Cancer - Patient Branding, Coping and Faith
I have noticed a recurring theme in some cancer blogs, not to mention the comments following, in regard to words that are used to describe a person who has been given the cancer diagnosis. Many people are living longer because of advanced technology and drugs. However, patients with rapidly advancing and aggressive forms of cancer are put, involuntarily, into categories that brand them according to how advanced their disease is. Recently, a young woman tweeted that she was not welcome in a breast cancer support group within her hospital because she had metastatic breast cancer, and therefore, wasn’t categorized as a “survivor”—at least not yet. Not only is that cold and cruel, it is discrimination, which is against the law. This kind of attitude must change, and it must begin within the healthcare institutions themselves. This comes from blatant fear, and no one should be allowed to head a support group that fuels such division and heartache, especially when someone is asking for help at their most vulnerable and desperate time of life. Because of this bigotry and hierarchy, many have become resentful of words like “survivor”, “warrior”, and “thriver”. It is causing a rift in the cancer community.
Clearing the Air: False Hope and What really is Prevention?
Another subject giving rise to resentment is the issue of “false hope”. The second one is regarding the opinion that breast cancer is not preventable. Two of my Twitter friends and I decided to tackle these subjects and write about them from our own individual perspectives. These are sticky subjects, but they need to be fleshed out. AnneMarie Ciccarella @chemobrainfog Chemo-Brain wrote a Storify blog called “We Cannot Prevent Breast Cancer”, and Lisa Bonchek Adams @AdamsLisa wrote a post called “The hidden dangers of hope”. Now it’s my turn, and mine will be on Faith. But first, let’s look at these issues from both sides of the coin. The conversation must go on so that the division will cease, and the cancer community can support each individual, no matter what.
The grief from the loss of a loved one is bad enough, not to mention the insanity of trying to figure out the “why”? The futility (Webster’s: without success; hopeless) that is left certainly leaves room for these common emotions that I have mentioned above. Cancer patients have a lot in common. We don’t need to lose the camaraderie-- we need each other too much. So below, I will discuss each one: Prevention; Coping Not Hoping; and Faith.
Prevention vs. Lowering the Risk
If you have read any of my articles on Nutrition you know how I feel about fresh food; it has built-in substances that enhance the immune system. AnneMarie Ciccarella is a breast cancer survivor, so is her mother, her sister, and AnneMarie also has a daughter she’s worried about. She has also lost more than her share of friends to breast cancer, and so I can understand her anger with the language. Our cancer terminology should be updated to be relevant to the times we live in. Maybe we should change our language to say that this kind of lifestyle of eating can “lower the risk” of getting cancer, instead of “preventing” it. There is a lot of clarity in that language. Prevention makes you feel like you’ve got to “measure up”. “Lowering your risk” immediately gives an option, which gives empowerment.
Coping Not Hoping
This brilliant and sensible term was left by a commenter on Lisa Bonchek Adams blog about false hope. Lisa brings clarity to this sticky subject using a story within a novel paired against current reality. Her piece is brilliant, and the comments alone are priceless. Thinking on my own life and what I’ve had to deal with, I have hoped, but as much or more than that- I’ve coped. Dealing with chronic immune system compromise and chronic lymphedema is hard. I don’t get up every day and just hope my day will go good, I have to work at it. So, along with Lisa and all the commenters that agreed with her take on this matter – I’ll have to agree, except that I’ll leave in the hope. So, for me—it’s Coping and Hoping!
This topic I decided to tackle, in particular because I’m a born-again Christian. As far as prevention goes, I will be the first to tell you that I have tried my best to keep up a lifestyle of sensible eating, based on how I was taught by my dad, to “lower my risk” of recurrence. But to say I’ve done it with perfection is laughable. Do I do take-out? Yes! I just try to be sensible about what I order, and sometimes there are no good options, I just need to eat. Period. Do I belong to a gym? No. Do I regularly exercise? No. With lymphedema in both legs, I found out early that most exercise, with the exception of light walking, only aggravated the condition. So, you see, I cope. Now that I have the lowering risk and coping taken care of, I’ll cover faith.
Faith has been a lifestyle for me since I was 9 years old. I know that without it, I would certainly have lost my mind. I don’t know why some live and others die. That is a mystery. But I do know that my faith has strengthened my heart, enabled my mind, and kept me when I didn’t have a mind. There are stories that I could tell you about where I came through impossible situations without natural explanations, and there is not enough room here to do so. I am working on my memoir, and some of the stories will be in there. I know because of grief and loss that many people get angry and resentful. They can’t figure out the 'whys' and therefore lose their faith and their hope. Because I understand that, I am going to go farther into this subject on my blog. Visit my blog, Color Me Well for more on my take on faith.
I think it’s time that we let ourselves off the hook. We have all been through enough. Some of us are the patients, some are the caregivers, and some are the ones left behind. Take it from one who has been in the ranks for twenty-nine years, that cursing the darkness is wasted energy. Believe me, I’ve done it. You will find your peace in the good; in the bright things of life; in the love that still exists in this world. Love is still here.
As for what name you want to call yourself--that is your decision. The names we give ourselves are not trademarked. Whatever it takes for you to cope, do it. Whatever name you want to give yourself, you are free to do so. That, along with your attitude towards your situation, is and will always be-- your individual choice.
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