my cancer. I simply "endured" the treatments. The doctors did all the fighting -- the surgery, the chemo, the radiation. That I'm here today is a tribute to their cancer fighting skills. The fight was between the doctors and the cancer. I was merely the battlefield.

I would prefer to be "working with" rather than "fighting." It connotes personal involvement that's inclusive with the body and brings the physical, mental, spiritual and emotional to a cooperative place within.

Early on, like with cowboys and indians, we're taught to be competitive in thought and doings. What baloney!

What I usually say to people I know who have vancer or they tell me they have cancer is " That's a bummer. What are you doing about it?"
It shows concern without sounding condescending.

Cancer is a force of nature unfortunately...our bodies are suspectable to so many things...fate? I don't fight cancer...I cope...endure treatments and let go and let God....it is not in our control other than to do our best, follow treatments, pray and hope. I'm a pancreatic survivor almost three years...I am grateful for all my years but especially those three years...it is like a gift....but I also embrace reality and know that things can and will change...it is my journey, my bodies timeline and when it is time to go I hope to embrace the next beginning of my new journey when this one is completed...I accept the mystery and as they say, I will move forward by faith not sight.

Many people in my family have had various forms of cancer. None have ever referred to it as a battle. Instead, they decided whether or not to take what treatment was advised. They never used euphemisms; they called cancer by its name: cancer. It wasn't a battle, fight, war, struggle, etc. Was it easy to have cancer? No, of course not. But none of them pretended it was something other than a disease within their bodies. I learned a great deal from my family about living within reality, not fantasy.

I have the same view as my family members. I view a disease or ailment as just that. Calling something other than what it is does not change the reality. I want to live in the real world and face life's challenges as they come. No la-la-land for me. Thankfully, this attitude carries throughout my life: whether dealing with a troublesome relationship, job difficulties, my own life-long migraine disease. I educate/enlighten myself, have the difficult conversations, make choices, and move on to what is next. I choose not to live a life where I lie to myself.

Sounds like the language and terminology used comes down to a personal point of view since each must find their own psych coping route IMHO. Perhaps it behooves the listener to not attempt to characterize what action they think the individual with cancer is taking and simply inquire and allow them to describe the situation in their own words. The person with cancer not liking the analogy other well-meaning friends and family might use can simply say they don’t think of dealing with their cancer in those terms, then describe their approach. Seems to me that would help all be on the same communication page and avoid stirring any feelings of annoyance.

Well said Shirley, and well said Cowtown Pattie. I join the bunch who simply see cancer as a condition to be treated, or not : whatever is decided. Fighting a battle is just not part of my vocabulary when it comes to illness.

The other strange expression people use instead of death or dying is "passing". What does that mean?

Love to you all. xxxx

All I can do when someone has cancer is to be there. Sometimes I'm not even good at that.

I'm with you, Pamela, on "passing". I think it is short for something like passing over the boundary between life and death.

I'm particular to the words death and dying. Straight, unadorned, say exactly what they mean, although occasionally I like a well-turned phrase from literature like "shuffling off this mortal coil."

I have never thought about battles about a disease. My mother passed away from cancer, in Paris, France, and I wrote to our family and friends, in French, that “ma mère a succombée a un cancer” which I guess would be “my mother succumbed to a cancer” but I don’t know if that is a term used in the US.
When my husband died 3 months ago from Alzheimer’s we said in English that he died from Alzheimer’s disease, that’s all. In French I told my family and friends that “mon mari, atteint d’Alzheimer, a disparu le ….” It is difficult to translate, I think the word atteint would be “suffering from” and then disparu is “disappeared” – well, he did disappear from us after all, but he was too feeble for a battle. Actually it was me who did battle that disease for 10 years.

I think that "the fight" has more to do with attitude than any act you might do. The attitude that you will not be conquered, that you will do all it takes to stay alive is beneficial!

Ronni, it was interesting reading all of the earlier comments about metaphors - “fighting” cancer - “passing” or “losing the battle with cancer.” I’ve “battled” breast and kidney cancers and have a lot I could share about the subject. I agree with Joe Larabell’s contribution. When diagnosed with breast cancer, I was fortunate enough to be working with medical professionals and had incredible support and accessibility to a lot of information. To be sure, I fought with all the ammunition I could muster: surgery, chemo, radiation, and five years of Tamoxifen. I fought depression. I fought going out in public with my bald noggin sans eyebrows/lashes. I visualized my good cells fighting those damned cancer cells. I wound up with a blood clot in the recovery room post-surgery and then an infection. I woke up in the middle of the night in tears with the possibility I would die. Each time I felt despondent after a visit with my physician I would walk next door to the Children’s Hospital Gift Shop. When I saw all those little ones – some in strollers with hanging IVs dripping meds into them – I swore to fight this disease not just for myself but for others. I did not feel sorry for myself. Yes, as Joe indicates, “we all fight to survive at the very core of our souls.” And worst of all, several years later my incredible female surgeon who was much younger than I and had two school-age children “lost” her fight against cancer. We lost a top-notch breast cancer surgeon in her forties so I will continue to “fight” in whatever way I can against cancer. Everyone should feel comfortable using the metaphor works best for them to get through an ordeal.

I've never had cancer and realize I cannot know what my attitudes and wording would be should that happen. These are instances where 'imagination' doesn't cut it.

All of the topics and discussions Ronni has brought to us these months (and the many before!) have often been learning opportunities and a large part of that lies within the comment section.

Today's responses especially. I thank every one of you for sharing.

Wow, let me think. I had cervical cancer about 50 years ago, in my late twenties. Did anybody say anything to me about it? I don't think so! I see myself then, so young, learning that I'd never have children, thinking about dying, and taking it as normal that no family member or friend said anything about it to me. Lots of flowers and cards and books and visits, no words. Now, I feel very sad for that young woman, so alone in a very, very frightening situation. I guess then and now, I'd just like someone to say something like, "If you'd like to talk about it, we can do that." No big deal, no platitudes or false assurances, just a nod at the reality in the room.

My volunteer partner at the ILR is now in palliative care.

I don't know how much time she has.

Her daughter emailed me the news.

There are no words that will make this go away.

Just emotions.

Thanks Roni for the opportunity to share. In 2014 I was diagnosed with a very rare type of lymphoma. It is not curable but treatable. I am just appreciative of the people around me who want to offer any support they can. Some of them in the midst of their own struggles. When the person reaches out with good intentions I am grateful. I don’t always choose the best approach myself even when I want to be helpful. Pat G

I recall a time, maybe in the 1970s, when the advice in popular magazines was for those undergoing chemo to employ visualization during the infusion - visualize men with weapons charging in to do battle with the cancer cells. I wonder if that is where the "fighting cancer" originated? Another popular technique from years ago instructed people to listen to comedy tapes during the infusion. I have not yet experienced cancer, but that is more up my alley. I guess, true to my sixties self, I'm a lover, not a fighter.

Such an amazing discussion. I’ve not had cancer myself but like just about everyone, I’ve has several family and friends who died from it. My younger sister was diagnosed with stage 4 colon cancer a year ago. She says she is trying to coexist with the cancer. She says that after all, when she dies so do the cancers. So it’s in the cancer’s best interest for her to live. She rejected the battle language from the beginning. She does her chemo treatments and works with alternative therapies to mitigate side effects and stay as strong and healthy as she can. So far she is holding her own. Everyone is different of course and should choose whatever works for them.

I don't use any of the fighting or battle metaphors either. I prefer to say that I am living with cancer, or in remission, as I am currently.

Those images feel violent and leave room for the patient to feel inadequate if she can't will her body to reject the cancer. If I wasn't directly responsible for getting cancer in the first place, I'm pretty sure that I can't just force it out of my body with aggressive thoughts.

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