The Unspeakable

I've been on vacation this week relaxing on the shores of Florida...the Atlantic side. We went with our friends that generously have shared their seaside home with us many a time. This time we had the pleasure of meeting a few of their friends. I don't how many of them knew my circumstances. You know the one I am talking about, right. The Big C...the big unmentionable C. The elephant in the room. The don't ask don't tell code of anal cancer sufferers everywhere. If they know they're not saying and I'm not telling. I am on vacation and silence feels golden.

Silence, when it comes to stigmatized cancers though, is not golden. Oddly, even to  an advocate like me, silence feels comfortable. Dangerously comfortable. Did you know that 22,000 women a year are diagnosed with pancreatic cancer? I read that in an article while I was killing time on my iPad waiting for everybody to get ready for dinner. The fact surprised me. The number is tragic. It struck me as so and I said to whoever happened to be in earshot "Did you know that 22,000 women a year are diagnosed with pancreatic cancer?" "Really?" was the response of my dear friend San. And with that response, magically, my golden silence was broken. I spouted a fact back. "That's more than four times more than anal cancer." There. I had said it. He turned to me and said "Wow!"

This got me to thinking about my comfortable silence. There is nothing comfortable about cancer. There is nothing easy about it. Everybody has an anus. What? You're not comfortable with that, are you? I sense it. Anus is like the word bowel or colon or testicular. They make people embarrassed. It's interesting that breast cancer doesn't fall into that category. Those warriors have fought past that already and now people wear the word on t-shirts and bracelets and baseball hats without awkward shame. I still feel the shame when I admit I have anal cancer. I choose to rise above it and the stigma that surrounds it everyday. I confront the judgement of others with the facts surrounding anal cancer. I am but one voice rising up for the many that feel too unfoundedly ashamed. I know there have to be others like me that attempt to rise above, press on and be bold about the unspeakable.

Join me on my tweet-chat this week: #TreatDiariesChat on March 26th from 7-8pm CST to bring to light stigmatized cancers and ways to cope and find support. Come chat with me!

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Michele-- I agree! Speaking up is necessary if we are ever going to bring anal cancer out of the shadows. I don't tweet, but if I did, I would join in your chat. I hope it goes well! Hugs-- Martha
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Michele - I also agree that speaking up is necessary....listen none of us I believe would ever think that you could get cancer in your anus! It is one part of the body that we all take for granite until something like this happens unfortunately. People that have not experienced what we did are just(sorry for the term) ignorant to what it really is. People are just not educated enough on this and other rare cancers. They think it is dirty and it isn't. I also would join your chat but I don't tweet either. Let us know how it goes. You are truly an inspiration and we all love you! Nancy
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Maybe we all have to learn to tweet! I realize I must. Sadly, at that time I will just be coming back from the memorial service for a young (42)woman friend who died of an apparent heart attack this week. And the next day a service for another colleague who died of lymphoma at 49. Too many!!! But Michele, let us talk more about this, I too am tired of having a cancer whose name provokes shame in many people (and I strongly suspect it is also because much of the initial reporting after Farrah's death focused on anal sex - and to this day many articles, and even doctors, insist that anal sex is the primary risk factor. Even if it were, so what, but in fact it is not!!!) DO NOT feel shame!!! I try to remember the Group W Bench and laugh about it. We are barely in the initial stages of understanding HPV infection and how the gigantic family of viruses of which it is a member operates in the world. It's not just human beings who are infected by the pappaloma virus family. Sixty years ago the New York Times would not print the words "breast cancer." Had to refer to "severe chest disease." So perhaps we can hope that if enough of us say something all these pruderies will disappear.... Thank you for starting this conversation.
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Can you imagine what people would think if you put ANUS on a t-shirt? LOL!!!
I have one that says Anal Cancer....that's a whole other blog girlfriend!
Nice!
Over the course of the year I've slowly come around to saying "anal cancer" to anyone most of the time this discussion ensues. And now I'm saying "HPV". That was tough. I've been telling myself it's not my issue if it makes someone else uncomfortable. The more I say these words to others (and by default to myself), the more comfortable I'm becoming. Slowly, I'm quelling the stigmatization of these words in my own head. But, for me, it really seems people hear the c-word more than the a-word and open their hearts. Of course those a-phobes out there will always be there. And, I still have a bit of that a-phobia myself, but I'm working on it. I'm heartened to know others are on this path, too.
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I tell people when it comes up that I had anal cancer, but I still feel embarrassed and feel the urge to say I have only slept with a couple of men and never had anal sex, but I don't - I think so what if I would have - I still didn't deserve cancer. then I watch them look at me in disgust.
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The disgust should be for them!!! I'm disgusted by them!
I have always told people of my cancer type. I never knew it could be from anal sex until a GP friend of mine made a comment when he first heard of my cancer. I looked it up and felt like phoning him to say I have never had anal sex and I was quite hurt that he made that comment. Now when I tell people I just say what type and that it is a very rare and unusual one but fortunately it is one that can be successfully treated. I the emphasise the "daily six week chemoradiation" & they then go all sympathetic!! Annabelle
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How true, Michele! Good grief, some folks seem to equate anal cancer with Leprosy. When I talk about my cancer I see varied responses. "Bone cancer? That's painful isn't it? It came from the prostate?" What many want to ask, is "How long are you going to live?" I like to talk about cancer. It helps me cope. Pain? Not so bad. How long will I live? As long as I'm supposed to. Ron
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Michelle, I share with anyone, I have/had anal cancer and if you have a hemorrhoid like I thought mine was you might want to have it double checked...I hope it might help someone sooner then later...if they have a problem and think its TMI...it is there problem not mine...Jeanne
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You made me cry. I have/had (whatever) NHL which is very common with no stigma and I still can't talk about it. Everyone knows of course since my hair disappeared last summer, but I do not mention it in converstaions. It makes me feel...dirty....tainted...diseased. I'd rather tell people I have an std than say cancer. Your post inspired me. Thank you.
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Hello Michele...and THANK YOU for your blog! I was diagnosed with Stage IV in February of last year, at the age of 44, which had mestastsized throughout my liver. I began with 18 rounds of radiation and one year later I continue with my bi-weekly chemotherapy treatments. I am delighted to have found your blog. I have spent the last year scouring the Internet in hopes of finding individuals who are in similar circumstances with whom to connect. I am sure you know how difficult this is. I am amazed at the information available is either dated or skirts around anal/rectal cancer and tries to lump it with colon cancer or it relates to aged patients...it just isn't terribly relevant. Crazy that it takes a trip across the ocean to the UK to find others in our situation. I, too, feel the stigma of sharing that I have rectal cancer...it seems to really quiet people. I truly look forward to hearing more from you...learning of your experience. There has been no prognosis for me...they tell me that a woman my age, no history of family cancer or any sort, healthy lifestyle, etc...that they just don't know. I realize everyone is different...and perhaps having an idea really wouldn't change anything, right? Thanks for listening...I hope to glean more from your blog! First breakthrough I have had in....well...a year. Truly felt as though I was the only 40 something year old woman with rectal cancer...in the US anyway! Regards Michele!!!
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Well stated.
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Vital Info

Posts

October 3, 2011

Click Here

January 31, 1963

Cancer Info

Anal Cancer

Squamous Cell Carcinoma of the anus

February 5, 2010

Stage 4

2.1 - 3.0 cm

Grade 3

No

As much as possible

Proceeds from my published blog donated monthly

It is a thief

You have to live every day of your life and stay positive :)

Donate $$ to the anal cancer foundation. Raising awareness saves lives!

Is there anything good about poison?

Bone, lung recurrence 9/20/2012

Cancer Center of Kansas, MD Anderson

Bland diet, sitz baths, take your drugs...nobody gets extra credit for suffering.

Talk, talk, talk to somebody. I chose to write.

April 20, 2010

September 20, 2010

Rectal bleeding, itching, sciatic pain. (thought my hemorhoid was acting up)

My blog has been published and proceeds go to The HPV and Anal Cancer Foundation. http://tinyurl.com/72bjjfp

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