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.

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. 

Young adults and cancer

I read an article on the Atlantic about the plight of young cancer patients. First of all, please do not use the word 'plight'. A plight is defined as: a condition, state, or situation, especially an unfavorable or unfortunate one. To me its another one of those sneaky, snarky labels with negative overtones. And the article also calls them survivors which is not my favorite term as well. A double negative for me.

Yes, life sucks after a cancer diagnosis. Particularly if you are younger and there are no others around with cancer to help you cope. I was one of them and I do not think that I had a plight. I had a life to live and figure out.

After cancer at any age, you are left with a mangled body, soul, and finances. I was luckier than most as my cancer did not require chemotherapy at age 19. My finances were covered through my parents' health insurance but I had the body and soul of a cancer patient.

Well back to the article. I did like it. I did like the information provided about the issues a young cancer patient is left with. If some one at age 20 is diagnosed with cancer, in addition to everything else, they are left with deciding what to do with their future. Maybe they were in college and were planning a career, now they have to decided can they finish their studies as previously planned and then go on with their career.

What about dating and children? Would a potential partner be turned off by their scars and medical history? Are they now damaged goods in the dating world? If you are diagnosed at age 60 which is somewhere closer to the average age at diagnosis for most, dating and children are no longer an issue.

And finances - take your average post college debt and add on top of that medical bills. Where does that leave the young adult with cancer starting their life after cancer?

Finally, how do you repair the damaged soul of a cancer patient? I can tell you it can take a very long time before you want to open up and talk about your medical crap with anyone - even a therapist. Healing is difficult, long term, and deeply scarring.

So next time you see a teenager or 20 something at the oncologists office, think about what they are going through and where they are starting the rest of their life. How do they get a to a new normal for their adulthood if they never had one in the first place?

World Cancer Day

Today, February 4, is World Cancer Day. The target of the day is to Debunk the Myths surrounding cancer.

World Cancer day started a few years back. They presented signatures to the United Nations in 2011 with the goal by 2025 of:

There will be major reductions in premature deaths from cancer, and improvements in quality of life and cancer survival rates.

I like their way of thinking. They set up a list of targets and this year is to Debunk the Myths. You can go to their website and see more details on the myths and their other targets.

To show your support for this day, if you had cancer you are supposed to wear purple. Hmmm.... Isn't that labelling? I hate labels. I am not the S-word. But I want to show my support.

Today I am taking a family member to chemotherapy so will be hanging out in the oncology department. How much purple will be there?

My compromise is a purple patterned shirt and purple undergarments. Am I a weenie? I'm not sure. I just hate the labels.

I digress. Today is World Cancer Day.  Show your support by learning more about it and seeing what you can do to help.

The transfat debacle

The FDA wants to get rid of transfats because they are bad for us Americans and cause all sorts of problems. I don't have a problem with that because they are in things that either I don't eat or can be easily made without them.

I used to use margarine but decided it had too many ingredients. Now I use unsalted butter. It has one ingredient - cream. I don't buy frozen pizza, microwave popcorn, coffee creamer and all sorts of lovely prefab foods including baked goods. It helps things retain their shape and improves shelf life. I prefer things that are fresh with few ingredients.

McDonalds has gotten rid of transfats so you can safely eat their fries. Dunkin Donuts seems to have removed transfats from their donuts. I am sure other chains have done the same.

Skip the frozen pizza - either order it delivered or make your own from scratch or use the premade crust available at the deli. Microwave popcorn - a/k/a chemical popcorn - can easily be replaced by a little brown paper bag that you used to use to bring lunch to school and 1/4 cup of kernels. Fold the bag sealed and put in the microwave for 3-4 minutes. Voila its chemical free. Melt some butter separately if you really want.

My absolute favorite, horrible for me meal that I eat rarely is fried clams and scallops with onion rings and fries - my husband and I split a plate - and we get it at a place which fries everything in lard. Lard doesn't have transfats either.

My gut (haha) tell me that the place that would take the biggest hit if transfats were removed would be the frozen prepared food section of the grocery, the premade baked goods in the grocery, microwave popcorn, and the fancy creamers that go into coffee. Could we live without these? Probably fairly easily.

I am with the FDA on this one.

Once Burned, Twice Shy

When you tell someone you have cancer, you can rightfully expect anywhere in a range of emotions. Anywhere from, 'oh, that's too bad, my uncle died of it'; taking a step back 'I am late for an appointment''; or, the ever thoughtful, 'how long do you have?' Occasionally you get a nice person who recognizes that you have just been giving a life changing diagnosis and treats you normally and says something like 'can I help you at all?'

 After dealing with that for a few decades, you can understand I can be a bit reluctant to bring up new ailments, like rheumatoid arthritis and fibromyalgia. But tentatively I have talked about it. I have had quite a range of responses. From a rather outspoken co-worker 'ow, that's a bad one'. From others at the gym 'and you are still here working out, that's great'. Or from friends 'when will it get better?'

In other words, I am pleasantly surprised at the positive responses. I think somewhere inside, I was expecting the people to react the same as they would to a cancer diagnosis. Because it was a big change in my life, similar to a cancer diagnosis.

With the long weekend I allowed myself some downtime where I could contemplate while knitting and watching the cat snore (that's the height of my multi-tasking abilities these days). This gave me time to think about the differences between the two words: cancer and rheumatoid.

Both are life altering. Both leave you changed forever. So why does one have to make people run away?

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.

Toxins

Toxins are everywhere. We need to stop breathing, eating, drinking, sleeping indoors, sleeping outdoors, exercising, sitting, standing, or walking to protect ourselves. They are evil. They will kill off the human race.

Therefore I am glad to see that the NIH is going to ban a bunch of toxins. Actually they want to be able to ban up to ten toxins each year. But which ones?? They don't tell us which ones they want to ban. They want to ban some. How specific.

Now PCBs have already been banned because they are carcinogens. But the elementary school I attended for six years has been found to contain high levels of PCBs and will be rebuilt. Is there a correlation between going to school in a building with PCBs and getting cancer twice? I have no idea. But my point is (and I always need a point) is that just because something is banned doesn't mean it still won't be found and have to be dealt with (in some VERY expensive way).

DDT was banned and now we have Bald Eagles again so there is a track record of success.

But going back to the NIH, we need a little detail here. They want the arbitrary ability to be able to ban up to ten substances a year. While I am all for banning bad things, I think they need to have to reach a level of credibility to be able to ban them. They can't just say 'we think it might be bad' they need to be able to say 'we know it is bad and this is why'. Otherwise, it might just be a little too much power and we'll all end up living in caves again.

Words, take two

I posted yesterday about how I don't like certain words to describe cancer and dealing with a diagnosis. A comment in reply did point out that some people actually feel empowered by them. This is a reminder that every one is different and every cancer is different. Just because I don't like something doesn't mean everyone else doesn't. And what works for me doesn't work for others. Well, doh!

Otherwise, I am doing okay. I am still dilemmaing about my ankle - surgery or no. Sometimes its fine and sometimes it hurts. Like right now while lying in bed. I am undecided. I heard back from the lymphedema lady and will be going back in to see her. Puffiness in my hand isn't a good thing and its been happening fairly regularly. My back is having good days and bad days.

Today I am making a positive step. I need to lose weight. I have to lose weight. What I think is the right thing is not working. Today I am going to see a dietitian to see about getting me back on track. I am optimistic here.

I am also off to work this morning. I got there yesterday and they had minor flooding, a damp modem, and no internet or email. I can only be so productive but when updating websites, I kind of need that internet thing. I will call in a little bit about going today.

Finally I had a phone interview last night for a job I interviewed about a few weeks ago. I actually was called to set up an interview but ended up spending 30 minutes on the phone and will go meet them Friday.

So right now I am procrastinating in bed because I had another bad night's sleep. Which leads to crankiness - especially when one's husband holds the remote control out of reach and starts putting the tv on annoying infomercials in an effort to get me out of bed. Grrr! I won't get mad, I'll get even - one of the joys of marriage. Perhaps we will watch a few cooking shows or he can hold my purse while clothes shopping or something. But I am awake now and that's the whole point.

When words don't work

Dana Jennings nailed it here with his discussion of words used to refer to cancer people. I really dislike the word survivor, victim is not even worth mentioning. I am not battling anything. I AM A PERSON LIVING WITH CANCER AND TRYING TO KEEP MY LIFE TOGETHER AS THE NEW ME.

I have long since decided that when I die many years from now, I will have prewritten my obituary which will not include any of the ridiculous words such as battle, victim, survivor, etc. It will discuss life and what I like to do.

Also, no cancer is a good cancer so don't try to tell me I had a good one. The impact of cancer is that you are treated differently for life. Doctors put you at the front of the 'should we check for anything else' line.

I think his article touched a nerve here with me. Hmmm.... Okay, off to work this morning, driving around the soggy New England landscape - 9" of rain in 3 days has led to a tiny bit of flooding. But I'll wear my boots. What's worse? Cancer or getting my feet wet? Its all a matter of perspective.

National WHAT Day?

Today is National Cancer Survivors Day. Well, lah-di-dah. What if we don't want to be part of it? First of all, I really dislike the word survivor. It is a label (as I have said many times before) and I think it implies that once you become a survivor, you are over it. Well, in cancer-speak, they say things like - remission - where cancer is inactive or no evidence of disease - which means they didn't find anything. But they never say cured... because there isn't one.

I did mention this to my husband and he said 'Happy National Cancer Survivors Day, honey'. I replied 'thanks, but I hate the word survivor'. His response was too true 'well, its better than unsurviving'.

So anyway, I digress. I dislike the label but though I would check this National Cancer S-word Day out. Well, I can't find anything. There apparently are events but you have to call and ask someone. I did call and got a nice recording that said they are unable to take my call at this time. Obviously I won't be attending an event. I can't buy any merchandise either because I am not registered. And merchandise needed to be ordered by April 3. So much for National Cancer S-word Day. I can't find an event, I can't order anything, I haven't seen ANY announcements about this until yesterday on all my cancer websites (and believe me I waste a lot of time on them). I guess I'll find something else to do with my day.

This means more time for gardening, going for a walk, a little shopping, and taking care of the cat. Poor kitty. He really doesn't get around well. Very distressing. But he is eating like a pig (when is focused on eating his canned food, he makes little grunts as he eats). So he may not have much quality of life but he is pretty funny.

Recombobulated today

Well, I think I am. Yesterday morning my brother was here with my older niece (10) and nephew (9). My nephew woke up early and had some cheerios. Then I offered oatmeal. He picked out the flavors and I made it. Then he wouldn't eat it. My brother woke up and we had to carry the old table in the corner of the dining room to the basement and bring in the three sections of the new table (my grandmother's). We did this working around my nephew and his oatmeal. Then my niece woke up and my brother was making her oatmeal. I said 'why boil water when you can use the microwave?'. Voila, the answer to our problems. My nephew has never had nuked oatmeal and that is why it was different and he wouldn't eat it. How was I supposed to know? Any how in all the confusion, I never really read the paper or watched the news - what I usually do in the morning to wake up slowly.

Today, I will go for my walk and read the paper. I have already watched some of the early news. I am drinking coffee and going for a walk. Then I have to go to work, come home and work for contract stuff and leave to go fishing for the weekend.

This will be interesting. It is for breast cancer survivors (I hate that term - call me a breast cancer person instead). It is free. It is catch and release (someone else has to take any caught fish and release them for me). If it is awful I can claim gall bladder attack (see how convenient this could be?) and hop in my car and go home. I have heard very good things about these retreats. I expect that I will not catch any fish. Fly fishing in salt water???? But the weather forecast is relatively good. And its on the ocean in August on Cape Cod. and its FREE.

Unfortunately, Walter comes home tomorrow while I am gone. Poor planning but originally he was coming home on Sunday but then his flights were changed. That's okay. He will have a day to take care of stuff that accumulated while he was gone.

Now I did have another rocket scientist (or Darwin candidate) sighting the other day. Okay, well maybe just a stupid idiot. I went to the library. I parked next to a big ostentatious SUV. They had left it running. Why idle a parked car??? Hello, gas is expensive these days? Well, they did because their dogs were in the car. Maybe they should have either left the dogs at home or parked in the shade with the windows open. Stupid idiot.

Another Darwin candidate rode his bike yesterday. First, he slowed down at a red light and then ran it. Then he made a left turn in front of me without looking for traffic. I did stop to avoid him but I am not really sure he even noticed there were other vehicles on the road. Unfortunately, I believe there are more Darwin candidates and rocket scientists out there than we care to imagine.