We've Survived Bladder Cancer, But Live With the Effects of Surgery. Tough Love Isn't What We Need
Bladder cancer survivors and a therapist share the realities of living with a stoma, why well-intentioned words can be hurtful, and how to be there for loved ones as they rebuild their identity.
There is a time when "tough love" isn't appropriate. And when a spouse, family member or friend is dealing with the consequences of bladder cancer, that is certainly not what is called for.
While space limits any in-depth description, bladder cancer can go from something that is easily treated, to requiring removal of the bladder (cystectomy). Urine is then emptied in several ways, one of which is an ileal conduit (urostomy) diverting it to an external pouch the patient wears and empties several times a day. That is the basis of today's story.
"Mr. Beaver, I am a member of a bladder cancer support group — all older, former military, as are many of our wives. Your recent articles on putting off estate planning are so relevant to people like us who suddenly face a world turned upside down, where a power of attorney for health care, and so many of the topics in your columns, are instantly important.
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"We appreciate your compassion for the people you write about and would like you to discuss the emotional consequences of losing your bladder, and often other organs, to bladder cancer — and what family members and spouses need to understand.
"There are so many times when 'tough love' isn't what we need. Often, those closest to us do not realize that when 'accidents' occur — and we leak or wake up soaked in our own urine — emotionally, we go from adult to a three-year-old in an instant, fighting to hold back tears. Thanks, 'Teddy,' Atlanta."
I phoned Teddy. His story matches that of thousands of men and women, I've learned, who, like most of us, were focused on tomorrow — making plans for the future, putting savings to good use on a European cruise long envisioned, studying brochures, watching YouTube videos — when suddenly it all changed.
As Teddy described, "It all began when I stared at the toilet bowl and realized that I was urinating blood, a common first symptom of bladder cancer."
"This led to the removal of my bladder, the surgeons creating 'plumbing' to collect urine," Teddy told me on a speakerphone call with members of his support group. "It is the most unnatural thing you could ever envision. Suddenly, your life is changed in such a dramatic way."
Other members of the group described their own grief and distress at losing control over their body:
"When I am alone, I look at myself in the mirror and cry, a hideous red bulge sticking out over which I have to place this pouch, change it twice a week and [use] a night bag in the evening."
"They removed my prostate, making me less of a man. I am so ashamed of myself, and guilty of what I am putting my wife through. You can't imagine how it feels when you are watching TV with your wife and feel wet. Anger, frustration — not again! And so you race to the bathroom, take off your clothing, throw everything in the tub, and get the materials ready to replace the pouch. I just hate it!"
I don't want tough love
What moved me most of all during our lengthy conversation was the emotional disconnect from their wives, so I got in touch with Singapore-based psychotherapist Bernadette Chin, who has worked with bladder cancer patients.
I started our conversation by asking what ostomy and bladder cancer patients need most from their spouses or caregivers during difficult moments.
"The most crucial thing is a compassionate presence as opposed to an analytical, problem-solving presence," she explained. In moments of shame and grief when an accident occurs, and the person is left soaked and vulnerable, they have an immense need for physical comfort, like a hug. They want help with cleaning up without any fuss, and to be surrounded by empathetic and validating smiles.
Tough love, or comments like, "just get over it," amplify their shame, while a soft, gentle touch and an empathetic presence reinstates safety.
What other responses from partners feel hurtful or dismissive, even when well intentioned? Hearing, "be a man," or "there are bigger issues," can suggest your emotions and grief are being dismissed, Chin said, and can erode the bond of confidence between you as a couple.
One of her clients, a veteran, said that the advice from his wife to "pick yourself up by the bootstraps" was a gut punch — it resonated with the military conditioning that was present, while also being ignorant of the fact that he felt helpless.
We also discussed the dynamic shifts in marriages with military backgrounds or "tough it out" communication styles. "These couples many times thrive on the value of stoicism, yet when it comes to facing the life situation of having undergone a cystectomy, it flips the script," she told me.
When a "strong" partner becomes dependent, this creates a role reversal that can foster an emotional withdrawal or resentment. Men may hide accidents from their spouses as a way of protection, Chin explained, and this creates secrecy and emotional distance within the relationship.
"In military background couples, the element of being highly independent clashes with their sense of vulnerability. However, with therapy, many are able to reframe this emotional vulnerability so that it becomes a shared strength."
I am here with you
What else can help those who've lost their bodily autonomy? Patients often talk about losing their dignity, Chin said. This loss can often lead to depression, anxiety and withdrawal from intimacy.
But the process of rebuilding their identity can be broken down into simple steps. One of those steps is the use of mindfulness — staying anchored in the "now" rather than dwelling on the past or worrying about the future, she explained. "It is also very important that the spouse demonstrates the same acceptance."
And how can spouses and partners show up better, even when they don't know what to say? "Listen and don't try to fix," Chin said. "You can do much when you say, 'I am here with you.' It could be a calming hand on the shoulder in silence that supports and is a form of consolation more than all the words."
Bernadette Chin's website is www.innerchildclinic.com and is well worth spending some time on.
Dennis Beaver practices law in Bakersfield, Calif., and welcomes comments and questions from readers, which may be faxed to (661) 323-7993, or e-mailed to Lagombeaver1@gmail.com. And be sure to visit dennisbeaver.com.
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