THE EMOTIONAL NEEDS OF CANCER PATIENTS

  When I was first asked to speak on this topic months ago, it was rather ironic, because my younger brother, Scott, was in the final stages of his 7 year battle with Non-Hodgkins Lymphoma.  I joked with him and his wife in August, telling them that I wanted them both to come to Dallas to be my show and tell.  After all, they could address the topic from within the trenches, much more than I ever could.  But knowing the talk was in October,  I was pretty sure and they probably were, too, that he probably wouldn’t even make it till then.  As sad as that was to think that at the time, it was even sadder when it came true.  Scott died one month after that visit.   So what I am about to tell you comes from my own experience of having had thyroid cancer at the age of 39, from my 25 years of being a bereavement specialist, from volunteering on the oncology floor of Medical City Hospital for 3 years  and from two important books, both written by Jewish women.

  

    Letty Cottin Pogrebin who wrote many books, one of which was Deborah, Golda and Me, also wrote a wonderful book when she was diagnosed with breast cancer at the age of 70, called HOW TO BE A FRIEND TO A FRIEND WHO’S SICK.

    Lori Hope, who happens to be Dr. Norman Cousin’s daughter,  had been diagnosed with lung cancer.   She has written an equally informative book, called HELP ME LIVE- 20 THINGS PEOPLE WITH CANCER WANT YOU TO KNOW.  I highly, highly recommend both of these books.

   

    Getting a cancer diagnosis is, in one word, traumatic.  There is almost a “paralysis of body and mind.”  A two time cancer survivor and therapist says, “it feels like all at once, we’ve been plunged into the world of the absurd in which nothing makes sense.” (Help Me Live).  She adds, “We may feel angry at our body’s betrayal of us and deeply lonely….We fear not only death but also disability and the loss of independence.  We fear the unknown.”   Letty  writes, ‘Normalcy’ is that marvelous mindless state in which one has the luxury of taking one’s body for granted.” 
    My brother, Scott, wrote these words when he was first diagnosed:   “Once upon a time, and not that long ago, I didn’t have an oncologist. I’d never had a CT or PET scan. I regularly donated blood, but had never received any. I visited people in the hospital, but hadn’t stayed in one. I saw a doctor once a year. I’d never had a drop of chemo, and had more hair than I knew what to do with.

Fast forward to today, and look at the photo above. {It’s his very thick medical file}.  That’s my actual chart at my oncologist’s office. It’s my medical biography of the past six years. It’s so fat it doesn’t fit on the back of the doors of the exam rooms anymore.”      

   

   So what  do newly diagnosed patients need when their world has turned upside down and inside out?  “Love.  Patience.  Support.  A shoulder.  A hand.  Reassurance.  A listening ear and kind eyes.”  Every patient is different, with different needs and wants,  but every person has these particular needs in common:  to be heard, respected, understood and valued.  Most of all, to be loved.  

    Ms. Pogrebin  writes that when she became ill, she “became fascinated by the disconnect between how people treat sick people and how sick people wish to be treated…..How thin and permeable is the membrane between good intentions and bad behavior.”   Illness tests old friendships, sparks new ones, changes dynamics of existing relationships, reverses roles and much more.

    

    What I most often hear from people trying to visit the sick or dying is, “I don’t know what to say.”  But it’s really very simple.  The six words to say that are the most effective when visiting are these:  “I don’t  know what to say.”  Many people avoid visiting those who are ill,  for this very reason,  and their avoidance is more devastating to the person who is ill than your saying the wrong thing.  One melanoma patient said, “I know that my being sick scares you.  It scares me, too.  Don’t stay away from me because of this.  We don’t have to talk about it.  Just be here for me.” (Help Me Live).

    

    Speaking of not talking, I want to stress the importance of silence.  Alot of us are uncomfortable with silence, and yet silence is “unspoken eloquence.”   Again, in the simplest of terms,   G-d gave us 2 ears and one mouth for a reason.  Jeff Kane, M.D. writes:  “Be a mirror, not a window.  Listening is not about inviting people into your soul; it’s about entering theirs.”   (Help Me Live).  

   

    It’s natural to relate their experience to a similar one of your own, “but when you know that that person really needs to be heard, keep the focus on them.  Don’t worry about the wisdom you’d like to give.  Simply listening reveals your wisdom more than anything.” (Help Me Live).

    

    Sometimes, patients will seem to be angry with you.  They don’t really mean it.  They’re frustrated and you just happen to be handy.  Don’t take their anger personally.  It’s not about you.  You are not there to fix the situation, rescue them or give advice.  You won’t have all the answers.  They don’t expect you to.  Listen without an agenda.  Open your ears and your heart.  Keep your mouth closed.

     

    I mentioned not giving advice.  If you’re thinking about how to fix someone, then you’re not listening, or as my older brother says, “If you’re talking, then you’re not listening.”  When people are sick, one of the most important things they lose is their sense of control and their autonomy.  Letty writes, “Illness is the embodiment of powerlessness.”  Although you only mean to help when giving advice, it can be very hurtful, another reminder that others are in charge of their lives, not they.  First ask, say something like, “I have some thoughts about what you’re going through.  Would you like to hear them?  I won’t be hurt if you don’t.”  Always ask permission first.

   

    One thing that alot of us have said to our loved ones who are battling illness is,  “Think positive!”  Dr. Jerome Groopman, an oncologist and author writes that thinking positive has no scientific basis and is very cruel to the patient, because you are basically saying that they are responsible for their cancer or for not getting well, because they are having negative thoughts.  It’s blaming the victim.  We do this because it makes US feel safer.  We are assuring ourselves that we somehow have control.  One man wrote, and I love this,  “People want to blow rainbows up my rear...If it were a matter of being positive, I’d have been cured the first two times I had treatment for cancer!  Now I’m in my third treatment and I’m still getting the same song and dance from people and it’s frustrating.”
(Help Me Live).

    

    Another way that we often blame the patient, when we really don’t mean to, is by asking how they got cancer?  We automatically think that those who get lung cancer smoked  when 15-20% of never smokers get diagnosed with lung cancer!   My sister thought she got breast cancer because she always stood in front of the microwave oven.  My younger brother thought he got Non-Hodgkins Lymphoma, because he used to chase after the DDT truck when he was a kid.  Most of the time, we don’t have the answers as to why we got sick, and we are already blaming ourselves, so please don’t ask them why.  Three therapists wrote in one article, “We don’t blame our pets when they get cancer.  Why do we blame ourselves?” (Help Me Live).

    

        Often, people offer platitudes, because they don’t know what else to say, but platitudes actually add distance and come off as lacking compassion.  Examples: 1)  “You’re so strong.” “ By focusing on strength, you are denying them the opportunity to be weak, to crumble and to cry and to curse their disease.” ( Help Me Live).  2)  “Everything happens for a reason.” Really?  What’s the reason?   3) “You’ll be just fine.”  Nobody, not even the oncologist, knows that.  4)  “Cancer is a gift.”  One woman wrote, “What is the return policy?”

5)  “AT LEAST, you got to say good-bye” or “AT LEAST they caught it early or many other at least statements that you’ve either caught yourself saying or have heard.  This totally minimizes or even worse, dismisses a concern or worry the patient might have. ( Help Me Live).

    

    Alot of people with cancer want a break from cancer, with all of its’ appointments, tests, procedures, etc.  One of the best gifts you can give a cancer patient is the gift of laughter.  Bring them a book of cartoons or a funny movie to watch.  Leave a funny message on their voicemail.  However, in my family situation, it was my brother who was always the funny one and when he got sick, that didn’t change one bit.  In fact, HE was the one who kept up OUR spirits!  I have 3 such  examples, out of hundreds that he wrote us over the 7 years:  “ I actually have shrunk an inch due to a cancer-induced compression fracture in one of my vertebrae!  Pretty soon I won't be tall enough to ride the roller coasters at Disney!” He lived in Orlando.  (written July 1).

    Or this written last fall, when he and his wife, Fran, were having to decide between going into a clinical trial or getting a stem cell transplant:  “Since Fran and I are both last born children, decisions have never been our forte.  We’ve passed this trait to our child.  Growing up as the babies of our families means never getting a say in anything. Even when we first started dating we would drive up and down the same road in Tallahassee trying to decide which restaurant to go to.  When we bought our latest TV, we were at Best Buy for so long, that the salesperson left for the evening.  We then spent another hour with the next guy before leaving to think it over some more.  But now TV’s have turned to IV’s, and driving has turned to thriving.  We have to make our biggest decision ever in record time.”  

   One more, written around the same time:  “The headline item this time is that the big kahuna tumor that the previous chemo had shrunk in my abdomen is back.  I’ve accidentally shrunk sweaters that never came back, so this just isn’t fair.  The other headline is that one of my new cancerous lymph nodes is pressing against my right kidney, essentially blocking it, which just pisses me off. (kidney humor there.)  My left one is fine though and says hello to all of you.”

    People with cancer need compassion, not pity.  Pity is when you feel one above another person and are looking down on that person, both literally and figuratively.  (Cite the example of Jami, on her knees in front of my mother, so that she could be eye level with her.)  How did she even know to do that???  “Com” means with or together and  when partnered with passion, it means to feel with or suffer with. ( Help Me Live).   Compassion leaves no room for judgment or condescension.     

    
Finally, offer support to the caregiver, too.  They often get left out in the cold and yet, their world has also turned upside down.  They are often filled with resentment and self pity, yet have nowhere to vent those feelings.  A motto of the Well Spouse Association, a nonprofit spousal support caregiving organization says, “When one is sick, two need help.”  The patient will be just as appreciative that you are reaching out to their caregiver as the caregiver is.

   

    The following are things that patients with cancer have said that they most love hearing:

1. I’m so sorry that this has happened to you or that you have to go through this.
2. Tell me how I can help.
3. I’m here if you want to talk.
4. Just give me my marching orders.
5. You must be desperate for some quiet time.  I’ll take your kids on Saturday.
6. I will be here with you through this whole ordeal.
7. I’m going to the store.  Do you want to go with me or what can I get for you?
8. Can I drive you to your next Dr’s appt. or chemo?  
9. Can I pick up your kids from school, soccer practice, dance class?

10.  One day at a time.

11.  It’s normal to be afraid.

12.  It’s OK to cry in front of me.  I can take it.

13.  Leaving a voicemail, saying, “No need to call me back.  I just wanted to let you know that I’m thinking about you and sending my love.”  

14.  Do you want to talk about it or not?

15.  What’s your favorite soup?  I’m going to make you (or buy) you some.

16.  Leave a simple daily text.

17.  Send a weekly card.

18.  I know what this was like for me when I went through it (or my family member).  Tell me what it’s like for you.

19.  You are wrapped in my love and prayers.  

20.  The most important statement reported by hundreds of cancer survivors was, “I love you.” ( Help Me Live).

These work well, because they convey empathy, availability or both.

    When I told my sister, a breast cancer survivor,  I was giving this talk, she told me to tell you:  “Touch is essential!”  And I know that patients  feel so ugly when going through chemo that if their partner, spouse or loved ones just reach out and hold their loved ones’ hand, touch their arm or hug them, it makes them feel less alone, less scared, less scary and, most importantly, still loved and loveable.  Which takes me back to the start of my talk, when I said that people don’t know what to say?  Now you know.  No. Words. Needed.