We all had a Ball last night...

November is officially Caregivers Month, and when Marissa Goodliffe, who is Chair of SL's Cancer Caregivers Group, realised that there wasn't going to be time to recognize caregivers properly that month, she decided instead to organize a party on December 15 to honor the caregivers in our midst and to invite the caregivers, survivors, and Relay For Life groups affiliated with the American Cancer Society in Second Life. She was helped by Nevar "Santa" Lobo, Pips Fetid, and Synergy Devonshire who put together charming Holiday packages for everyone.

The Holiday Party was one of the most memorable and successful parties I have ever been to in Second Life. I really had a ball. The setting was beautiful - the castle was designed and built by Pips Fetid; the music was great, a medley of seasonal songs put together by DJ Bcreative Wilde; and the conversation and the company was wonderful. And what made it worthwhile was that so many people from the caregivers, survivors and RFL groups turned out, both to enjoy themselves and to celebrate the caregivers whose caring makes such a difference to the lives of those of us touched by cancer. I saw many old friends and made new ones. Thank you so very, very much, Marissa, Nevar, Pips, BCreative (and a Happy Bday!) and Synergy.

Trader fights back

In the latest of our "Fighting Spirit" series, Trader1 Whiplash of T1 Radio and Relay Rockers came and talked to cancer survivors and caregivers in Second Life about his personal fight with leukemia.

Trader is often called "the Voice Of Relay" in Second Life, and I have often heard him speak, but never before quite so passionately and personally.



He was diagnosed nearly five years ago. An enthusiastic golfer, he was diagnosed as a result of a routine sports medical when he signed on at a gym. After being given the scary news he was then told that it wasn't treatable... because it was too early... he lost his drive at work, his appetite, his girlfriend... and became seriously depressed.

The turning point was when other friends and family were touched by cancer. "We all have to find a source for our strength and mine comes from knowing that no matter how lousy I feel someone feels worse, that no matter how bad my cancer is someone else's is worse. When people offer me their prayers I ask them to send them to someone who needs 'em more than me." It was also around that time that he joined Relay For Life in Second Life and found a way to channel his energies into fighting back. When his white blood cell count got into the range that it needed to be treated, he was ready for his own personal battle, claiming that "...Chemo Sucks but its a lot better than the alternative. and hell, i have had worse hangovers!" (I HATE to think what those hangovers were like!)

Trader is in remission now, but he knows the importance of being surrounded by people who are there to support him through treatment. The nature of his leukemia is that in a few years he'll need treatment again. But he has learned to live with his cancer and is meanwhile back in pursuit of that one-digit golf handicap. "While I don't embrace it we have an agreement.. DON'T stop me from being me and I won't bitch about having it."

He ended with these words: "It's NOT easy to live with cancer.. and it's even harder to fight it, but as long as you have the ability to do so then damn it do it! JUST DO IT! the grass is a whole lot prettier when you are lookin down at it!"

The Road to Well Being

On Saturday, December 1, there was a Well Being Conference in Second Life, organized by Tina Marlin and Sophianne Rhode.The conference focused on Real Life personal well being, covering all aspects of well being in three major sessions: Body, Mind and Soul. The aim of the organizers was to bring together people from all paths of life to share and discuss their experience and knowledge. Individual speakers talked about their strategy to master life with all its specific problems, what personal well being means to them, and how they reach (or are hoping to reach) this goal.

I spoke in the session on Body - physical health & awareness - on the topic of "Coping with Cancer - a Survivor's Perspective". It was the first time I have talked publicly about my life as a thyroid cancer patient and about how being diagnosed with a recurrence 25 years ago took me on a journey of learning to be more assertive and to participate more actively in my own treatment decisions and care. And then Marissa Goodliffe, Chair of the Caregivers group, spoke about "Coping with Cancer - a Caregiver's Perspective".

We also exhibited there to raise awareness for the Survivor and Caregiver groups and for the American Cancer Society's activities in Second Life.

The conference was very well organised and attended, and it was an excellent networking opportunity. Well done Tina and Sophianne! I hope you will be encouraged by the turn-out and the positive response to put on more events like this.

Anyone got a stress ball?

Stress levels mounted all round when Sheeznit Naheed attempted to organize no less than 30 avi's in an interactive game of "Have you ever..." to break the ice and introduce the topic of Post Traumatic Stress Syndrome. Not everyone saw the point of the exercise, but it was a brave departure from standing in the auditorium and running through a set of Powerpoint slides. And yes, most of us DID get it, although Sheez must have been sweating bricks by the time he finished getting some order into us and explaining the rules to us umpteen times.



Then it was back to the auditorium. In real life a school psychologist in Columbine, Colorado (yes, that's right...) Sheez knows what he is talking about. And it IS a very serious subject. But, in another departure from convention, he avoided giving us a textbook definition ("you can all Google PTSD and learn a lot...") and concentrated instead on the relationship between stress and anxiety and illness. In his view and contrary to the findings in a recent study "there is TONS of evidence that avoiding negativity, being positive, avoiding stress, are all very effective in fighting cancer...". There were nods all round in the audience.



I can do no better than simply give you the chat log of Sheez's closing words:

Sheeznit Naheed: I live and work with folks everyday who are in the struggle with fear of dying
Sheeznit Naheed: or fear of living another day
Sheeznit Naheed: I know folks who have lived through hell
Sheeznit Naheed: some of whom the world will not let them forget
Sheeznit Naheed: and the strongest of them are fighters
Sheeznit Naheed: or artists
Sheeznit Naheed: or full of faith
Sheeznit Naheed: or they just ride a bike every day
Sheeznit Naheed: or they do awesome things for others in a virtual world
Sheeznit Naheed: whatever it is
Sheeznit Naheed: they LIVE STRONG
Sheeznit Naheed: and I encourage you all to do the same



And yes, there were a few Powerpoint slides. Synergy Devonshire who organized the talk is going to put them up in the Welcome Center so please go take a look. And she is compiling a transcript from the chat log - IM her if you want a copy.

The approach may have been unconventional but the message is likely to stick. And now I'm off to Google PTSD and see what more I can learn...

Understanding Post Traumatic Stress Disorder

Post Traumatic Stress Disorder doesn't only happen to combat veterans and rape survivors. As the name suggests, it can affect anyone who has a significant trauma - including, for example, a diagnosis of cancer.

Understanding can be half the battle. Come and learn more on Sunday, November 25 at 2 pm SLT when Sheeznit Naheed will be speaking on PTSD in the Auditorium, American Cancer Society island. As a Real Life psychologist, working for Columbine's school district, Sheez is uniquely qualified to talk on the subject.

LM American Cancer Society Office, American Cancer Society (82, 81, 23)

Putting the emphasis on early detection

Last week I had a sneak preview of the new Womens Health Clinic at the AMMC-Sprott Shaw college. AMMC - the Ann Myers Medical College - which was created by DoctorAnn Buchanan to test the possibilities of virtual training for Real Life medical and nursing students. I was shown round the womens' health section by Vera Zhaoying who in real life is a 4th year medical student in Holland and who is responsible for much of the build.

The main emphasis of this clinic will be on prevention and early detection. Vera showed me the four terminals in the reception area which in time will be linked to websites dealing with prevention, detection, and support topics. At the moment there are two examination rooms, one for breast and one for the female reproductive organs. The first room we went into is devoted to early detection of breast cancer and contains a mammography unit. (I "touched" the unit and was relieved to discover that it hasn't been completely scripted yet.) More equipment is going to be added, with the idea of expanding in the future to cover general womens health.

There's no doubt that visiting a womens' clinic can be a daunting experience for many of us in Real Life. So as well as being a tool for doctors and nurses in training, I can see the clinic being helpful in educating women about their bodies and the early signs of cancer, and getting familiarity with the various tests and instruments.

Dr Elspet Glasgow will be heading up the clinic.

American Cancer Society continues to innovate in Second Life

Was walking around on ACS island the other day and ran into Zeina Zehetbauer who turned out to be a reporter for SLNN. Zeina interviewed Randal Moss (R.C. Mars in SL) who is the ACS representative in SL, Synergy Devonshire and myself, about current and future developments, including the survivorship activities. See:

http://www.slnn.com/article/american-cancer-society-innovation/

Art, from the heart

I came across Artistic (Fimi) Fimicoloud's art several months ago and I immediately bought a copy of her work "Sparkle Lake Sunrise" which just literally sparkles with joy and hope. Next month marks three years in Fimi's battle against metastatic breast cancer. She is going through chemotherapy at the moment and is preparing to have surgery soon, but she agreed to come and talk to us in our "Fighting Spirit" series on Friday, November 9 about what has helped her to fight, in her talk "The Healing Power of Art".

Fimi started by using her art in real life to help her fight her own personal battle. Her painting has kept her from spending every moment wondering if her disease has spread to this part or that. Instead, her mind is filled with thoughts on how to portray the nature she so loves. She was fortunate to have an artistic background, and a strong love of nature. But as she goes on to say: "...art can heal anyone. If you are angry, pick up a black crayon and attack a piece of paper, if anger feels black to you. Let your heart lead you, and you will never go wrong."

A special feature of her paintings is that she tucks away a pink ribbon (symbol of breast cancer) into each one.

One picture doesn't fit this theme, it is Fimi's "The Warrior Woman", pictured above, with Fimi herself (her favorite avatar is a pink fox). She is a self portrait of Fimi "...from the inside. She is me, and I am her. She is all the warrior women who have fought this battle rising up from the depths of her roots she faces her enemy with bravery and self-assurance. Her shield, though armored and protective, is really her breast. S he was created when I found that my disease had returned to my breasts, leaving one hard, and misshapen. I felt frightened, and so I brought forth the warrior within me, the woman never stopping to end the fight."

When Fimi started to receive emails and letters, she felt the potential to help others see the joy in life, to celebrate. She has given talks, both in world and out, to help people to understand how art heals, and has been featured in her local newspaper and in Rob Stein's article in the Washington Post.

These words especially brought tears to my eyes: "My art, my life, is about looking forward, never looking back – looking back serves no purpose but to break one’s heart when you’re walking a path as difficult as some of us do. So instead I look forward – to that next beautiful sunset on the river."

I am proud to count Fimi among my friends. To read her talk in full please send an IM to Artistic Fimicoloud or myself. Her exhibition on ACS Island will be closing shortly as there is a lot of rebuilding planned, so hurry along there while you still can and if you can't get there in time use the SL search engine or IM Fimi or me to find out where she is showing.

We ended the talk with fireworks. Because it's about Celebration. About Hope.

Less Pain, More Life

On Sunday, November 4, Dr Ren Stonecutter came to give us a talk on The Management of Chronic Pain - or "Less Pain, More Life" - in the American Cancer Society's Auditorium on ACS Island.



Ren has been treating chronic pain in his Real Life family practice now for four years and has taken several advanced courses in its management. His talk focussed on the nature of chronic pain, why traditional pain medications frequently don't work, some of the newer medications and non-pharmacological methods of alleviating chronic pain. He also focussed on helping both patients and caregivers accept the realities of chronic pain and set realistic goals for themselves to achieve maximum health even in the presence of pain.



My favorite part was when he quoted General George S. Patton, Jr, who saw thousands of soldiers who had been wounded in combat. He once stated that Pain is like an enemy.

"You keep moving around and the enemy cannot hit you. Same way with pain. The quicker you break away from the pain, the quicker you will drive the pain out of your system. You sit too long and you will not be able to move."

Well, Ren's talk certainly helped me think differently about pain. And judging by the discussion afterwards I think it helped others in the audience. Thanks, Ren. IM me or Ren if you would like a transcript or copies of the slides.

At the end of his session, Ren referred to a booklet called American Cancer Society's Guide to Pain Control, and we put the wrong URL up on the slide. Here is the correct one:

https://www.cancer.org/docroot/PUB/PUB_0.asp?productCode=F9637.00

Fighting Spirit

Our first support group session in the "Fighting Spirit" series was a success, with Cruiser Gilman leading the discussion and talking about how he fought and won his battle with esophageal cancer, accompanied by his partner Zzeee Zaftig who is also a cancer survivor. So I have hopes that this formula will be a successful one going forward.

We have two sessions already scheduled in November:

Friday November 9 at 2 pm SLT - breast cancer survivor Artistic Fimicoloud will talk about the healing power of art and explain the message and content of her pictures - in the open air exhibition outside the Auditorium. FREE T-shirt for everyone who attends.

Thursday November 29 at 4 pm SLT - Erb Enoch talks about his experience as a male breast cancer patient - this will be in our usual venue, Hope Haven on ACS island.

Real Hope in a Virtual World

For those who missed it, here is the link to Rob Stein's article in the October 6 edition of the Washington Post entitled "Real Hope in a Virtual World"

http://www.washingtonpost.com/wp-dyn/content/article/2007/10/05/AR2007100502391.html?

Rob points out that an increasing number of major health organizations are taking advantage of virtual worlds for public health education, patient support and fundraising. His article mentions, among others, the American Cancer Society, Centers for Disease Control and Prevention (CDC), the March of Dimes, Stanford University CA, and Britain's Imperial College National Health hospital. The National Institutes of Health and Harvard Medical School are apparently now considering ways of taking part in a meaningful way.

Rob did some of his research as an avatar in Second Life and spoke with myself and several members of our Survivors group, among others, in the process of preparing this article - one of them Survivors member Artistic "Fimi" Fimicoloud who is going to be one of our next speakers.

"For Stephanie Koslow, 48, of Poughkeepsie, N.Y., her virtual life is helping sustain her as she fights advanced breast cancer" (writes Rob Stein). ""It's not real, but it's real in a way," said Koslow, whose avatar is a pink fox named Artistic Fimicoloud. "I might spend an afternoon trying on silly wings and laughing with friends. And laughter heals." "

Well said Fimi.

A Friend at the End of Your Pen

A year ago Flash Alcott became a member of the club no-one wants to be part of when he heard the words "unfortunately, we found cancer." Flash has found it useful, like many of us, to write down his thoughts as he travels this journey. He came along on Friday October 9 and gave us an introductory talk about Expressive Writing, sometimes known as Journaling, and why cancer patients, survivors, caregivers, family members, and medical staff can find it helpful. I have an edited chat log of his talk so if you would like a copy send me an IM.



Flash is at this moment preparing to give a series of workshops on Expressive Writing at a cancer center in California and has offered to set up a similar course in Second Life. IM him if you would be interested in taking part.

ACS Office News

Randal Moss who is the American Cancer Society's representative in Second Life recently announced some changes in the way the ACS Second Life Office is managed. Xandi Mars has been appointed as Office Manager and Synergy Devonshire as Making Strides Against Breast Cancer Chair. Fayandria Foley, Relay For Life Chair, and myself, Survivorship Chair, also make up the team. Woot! See:

http://slrfl.org/?p=106

SL's Relay For Life (R)

I recently came across this account of SL's Relay For Life (R) 2007 by Moo Money, which includes a video record of the Survivor's Lap. (For those who don't know it, Relay For Life (R) is the American Cancer Society's signature event and the third annual SLRFL, in July 2007, raised around $115K in real dollars!) My IM's were flashing so much at the start and during the Lap that I didn't have much opportunity to just walk and reflect or take much notice of my surroundings. So I'm extremely thankful to Moo for this record. And it is a great introduction to SLRFL for any of our survivors who have just joined and want to take part in SLRFL 2008.

SLRFL machinisma: Survivors Lap
http://www.m.secondlifeinsider.com/2007/07/28/slrfl-machinima-survivors-lap/

American Cancer Society Opening Ceremony in Second Life

Here's a few pictures and a round-up of some of the great write-ups we had for the opening ceremony of the American Cancer Society in Second Life on Sunday, September 23 and which I helped organize. Unfortunately, I had one of those SL things happen to me, my mic wouldn't work so the readings I was scheduled to give were taken over by my SL friend and soulmate, Synergy Devonshire, who is a fellow-survivor and is Publicity Chair for SL's Relay For Life 2008 among the many hats that she juggles at the moment.

During the ceremony people were able to light luminaria around the sim in honor of survivors and in memory of friends and family who have passed. And some of the survivors and caregivers read their own poetry and stories. We walked along the lit paths in silence to the music generously donated for performance during the event by some of SL's foremost musicians. Then the mood changed to one of celebration and hope, with a glorious fashion show, gala ball, and spectacular fireworks at the finish.




And did I mention that the sim crashed? Well, it did. It's disappointing when that happens although of course some would say that it's a sign of a successful event...

New World Notes
http://nwn.blogs.com/nwn/2007/09/riks-picks-fo-2.html

Rick Riel's blog "The Click Heard Around the World"
http://www.rikomatic.com/blog/2007/09/american-cancer.html

Second Life Insider
http://www.secondlifeinsider.com/2007/09/17/the-american-cancer-society-grand-opening-fashion-show/

ACS Island Opens and Fashion Fights Back - Metaverse Messenger page 13
www.metaversemessenger.com/pdf/2007/09/MM20070918.pdf

Style, song, sobs and lag mark American Cancer Society Gala
http://www.slnn.com/index.php/article/about/cancer-sim-opens/page/2.html?sid=aW2mC3nxefZAah6A

DoctorAnn Buchanan's talk about Depression and Cancer

Friday, July 13 we had our first talk sponsored by SL's Cancer Survivors group in the American Cancer Society Auditorium in Second Life. DoctorAnn Buchanan who is the founder and Director of the Ann Myers Medical Center (AMMC) in SL came and talked to us about Depression and Cancer. It is clear that very many of us who are going through treatment for cancer at the moment and even those who have just completed treatment suffer from varying degrees of depression. DrAnn's take-home message was - "Above all, if you take nothing else from this talk, remember these things: YOU ARE NOT ALONE! Depression is NOT your fault! Saying you need help is a strength, NOT a weakness."

There is a transcript of the full talk available on a notecard. If you would like a copy just IM me in Second Life.