Rare Adult & Pediatric Cancer Web Blog

I hope that you are all having a wonderful Holiday Season, filled with love and joy.  Take a moment to reflect on all that you have been through this year, the good and bad; and all of your hopes for 2008.

I am heading into 2008 with a low level of energy and motivation.  This is from years of seriously neglecting my health, finances, and well being.  So, my goal for this year is to dedicate time to getting myself in a better condition.  With that in mind, I am once again, asking for your help.  Please read this forum post and reply to it:
Volunteer

Several sections of the website have been moved around.  So, please take a moment to visit the clickable links at the top of the website Home Page:
http://www.rare-cancer.org/

My immediate goals for the New Year are to start moving the forums into the new format.  I will be doing this manually, by rare cancer group.  This will be a process, not an event.   My second immediate goal is to set up a system that will allow you to submit and maintain your own cancer journey stories on the Rare Cancer website.  I hope that will motivate more of you to volunteer your personal stories and experiences.

This is your website!  It was created for all of you so
that you can help each other share information and support.  You have the power and the ability to make it a great resource, or a great disappointment.  Participate!  Share!  Care!

Take Care,  Sharon
http://www.rare-cancer.org

Today’s news articles are discussing her completion of treatments (radiotherapy and chemotherapy).  The thing that is bothering me about most of the articles is their desire to make this sound like it was a ‘cake walk’ for her. After listening to members of our Anal Cancer Group, I have to tell you that I don’t think this was an easy journey for her.  So, I want to take a moment out to tell her that she is one tough cookie and I am so glad that she got through her treatment phase.  I pray that she stays in remission and is able to get on with her life.  You Go Girl!

Take Care,  Sharon  www.rare-cancer.org

I am working on a rare cancer symbol and ‘ribbon’.  I will have that work done this week and (hopefully) will be drafting up some bumper stickers, window clings, decals, pins, and pendants for rare cancer survivors.

At the same time, I will be writing up the story behind this symbol and why I chose to design it this way.  I hope that it will let others see how we do not necessarily benefit from research done for more common cancers.  If anyone would like to participate by sharing your story of ‘difference’, please let me know.

Take Care,  Sharon - www.rare-cancer.org

The Benefits of Online Support
Kevin Wright, Ph.D., a researcher at the University of Memphis, has studied online groups that deal with cancer. Wright, whose mother’s death of breast cancer several years ago sparked his interest in online support for cancer patients, has found numerous benefits in online support. “Online communication allows people to interact with a diverse network of people dealing with similar issues,” Wright said.

“In our face-to-face networks, we tend to communicate with people who are very similar to us. But when we are faced with an issue such as cancer, we may find that people in our closest networks may no longer be able to identify with what we are facing on an emotional level.”

According to Wright, privacy is another important benefit of online support. “Other benefits include the ability to safely disclose information to people who are removed from someone’s primary social network. Years ago, communication scholars found that people typically will only disclose sensitive information when they know people extremely well. However, there is one exception. For example, sometimes when people meet others on airplanes, buses, etc., they will disclose highly sensitive and intimate information since there is little risk that they will see the person again.”
Wright continued, “The same thing is true in online support groups. If you are talking to an anonymous person with cancer who lives on the other side of the country, it is doubtful that you will ever meet this person face-to-face. People in online groups have mentioned to me in my studies that they like the ability to disclose sensitive information about themselves in a relatively risk-free environment.”

Online support groups are, Wright noted, “relatively risk-free environments.” He said cancer patients can “sound off about problems without feeling like they are placing an excessive burden on others.” The researcher believes that “the opposite seems to be true in closer face-to-face networks.”

Finally, Wright said the Internet provides cancer patients with a vast deal of informational support. For example, if you pose a question or concern on a message board, you may receive a great deal of information – personal experience and links to professional websites, information, etc.”
Ultimately, Wright said he believes people with cancer who seek support online are “looking for people with similar problems who will understand their feelings and concerns.”
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This is so true…….

Stan

I am always so surprised at rare cancer patients when they believe that they have no information that would help another person with their cancer.  That is so wrong!

Your own personal experiences can help others with your cancer.  Online support groups allow us all to share our personal diagnosis and treatment experiences.  If we do that, after a while, patterns start to emerge.  Patterns that tell us if a particular treatment may or may not work for our cancer.

 And our personal experiences of how we got through a particular treatment can help others.  We all have a way of learning some simple techniques that helps us.  Others may not have figured that out yet.  If you share your technique, they might be able to use it to help them.  You also offer hope to others by sharing your own survivorship.

Lastly, the group itself may sometimes help a clinician or researcher access the sheer patient numbers required for clinical studies. This could help them evaluate a prospective treatment or disease aspect.

 Your participation in a group may possibly help someone to survive their disease, or could even help a researcher to beat the disease.  Please, don’t ever think you have nothing worthwhile to share.  With rare cancers, all information is worthwhile!

I am going to do a little ranting today.  As anyone who knows me well, I have spend the majority of my days, since 1998, working on websites for rare cancer patients and giving them support and information.  I work extremely long days doing this and have not had a weekend off in years.

 Throughout those years, I have had several people ‘volunteer’ to help me.  A few are sincere about it, but they seem to not follow through with any requests.  Most are not sincere.  I have even bartered with some people to try and get some help (building websites in return for their help), and they never helped.  In all these years, and all these offers, I currently have one volunteer who is actively helping.  So, you’ll have to forgive me if I am coming from a ‘biased’

 This week took the cake.  I was contacted by a lady who said she really wanted to help.  She wanted to put a smile on children’s faces and that she would be willing to do anything.  I spent several hours sending her information and some direction on what I needed her to do.  I told her she could do as much, or as little, as she wanted; at her own pace.  She wrote me back that she really didn’t want to work, she just wanted to put a smile on a cancer kid’s face!  Maybe this was my first run-in with a predator looking for kids, who knows.  But, it sure ticked me off.

I run the website, and all the systems, alone.  I live on a VERY meager monthly stipend.  I would love to be working and making some money (I am pretty good at website programming and design); but each time I try to do this, my cancer work starts taking up my time.

I have someone who wants me to build a website, for pay.  I started doing the work this week and put my cancer duties to the side.  I had to spend every waking hour for the last three days catching up on that cancer work!  It is incredible the effort it takes.  But, I have to find some outside work, or I won’t be able to pay to house the site pretty soon. 

So, I am in a dilemna.  A real pickle!  How do I find volunteers who actually want to work?  How do I find the time to do other work to earn an income?  How do I turn my back on a kid with cancer, and tell them I am trying to earn some money and can’t help them?  I can’t do that.  Total selfishness is just not a quality I have!  But, I can’t keep up with this pace either.  YEOOOOW!

Take Care,  Sharon  www.rare-cancer.org