The language of cancer

Not sure if this has been raised here before, but does anyone else have an issue with the language that society uses around cancer?
Slowly being drawn into a world where medical terminology sounds like a new range in Ikea half the time and then you realise the same thing also can be called something else numerous times.
Then you have well meaning friends, family or just random people who use the standard Hollywood speeches of fighting cancer etc but standing back just in case it is catching.
Recently been diagnosed with polycythaemia vere and you read it is a good cancer to have. After the symptoms I have suffered for years and the cost it has had on my life, there is nothing good about it, except the “Oh that makes sense now” on reading the symptoms.
But back to the language and the question, do we need to take back cancer from Hollywood and change the language we use?
Polycythaemia vera (PV) is a life cancer with a rolling dice of options on health implications, so rather than a fight, I see this as a dance with cancer. It is part of me, makes me who I am and will partner me going forwards in my life.
It is teaching me new dance steps, new rhythms and melodies to live my life now, the future nurses and specialists, guest conductors.
Friends will come in and partner me when dancing the solo becomes too hard and a chorus line of support is needed.
Years ago, a friend died of cancer and she hated the terms fighting, beating it and now I understand why, it is not a fight or a battle, it is an negotiation of time, science and gene pools against a militant group high jacking your body.
Anyone else out there feel uncomfortable with the language society uses around cancer or is it just me?
What is the language you have chosen to feel comfortable with?

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Totally agree. Personally I hate the use of the phrases “fighting cancer”, “battling cancer”, “warrior” - some people will be treated successfully, others won’t but it’s not fair to suggest they “lost the battle”, it’s just that the treatment couldn’t overcome cancer.

My type of lymphoma and some other blood cancers which are “chronic” are treatable but not curable which is hard for others to understand (they have the concept of solid cancers which often can be cured via a combination of surgery, chemo or other treatment). I tend to say I am “living with cancer” but you’re right it’s hard to find the right language for the many different scenarios and different types of blood cancers we experience.

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@CaroleCW spoke to a friend about this and they suggested I get some polo shirts printed with the logo “Dancing with cancer” on them to start conversations with others.
Forgot about the warrior term, it makes me feel like we have been one lined into a red top headline for the readers

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Good Morning @clickinhistory and everyone else. I totally agree with you regarding the language of cancer.

I had a good friend who was “battling cancer”, in his case it was pancreatic cancer and his wife, also a good friend of mine, was very much against the use of terms such as battling or fighting as the outcome was pretty much preordained and she didn’t want to think of him as being “the loser” in that analogy.

I have a different Myeloproliferative neoplasms (MPN) to you; I was diagnosed with Essential thrombocythemia (ET) back in March 2018 having suffered a serious (is there any other kind?) heart attack 6 months earlier, aged 52, and I tend to use the terms living with, coping with, or existing with my cancer, depending upon how rough I am feeling! :rofl:

My life has become different in so many ways since the day of my heart attack although it did take a while for my “mindset” to adapt to the fact that things I had been able to do without a seconds thought now needed careful planning as well as an assessment along the lines of “is this worth the effort now?”

My own treatment regime consists of enough tablets to make me sound like a rattle, for my heart condition, a Pegasys Injection every 3 weeks for the Essential thrombocythemia (ET), and a B12 Jab every 3 months to help with my recently diagnosed Pernicious Anaemia.

All in all, the language that we use, and the “specialist language” used by the Health Care Professionals, is important to us all.

Take care, stay safe, be kind to yourselves and remember to keep on smiling.

Jimbo165

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Interesting isn’t it the use of language
Before cancer I probably would have been one of those saying fight cancer your a warrior you got this, you look so well, battle with etc etc
Sorry to hear you have this or that
Afraid to ask too many questions

I personally am living with cancer and since covid living my best life. I have always been open and invited friends family strangers to ask questions if they have any. Anyone that will listen I’m happy to give my story.

There will be people who like to battle and fight their mindset is already in that space and want to be doom and gloom
I have met many in hospital just like this.

I have also come across those in the living mindset making the most of each moment with fun and lightness smiling and im drawn to those people

The world is in a constant battle so changing society minds set around cancer isn’t going to be easy

What we can do is shine a little brightness sprinkle fairy dust on those who are around us and support us. If we sow the seeds of living those seeds will nurture and grow

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@Jimbo165 that is an interesting journey and the language and mindset you have chosen is a honest one, was going to write brave, but realised that is part of this auto learnt language response to cancer or any illness.
My brother has a blood issue and he was going through the list of vitamins, skin food and he too said it was shake rattle and roll in the mornings.
I was lucky according to the specialist as I had not had a heart attack over the previous years, though have a great ecg reading, go figure.
Mindset is all as they say and learning you have a random date selector on your sell by date, does make a rain drop look like a jewel if caught in the sun more easily than, bugger it’s raining again.
Take care and I hope you get a sponsorship with Colgate soon :slight_smile:
clickinhistory

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@2DB I guess that is the choice we make individually, to respond as society has taught us or to take a stand and find a lighter way to deal with it.
Friend who survived cancer put it as “cancer taught me to be gentle with myself and enjoy the good and the bad as much as you can, because they both count”
To change the world starts with us reclaiming the language and the viewpoint I guess.
I hope you are using eco friendly fairy dust these days :wink:
take care
clickinhistory

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@clickinhistory Thank you for your kind reply. I rely (possibly overly so!) on humour to get me through each and every day, mostly of the self-deprecating variety. My colleagues at work can usually tell when I’m not “good” as I become a bit withdrawn and I stop, in their words, taking the “p**s” out of myself. I don’t know what the words mean although I have heard them once or twice before! My heart attack wasn’t entirely unexpected, and I’ve been the only male in the family for 6 years now, but the cancer diagnosis was, as many others have indicated, a total bolt out of the blue. But it was also a contributory factor to my heart attack, probably along with my Dad’s dodgy genes; Dad had 9 heart attacks over a 4 month period (I was a teenager at the time) followed by a Cardiac Arrest (I took the phone call for that one as I was the only one up at that time of day, getting ready for school!) then after a few years he underwent a quadruple bypass (early 1980’s) then 2 years later had a stroke whilst driving his 2 day old car. My only male cousin dropped dead from a massive heart attack at the same age my Dad passed away, 65. Hence my saying that my heart attack wasn’t a huge surprise.

Life is what we make of it, and how we adapt to the unexpected and unwanted challenges that come our way, without invitation.

As the quote says “Life is not waiting for the storms to pass. Its about learning how to dance in the rain”.

I await instructions from Colgate! :grinning:

Take care and stay safe.

Jimbo165

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@Jimbo165 sounds like a plot for a series on gene pools.
It is getting the balance of dealing with the heavy with a lightness of touch without selling yourself short on the need for emotional and practical support.
I await my agents commission fee from Colgate :wink:

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@clickinhistory thank you for your kindness and support. I think I would prefer a swimming pool to the gene pool you are advocating!

Being a typical bloke, I struggle to ask for help, even from my daughters; they are all busy with their own lives and I don’t want to be a nuisance to them. Well, not yet at any rate!

Work are fairly good towards me, with my Line Manager being especially “watchful” about me, and making sure that I don’t overdo things at work. I think it’s mostly a case of protecting me from me. :joy:

I shall send you two tubes of toothpaste, as your agents commissioning fee, once the ink is dry on the virtual contract.

As always, take care, stay safe, be kind to yourself and remember to keep on smiling.

Jimbo165

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Oh @Jimbo165 your turn of phrase does make me smile, if only I could protect me from me!!!

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Thank you @clickinhistory and @CaroleCW for your wise words. I heartily agree with what you have said. In my opinion it isn’t helpful to use words like battling or fighting with cancer. As you have said it gives the impression that if we ‘fight’ in a certain way or are ‘strong enough’ then we will defeat the cancer in some way. This can leave us feeling like we have failed or done something wrong in the first place to even be diagnosed with a blood cancer. So much harm can be done by people using these unhelpful words. As others have said I like to say I am living with cancer and learning through cancer. I have certainly grown in certain areas through what I have experienced, not that I would wish it on anyone. Warm wishes, Willow x

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@Willow I agree, the energy it takes to live in that mindset of battle and warrior, its enough just getting your head around it without the fear of failing.
I feel that dancing with my cancer as a new life partner is my way of coming to terms with it. We will rehearse, stumble but with practice find a dance style to live with my cancer and its options on my future.
Take care

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I like to think that you can’t “lose” because when you die the cancer dies, so it’s a draw.

I also dislike the fight and battle and warrior stuff. Seems very American to me, but isn’t everything

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@Wullysamba A friend’s dad once said “I am taking this cancer with me”, so I like the idea of it being a winning draw in the end.
Think the terms we may have exported years ago and now they are coming back
Take care

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Might be worth bearing in mind that for many people, survivors and laypeople alike, the big C seems to be so much about debilitating treatments while hooked up to beeping machines and tubes and hair loss and all those horrific side effects, when in reality it’s not always so constantly grim.

When I tell loved ones about the treatment I’m having they seem relieved that it’s not as invasive as it could be, that it’s less severe than how it appears in the news, in TV, in film, maybe even from their experiences of others going through their own forms of it. I mean, it’s still pretty bloody invasive for someone who hates injections!

So I wonder if all this doom-laden language that so many use is due to the ways cancers have been presented to us as these epic battles for so long, hence the winning/losing lingo that gets bandied about. It’s almost a surprise when doctors are so blasé about treatments, I find. Like oh just pop these chemotherapy pills and see you in a few weeks, like it’s a bad case of heartburn!

I lost my point. I think it was something about how we need to update the language we and others use as our blood disorders need living with rather than personifying like they need grappling to the floor as if we’re wrestling them into submission or whatever.

Have to say @Wullysamba, I have never heard any of this battle language from the nurses and specialists and fellow survivors I meet over here in the USA, but then I’m in a progressive region where science is taken seriously. I’ve heard it more from folks here and in the UK who might not have any experiences of cancer at all and thus don’t quite get how advanced the science is nowadays, and unfortunately from people who identify as devoutly religious. Had to stop using an American blood cancer forum like this one as I kept getting bombarded by evangelical folks quoting biblical passages at me that sounded like QAnonsense. Go figure, as they say here!

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@Duncan That is the “entertainment industry” for you, a classic story out of the myth book, our glamourous/handsome hero, struck down by a rogue mutant, an invasive species that threatens to destroy this world.
Props departments cheer as they get to wheel out all those expensive machines that go beep or drone in threatening manner, our hero’s life a series of random numbers, lines, random letters joined to make up phrases defining conditions, chemicals, the invasive species, oh throw in the costume department, the cliches of the caring nurse, the annoying but genius doctor who will ride to the rescue, the shots of huddled people looking down microscopes while an army of fundraisers rattle buckets to fund the pay checks, the bit actors of family members, flashbacks to moments when life was happy, loving or those dramatic moments when life could have taken different routes, the lingering close ups of hope, love and pain echoed in Greek marble statues or reliefs of temples, the dramatic shots of the hospital exterior worthy of a place of religious pilgrimage(think Stonehenge at sunrise, but better transport links), and the AI written language of call and response of illness and human hope(Shakespeare meets Greek chorus), oh the guest appearances of the shaman or pagan witch, the crowd boos as the snake oil big company makes its way on screen… verses the oh take this pill, drop a pint of blood (feel guilty as it is tossed away and can not be used to save someone else) stay hydrated and let me know if your body trips you up before our next meeting.
War and Peace or a haiku? Which grabs the audience more?
To reclaim the language is to begin with educating the public, the entertainment industry, the media created hero’s of cancer(just don’t show the yukky stuff to our readers though) and ourselves not to fall into the language of rote and response.
Like homelessness, poverty, cancer is one of societies fears and if we must see it, can it be done that makes it a story of redemption or punishment.
Language is a powerful tool and one that can cut both ways.

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This song has long been a favourite of mine, but the lyrics have taken on a whole new meaning now, sort of the journey I have ahead with Polycythaemia vera (PV) https://youtu.be/vO3s-agMh8k?si=5OsHV1QtfX8dgjPd

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Ha that was quite the response! Unsure how to reply, other than to say I agree that representations of cancer in media tend to be overly melodramatic, when the lived reality is often waiting around on tenterhooks for yet another test result, for me at least.

I have enormous sympathy for folks who are tolerating far more invasive, repetitive, debilitating treatments with different, more horrible disorders and prognoses, which is possibly why I think this battle language seems inappropriate. As many of us have chronic blood disorders with remission not yet possible, I’d say the idea of maintaining a lifetime battle against non-sentient mutated genes seems exhausting! Better to learn to live with it, like an annoying neighbour perhaps.

Thanks for that Vangelis track, I’m off listening to the Blade Runner score again :cloud_with_lightning_and_rain::cityscape::robot:

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I agree with you completely @CaroleCW . I really dislike the term battling with cancer and certainly when someone is talked about after their death as they died after a battle with cancer. Using the term battle suggests that if we fight hard enough or for long enough, we will be able to win the battle. Unfortunately, and some patients with cancer cannot win the battle no matter how hard they fight and this can make them feel like they are doing something wrong .

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