Chin up, my ass!

Recently I have had several of my “virtual” anal cancer sorority sisters have either recurrence or advancement of their disease. In the club, that nobody wants to part of, there is much support, positive uplifting advice and general commiseration. Words of encouragement are posted. “Never give up” “Hang in there” and “Chin up” reign in the social media support freely and easily given. I am currently NED and, believe me, those words of encouragement flow freely from my own fingertips.  

I’m here to tell you that it’s all bullshit. Bullshit deluxe. I feel a bit like an ass after tapping out such encouraging words from my keyboard. So easy for me to say sitting on my “NED throne”. Who am I to tell some one “hang in there”? Seriously. Is it easy for me to say? I think perhaps it is. I have been through hell, that’s true, but it’s all surreal. The treatment. The near death experience. The pain. The respite. The recurrence. The second round. The miracle. I wrote it all down. I wrote it all up. It’s over for me for the time being. It could come back. I live with the fear but I am not my sorority sister today. I am not living this minute knowing my cancer is back, my anal cancer, the one with the reputation of taking the lives it invades. So I am here to say to my sisters on the frontline, no need to be brave right now, you can muster the courage to fight tomorrow. For now you can wallow, and allow your soul to melt into a puddle. Do what comes natural. Really? Chin up? Chin up, my ass!

Helen Marshall, Pen threw a punch at your cancer.
Pen sent you a prayer.
4 people sent you a hug.
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I believe it is good to think "positive". I also think, that it is ok to feel whatever you feel. And most of all, I wish you all get the most lovely and supportive response, that you need at that moment of expression.
I believe it is necessary to be able to express all that anger, and rage at this disease and ALL it presents, we have got to be able to get it out. And your post Michele brings out the loudest ever primal scream inside me. I wouldn't be allowed to verbalize, but I acknowledge it.
Heaven help the folks, that don't even have this website to let it out. Your being the most verbal spokesman for our fight, allows the rest of us to scream that scream too loud for human ears.
Thank you for your post!!
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Thanks Jean! I believe in the power of positive thinking myself, however, I also believe that acknowledging fear, range, sadness, frustration etc is healthy. We can be strong tomorrow. If you feel sad or scared for the moment then do it. Then, stand up from that toilet, and flush...and do what is required of you. :)
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I realize how trite it sounds each time I say/type those comments. When it's someone going through treatment the first time and they have a good prognosis, I feel I can say "hang in there" because I've been in that horrible place and I know it does get better. But when it's someone with a recurrence or at stage 4, it's doesn't seem like the right thing to say, but what is the right thing? I had a stressful summer with an elevated Alk Phos level, lots of scans, repeat scans to further investigate something "suspicious", only to find out it was just degenerative arthritis showing up on a bone scan and I'm still cancer free. When I was going thru it all, I had a hard time even breathing - I don't know how others do it. My husband was the only one who knew what I was going through because I don't like to share "possible" bad news with others and take them on that emotional roller coaster ride with me. Every time he assured me the blood levels could be off for reasons other than metastatic cancer, I wanted to respond: "Easy for you to say!" But I didn't want to alienate my only source of support at the time ;)
Easterly, Michele like this comment
I have felt exactly like this so many times--almost guilty for telling someone to "hang in there," when I know how hard it is and the reality of what Stage 4 cancer means, having seen virtual friends perish over the last 7 plus years. Sometimes those words can have such an empty ring to them.

However, the flip side of this for me is remembering how I had no one to tell me to "hang in there" when I was in treatment, at least no one who had been there, done that ahead of me. How I wish I had had that kind of support.

I think at the end of the day, we all do what we can, but it really pisses us off sometimes that it's never enough. It's perfectly okay to express that anger. But don't let it make you feel like a failure, because I know your words have helped so many people, including me. I love you, Michele, and greatly appreciate all you do for me and others.
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I think she is such a success because she is so real, and puts together a wonderful positive result. And she is so pretty!! i read all the blogs when I first found out I had AC, before BFAC.
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Hi Michele! Yeah, sometimes you NEED to just bitch. I did that a couple of times during tx and Joe just let me rail on and after I felt good. Except the time I railed on God, but my minister reminded me of Job and David's psalms. I felt better. You really went through a rough time do I hope you did your share of bitching. Have a good rest of summer. Give the chi's belly rubs from me. Love.
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Marcia, You will be happy to know that Smokey and I will be featured guests at our local Woofstock this year! He has become quite the celebrity around here. I guess I am relegated to being his "arm candy" once more! Pearl is jealous I think 😉
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Oh my gosh! I've heard of woofstock. I will google your newspapers for photos. That sounds like so much fun. Smikey is lucky to have such a pretty Mom/arm candy. Yeah, our Blanche is terribly jealous, little rascal, lol. Enjoy it and let me know how it goes.
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Marcia --- I think God totally understands when we rail against him -- as a friend of mine told me, he is a big boy, he can take it. After all, he made us in his image so I am sure he understands. I have often said that when I get to heaven, he and I are going to have a "come to Jesus" meeting ... I know in my heart that he has a plan and that his plan is perfect, but there are something that I just need to know what he was thinking....

I think sometimes we all need to rail away 👍
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PS thanks for the article -- it was awesome!!!
Marcia, Marcia like this comment
You're welcome....800 new rx's, amazing! Yes, Pastor Gary said God would rather have me tell at him than to think he doesn't exist. Every child argues with their father at some point, right? God bless.
Kh likes this comment
Right on, sister! When I thought I had a met in the lung, I gave way to terror. It's not entirely gone - still don't have a new scan/diagnosis.

I quoted this before -
Do not go gentle into that good night
Rage, rage against the dying of the light.

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Michele,
Perfect timing as usual.... I was notified today that there is no match for the MATCH trial for me and that the only thing my doctors can do is is make me comfortable . He did tell me that of all of his patients I have "endured" the most difficult and cutting edge treatments and commended me on that. I can only hope that my going through these treatments will in someway benefit others along the way.
I am taking today to wallow in my incredible sorrow that my dreams of beating this thing were dashed and although I still have a huge support and cheerleading group for me who still think there is always hope ( and my own true optimism) that a pretty picture was not drawn for me today. We talked about palliative care and hospice ( something I wouldn't let into my vocabulary until today) the need for stronger pain meds and more radiation to control my pain.... And that the lung tumors will probably be the ones to finally get me ( not my choice over the liver.... With possible infection, pneumonia etc) I'm not used to being in this low black space but I'm sure a few days will change my outlook and my need to push on will return. Thank you for putting yourself out there as one of the "chin up people" we have all done that in our efforts to remain positive. Nothing wrong with that..... But let's face it reality does have its place and statistics show that most anal cancer patients don't make it past 5 years. I typically do not pay any attention to them but this seems to be the norm and I am going to have to look at things a little differently.
Always
Maya
Maya, I can't imagine going through all you've been through and arriving at this point you're at. My wish for you is no suffering, lots of love, and a miracle. Blessings to you on your path to peace. I will continue my daily devotion to you and your life.
Oh Maya! I am so sorry for your news. How I wish it could be different for you. My heart hurts for you, knowing what you have already endured. It seems you have a physician with a plan that has your comfort on the forefront of your care and that is good. When words escape me I fall back on what I feel. I can move beyond the rage I feel on your behalf to what I feel for you as a person...and that is respect and love. I respect you for all that you've given so that others may benefit from your path with anal cancer and I love you fro your sweet and enduring spirit.
Hugs to you,
Michele
Maya -- so sorry for all you are going through. I can not begin to imagine having to wrap my brain around that type of news. I am praying that you fin peace and comfort as you walk down this difficult road.

HUGS!!
Maya,
Sounds like you and I had the same kind of day. Really sucks!!!!
I get it, Michele. Well said. It's certainly possible that every individual has an individual need for what they want to hear from others. But, we know what is common to all is that we have to first listen, with love, and sit with the emotions they have and not prescribe any emotions for them. There's nothing easy about it. And I really hate to hear that recurrence and advancement is on the uptick in your special group of soul sisters. That wholly sucks. By the way, the only throne you spend time on is porcelain. Peace to you, dear survivor.
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You are so funny Michele. I love your post. I'm sad to say today I'm one of the sorority sisters that got a bad report. My days are numbered and I'd love to laugh right through them. Although, I know that's not possible -- I have precious grandchildren that may not remember me, precious children that I want to continue to influence, and of course my beloved husband that needs me. How do I laugh until the end. I guess I'll just take what humor comes my way and mix tears of laughter and tears of sadness and hope it balances out. I love you Soul Sister
Sister of my heart...I am so sorry.
I love you back Soul Sister
Tammie, Tammie like this comment
Tammie -- my thoughts and prayers are with you.

HUGS!!
Tammy, I'm so sorry to hear the trial has failed. You are a shining star that will likely always and for all time influence your children. But that pales, I know, to being there with them. I feel very sorry for your loved ones but I know they will help you and you will help them. I hope you find lots of joy and humor in the days to come to crush the sadness. You are loved.
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I so appreciate your honesty and verbalization on an issue we all can relate to.
Although, I was lucky to be dx with stage 2 I am still counting the days until my next scan, my next DRE, my 2 year mark, and so it goes.

My family has a history of cancer on both sides. The past 2 years touched too close. Within a year out from my dx in September, my Mother was dx with pancreatic cancer. She lived only 6 months. Her death was due more in part through doctor inexperience more than the cancer itself. I had tried to get her to go to a more experienced doctor and hospital, but all she could see was a death sentence as she looked at the American Cancer Society's statistics. It made me so angry and yet so terribly sad. Here my Mother was fighting the same disease that killed her Grandmother in 1953 within 3 months of her dx. In 1957,her father died of a GI cancer less than a year of dx. Here we are in 2016, over 60 years later and where are we science wise with cancer? I do see earlier detection and better treatment with some cancers, but for some we are still so far behind.
I am amazed that we can produce amazing technologically advances, but yet be dumbfounded over genetic codes and abnormal cell mutation. How is it we as a world can spend millions on athletes, yet there is a huge gap in research funding.
Cancer is a battle and the world does say chin up, you are so strong, and on.. But what is the real choice; none. I often thought of my Mother's fight with pancreatic cancer as an allegory to the poem, The Charge of the Light Brigade."Theirs not to reply, Theirs not to reason why, Theirs but to do and die." Over 60 years between her death and her grandmother's; science should not be sitting still.
I guess in this grouping of cancer warriors, ours is "A Red Badge of Courage".
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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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