I Am an Anal Cancer Survivor

When people learn that I have cancer they usually appear saddened and offer me encouragement often adding how “good” I look. When they learn that I have stage 4 cancer their sadness deepens and they tell me how sorry they are to hear it. When they discover that I have stage 4 anal cancer they appear shocked and either shut up or ask me how I “caught it” in hushed voices. Sigh…such is my life as a stage 4 anal cancer survivor. After four years you would think I’d be used to the stigma. Don’t get me wrong, I step through it every time. I am anything but ashamed of my anal cancer, ask anyone, but the stigma and shame as misplaced  as they are prove difficult to shake. Let me give you an example.

 

I volunteer at one of our local cancer charities that services all patients that receive cancer treatment in our city. I live in the largest city in the South Central portion of my state so we basically service half of the state. I am very involved in fund raising for this local charity and am dear friends with it’s founder and director. She knows my story and about all the work I’ve done to raise awareness surrounding anal cancer and to erase the unfounded shame and stigma attached. We were together at a local news station to promote an annual fund raising activity for the center and to educate on all that the center provides to cancer patients and their families. We were sitting in a small cluster of chairs off to the side of the production set with some other guests, one was guest chef with a cooking tip and the other was a couple of women representing a local women’s crisis center. Anyway, before we started taping the producer came over to brief us and talk to us about our segments. He looked at me and asked “Where do I know you from?” I reminded him that the station just did a story about me and my cancer to raise awareness. “You remember” I said “anal cancer lady.” “Oh yeah.” he replied. Then the director of my favorite charity chimed in and said “Don’t worry. She won’t talk about that.” “What?!” I thought. Even someone who knew me and loved me was ashamed of me speaking about my anal cancer. “Yeah, don’t worry.” I numbly responded. “What are you saying?!” my brain pleaded. But I kept my mouth shut. When we recorded the segment I stuck to the script. I had planned on doing that anyway but I was abruptly reminded of how deeply entrenched the stigma and shame run for anal cancer by not only my friends comment but my own actions (or inaction) as well. When I was introduced as a cancer survivor I just smiled and said yes and how exciting it was. I know that if I had some other form of “socially acceptable” or “popular” cancers that they would have mentioned what kind I had but they didn’t and I never said because I had already told them not to worry that I wouldn’t say the “a” word. I felt like such a failure in that moment. I mean, I was letting people down here. What was my problem?

 

Later that afternoon, while my husband and I watched the segment on television, I told him about what had happened and how I was feeling like an anal cancer advocate “loser”. He placed a comforting arm around me and reminded me that we have have to meet people where they are at and not where we’d like them to be. I nodded through quick tears. A while later I started to realize how entrenched the shame and stigma around anal cancer is. I have it and I still will shy away from saying it, like in that moment in the studio. Everyone who knows me or even knows of me clearly understands that I have anal cancer. I stand tall, head held high since day one. Every once in a while the shame, simmering just below the surface of my being, paralyzes me and I forget that it’s choice that I make to consciously step beyond it and say “I am an anal cancer survivor!.”

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This is just crazy, Michelle! Don't blame yourself or feel bad. You did nothing wrong. I personally would be intimidated about being on TV in general and that would probably paralyze me. I think most of us are raised to shut up and stick to the rules of conduct but I am surpised to hear the center director's statement that you won't talk about that! Unebelievable! All cancers deserve attention and funding. The pink cancers are trotted out because sex sells. If I had a dime for every time someone assumed my cancer was breast cancer, I could probably pay for at least one PET scan out of pocket. I have to remind them there are many types of cancer. If they really irritate me I start listing them and I love to use the "shocking" cancers first like anal and endometrial cancer. Anal cancer can be sexy too, in my opinion lol! They're marketing it. Your name "ihavebuttwhat" and other references I have seen (one member had a heart shaped like a butt as her avie) can make people feel more comfortable with this topic. Feel better in that maybe the "butt taboo" will someday be erased. I guarantee that lymph nodes will never be sexy so we lime green ribbon survivors may not be stigmatized, but we probably wouldnn't get much attention toward funding either if we hadn't become the caboose on leukemia's train. We can trot out the chirruns with childhood leukemia to raise money for both causes. It's sick but it works! Everyone wants to help a child with cancer. Hugs to you and thank you for all you are doing for your community and this site as well.
Michele, you are brave for wanting to discuss it in such a direct manner. I wish they would have let you because that's exactly what it needs. The word "Anal" needs to be untaboo-ified.

Let me give you an example... I was watching Deadliest Catch a few weeks ago. One of the crab fishermen complained that he was going to have to get off the boat on the next stop because of blood in his stools. I looked at my wife (I've read a lot of blogs here) and said, "He could have Anal cancer and I wonder how they will approach it if so." The captain was all up in arms because he thought the blood was no big deal...tough it out. Most of the people on these boats are real blue-collar, hard nosed dudes. Well the crew member comes back after seeing the doc, and he 'slangs' the explanation that has "Ass Cancer". When he said it like that, it sounded much less taboo for some reason. I can't explain it. Maybe it's that those guys curse all the time. I'm not saying that it should be explained that way, but it makes me think the word "Anal" itself is part of the taboo.

To bring it full circle, I think what you wanted to do is exactly what needs to be done. Until the word 'anal' or 'anus' itself becomes more normal to hear (usually the source of jokes), it is hard to break that taboo.
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Michele,

I think all of us with the "A" cancer have encountered this issue. I know sometimes I pick and choose who I think can handle it. Sometimes I say colon cancer , sometime colo-rectal cancer, somtimes I say just cancer... and sometimes I say loud and clear anal cancer! I had breast cancer when saying breast in public was very strange. You would think at some point I would have gotten used to the weird looks... but no, it is as much our perceptions as others. I think we avoid saying it as to not make other uncomfortable. I had an incident not too long ago where a girl who knew me (someone I had worked with for about a year) asked me what kind of cancer I had... I told her anal cancer and she started laughing...not just a little but hysterically laughing! Then she said to me that anal cancer was the last thing she expected to come out of my mouth! I asked her what kind of cancer she would be most comfortable with? Breast, colon, pancreatic, what would she prefer? That's when I realized that cancer is cancer, we will either live through it (and therefore live with it) or we will die from it. Either way does it really matter what kind of cancer it is?

Sorry for the long windedness...I think I needed to get somethng off my chest (or off my ass!) Whatever!

Always,
Maya
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Exactly. I do the same thing (based on who can handle it, or my assumption of who can handle it). With that said, maybe it's me. So funny, last weekend my mom and I were at the Chamber of Commerce doing a tasting (wine) and we were the only ones there so we were visiting with the lady serving. Anyway, she told us she was a breast cancer survivor of 8 years. My mom very freely volunteered the following, "We are all three "Cancer Survivors"! I had Endometrial Cancer, my daughter had ANAL cancer, and you had Breast Cancer and we're all survivors." For some reason the ANAL part was really loud. LOL Anyway no one SCREAMED out loud anyway. It's so funny how shocking it can be to hear that word out loud sometimes. Why? So weird. Anyway, let's just keep on keeping' on. I I'm proud of us all.
Cancer is cancer is cancer is cancer.....My daughter has thyroid cancer, not as "controversial" as a anal, not as "popular" as some of the others, and not as grueling as some treatments, although she has had four surgeries in three years and is looking at possibly more. And....people still die of it, although not many. Hence, pharmaceutical companies and other medical research organizations do not do much additional research just for that reason? I read an article that said thyroid cancer treatment and research was the same place that breast cancer research and treatment was 50 years ago. All cancers should have awareness and attention. Period!
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I know just how you feel. I too have almost whispered "Anal cancer" when people ask me what sort of cancer I had - most usually assume I had breast cancer. However I always qualify it by saying it is a very rare and unusual one and that luckily it is one that can be cured That seems to make them feel much better. I met a girl the other day who I don't see very often, at a fund raising for the local hospice. She asked me how I was and I told her I was three years clear. She then asked me what sort I had. I looked her straight in the eye & said "Anal cancer" She hesitated then said " You don't mind me asking or talking about it" I told her certainly not. Which we then did. I thought afterwards maybe I will be as bold all the time - we'll see. Hugs Annabelle
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I could cry that someone would dare to hurt your feelings Michele. Your the sweetest kindest loving woman that has been through so much and some people are never going to get there so you ain't never going to meet them... My thing with me has always been, because its throat cancer .. they ask if I have smoked.. when I say yes.. it's like well I deserve it then.. Then they ask if I have quit... I mean everyone says that to me..I have of course through the grace of God.. I actually quit before I knew I had cancer.. do i get brownie points for that.. ?.. I am praying for us all... big hugs and love Sabina
Wow, Sabina. My heart goes out to you. I believe people can be that cruel. I'm going to take a page from Michelle's husband's book and try to meet those people where they are...Those people that so summarily wrap your story up and say to themselves, "Oh, a smoker, yea, you earned the cancer." Well, maybe they do that because they are so afraid of cancer and so afraid of being and living in this space we are in, that the only way they can walk away in tact is to neatly package your cancer by saying smoking caused it, "I don't smoke, so I won't get that cancer". It's fear that drives people, including me, to be insensitive and selfish at times. I guess we meet them where they are and feel sorry for their fearful lives. We, on the otherhand, are not nearly as afraid as that because we are aware and alive. I taught myself something here. Thanks to you and Michelle's husband, and always, Michelle.
Well, your behavior in some ways just says you're not anal about anal cancer. :-) As much as we have to sometimes "fight", a person just has to pick their battles...There's so many out there. You can't fight them all. You just opted out of one. That's okay.
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Did your friend ever realise how stinging her words had been Michele? I have not noticed the stigma so much here (in Aust) as much as others on BFAC obviously have.. but that could also be because I'm not out and about there that much. I do generally encounter a curiousity given the 'rareness' of anal cancer though. Also generally, I have found too that if I'm up front in initially telling people I have Anal Cancer, not just cancer, they seem to handle it better. If they only know I've had cancer and then later ask whay type, they do seem a bit shocked on hearing 'anal'. Recently I was talking with two women who I knew were recovering from breast cancer. One told me she assumed I had breast cancer too. I said, no, I have anal cancer. she responded 'oh how dreadful for you!' the other said, 'isnt that what Farrah Fawcett had'? You have to know that through your story you have helped so many Michele! Please do not let the ignorant bring you down!!!
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I feel the same way- embarrassed, but the need to share to help people. It is such a frustration to be treated like less of a "real" cancer survivor. I guess we all have these experiences where people say STUPID things about anal cancer because they do not know what they are talking about. One of my worst stories was a crude physician I worked for that said "he didn't know I was that kind of girl" when I told him what kind of cancer I had. A damn doctor - really? What kind of girl am I? JERK - anyway thanks for sharing your story Michele. We are making a difference for the cause little by little
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If breasts were called "anuses" instead of breasts, no one would have a problem saying the word "anus." There would be anus cancer walks all over this country. It's not the word, but the body part it names that makes people uncomfortable. I call it the "yuk" factor. But as my wonderful colorectal doctor told me when we were discussing this--"Everybody has one"--anus, that is. I pretty much pick and choose who I discuss my type of cancer with and if anyone seems uncomfortable with it, I just remind them that it happened to Farrah Fawcett, it happened to me, and it could happen to them. When they say "I thought you had breast cancer," I just say with a smile "I dare to be different!" I also like to throw in there a little food for thought by asking this question--"If you had to lose either your breast or your anus, which one would you prefer to live without?" Hmmmmmm. Anal cancer is bad, breast cancer is bad--it's all bad. Love you Michele!
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Michele...your husband spoke the truth. If you had spoken up, they would have just cut out that segment. I think it's going to take time to de-stigmatize anal cancer, but you have done a fine job so far of battling this.

Mari
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So sad but so true:(
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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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