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Cancer is a Journey, Not a Battle

posted on September 19, 2018
Advocacy ● Family Experiences ● From The Heart ● News
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I cringe every time I read or hear someone is “fighting cancer or battling cancer”. This language implies a war, which means there is a winner and a loser. I’m betting you know someone who died from cancer and you also know that person was anything but a loser. I realize it’s difficult to know what to say when someone is diagnosed and things like, “You’ll win this battle,” have become a likely platitude. I doubt, however, anyone would say Sen. McCain or Aretha Franklin were losers, and yet they “lost their battle.”

“Fighting cancer” became popular when President Nixon declared a “War on Cancer” in signing the National Cancer Act of 1971. This act increased research funding and activism for cancer research, which was needed. Cancer research is expensive, time-consuming and draining. As Dr. Suneel Kamath, chief fellow of oncology at Northwestern Hospital said, “The ‘war’ maintains strong funding for cancer research and keeps morale high among the ‘soldiers’… cancer researchers.”

In this sense the war metaphor works; motivating researchers to fight; encouraging activism on behalf of patients; creating pressure to fund research. So let’s use it to push for a cure, but not to label cancer patients losers or winners.

My son, Michael did not survive medulloblastoma, but I don’t know of a braver, stronger, tougher person. And that’s not just Mama talking. Anyone who saw the bald headed kid playing basketball or baseball at the Bulls Sox Academy would say so. Anyone who watched him struggle to finish every Cross Country meet knowing he hated being last when he was used to being first would say so. Anyone who watched him let go of every last ability… reading, walking, eating, and talking with such humor and grace would say so.

Senator McCain was every bit the maverick he was known to be after his cancer diagnosis. He stood up for what he believed was right and made some unpopular decisions within his political party. He even planned his funeral to be an event that would bring people together and call us to be our best. When someone like Michael or Sen. McCain dies from cancer, their deaths are about timing. They died because cancer research failed to find answers for them in time not because they lacked toughness or desire.

Let’s remember the ‘battle’ metaphor implies incorrectly that surviving cancer is mostly about fighting hard and staying positive. A good attitude helps, but the greatest predictor of surviving cancer is the stage of the cancer, how aggressive it is and the available treatments. Surviving cancer is always the goal, but the real test for the cancer patient is how does he/she live with cancer? Given the burdens and darkness of the disease, can he/she still choose life? Choose to live as fully as possible, choose to stay in relationship to others and the world and make a difference where he/she can?

My son, Michael, Sen. McCain and Aretha Franklin may have “lost the battle” in the way we typically think of cancer deaths, but they sure as hell won the war. They continued to live despite their diagnosis and the burdens they carried. Cancer ended their lives, but it did not beat them. Let’s save the war metaphors for research because we must not rest until that battle is won. For those who are diagnosed, they carry burden enough without the weight of having to win a fight that is often mostly beyond their control.

I would invite us to ask ourselves, what other ways we can talk about living with cancer that are loving, encouraging and invite patients to stay engaged with life and hope for the future? In this way we help give cancer patients a perspective that is beyond simply winning or losing.

So will you please join me in changing the way we speak about cancer and the people going through it? Can we agree it is a journey, not a battle or a fight? Can we agree no matter the outcome, all cancer patients deserve the best care, the best research, more funding as well as our prayers and support?

We would love to hear your ideas and continue this conversation.

You can share your comments directly on this blog post.  We will also be sharing this post on social media where you can leave your comments and engage in the conversation. Of course you are welcome and encouraged to share any of our blog posts as well.

Patti Gustafson
Patti Gustafson is Michael, Bridget and Ian's mom and has been fortunate to be married to Al for 30 years. She's been grateful to live most of her life in Naperville surrounded by her family and life-long friends. Her role at the Swifty Foundation is Chief Operating Officer.... which sounds impressive but really means she pitches in where she is needed!

Comments 9

  1. Lori Nelson
    February 12, 2020 • Reply

    Patti,
    Your words are spot on and I appreciate the reminder. My significant other is undergoing treatment for Acute Myeloid Leukemia. It has been a rough ride from the start but on the upswing now and we constantly remind ourselves that this is a marathon, not a sprint. Thus, we remain steady at the helm and take one day at a time.

    All the Best,
    Lori

  2. Kim
    June 8, 2020 • Reply

    Thanks for the great message. May I also add please don’t ever tell someone that they’re tougher than cancer. I was told that many times and I would disagree with them knowing, as you stated, that most of the journey is beyond our control. I pray for researchers to win this battle!

    • Patti Gustafson
      September 15, 2020 • Reply

      Kim,
      Wow, I hadn’t heard that one before. That’s really rough. That means all the kids like my Michael were NOT tougher than cancer and who would want to infer that? I’m sorry you had to hear that so many times. People do mean well, but until they hear from someone who has been through it, they often inadvertently say something hurtful. I hope you are doing well. Thank you for this insight.
      Patti

  3. James
    March 17, 2021 • Reply

    Losing a fight or battle does not make anyone less of anything they simply didn’t have the means available to defeat their cancer. That they fought is what makes them Special.

    • Patti Gustafson
      March 17, 2021 • Reply

      I couldn’t agree more.

  4. Frank
    August 30, 2021 • Reply

    Hi Patti:

    Amazing words from an amazing Mom of amazing children!

    As pointed out in one truly unique obituary about an incredibly cantankerous individual, the honored wanted the world to know that he did not lose the battle to cancer. The cancer died with him, so cancer did not win. It never wins.

    If the cancer situation is observed more broadly as you mentioned, the battle is really between humanity and cancer. Accordingly, the fallen all will be on the winning side when cancer becomes preventable/curable. Each case provides us with a little more knowledge on what are the causes, what treatments work well and what treatments do not. The strength and determination exhibited by those who have dealt, or those who are dealing, with cancer provides the motivation to prevail until a cure is found. I remain humbled by all of them and especially those like Michael! What a great son you and Al raised! It’s impossible not to be in awe of Michael! He serves as super inspiration as I deal with advanced cancer myself at a good bit later age.

    Go Humanity (and Swifty Foundation), Beat Cancer (and all other diseases)!

    Best,
    Frank

    • Patti Gustafson
      September 22, 2021 • Reply

      Frank,
      I loved your comment, thank you for reaching out. I hadn’t heard that the cancer died WITH him, so cancer did not win idea. I really like that, it’s helpful. Swifty has added a Prevention focus to the work we are doing and so I totally agree with what you said about prevention and that being the best cure.
      Thank you for your kind words about our Michael, and we are grateful to know he has inspired you in your journey. I am sorry to hear that you are dealing with cancer now too. I will certainly be holding you in my prayers if that’s ok with you. Sending strength and hope as well,
      Patti

  5. Vydehi Cancer Center
    November 18, 2021 • Reply

    “Great share!” Your story is inspiring to the people who are suffering from cancer. In cancer you never know how strong you are, until being strong is the only choice you have. cancer doesn’t define who you are, you do it, so keep going. Consult our Cancer Specialist – https://bit.ly/2XlEjSu

    • Patti Gustafson
      November 22, 2021 • Reply

      Thank you for your kind response. I’m glad the post talked to you about the strength of people going through cancer… and the people walking beside them.

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