Wednesday, August 31, 2011

Journeying Beyond Breast Cancer making sense of the cancer experience


Guest Post

Today’s guest post is written by Coco. 
A treatise against a mandatory sunny disposition for all breast cancer survivors.
I always knew breast cancer would appear in my life. After nearly 12 years of bi-ennial mammograms, a lesion was detected in 2010. I was not surprised, nor shocked. I had no “why me’s” . No tears then or now. It was  - it’s arrived, as expected, they’ve found it – now, get it out.
My 6mm tumour was invasive. My only “what if” related to why I accepted bi-ennial mammograms as diagnostically reliable, when I now know with my dense breasts, they are less than 60% valid. I should have been having annual digital mammograms and with my dense breasts, a dual coil MRI as well. Many US states now require by law that mammographic operators advise women not only about their breast density score, but also what that means in terms of screening unreliability. In Australia there are no such laws as yet. Something I aim to change.
My post surgery surveillance now includes a dual coil breast MRI once a year, which costs me $690 in Australia. I also have a digital mammogram annually which, despite heavy duty pain medication, leaves me in pain for weeks afterwards, and an appointment with highly experienced breast surgeon specialist for a physical examination as well as to discuss tests results.
I needed to resume my pre-surgery exercise regime. There is plenty of evidence post surgery exercise is important in reducing recurrences and I knew how strong it made me feel. Unfortunately I had three months off while receiving physiotherapy to my arm, back and shoulder damaged during the lymph node extraction. I lost my normal exercise routine.
I saw an advertisement in the local paper for an exercise program designed specially for women after breast cancer. After researching it and finding it had solid credentials, I booked in. The exercise aspect turned out to be very good. This constituted half the program. The other half was a mix of guest speakers and for want of a better descriptor, group sharing. At the first group meeting the two women running the program announced we needed “ground rules” for the sessions. Respecting other’s confidences was relevant. As was who would tidy the room each week. I accepted that.
However when the phrase “positive attitudes only” appeared on the white board as a ground rule,  I baulked.
We were a room of 15 adult women who had already lived full lives. We had been through a lot. Some were more affected than others. All wanted to share our individual truths with each other. Sharing means potentially all aspects – not just the sunny side of breast cancer, but the dark stuff as well. Yet the organisers wanted to ban any content from the grittier side of our emotional ledger. It felt like another bit was being chopped off me. I could not obey this rule, so I opted out of the group support, despite needing it.
How many of us are either being driven away from breast cancer support services by this threshold requirement of enforced positivity? Or sit, unable to share our truths in the one place where we should be able to?
A second incident involved a friend with breast cancer, who was house bound due to severe post surgical fatigue. She joined a national online breast cancer forum for support. After making a number of posts which I found insightful, and stimulating discussion, she received a private email from the site Administrator, admonishing her for being negative in her views, claiming she could be upsetting women with breast cancer who had little children [my friend was one of them by the way - she had a 10 year old] and asking her to only post positive comments.
My friend cut and pasted this email from the forum Administrators on to the public forum site and said she felt she was being emotionally blackmailed. The Administrator then deleted all her messages and blocked her from making further posts. I carefully examined everything my friend had said. There was nothing offensive – it was raw, but patently honest. Since when did being honest about one’s experience with breast cancer morph into being categorised as abuse justifying censorship, I wondered?
When did this sunny, Pollyanna-ish attitude towards our breast cancer become mandatory?
Was it the Oprah effect, where only those who present their hardships in positive terms get the pat on the back and the prize? Was it the Louise Hay new Age type thinking that we get the diseases we deserve or need? Was it the pink fluffy breast cancer campaigns where our disease was being homogenised, and prettified in candy pink, airbrushing away the ugly bits? At what point did this evolve into something sinister, such as if you fail to have a positive attitude, your breast cancer is more likely to return or you must not express dark thoughts lest it result in other survivors relapsing? Do we say this to children with cancer? Men with prostate cancer? Where do these breast cancer Hall Monitors policing how other women describe their experiences come from? Why do they have no commitment to women with breast cancer enjoying free speech and sharing their full range of experiences?
Stories about breast cancer making us a better people are now so ubiquitous that I start to wonder if it’s so great, how come we don’t have volunteers lining up for it? Optimism about a horrible and sometimes deadly disease initially was about empowering us and making us feel more hopeful. I get it.  It has now evolved into an emotional straight jacket. Disease may indeed make some people nobler, but I suggest not all, and certainly not the majority. Disease apartheid for breast cancer survivors needs to stop. Access to support on the proviso you mouth the fashionable platitudes you do not feel is wrong.
Some people can experience breast cancer in a transformative , triumphal or even spiritually uplifting manner but sadly, this has become the socially approved response. Just like the white board rule or my friends banning. I refuse to feel the way you say I should.
Breast cancer has not made me a better person. It has not transformed my life for the better. I have not gotten some insight into a level of spirituality I was hitherto ignorant of. I have not learned to appreciate the little things. I am definitely not grateful for having it. I refuse to love my disease. I value hearing the full spectrum of breast cancer truths.

48 Responses

  1. Wow and AMEN to you sister!
    Your last paragraph: “Breast cancer has not made me a better person. It has not transformed my life for the better . . . I value hearing the full spectrum of breast cancer truths” (and your entire post) is so powerful. Your last paragraph particularly resonates with me. I have found it so incredible that there seems to be this required way we are supposed to feel both during and post breast cancer. It is foisted upon us I think. I stopped going to support groups because I felt like any variance from the line I was expected to tow was somehow my unwillingness to get with the program.
    I have not felt this from everywhere, but, I must say it seems to come from a multitude of places – the expectation that I am supposed to be more grateful and appreciative now . . . well, I am not saying my life sucks – but, I have a LOT of days that do. I feel as though the pain and suffering that I endure on a daily basis is supposed to be swept under the rug and not admitted to simply because I am currently NED. WTF? I don’t get it. I do get that not everyone wants to hear about cancer every day. But, I do grow weary from what seems to be expected of me as a “survivor”.
    I loved your post. So well written and such an important message to spread. I appreciate this very much . . . you have said what I have been feeling for a long time.
    Thank you.
    Lisa
  2. What an absolutely powerful post! It’s beautifully written and strikes at the core of what I feel plenty of times. Sometimes I laugh, sometimes I cry (still, I mourn the loss of my breasts five years later) and sometimes, like tonight, I GET ANGRY (bad news from a friend). Supporting each other means understanding that everyone experiences things in their own unique way. A true “sisterhood” should be inclusive of all. And respectful of all. I feel saddened by what happened to your friend and by your white board experience. Keeping it real is all about KEEPING IT REAL. Thank you for the raw and honest emotion you had the courage to share with us. I support YOU.
    AnneMarie
  3. At last! Someone tells it like it REALLY is for so many of us! Thanks for helping me feel less alone Coco.
  4. I too have often felt as if I’ve been swimming against the tide in how I feel about my cancer diagnosis – good to know there are more of us out there!
  5. It hasn’t always been easy to see the blessing in cancer for me, but there have been blessings – it made me refocus on my priorties in life and taught me to be more grateful for the good things I have – and there are many good things, despite the horrors of cancer treatment which I am right in the middle of now.
  6. I don’t feel I am being Pollyanish in focussing on the positive – it is my way of coping – but I do believe that we should each get to choose who we cope – and not have it dictated to us by someone else.
    • I really respect Coco’s point of view and I understand that she, and many like her, feel this way, but I would still like to raise a flag for those of us, who, chose to focus on the positive – not in a Pollyanish way – but because this is our coping strategy as Helen says – each to their own I guess
  7. While I don’t agree with those of say that having cancer is a gift, I don’t see anything wrong about choosing to look on the positive either. We can choose how to get through it and for some people the choice to not dwell on the negatives has enhanced their life and helped them to get through.
  8. While I can see the benefits of maintaining a positive attitude in life, I also see how for many it can quickly turn into the “tyranny of positive thinking”, serving only to make them feel even worse. Sounds like that support group was pretty tryannical in its attitude and Coco did the right thing for herself in leaving.
  9. And what of the school of thought which claims that positive thinking can actually CURE cancer and that your negativity is a contributing cause of the disease. How much damage has that done????
    • Absolutely agree with you Thomas. When I was diagnosed with cancer, I became a positive talk platitude magnet for well-meaning folks. “Stay positive…it’s the best thing.” or…”You can beat this thing.” – it set my teeth on edge!
  10. No amount of Louise Hay affirmations like, “I am stronger than my cancer,” or, “My body is cancer-free” changed the outcome for my wife who died of breast cancer last December.
  11. I fully believe that life is a choice. There have been times when I have chosen to stay in a negative place but when I challenge my negative mood, and shift it, I do feel a whole lot better. Having said that, I do agree with Coco that there is too much pressure on cancer patients to be positive all the time.
  12. Why does having cancer make me have to be positive all the time? It is SUCH an unrealistic expectation!
  13. I am a big believer in positive thinking, but I think that when giving affirmations to someone in a health or life crisis, you need to be really sensitive to where that person is at in their journey – thanks for the reminder Coco.
  14. I feel a huge sense of relief reading this post and am grateful that you wrote of the tyranny of positive thinking – it has really helped me feel less of a failure for not thinking positively through my cancer diagnosis
  15. Great post – there is huge pressure on cancer patients to feel and act positive and sometimes the pressure is so overwhelming it becomes as someone else say tryannical.
  16. I too get upset by people telling me to use positive affirmations to change my situation, the implication being if it doesn’t work, then I’m just not trying hard enough or doing them ‘properly’!!!
  17. Each of us has our own path and journey, for good and bad, and no-one else has the right to tell us how we feel or are supposed to feel in any given situation.
  18. I never thought positive self-talk could affect cancer patients negatively. Your post is an eye opener in this regard.
  19. Society idealizes the strong cancer survivor—the one that who made it was able to make it through through with the power of positive thinking. In doing so, it first, suggests optimism can beat cancer, and second, leaves those struggling unsuccessfully against cancer without legitimate support.
  20. Many cancer patients feel this unreasonable pressure to show optimism in the face of cancer because it is reassures the people around them and it’s what is expected of them – well done to Coco for not following this trend.
  21. Society values the positive face of cancer and this I believe creates unfair expectations for people with cancer and deprives them of an outlet for their darker fears by deeming them inappropriate weak, and possibly even prenting their own healing
  22. I felt pressure to show the sunny side in order to reassure anxious relatives and friends and even those not so close to me; a pressure to show how well I was handling my cancer. Now there were many times when I did genuinely feel positive and I actively worked on that side, but at times, my smile did not always reflect my true emotional state.
  23. I’ve been a bit puzzled by the term “my battle with cancer” or “battling cancer to
    survive it”. I wish to thank Coco for bringing this up as it’s an important discussion to have.
    Doggedly thinking positive places a huge burden of personal responsibility on a patient for
    the outcome of their disease. We don’t usually hear of “a struggle with
    heart disease” other than making the necessary lifestyle changes as medically
    advised. We read of someone “passing away after a long struggle bravely borne” as a code for cancer. But why not “after a long struggle with heart disease bravely borne”? Why is cancer portrayed as a mythical struggle which you should win with your mind?
    I can appreciate that adopting a positive attitude to sickness can make life
    more comfortable, reduce stress – but does it really radically alter the outcome?
    I don’t wish to sound unsympathetic as a cancer “survivor” myself. However,
    I wonder if placing oneself in the hands of a competent medical team is
    perhaps the key issue and not radical alternative and perhaps punitive,
    Spartan lifestyle changes. Enjoy a bit of chocolate and go easy on the
    juicer if you number is up!!!
  24. I haven’t always be positive in my talk, am sure had my angry days for pain or cause iam young and friends are partying and me taking pills on a saturday night…BUT my mind has ALWAYS been set in that am gonna make it out of the nightmare, different than before for sure!!!… The medical staff at my hospital is so much understanding and supportive, it feels like a big family, am sure bless having them as well of my own family… they told me different stories of what they have seen through years regarding positive thinking, acceptance, laughter and attitude, they are witness of patients leading their ways out of paliative care and never had recurrence. Emotions should be out of our system, all of them!! Specially the angry ones. An online support group should know better or people in total ignorance about the subject is administrator. It takes guts!! to cop this disease, if I want to cry, do; want to be mad, do; want to laugh at it, do. But as said before, I know in my heart i’ll make it. Stay strong everyone and yell if you feel like it. 
  25. Coco,
    This is an extraordinary posting, and I really appreciate your telling it like it is. You have every right to feel the way that you do, and nobody — nobody — has the right to tell you to deny your feelings. Your post was spot-on.
    A little while back, I wrote a blog called The Perils of Thinking Positively. It echoes your sentiments.
    • Hi Beth – thanks for your comment and providing a link to your excellent post, which I remember reading and commenting on at the time, but great to be able to spread it a bit wider here.
  26. on August 30, 2011 at 3:33 pm | ReplyTami Boehmer
    Ok, here’s what I’m feeling: pressure not to be positive! LOL! I’m not always positive to be sure, yet I have been criticized for looking on the bright side of my experience with metastatic breast cancer.
    I don’t think it’s right for anyone to pressure – or even worse – censor someone for expressing their true feelings. So I feel for you, Coco. Pretending we’re feeling something we’re not is an unfair expectation.
    I realize it’s easier for me to be positive because I am living well with very few symptoms or side effects. I’m grateful for that. But it pains me to see friends suffer and die and that my 12-year-old worries she will lose me someday. Hey, I worry about it, too.
    For me, I choose to feel my “negative feelings,” then let them go and focus on living each day to the fullest. I do believe there are gifts in this and every experience. It’s another f*&!ing growth experience, for sure. Sometimes I tell God I’ve done enough growing; just get rid of this cancer. That is my prayer for you and all of us.
    • You made me smile with your comment Tami :-) And I really appreciate you raising the flag for positivity too – I think the main thing we should all learn from this discussion, is that it’s ok to feel the way you feel – if it comes from a genuine place and we are not feeling pressure to show a different side than we feel, then wonderful. It’s all about being honest with ourselves and others and being truthful to who we really are – and if we can’t do that when faced with a life threatening illness – then when can we?!
  27. Bravo, Coco!
    I am not a negative person, but the whole positivity thing is one of my biggest pet peeves in regard to the perceived “correct” way to do cancer.
    Cancer patients, all people really, need to be “allowed” to feel their own genuine emotions, even when they aren’t positive ones. That doesn’t mean wallowing in negative thoughts, but in my opinion, you can’t work your way through the “ugly stuff” without first acknowledging it.
    Great post. Thanks Coco and Marie!
    Here’s a link to my post called, “Having an Attitiude” About Attitude.
    • Hi Nancy, your point about acknowledging the ugly side really hit home with many readers – thanks for sharing the link to your own blog post on this topic too.
  28. Just like there are many ways to deal with grief, there are many ways to deal with having/living with cancer. I consider myself to be a positive person overall, but I have my days just like anybody else. And I resent someone telling me to stay positive when I feel like venting, or am just plain mad about my aching arm, my fuzzy ‘chemo’ brain, my churning stomach, my missing right breast. I have a right to be mad (upset) if I want to be, even if it makes others uncomfortable for a time. I agree with NancysPoint, you have to acknowledge the ugly side of cancer so that you can deal with it.
    • Hi Mary, I would say that I too am quite a positive person overall, but again, like you, I too have my days – many days sometimes, when I do want to be positive or look on the bright side – but that’s ok too, as you say and Nancy says – we need to acknowledge the ugly, the dark side too, if that is what presents itself.
  29. Can I call a treatise against a mandatory sunny disposition for all cancer patients? I have a different type of cancer that I will have the rest of my life and we have our share of “smiley faces only” groups too. My opinion is they are doing their followers a disservice by not letting them have a true voice. On the other hand, if the people with sunny dispositions wish to band together and form their own group, I think that’s fine. They should make that clear before anyone joins. I agree with nancyspoint that you can’t work your way through the “ugly stuff” without acknowledging it, but maybe these types of people aren’t the kind to confront the ugly side of life.
    • Hi Robin and welcome – of course we can include all cancers here- I know this site is beyond breast cancer, but the feelings and emotions we share are common to all of us with experience of cancer.
  30. Thank you Coco for a very well expressed post that will resonate with many. Myself included. Best, Sarah
  31. Fantastic post, can totally relate to what you’re saying. Sometimes if I rant a bit on my blog my stats drop – it doesn’t bother me cos I’m blogging for me only but, WHY do I have to be cheerful/positive/smiley etc etc all of the time? It just isn’t like that when you’re ‘in it’.
    Great post, really enjoyed it. Chez. xx
  32. Another hearfelt Amen!
  33. This is such an important post for women far and wide to read. There’s no right way to deal with personal hardship, be it disease or other. I so agree with Coco that its the hall monitors that are the problem, and sometimes those hall monitors are our doctors or even our loved one’s. Emotional censorship is not limited to the rooms where support groups meet. There is absolutely nothing wrong with looking for and finding the positives in life with cancer, just as there is absolutely nothing wrong with feeling and expressing the many, many negatives of cancer. I wish just once, one of these women’s/cancer magazines would make room for a voice such as your’s. Thanks for the honesty.
  34. Thank you for this. I have wrestled with this so much. I keep wondering if I’m in some way spiritually lacking. It’s nice to know that I am not alone.
  35. Brilliant post Coco. Nailed it! This culture of positive thinking is undermining any real progress in moving the breast cancer status quo forward. We’re all just too busy transforming, being grateful and fighting the good fight to open our eyes to the fact that so many women are still dying horrible deaths from this disease despite all the feelgood pink promises. Thank you for your honesty and adding your voice to the growing band of truthtellers.

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