Surprise! I have cancer.

Posted by on Jun 26, 2014 in Cancer Care, Family & Disease | 14 comments

Surprise!  I have cancer.

I have written many columns urging doctors to be honest with their patients, especially about difficult news.  Too often patients are lead on false-hope therapy rides, rather than empowered with honest information so that they can cope with their disease and future. Doctors are not the only ones who can keep a painful secret.

I admitted Sarah to the hospital late on Saturday night.  For over two years, she had been receiving chemotherapy, hormone therapy and recently blood transfusions, under the care of one my partners.  He had discussed Sarah’s limited prognosis on a number of occasions.  Now the breast cancer was spreading wildly, causing havoc through much her body.  In the bright fluorescent 3:00am light of the emergency room, her wasted body, obvious pain, visible skin lesions, agitated confusion and appalling lab tests, said it all.  Sarah had little time to live.

With the goal of confirming that everyone understood what was happening and all were comfortable with a palliative, comfort approach to care, I sat down with six family members in the ER conference room.  Around that tight space were her sister, with whom Sarah lives, her only son, 22 years old, a brother who works as a lab tech, an Aunt and two Uncles.  All live close and see her often.

Wanting to get the ball rolling, especially given that we were all exhausted at that strange hour, I started with the simple statement, “I want to speak with you so that you appreciate what is happening with Sarah and her breast cancer.”

There was silence.  A wheeled cart rattled as it rolled by in the hall.  A bulb flickered. Perhaps, I had not spoken at all.  Maybe, I was so tired that I imagined speech.

I repeated.  “Sarah is very sick tonight, because her breast cancer is growing.”

Every face in the room registered a look of shock and confusion.  Did they not speak English?

The brother finally answered; “What breast cancer?”

They must be kidding, I thought.  I backpedaled.

“What do you understand has been making Sarah so weak and ill?”

“She has a bad wound on her chest from a car accident that won’t heal.”

“Why do you think she was seeing an oncologist?”

“To get help with the wound.”

To my astonishment Sarah’s family, who is obviously both geographically and personally close, had no idea she had cancer.  Sarah had concealed this terrible truth from all of them.  Bravely, stoically, she had fought the illness, handled every pain and made every decision, by herself.

The trauma on this family because of Sarah’s self imposed isolation got worse.  They had to understand the affects of a disease they never knew existed and decide that further aggressive therapy was futile or instead make a decision to “do everything.”  In other words, go from “Sarah has a cut which won’t heal,” to “It is time to pull the plug,” not in weeks, days, or even hours, but right away; now as it were.  To their great credit, after a lengthy discussion of what Sarah had experienced, what was likely to happen, what they thought Sarah would wish, and a moment of prayer, they were able to accept the disease as well as the grim prognosis. They asked us to give only comfort care.

Sarah’s son was devastated.  His father had died some years ago.  He felt that by “lying” to him, Sarah had been deprived him of closure.  Bereavement counselors suggest that final conversations include the words, “I forgive you,” “You forgive me,” “I love you,” and “good-bye.”  For him none of this was possible; Sarah’s body failed quickly; she was dead in less than a day.  His anger and confusion will take a long time to heal.

Why did Sarah walk that hard solitary path?  Of course, I really have no idea.  I suspect that she was a private person for whom the disease was humiliating. Perhaps the idea of “the sick role” was an anathema.  Maybe, she feared a loss of control and pity.  Or maybe she never fully understood what was happening or how imminent her demise; although my partner said that just a few weeks before, Sarah remarked that she would soon die of the cancer.

I suspect that Sarah could not stand to bring her family pain.  Nonetheless, by shutting them out, Sarah hurt those to whom she was most close.  By not sharing her suffering because she loved them, she made them suffer.  She left them shaken, baffled and deserted, without the chance to cope by touching and helping Sarah through her ordeal.  The most tragic result was that when she needed family the most, Sarah ended her life alone.

14 Comments

  1. As a woman living (so far) with metastatic breast cancer, I am used to groaning and rolling my eyes whenever I hear about someone saying, “It’s not all about you!” Oops. This post reminds me that it really is not all about me in an important sense: like any major life event, our cancer affects our loved ones, too.

    Thank you for helping me become a little less selfish and self-centered. I’ve linked to this post on my blog’s Facebook page.

  2. There is so much involved in this sad outcome and, very likely, in Sarah’s decision, though none of us can ask her now. Many years ago when my father told me that I had cancer (yes, I know: why didn’t the doctor tell me? I nearly wrote a book under the post about the doctor-husband who acted as his wife’s doctor…)
    But when my father told me that I had cancer, he also told me not to tell anyone. “They’ll look at you funny,” he said.
    I promptly disregarded his advice and told those close to me. But over the many years since, I have taken a ” need to know” approach, especially as now I struggle with long-term effects of radiation and radical surgery. From lowered voices and swift changes of subject, I have learned that many people (even many who really do like us) don’t want to know what is happening, even as a health matter/disease/condition is consuming another person’s life. The very language so many people use reveals that they approve of those who “bravely put on a bright face” and “bravely keep their suffering to themselves.” And by so doing, we deepen our own isolation.

  3. I don’t understand why I had to tell the staff and counselors that the cancer affected every member of my family, and they weren’t treating just me. I finally got an oncologist that agrees with me. I’m not pretending to be brave or have a happy face, but I’m trying to get through this with as much dignity as possible.

    This poor woman made her family suffer just as much, as if she had been a drama queen that had her heart on her sleeve.

    I found out last week that my X has Mesothelioma-bad. We were married for 37 years, and my husband had a break down. He left with a young blond that quickly tired of him. As with all things, there’s more to the story than that. It’s been 10 years, but my heart is breaking. He broke his shoulder, and when they scanned it, they found the cancer.

    He was a stoic sailor that was on naval ships that had asbestos fogs from being in storms.He never complained. He ignored pain. He ignored symptoms. We just about had to tie him up and kidnapped him to get him to a doctor.

    I had the family let him know that I was in remission from an incurable cancer. That was about the time he found out that one lung is filled with cancer. They’re checking him now to see if the chemo is working at all.

    If this hurts me so very much 10 years after the divorce, I can only imagine how devastated Sarah’s family is. It’s not just that she had cancer, but she lied to them. They will always feel guilty about this, wondering what they did to her that caused her to not to trust them. They will always be obsessed about why they didn’t see her failure to thrive and didn’t talk to her.

    I sent my husband a love letter last week. I told him that he was my first love. I felt so safe when I was in his arms. I will never forget his kindness. In my mind, he’ll always be the handsome Bosun Mate that left a ship when it docked, and came to the maternity ward to make sure that I was safe. He visited me before he went to the nursery. He even had his seabag with him. I never thought that we’d grow old apart.

    The Navy nurses said, “Now, that’s a real man.”

  4. I have Stage IV Endrometrial Cancer – I have had surgery, radiation therapy and chemo. I don’t know yet if my tests will come back NEC or not. I try to brace my family with information that I might not make it but it is really hard to share. We don’t know when our cancer will win so it is easier to live with the knowing and not share. I can understand her completely.

  5. In Sept 2013 I met with you to discuss my wife’s prognosis. Less than a month earlier she was swimming on Cape Cod and walking into town. She had metastatic breast cancer for the past 4 years. If anyone asked me or her we would have said this will eventually end in death. Well it did! I was advised in Sept she had a month and a half to live, barely a month from the magic of Cape Cod. How could this be true, someone has the wrong chart… She lasted about 6 months, at home, and I dont think suffered much intense pain but on the last day I recall, over and over and over, how could she have died.
    Denial is not so hard for me to believe when the stakes are this high.

    • Did anyone ever consider Sarah felt her family were not able to handle the news? Sarah did that because she loved them dearly.

      Perhaps she did have someone to talk to but didn’t want that friend “spreading the news.”

      I would have done the same as Sarah if only I can have a do-over.

      • But they did have to handle this in the worse possible circumstances. She wasn’t honest with her oncologists. My Drs asked me if I told my family. They ask if I live alone, just what?

        Again I’ll stress the mental agony Sarah’s family is going through in wondering what they did to cause her to shut them out. She lied-she told them it was from an accident.

        Somebody said that I love you and I forgive you should be the words exchanged with a family. I don’t believe that, as it never dawned on me that counselors should set something like this up. My counselors protested. I told them to get over it.

        I know how my family feels about me. I know how I feel about them. Like the in-law that called 2 weeks ago and wanted me to to take over a ladder and a list of tools to her house (she doesn’t bring anything back and there’s a fight to get it back). I said-No- and she said–I’ll have to get a ladder from the lady next door. I don’t want to bother her, She has cancer.

        It was on speaker- I just walked off and left my son to deal with it. I bet she’ll cry a bucket of tears at the memorial- maybe even have a heart attack-her heart is medically sound. She’s a Drama Queen- that’s her problem. I had asked her if she’d be my medical proxy, so I she does know. It’s better for the family to know now that she’s unreliable. I thought that she was more than she is. She didn’t even have to visit me or go anywhere for me, as everything could be done by phone, Email, or FAX. I thought that she was a ‘rock’. At least the family knows better than to turn to her-or she might rise to the occasion-that won’t be my problem, as I’ll be gone.

        To me it’s like a drunk or serial killer that cries at sentencing that they didn’t mean to kill anybody and they’re sorry-meaningless-part of a waltz caused by self-pity and wanting to look good. Real forgiveness comers from the heart, it isn’t orchestrated by people that are paid to do this. Real love isn’t facilitated and brought by group think and peer pressure-say it so granny feels good. I understand Sarah might not have wanted to go through this, but if Sarah had wanted to avoid false dramas, she should have told them the truth.

        Sarah’s death is much different from the sadness caused by a death from a car accident. This death has been going on for months-years, and she lied to them. I feel sorry for you that you regret sharing with your family. Family members can be and usually are deeply flawed, others aren’t,

        But they still deserve the truth.

        BTW-I didn’t tell my neighbors. It’s none of their business.

  6. I can not judge Sarah or anyone who has cancer for their choices in how they handle their medical care or communication with family and friends. I used to think I knew what everyone should do. Not anymore. I have seen to many people suffer for letting others know their diagnosis because others did not want them to die or “give up.” I don’t know what I will do if faced with cancer. I only hope to be given all the medical information available to make the best informed decisions I can.

    • There’s that.

  7. Over two years of receiving chemotherapy, hormone therapy and blood transfusions. A wasted body and skin lesions that simply don’t appear overnight. The close proximity of the family and one member a (medical, I presume, since you mentioned it) lab tech and none of whom noticed anything odd. All of whom bought into the story of the wound that wouldn’t heal though this has been #1 on the “7 Warning Signs of Cancer” list for how many years now?

    I think Sarah’s reasons are more painfully obvious (within 2 or 3 possible scenarios) than any of us would like to admit and are without a doubt incredibly sad whatever her reason. However, the choice was hers and hers alone to make.

    Honesty between a patient and doctor at best should be reciprocal. A doctor can suggest honesty to a patient with respect to their family but has no right to expect or enforce it. Sarah’s only oversight may have been the lack of an advance health care directive if she truly desired to keep her family out of or sheltered from her condition. But, as we know, these documents are not always honored anyway.

    For Sarah’s son to say that she “deprived him of closure” makes my blood boil. I’ll leave it at that.

    As to bereavement counselors, if you haven’t worked out the ‘forgive me/forgive you’ dynamic before someone is on their deathbed then it simply comes across as contrived or self-serving. ‘I love you’s’ should be a daily habit with those we truly love. Saying ‘goodbye’ to a dying person, unless you are leaving the building and not returning, is akin to saying ‘hurry up and die.’ Really, are you going to say it then just sit there and wait? How do they think up this stuff?

    Not everyone has or can have the same (some would say nauseatingly, lovey-dovey) relationship that my wife and I had but death doesn’t take that away. She will always be in my heart and in my head and if religion is correct, we will meet up again. If science is, then maybe we will recognize each others energy. Who knows?
    But for anyone to say what kind of final conversation you should have and what you should say in it is ridiculous. You need only say what is important to you and you feel is important for the other person to hear. My wife said, “Thanks for taking care of me.” We took care of everything else (conversation-wise), every day.

    • You said everything so well. I think that this having a forgiveness ceremony-whatever-is for drama queens , and for counselors to feel good about themselves. When I filled out my last wishes, I marked-NO- and I got a lecture about me being bad. I told him that only people that want to micro manage and have emotional power over their families would do this. I love my family enough to respect them.

      If a counselor has to nag a family member to come see me-and tell me they love me and forgive me, it’s pretty much like a prisoner crying and saying sorry on the day they are sentenced by the judge. It’s just a show to look good to the world. .

      I really got nauseated about the question of me demanding that my family have counseling. I told the counselor in a polite way that it did nauseate me. They are adults and should be able to figure this out on their own. Maybe if a family talks to each other-they can have real healing.

  8. A woman is said to have many roles in the family… A mother, a wife, a caregiver, a nurturer… Sarah probably had taken on the role of silent protector of her family’s balance.

    There are probably countless similar stories out there, some with outcomes as grim as this one, others with a simple return to normalcy. Sadly, we will never get to know the true background.

    The relationship between patients and their families can get quite strenuous during a cancer journey – as you, like many medical professionals, are quite aware. The fact that some of these patients only get to rely on a single person, their doctor, is admirable for both patient & doctor.

    Hopefully, Sarah’s family’s wounds will heal soon and they will never hear about cancer again. Just like Sarah (clearly) wanted.

  9. Sarah might not have broke the news to her family by her way of expressing love and consideration for them. She might have decided to keep it to herself so that she wouldn’t worry them, a kind of sacrifice, or perhaps higher level of love.

    Realistically love is rather give and take,not just conceptual. I think true love is to share and be there for the loved ones in every path. If she were my family member, I’d want to know how she’s doing, help her all the way through her journey. Her family probably felt that they weren’t given the chance to show their care and love as she deserved so much. My thoughts and prayers are with her and her family.

    Just like what Dr. Seuss said. ” Be who you are and say what you feel because those who mind don’t matter and those who matter don’t mind.” That simple!

  10. “People pay the doctor for his trouble; for his kindness they still remain in his debt.”
    Credit: Seneca

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