Cancer is Ugly

Posted on: February 15th, 2011 by
20

Beneath an externally beautiful bathroom lurked this — decomposing wood, mold, and rotting plaster. Pretty ugly, huh?
Well so is cancer.
First a caveat: I do feel positively about cancer public awareness campaigns and events. In fact, I’ve participated in a number of them.
However, two of the many cancer bloggers I read avidly and respect, Nancy Stordahl of Nancy’s Point and Anna Rachnel of The Cancer Culture Chronicles, have made an important point: that cancer campaigns are not quite effective if they don’t raise enough money for research — which is essential if we have any chance to cure this horrible disease. I could sum up what these terrific bloggers wrote, but they say it better than I could, so please visit their sites.
By the way, I’m not just talking breast cancer here, but all kinds of cancer, including ovarian — which is highly deadly (I lost a friend to ovarian) and gets almost no publicity.
There seems to be a disconnect between our society and cancer patients. Many in today’s culture embrace the person who is “cured” as the poster child representing a brave battle against cancer. Even those who die from this disease are referred to as having “lost their courageous battle against cancer.”
Cancer is made to look pretty in TV shows and media — after all, the heroine either beats cancer and goes on with life as usual with no psychological problems or dies looking beautiful, with her loving family and friends by her side.
Yes, most movies and TV shows like to have women, rather than men, stricken by cancer. Why is that?
Anyway, while so many in society are extolling the virtue and courage and the “you-look-so-good” of cancer patients, here’s the sobering truth:
Cancer is ugly.
Here is some food for thought:
Not enough attention is spent on women with metastatic disease. Many women — young and old — have cancer that’s spread. And this is heartbreaking. Without lots of funding for research, it’s impossible to find a cure.
People with cancer are no braver or more courageous than the general population. In fact, we are a part of the general population, and we are frightened as hell. Please don’t put us on a pedestal as superheroes.
There is no cure for breast cancer in particular. Anyone who has been diagnosed with breast cancer can find that the cancer has spread at any point in their lives.
A good number of men get breast cancer. Why aren’t there sufficient campaigns and attention on these individuals?
Cancer has a long-time/permanent effect on one’s psyche. We who have been diagnosed with cancer are often afraid that it will come back, or take our lives, or that each ache, pain, or bruise is cancer. We are never the same. This doesn’t mean we don’t live life to the fullest or have contentment, but we are sometimes hijacked by the fear that cancer causes.
Words like “think positively” are damaging to the cancer patient. These words imply that the patient has control over his or her own cancer, which puts shame and blame on the patient if he/she never gets well. It is also harmful to the patient who does recover because his/her recovery is attributed to positive thinking, rather than cancer treatments and/or sheer luck. Besides, cancer patients also have the right to feel sorry for themselves at times.
Not all people on chemotherapy lose their hair. I was one of them. While it’s far better to keep one’s hair than go bald during treatments, people who don’t have cancer assume that if one has his/her hair, then he/she feels great. I did look great, but I was so horribly ill, that I would rather die than go through that again. Yet people kept telling me how great I looked and assumed that I felt good — just because I didn’t lose my hair.
Those who have been treated for cancer often have permanent, long-term effects from the disease and/or treatments. In my case, I went through premature menopause (which sucked because I wanted a child), lots of bone loss (I have osteopenia), a changed body, and surgical pain that never goes away and is a reminder of my battle with cancer.
Friends and family can be a great support or not so great. Some of our friends pull away from us during a time we need them most. This happened to me during breast cancer diagnosis, and the rejection felt worse than the actual diagnosis itself. Luckily, most of the individuals in my life were supportive.
Those who are caregivers need support, as well. It is exceedingly difficult to care for an ill loved one, and these caregivers need others to help encourage them.
Interestingly, I’m caught up as a contributor to the whole cancer societal myth. During my public speaking engagements and discussions with the public, I represent the face of breast cancer. I hear sighs of admiration and awe when people hear my story.
Yet, my job is to raise public awareness, not to tell people how heroic and great I am for facing such an ugly disease. I lost several friends to cancer and have watched another friend go through treatments for cancer and survive.
There is nothing heroic about enduring cancer. It is a human experience, not a superhuman one.

20 Responses to Cancer is Ugly

  1. Anna Rachnel had this to say about that:

    Beth – thank you so much for including my blog in this very thoughtful and comprehensive post. You got it in one. Cancer IS ugly, but for some reason we have allowed the image of cancer (in particular breast cancer) to morph into a pretty celebration of triumphant survivorship which trumps any and all other realties. And for what purpose? Because the feel-good survivor story makes society feel like it’s winning the war on cancer? Because it is a great altruistic branding opportunity? So many dynamics to think about here. But ultimately the hard facts are that we are not winning this war on cancer. Ask anybody dealing with Stage IV cancer. Thank you for listing out so clearly the frustrations and reality that you, I and so many others are living with every day.

  2. nancyspoint had this to say about that:

    Beth, Thank you for mentioning Nancy’s Point. You are so kind. This post really makes some great points. Metastatic cancer of any kind is so ignored and under funded in my opinion. And ovarian cancer, again, not enough attention. I never really thought about how it is for chemo patients who do not lose their hair. Not being recognized as “looking sick enough,” must have been really hard for you. Our society is so visually oriented. Also, I totally agree cancer permanently tampers with a person’s psyche. Sometimes I think those “scars” are worse than my physical ones. Thanks for sharing your insights on cancer’s ugliness. Oh, and interesting photo! Is that your bathroom??

  3. Kathi had this to say about that:

    This is one of the main reasons I started my blog, because even beyond all the pink, I did not get anything like informed consent when I was diagnosed. I think it’s a sad truth with cancer that, just when you are feeling most beset & most vulnerable, you find you have to make the most noise to get what you really need. One of the things that has kept me shoveling my way out of the ditch of post-treatment fatigue is working toward trying to make the experience better & to call on health care clinicians, researchers & cancer patients themselves to turn this ship around & get it on a more constructive course.

  4. annie had this to say about that:

    Bravo! Thanks especially commenting on the loss of hair vs. the way we are feeling! For those of us on targeted therapies which usually don’t cause the loss of hair, it is hard to keep up with the energy expections put on us when we don’t look sick. There is so much pressure to be positive and keep up the battle – I appreciate the fresh perspective.

  5. Michelle Mustain had this to say about that:

    Truer words were never written. I am particularly nodding my head to the superhero on a pedestal statement. Thank you for your succinct brilliance. As one also on this journey, I couldn’t agree more that not enough attention is spent on those facing metastatic disease like myself.

  6. Cynthia Morris had this to say about that:

    Beth,

    It’s brave of you to speak so honestly about this. I appreciate the way you show the complexity of this issue. Keep writing like this!

  7. Beth L. Gainer had this to say about that:

    Anna, your blog was very worth mentioning, and thank you for the kind words. Our survivor likes “the feel-good survivor story” for a variety of reasons. Perhaps it does make society feel that we are beating cancer. I also think that society doesn’t like to focus on sad realities and likes to delude itself with the mindset that doesn’t like to deal with unpleasantries. Cancer makes people uncomfortable.

    Thank you, Anna, for reading and commenting on my post.

  8. Beth L. Gainer had this to say about that:

    Oops, I meant “our society likes “the feel-good survivor story.”

  9. Beth L. Gainer had this to say about that:

    Nancy, I enjoy reading your posts, as well. Thank you for reading and commenting on this post. I agree that cancer tampers with one’s mind. It was really hard to feel so badly inside and look like everyone else on the outside. But like I said, I am glad I didn’t have to deal with hair loss. That, I’ve heard, is exceedingly difficult.

    By the way, that is my bathroom. It looked great on the outside, but there were some problems beneath the surface. I took the picture without intending it for a blog, but it seemed to be the appropriate metaphor. It’s getting reconstructed and will look nice (and be nice under the surface, too) when it’s completed.

  10. Beth L. Gainer had this to say about that:

    Kathi,

    Thank you for reading and commenting on my post. What really resonates with me is when you said that when cancer patients are feeling most vulnerable, they have to “make the most noise to get what you really need.”

    Good for you to use all your medical resources to get what you want! Now I’m going to check out your blog.

  11. Beth L. Gainer had this to say about that:

    Annie, thanks for your kind words. Society can be so narrow-minded, often judging a book by its cover. And you are so right about the energy expectations! We are expected to function as if we aren’t ill or recovering from a major illness.

    Thank you for sharing your insightful opinion.

  12. Beth L. Gainer had this to say about that:

    Michelle,

    Thank you for your high compliments! I really appreciate them. Yes, the superhero-on-a-pedestal perception has already gotten old a long time ago, but people keep these views.

    Thank you for reading and commenting on my post.

  13. Beth L. Gainer had this to say about that:

    Cynthia,

    Thank you for your kind words! I really appreciate and respect your point of view.

  14. Knock knock - it's cancer! had this to say about that:

    I have another one for you ‘ at least you caught it early’ – I have been told that from day one by peole who meant well.

    That was before I completed my surgery, before the results on the patholgy report came back and before the doctor could even stage it.

    I was always so annoyed ”oh, did I ? I’m glad YOU think so because I have NO idea if I actually did!’

    Why do people say this?

    I have no idea how you found my blog, but I’m glad that you did :)

    I will link you to my blogroll!

    Michelle

  15. Beth L. Gainer had this to say about that:

    Michelle,

    Ooooh, that’s another one that is a pet peeve of mine. I got that one, too. How about this one? I was told that “at least breast cancer is the best type of cancer to have.”

    ARGHHHHH

    Thank you so much for visiting your blog

  16. Beth L. Gainer had this to say about that:

    Thank you so much for visiting my blog, I meant!

  17. Knock knock - it's cancer! had this to say about that:

    I was told that too! The “Best” cancer? ‘Xcuse me? what does THAT mean?!’

    People really don’t realize what they are doing.

    PS – your blog, my blog, what’s the difference? Heheh. We’re sisters :)

  18. Beth L. Gainer had this to say about that:

    Yes, I agree that people don’t know what they are doing or even saying when they say breast cancer is the best cancer. These individuals just like to bury their heads in the sand when they see others face this disease.

    Yes, we are sisters who are part of a club that nobody wanted to join. LOL

  19. WhiteStone had this to say about that:

    Beth, I just found your blog. Really liked your comments on your previous post about test and scan results. I live in a small town with a small town hospital and I am amazed how quickly I can get my blood results, CT/PET results, etc. Minutes for bloods. Hours for scan results. They know I want copies of EveryThing! Tact and smiles work wonders!
    In a roundabout way my decisions after a routine physical (and routine blood tests) and My request for a sonogram led to my diagnosis of ovarian. Sadly I was already III-C. Still…that was two years ago and I’m still here.

  20. Beth L. Gainer had this to say about that:

    Thank you for your nice words about my posting. Sounds like your hospital is amazing, with the quick turnaround of your test results. You sound like a wonderful self-advocate, too.

    I’m sorry about your diagnosis, and I will keep you in my thoughts and prayers. There should be more funding for ovarian cancer.

    I am so glad you are still here; keep kicking cancer’s butt! I hope you’ll visit my blog again.

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