A Well Explained Reason for Ditching the S-Word

I hate the S-word. I am not an s-word. I am a person living with cancer. Its always just bugged me. A lot. I hate the fact that ACS designates anyone who has been diagnosed with cancer as an s-word.

But finally I found someone who really explains it well as to why you should ditch the s-word. I was catching up and finally reading a copy of Readers Digest from last September and came across an article called "Don't Call me a Cancer Survivor". The author is a hospital chaplain for the last three decades or so and was diagnosed with breast cancer in 2005. With her diagnosis she learned a lot.

"One surprising thing I found was that only a small part of the cancer experience is about medicine. Most of it is about feelings, faith, losing and finding your identity, and discovering strength and flexibility you never even knew you had. It’s about realizing that the most important things in life are not things at all, but relationships. It’s about laughing in the face of uncertainty—and learning that the way to get out of almost anything is to say “I have cancer.”"
Upon her diagnosis she was instantly given pink ribbons, told about the upcoming walk, luncheons, and more. Someone actually told her that her cancer diagnosis was her 'wake up call'. (She wanted to hit him but couldn't because it was right after surgery. I would have hit him for her if I was there.)

She realized that being a cancer s-word was taking over her life.

"That’s when I told myself, “Claim your experience; don’t let it claim you.” We know that the way to cope with trauma, loss, or any other life-changing experience is to find meaning. But here’s the thing: No one can tell us what that meaning is. We have to decide what it means. And that meaning can be quiet and private—we don’t need to start a foundation, write a book, or work on a documentary. Instead, perhaps we make one small decision about our lives that can bring about big change."

She did move on and became happier. As part of being a chaplain she sat with many cancer patients through their treatment. She also got to see her former patients later to see how they were doing. She met with one woman and her daughters to learn that she was now NED. She started telling her story of diagnosis and treatment again and that emotional roller coaster.

"At that moment, her daughters stood up and left to get coffee. I handed the woman a tissue and gave her a hug. Then, because I cared for her, I told her, “Get down off your cross.” She said, “What?!” I repeated it. To this woman’s credit, she was able to talk about why she was clinging to her survivor identity. It got her attention, and people took care of her, for a change. Now it was having the opposite effect and pushing people away—they kept leaving to get coffee."

That is exactly my point. An s-word is not a person. Its a label. It might help you get through treatment but its not you. Let yourself deal with the experience and go on with life. Do not let you become someone who you aren't.

I Am Not A Warrior

I cannot begin to tell you how much the tv commercial for the Avon 39 annoys me. "Warriors Wanted" is so awful on so many levels.

The woman in this ad who is the 'warrior' doesn't look anything like your typical breast cancer patient. She is too young and looks too healthy. Maybe she is supposed to be walking for someone else. But sorry no. Also, wearing a low cut tank top is not the best attire for a long walk. You want sun protection and a hat. I think the Photoshopped 'pink' does nothing for her as well.

Finally, the whole idea of being a warrior is so out of touch. For me it has the same implication of the s-word. There has been a lot of push back from the breast cancer community on the terms used to describe people with cancer. The s-word, and all the 'fighting' terms are not appreciated by many people with cancer. And they are all a bunch of labels to me anyway.

I think they need new copy writers to come up with new terms that are acceptable to the cancer community.

Post Cancer Survivorship

So Becky over at BC Becky blogged about developing her post cancer survivorship plan. (Personally, I hate the S word but will suffer through it for this blog post, using it as Becky's word not mine.) Other people call it their new 'normal'. I have found it very elusive. And basically think its a crock of sh*t. However this morning I started thinking (which is dangerous) while reading Becky's post.

I have no way of reaching a new normal because I was living my new normal, post cancer since 1981. I have no way of knowing what it would be like to be an adult without cancer since I was 19 and in college at my first diagnosis.

I always forget this. I am not sure how I am capable of forgetting this. I think I keep going on the bandwagon of let's find our new normal. But I was already living the post cancer 'new normal'. This begs the question is it possible to reach a 'new normal' for a second time?

Along with hating the S word I also have a problem with the blankety-blank 'new normal' concept. But in this case, I may have found the reason why I hate this so much because I have been living it all along.

So this begs the question, what would I be like without cancer? I have no idea because I never really had the change. So you are stuck with me and my post cancer self.

I forgot to get excited

There were two recent events where I forgot to get excited. First I forgot one of my cancerversaries last week (9 years if you care). My other cancerversary is in August and will be 35 years. I try not to focus on them in my life. My life is not about cancer. Its about me. And I don't want to focus my life on cancer.

Then I forgot National Cancer Survivorship (S-word) Day which was yesterday. I seriously think this is a 'Hallmark' holiday. Something some marketer came up with to sell more 'crap' (I mean 'stuff'). Are people supposed to send cards, chocolates, and flowers? Should we have parties with balloons, cakes? And can we name it without the disputed S-word?

I didn't get excited so I really just forgot them both.

Language Please!

I am not very happy with the language used to describe people who are less than healthy. Just like the mental health community has changed their words to avoid calling people the "R-word", we need to get rid of some other words as well.

I'll start with that awful S-word, the one to describe people with cancer. Ditch it. Please. I didn't survive anything more than a boat load of doctor appointments. And by the way you can get rid of all those war-related ones too. The B-word (battle) is another awful one. Fight? Fighting a cold is okay because I think its a short term inference and I can live with that. Fighting cancer? Not so good.

Next there is another S-word, we'll call it S-word2, or 'Sufferer'. First of all its hard to say. Eat some peanut butter and try to get it out. I suffer from pain, not a disease. And don't call me that word either.

What are good words to use? I can be someone living with cancer, rheumatoid, or fibromyalgia. Or I could be an arthritis patient. But I would really just like to be a person, not a statistic, a number, a survivor, a sufferer, a battler. Just a person.

Cancer language

I recently read about more offensive language of cancer. Where do people get these ideas?

I know then President Nixon declared a war on cancer in the early 1970s. Fine, have your war on cancer but sending in armies of scientists and doctors to research it to death and kill it off. But the people with cancer? We are not at war, we just want to stay alive.

I really dislike the S-word. Why? Because its a label. I am a person; I am not a label. You can describe me by saying words like short, slightly flabby, or something else, or even smart or other nice words. You can even say slightly cranky or pushy or assertive. You can also say I am a patient and a frequent flier at my local hospital. But I am not a survivor. All I have survived is a billion or so doctor's appointments and medical misadventures. Okay, you can say I have survived driving in metropolitan Boston for the last few decades. Sometimes that's a daily demolition derby.

I didn't survive cancer. With cancer, you can achieve remission, partial remission, or have NED (No Evidence of Disease) status (which is me currently). But you are never told you are cured. If you are told you are cured your doctor must be stupid a miracle worker because there is no cure for cancer. Well okay, there are a few cancers that can be cured but definitely not all. You will spend the rest of your life being 'best buds' with your oncologist, endocrinologist, or so other specialist.

Now the CDC in its infinite wisdom as a part of our government has launched a new program called Bring Your Brave, which is a breast cancer awareness program for young women. Really? I find it almost as offensive as the boobies programs that are out there. Bring my brave what? My brave face - the one I wear when my doctor is about to give me bad news or I am heading off for another surgery? My brave suit of armor when I have to deal with a bunch of nitwits somewhere?

And why does it only focus on breast cancer? It would be much better to have a cancer awareness program for all types of cancer for younger adults. Most do not expect to be diagnosed with cancer and have their world upside down.

For any other ailment, you are a patient or a person. This patient has a complication with their cardiac surgery. Or 'this person has an ulcer', or 'congestive heart failure', or 'strep throat'. Why can't we say this patient has stage III pancreatic cancer? Why does it have to be 'this person is fighting metastatic brain cancer' or  this patient is a breast cancer survivor'?

These war words are the obscenities of the cancer world. Fix your vocabulary people! Thank you. 

Its a life, not a fight

Cancer is not a battle, or a war, or anything more than someone's life. Finally there is some research backing me up. New research says that calling cancer a fight can be negative for the patient. Yes, negative.

War connotations lead to feelings of failure. The blame gets put on the patient. Who gets the guilt and sense of failure if they face further progressions in their cancer - which is completely beyond their control. Guilt and failure do not lead to happy people who are willing to take care of themselves and adopt healthy lifestyles. They lead to depression and more.

President Nixon declared a war on cancer. The American Cancer Society calls us survivors from the point of diagnosis. But they are wrong. It is not a battle or a war. It is a life.

So take that battle, war or whatever it is out of the equation. Stop telling us we are survivors.

All I survived is a boatload of doctor appointments. Nothing more, nothing less. I try to stay positive but do not try to shift any blame onto me.

This annoys me

This really annoys me to no end. I get all sosrts of emails about cancer, people with cancer, research on cancer, and 'exciting' news about cancer fundraisers and other things.

Recently in these emails, there have been

• cancer sufferers
• cancer victims
• cancer survivors.

Since when with people with cancer become sufferers and victims? I detest the word survivor as well but sufferers and victims? Really?

These were included in the titles of actual news articles. The reporters need a bit of sensitivity training I think.

The S-Word

I promised to blog about this recently and forgot (because of chemobrain/fibrofog - now I have two things to blame) but I was reminded yesterday. I am at a cancer related meeting for a couple days in Virginia. It is full of women who have had breast cancer. They all used the S-word to describe themselves. I did not.

I really dislike the S-word. It is a label. Is it supposed to give someone a false sense of hope to hang on - that they too can survive their cancer diagnosis? Ha! It does nothing for me.

In my life, I have survived MANY doctor appointments. I have survived EIGHT surgeries. I have survived several 'interesting' plane flights.

Dictionary.com defines Survivor as:

1. a person or thing that survives
2. Law . the one of two or more designated persons, as joint tenants or others having a joint interest, who outlives the other or others.  
3. a person who continues to function or prosper in spite of opposition, hardship, or setbacks.

In no way does  it include the word cancer in pertaining to surviving.  If I use definition #3, function or prosper in spite of opposition, hardship or setbacks. Cancer might be considered a hardship - especially while in treatment. Opposition I think of in more of a societal or political context. Setbacks are job loss, or something like that. 

 

Cancer is a disease. So is the flu and the common cold. Do you get to be called a survivor if you recover from the flu? Then there is that stupid 'Survivor' TV show. Where is the correlation between having cancer and winning the tv show? 

Perhaps the whole term is slightly over used. If everyone is a survivor, no one is because we are all equal. So stop sticking it on people who have a cancer diagnosis. It doesn't make me feel all warm and perky inside because I have a label.

Cancer events

I have mixed opinions on cancer conferences or events. Yes you get to meet other lucky people with cancer and listen to perky speakers to try to provide an optimistic view on your cancer. I attend them but sometimes leave feeling I was either put on display (she is someone with cancer and has to wear a stupid tshirt, wrist band, pin or whatever that denotes you as a person with cancer, usually with the s-word title) or been seen as a marketing opportunity. And the ones which put the cancer people in a special group and are showing their support of them by segregating them and encouraging everyone to cheer them on, are the worst. I really hate those and attend as few of these as possible.

These groups have the best of attentions and assume all of us with cancer want to be special and applauded for our 'battles', 'fights', 'strength', 'courage' and all sorts of other little tags. But some of us don't want that special attention. If I am going to tell someone about my life with cancer, I am not going to do it with a label or as a group, I'll talk about it one on one. It is interesting, if I participate in these events as a volunteer as opposed to an attendee, I have complete strangers coming up to me and telling me their cancer story out of the blue. But that is them one on one, not as a group.

But Friday I am going to a cancer event. It is a free conference being sponsored by the hospital I go to. It will include a presentation by my surgeon and oncologist on new personalized treatment in breast cancer. And a keynote session by the one and only Dr. Susan Love. I am going as an attendee. I am not going as a patient. I am not going as a person with cancer. I am going with interest in learning the latest. I do not expect to be singled out as a person with cancer. I do expect to be asked if I am a patient at the sponsoring hospital, and since I already am, I expect no pressure.