Talking -- or Not Talking -- Can Give Cancer Patients a Sense of Control

This news article has expired. Below you will find a short description about the news article and comments that were left by CancerCompass users.

Making decisions about who they wish to communicate with is empowering, study finds

 

10 Comments

Sat Sep 10, 2011 01:40 AM

I am so happy that someone has started looking at this issue.  Although we are all aware of the caring of family and friends and the curiosity of aquaintances, the cancer patient is overwhelmed by other's "feelings".

After diagnosis, there is a numbness and then a terrible fear sets in.  As for me, I had been an RN (Oncology and Nursing Administration for 30 years), knew the technical and thought I knew some of the psychological issues associated with diagnosis.

What astounded me was my reaction to other's reactions.  At a time where I'm looking for reassurance, confidence and hope, I found myself comforting others.  I saw the fear of death in their eyes which only increased my anxiety and depression. 

Of course, my immediate family knew at the time of diagnosis.  I chose when to tell extended family at a later date.  After 18 months, I finally told my next door neighbor.  I have found it easier to manage this way than to try to console and convince others that all would go well.  In other words, if there was no reason for them to know, they did not know.  This proactive stance actually provided me with a sense of power over myself. 

Sun Sep 11, 2011 08:00 PM

This is great information, especially with facebook around.  I am so happy to have all the family and friends that we have but can you imagine reporting to everyone?  I tell my Mother and she tells the rest of the family.  We tell his Mother and she tells the rest of the family.  Friends we run into tell the ones they know.  You just don't know what you are going to hear from someone.  For example, we walked up the street today and the very good neighbor driving out of his driveway and sees my husband looking pewny and weak and shakes his hand and pulls him to hug his neck as he keeps rolling (**).  We think we are going to beat this thing and they think not!  It just makes me so mad. 

People think I'm not telling them everything.  Like my Dad and his Mom.  I try to understand.  What do they want me to say? 

Mon Sep 12, 2011 02:15 PM

As caregiver I was very happy when another cancer patient encouraged my husband to share the information with our family, (especially our children) and close friends. I really needed to be able to talk to someone.  I respected his decision initially and waited for him to openly share. Once he agreed that it was okay if people knew, I did share with our church family.  Prayers are important!

Wed Sep 14, 2011 10:28 PM

I told everyone pretty soon after I was diagnosed, it didn't matter whether they were family, friends, at work, or people I met on the street - they all got told and I didn't keep anything back.  Face to face, telephone, email, message boards,  I even started a twitter account to send out updates.

I think it helped - there was never a time anyone had to pretend and I didn't have to hide anything.  And it did prompt a lot of people to get checked who wouldn't have otherwise.

 

 

Thu Sep 15, 2011 12:50 AM

I was willing to share my cancer diagnosis as soon as the biopsy identified it. Though many people don't know how to handle communicating with me, due to most likely to the fact that they just don't know what to say, many have offered support and prayer, which is most appreciated. I also discovered a website called "Caringbridge.org." It allows a patient with any health issue to post their initial diagnosis, how they're coping, etc. Then periodically one can update what is happening with his or her treatment, and in general what's going on in their life. Friends and relatives are notified by email of one's posting and can log into the site. It saves a lot of communication woes and they can leave messages for you. I highly recommend it, particularly for cancer patients.

Thu Sep 15, 2011 12:50 AM

I was willing to share my cancer diagnosis as soon as the biopsy identified it. Though many people don't know how to handle communicating with me, due to most likely to the fact that they just don't know what to say, many have offered support and prayer, which is most appreciated. I also discovered a website called "Caringbridge.org." It allows a patient with any health issue to post their initial diagnosis, how they're coping, etc. Then periodically one can update what is happening with his or her treatment, and in general what's going on in their life. Friends and relatives are notified by email of one's posting and can log into the site. It saves a lot of communication woes and they can leave messages for you. I highly recommend it, particularly for cancer patients.

Thu Sep 15, 2011 12:57 AM

When I was diagnosed with thyroid cancer my daughters were teenagers.  Although they were told that my cancer was very treatable and I was not going to die from it, I felt that I had to strong at all times and never show any doubt or even fear of the treatment or else they became very upset.  As well friends and family did not know what to say.  I found some even changing the subject when I started talking about my cancer.

Thu Sep 15, 2011 10:36 AM

I have been 'dealing' with 'The Big C' for a long

time, initial diagnosis: Stage 2, Breast Cancer

(1976); then it RECURRED: Stage 4, other breast

AND significant 'lymph node involvement';  THEN,

it METASTASIZED (2005):  brain-mets; the mets

are on their 3rd recurrence: (2006 AND 2009); I

'feel' 'VERY PICKY' about WHO I 'divulge' THIS

INFO to --- especially since I have 'opted-out'

of ANY and ALL treatment (since 2009).

AGE: of your 'confidante', can ALSO play a

'big role' in how 'they react' to YOUR diagnosis.

The retirees, I've MET, immediately 'envision

YOU dead'.  That's HOW 'it used to be', and 'they'

cannot 'let their (former) feelings GO'.

Most '20 somethings', are bubbling with enthusiasm --- and cannot 'Wait to tell you' about the 'latest treatment' they've  'read about, on-line'.

In the 'middle' are the 'BOOMERS':  some are optimistic, BUT many others are NOT.

What 'I think' is that one 'needs to know their audience', AND "be prepared for ANY reaction."

Thu Sep 15, 2011 03:35 PM

My husband chose not to tell very many people about his cancer initially.  Since I respect him I went along with his request.  I have some friends who were very upset with me about my not including them in "his disease".  That was what I told them was it is his disease and his choice as to whomever he wised to tell.  As time went on we both included more people in who knew.  Now most almost 15 mos since diagnosis all of our friends know.  It is interesting to read of the various reactions of people.  I love to share the story of a long time friend who I had lunch with while my husband was still getting chemo.  He has Bladder Cancer at an advanced stage.  Anyway, after we ate, my friend pushed her plate back and said, "so, how is he REALLY doing tell me all about it"..  I did complete with the urostomy etc.  Her response was to tell me a. "wow, he has a bag how do you like dealing with that?" and b. about her cat who had bladder crystals.  I was absolutely amazed.  I did tell her, well I didn't marry his bladder, prostate etc and I cannot believe you compare MY HUSBAND and his serious cancer with your CAT and it's bladder crystals.  There is not telling what people will say.  Not everyone is with it I guess.  If nothing else cancer has taught us who our true friends are and we treasure them.  Others are now just acquaintances.  I suspect the fear factor kicks in and people don't want to acknowledge our mortality.  We are doing fine, my husband is NED at the moment and we are so grateful for all the fine medical care and support from our true friends.  They have been awesome!

Thu Sep 15, 2011 09:24 PM

When my husband was diagnosed with metastatic colon cancer, we were both sick with grief. But a kindly nurse suggested that we attend a support group meeting. It was just what we needed! We saw so many young people there who had learned how to deal with their cancers. And we praised God that my husband did not get his cancer until later in life. We took courage, hope, and faith from the other patients and their caregivers, so much so that we compiled some of their stories into a book entitled IN SPITE of CANCER. All proceeds from the book go to cancer research.

You must be logged in to post comments.

We care about your feedback. Let us know how we can improve your CancerCompass experience.