Saturday, June 28, 2014

Emotions & Prostate Cancer

How you cope with the diagnosis of prostate cancer and the aftermath of treatment depends upon a number of factors. Some of those are:
1. Your emotional intelligence-do you pay attention to your emotions, use them constructively, deny or ignore them?
2. Your support system
3. Your Faith
4. Your previous experiences with cancer of any kind
5. The state of your current relationship
6. The attitude of your partner to your disease
7. The quality of life issues you face as a result of your treatment decision.
8. Your previous history of coping with crisis
9. How your sexuality is tied to your identity as a man or woman.

I recently had the opportunity to write an article about emotions and prostate cancer. The link is here:
Emotions & Prostate Cancer

Your thoughts and comments about how your emotional life was affected by prostate cancer are welcome here.

Monday, June 23, 2014

Internet Trolls Inhabit On-Line Prostate Cancer Support Forums

The only image I had of a troll is that of an ugly creature guarding a bridge. He offers a riddle. If you know the answer you can cross the bridge. If you can't answer the riddle correctly you become the toll's lunch.  Recently I learned about another of troll aptly called an "Internet Troll". Wikipedia offers this definition:

A person who sows discord on the Internet by starting arguments or upsetting people, by posting inflammatory, extraneous, or off-topic messages in an online community (such as a forum, chat room, or blog) with the deliberate intent of provoking readers into an emotional response or of otherwise disrupting normal on-topic discussion. it. They must leave a comment, and not just any kind of comment. It has to be obnoxious, condescending, accusatory, jabbing and/or downright abrasive.

The last place I expected to encounter an Internet Troll doing what they do was on a prostate cancer support forum.  I wrote a post about some of the lies men believe about themselves after surgery. I wanted to discuss the ways in post-surgical depression causes us to believe lies about ourselves. Here my post:
I am attempting to develop a list of lies men believed at the time were true about themselves or about life following surgery.Usually these are beliefs that arise from men who suffer from post-surgery depression. Here's what I've got so far, if you can add to this list I'd appreciate that:

1. My partner would be better off without me
2. My sex life is ruined forever
3. I’m no longer a man
4. I’d be better off dead
5. No one could ever love me
6. Sex is no longer enjoyable, Therefore, I'll stop expressing all forms of physical affection.
7. I'm a freak
8. I'm broken
I'd hoped other men would add to this list. Instead I had an encounter with an Internet Troll. Here's how she began her attack:
"Just a thought but I think the last thing PC sufferers need is to come here and see YET ANOTHER survey conducted by RR. Please get a life Rick and save street people. You must have enough pretend books written by now."

I'm in awe of the number of  personal insults and attacks she made in two sentences. First she accuses me of harming men with PC. Then she goes on to attack not only this post but many of my posts by highlighting and capitalizing the word ANOTHER. Implying that I've hurt men with PC frequently. Then she strikes again with another personal attack by implying my posts are so useless to everyone, She concludes her attack with three additional  insults!  #1 Implying I have no life, #2 She assigns me to what she believes is a demeaning task that suits what she believes matches my level of skills. #3 She calls the book I've written a pretend book and insults me as an author.  I've experienced many personal attacks in my life but I don't think I've ever encountered so many personal attacks and insults in two sentences in my entire life. I admire her skills as an Internet troll.

She posted two other times in response to things that I posted. Here's her second personal attack::
"Men/Women come here for specific reasons, to ask questions about their PC or to answer a question. They do not come here to take part in ongoing questionnaires just so a person can make themselves feel important."

Here's another brilliant two sentence attack. In her first sentence she sets herself up as the advocate of those coping with PC. Then she attacks my behavior on the forum using the wording "ongoing" so she can continue to attack this post and others that I've written. She  mocks my credibility and motives on the forum my concluding that everything I on the forum is to make myself feel important.

In response to a third comment that I made she launches her 3rd attack in response to the forum leader calling for an end to personal attacks by posing this:
"I have posted on 4 different prostate cancer sites and have never seen before a site die the death of a rag doll like this one."

Trolls don't respond well to confrontation. So her anger and contempt is now directed at the forum leader and the forum itself by stating the forum is "dying the death of rag doll" Her contempt for the group leader, the forum and people on the forum have now been exposed. Her first attack positioning herself as a person who is trying to protect forum members from my inappropriate postings has changed direction. Her attacks are now aimed at the forum leader and the forum members of this group. What concerned me is her admission she's actively posting  on four different post cancer support forums. I'm quit sure her goal in these forums is to cause division and strife. Her comments make it very clear she's not there to offer help, information or support.

Strategies I  used in the face of this attack::
I must confess I felt hurt and I wanted to defend my honor. Sadly, I allowed the troll attacks to wound me. Yet I wanted to demonstrate to others who would read the thread just how wrong it was to call my book a "pretend book" So I wrote the following:
 Since my book became a topic of discussion (and I thank you for that) here's what people who actually read the book had to say:

1. I respect the authors for their frank and forthright discussion of prostate cancer's impact on all aspects of life, from psyche to intimacy, areas that few books touch upon with such grace and humor.

2. I completed Rick and Brenda's book prior to my own surgery this past Monday. It prepared me well, and when I came home I had all the essentials and a plan

3. If you are considering prostate surgery, read this book. It will give you an idea of what to expect. Highly recommend!

4. I found that no detail was omitted in any of the 42 chapters of this book. It has now become my number one source of information relating to the effects and recovery from Prostate Cancer. Well done.

5. I highly recommend this book as a primary source of information on prostate cancer.

6. This is a difficult read, because of the subject matter, but if you have a reason to investigate it the book is fantastic

7. This is a great book for anyone who has not undergone surgery and is considering it as well as for those who have undergone the surgery . I wish I had read it before but just the same it has been a blessing to read. I highly recommend it for couples. Thank-you for Rick and Brenda for always pointing to the ultimate source of strength in our Lord.

8. Their willingness to share a glimpse into their intensely private relationships was a tremendous help to my wife and I as we struggled with this insidious disease and the aftermath of surgery.

9. This book is quite a brilliant way to educate people of what it is with all its implications. This book is a must for anyone interested to learn more about prostate cancer, not from a medical angle, but a real angle, from the people who have lived it.

10. I appreciated the humor throughout the book. I can see how dealing with issues of masculinity and dignity could wear on one's soul, but Redner uses his honesty and humor to push forward. His pearls of wisdom will be very helpful as readers find themselves in similar situations.

After I posted this I discovered that Trolls find allies on forums. This was a comment that was directed to me from a supporter of the Troll:

"You have caused trouble like this in other forums just as you are doing in this one. You've upset people and ruffled many feathers."

This comment comes from a man who leads another Prostate Cancer Support Forum. I posed a thread there and received multiple personal attacks. As the forum leader he blamed me and said nothing to those who attacked me.I left his forum within days after I made my first post.

 Now on a completely different forum I couldn't believe the same guy was doing the same thing. On two forums  he blamed me for the discord and said nothing about those who were actively engaged in making personal attacks. To say I was discouraged is an understatement. I was also hurting. Another man chimed in defending the troll labeling my initial post a survey which in his opinion had no value to anyone.

The Forum Leader wrote a post asking people to cut it out, but his post was ignored.  By now it was hard for anyone to remember what the original topic of the thread was about. The creation of division, diversion and dissension was a  complete and total victory for the Troll.

It was now three against one. I had a supportive Forum Leader, but he didn't know how to stop the personal attacks. My anger, frustration, pain and loss of safety I felt about posting on this forum led me to the decision that it was time for me to leave this forum. That was not an easy decision to for me to make.

My conclusion from all of this is:
1. Forum leaders need to be trained to have a ZERO TOLERANCE to personal attacks. Any personal attack should be deleted from a forum thread. A second attempt at a personal attack should result banning the attacker from posting on a forum.
2. Don't attempt to converse or reason with a troll. Feeding them in any way results in additional personal attacks.

3. This is sad but accurate observation. There are people hanging out in prostate cancer support forums who are heavily invested and dedicated to use their time and talent  trying to hurt people who are already hurting
hurting as they cope they prostate cancer.

4. Asking  the forum leader to deal with the troll may fall upon deaf or untrained ears. Not every Forum Leader knows how to deal with Trolls and personal attacks. While the Leader of this forum gave written warnings the attacks continued.

5. Don't get so attached to a forum you can't leave. I'd posted on that forum for more than three years. My on-line diary had well over 55,000 page views. Here's the end result of what happened. The troll continued as a member of this forum. Those who engaged in personal attacks stayed on as members of the forum. I left to join other forums where there is a zero tolerance for trolls and personal attacks. In those forums I'll continue to encourage men and couples to discuss the emotional  aspects of coping with prostate cancer.
Though I very sad to leave, I sent a private message to the Group Leader thanking  him for his support and informing him I needed to find safe place where my threads would not begin and end with personal attacks.
I encouraged him to develop a zero tolerance to personal attacks. I asked him to send me an e-mail  if he'd make it his policy to delete all personal attacks. I'd rejoin that forum immediately if I received that e-mail.

6.  I posted the same thread in another forum. It continues to generate discussions minus the personal attacks.

Here's what another forum leader from another forum had to say when she saw what happened on my thread which was attacked:
"I go away for a bit and come back to this. I am appalled by some of the people here. As a moderator of a forum I do not tolerate for one second people who belittle, call names, put down and trash other people. They are removed from the group/forum immediately."

When she's in a leadership position in a forum trolls are stopped in their tracks and banned necessary. That's the atmosphere I believe is essential in order to make any forum a safe place to bring up personal  issues and concerns.

If you need a safe place to discuss your concerns pre or post prostate surgery I've created a safe forum where trolls are not welcome.  Every  personal attack is  deleted. I think every reasonable person would agree coping with prostate cancer is enough of an emotional challenge. The last thing you need or want is to face a personal attack when you go on-line in search for information and support.  Here's the link to our Pre & Post Surgery Forum.  I wish you a troll free experience on-line!

An Addendum
On 6/23/14 I decided to go over the Forum Leader's authority and went to the owner of the website. I sent him a sample of the personal attacks that I received. I asked him if he would train his forum leaders to have a zero tolerance for personal attacks. I'll share his reply when I receive it.

The Rest of The Story
The forum would not establish a zero tolerance for personal attacks. After many  additional personal attacks were posted,  I decided this was not healthy forum for me, so I joined a different forum where my posts are welcome.

Monday, June 16, 2014

Why Grief Over Prostatectomy Took Three Years To Resolve

After my prostatectomy, it took me 3 years to finish my grief work. Part of the reason it took so long is was that I had to wait for three years for my Doctor to say my post-surgery healing was over. Understanding when it was time to stop hoping for additional healing released me from waiting and hoping for additional improvements that were not on the way.

For me to complete the grief process,  it was important for me know and understand where I landed post-surgery. This helped me to identify and understand exactly what I lost and would not come back and most importantly knowing what I left for my wife and I to enjoy.

There is no doubt in my mind, first year was the most difficult. In the first year I had to cope with ED, diminished libido, the loss of excitement to visual stimuli, and the end of ejaculation. I spent most of the first year depressed. I didn't commit to making the best of what I had. Depression's message to me was: "Your sex life is ruined forever, give it up."

Once my depression lifted I was able to begin the grieving process. Depression leaves you stuck in grief. Grieving is a process of resolving your emotional response to an unwanted loss. If anything delays your grief work, the emotional pain and depression will interfere with your capacity to enjoy your life.

 Today I can say my wife and I enjoy what we have. Both of us believe our sex life is better and more enjoyable than our pre-surgery sex life even though I have significantly diminished post-surgery capacities.

If you want to join in this discussion visit my Facebook page for prostate cancer survivors and their partners. We are a community of men and women learning to adjust to a new life and relationship changes that occur when your prostate is removed.

Sunday, June 15, 2014

Fathers Day With Prostate Cancer

To all the dads who are coping with prostate cancer on this day, we've lived to see another Father's Day! 
Since my diagnosis with prostate cancer, I don't take that fact lightly or for granted. I begin this Father's Day with gratitude. I hope you do as well.

Some dads have faithfully raised their children and continued to be involved in their children's lives. To the dads who've been a Godly influence, to the dads who've laughed, wept, and prayed with and for their children, may you be blessed on this special day.

Today can be a painful day for both Fathers and to children especially when a father is estranged from one or many of his children.
If it's within your power to restore or reconcile a relationship with one or more of your children I urge you to make good use of this day. If it's within your power, swallow your pride to bring peace and reconciliation to your family.

To those who for whatever reason can't see their fathers or children on this day, it can be a day of sorrow. Know this: You are not alone. You have a Heavenly Father who loves you beyond measure. He has promised that He will never leave or forsake you. He may be the Father you need to spend time with today. Blessings to all!

Saturday, June 14, 2014

Why Men & Couples Coping With Prostate Cancer Grieve Alone

Grief is a multifaceted emotional response to loss,  Grief involves unwelcome and painful  feelings which may include: sorrow, misery, sadness, anguish, pain, distress, heartache, heartbreak, agony, torment, affliction, suffering, woe, desolation, dejection, or despair. 

Here's what typically happens when someone takes a risk to share their grief with other people. Unfortunately, this is a conversation taken from a thread  in an on-line prostate cancer support forum, where it's reasonable to expect your grief would be shared and understood. His grief wasn't understood and the advice he received was awful and unhealthy.

Man with cancer:
I have been thinking about mourning my loss of life as I knew it.

To not keep moving forward with excitement is to resign yourself to a rocking chair, and old memories.
Here's your "positive thinker" who says the way to get over grief is to think positively. This person has no tolerance to hear the sadness of others. Their solution to sadness involves thinking happy thoughts.

I have no doubt you "miss" your old self, some of us do. However "grieving" is not a term I would agree goes with your situation. 

Responder#2  (like most men),is disconnected with his emotional life. His experience of his life is filtered through his intellect. Men such as maybe gifted intellectually, but  they are totally disconnected from their emotional life. Their highest value is placed on rational thinking. These men are often highly intelligent,  successful in their job, make lots of money, and be a leader in their field,  yet they possess the emotional intelligence of a cow.They will discuss the philosophy of feelings but do not know how to deal with their own feelings or the feelings of others.

Here's what men and couples need to know: Grief is an emotionally HEALTHY response to loss. 

The God of this universe tells there are times in life we need to grieve:
Eccl 3:1
To everything there is a season,
A time for every purpose under heaven:............ 
A time to weep,
And a time to laugh;
A time to mourn,

The God of this universe also tells us how to respond when we encounter someone who is grieving.

Rom 12:15
Rejoice with those who rejoice, and weep with those who weep.

When someone is weeping or feeling profound sadness in response to loss, our job isn't to make them feel better or to tell them there's nothing to feel sad about. We are called to share in their grief- to weep with those who are weeping.

Sadly very few people have the emotional intelligence or willingness to share in the grief of others, so those who grieve often grieve alone. The next time you find yourself in a discussion with someone who is grieving, grieve with them rather than try to make them (our yourself) feel better.

There are many losses a man and/or couple experience after receiving a diagnosis of prostate cancer.
More often than not whatever method of aggressive treatment that is chosen also brings on additional losses that need to be grieved. 

Unfortunately, most people want to say something "helpful" to take way your pain. That's not what people who are grieving need or want. They want some to listen. There will come a time in your life when someone you know will share their their grief  with you. 

Resist the temptation to give advice or say something to make you or the person grieving feel better.
The greatest gift you could give to someone who is grieving is your silence and your time. Listen to their pain without interrupting. Then you can say something to let them know you understand. Statements like:
"I'm sorry to hear you're in so much pain" or I'm sorry your going through this, or getting over the losses you've experienced will take time and I'll be here for you now and in the future.

If you or your partner need to grieve issues like the loss of good health, of expectations of the future, or how surgery or another forum of treatment has resulted in both temporary and/or permanent losses, my wife and I wrote a book where we share our experiences with grief in order to help other couples do the same. No one should grieve alone. Our book will help you and or couples process their grief.

The title of our awarding winning book is- I Left My Prostate in San Francisco-Where's Yours? Coping With The Emotional, Relational, Sexual & Spiritual Aspects of Prostate Cancer.

 If you care to share comments that helped or hurt you process your grief regarding prostate cancer visit our Facebook page at:I  Left My Prostate in San Francisco-Facebook or leave a comment here.